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Title: Chronics - Cycles within Cycles Post by Jill on Jun 25th, 2003, 5:11am I am sorry that I have not been around too much lately, lots have happened and motivation for anything is hard to come by. I am sure that the board has addressed this before and I am sorry if it has but I need some help. I know, I know - again. ::) I have been chronic now for almost a year and a half with no meds that have brought any relief and if they did work than it wasnt for very long and with very little relief and major side affects. My question is that if chronics have cycles within cycles. I mean I was doing pretty well since Easter with the headaches (sorrry - didnt want to say anything in fear of jinxing it). I mean I still had them and lots were still bad but no ER visits since then. I was, however, taking Vicodin and Valium on a regular basis along with Celexa, Thorazine, Benedryl (then replaced with Melatonin) and a vitamin. And I just started Verapamil again. But now, things have gone down hill again and the clusters are getting worse and worse. I have been to the ER three times since this past Sunday night and two of those times were within hours. I went last night about six at night, left at around eight just to return at two this morning. Now I am so medicated on Dilaudid and benedryl (hence the no sense rambling - sorry :-[) Anyways, I was just wondering if other chronics had this, if it was rare or what. I know that some do but I am not sure about others. Also, I am wondering what other meds they may be able to try me on. I have tried everything but nothing seems to work - the last combination was supposed to be verapamil with sansert but they discontinued it. I am not sure what else to do, we are all scared right now and with everything else that is going on - this is not what I need. Not that anyone does... I may (so long as my insurance approves it) go back into the hospital for the DHE treatments or to find something else that works because taking this Vicodin and Valium as much as I do can not be good. Sorry for rambling and I hope that this makes some sort of sense - I am so 'doped' right now.... :-/ Thanks for the help and I sure hope others are well and doing good. I will try and check in more often - my head is giving me alot of hell... Thanks Jill |
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Title: Re: Chronics - Cycles within Cycles Post by kissmyglass on Jun 25th, 2003, 6:28am Hope your head stops hurting. You're not going to like what I have to say so I won't say anything..... :-X Kev |
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Title: Re: Chronics - Cycles within Cycles Post by Roxy on Jun 25th, 2003, 8:54am I'm with Kev on this one too Jill. I'm sorry you are hurting, but you're not going to like what I have to say either. Yes, I'm chronic, and yes there are cycles with the chronicness.....and those cycles can get really nasty. I have told you what my treatment is, and it is a treatment that you don't agree with, but it is the only thing that has given me PF time. Tracey |
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Title: Re: Chronics - Cycles within Cycles Post by CathiP on Jun 25th, 2003, 9:42am Okay, Jill, then I'll say it.....Kev & Roxy know it....and they know how upset it makes you, but you know I am always gonna be here, and I'm always gonan tell you what I REALLY am thinking, so here goes....darlin', drugs & more drugs.....they're NOT helping, they're making things even worse! Rebounds, fogginess, addiction...it's really compounding the problem here......if the drugs don't work-why take them? If it's just to take the 'edge off".....well, it is creating a whole new problem! Narcs are NOT the answer, Jill! Verap is gonna take some time to get into your system- you MUST give it that time, and then some time to adjust the dosage. Meanwhile, Jill, you are using some stuff which could cause you lifelong issues-and still never TOUCH the clusters! I KNOW how tough you are, and I KNOW you can fight. You MUST stay healthy and strong so you can hang tough against the beast.....you can't be that way if your body is in meltdown due to the drugs piling, layer upon layer upon layer, in your system. Give the verap a shot- a least a week......keep communication with this neuro.....and know 2 things: THERE ARE PLENTY HERE GOING THROUGH THE SAME- honey, I could name a dozen right now-4-10 hits daily-all high kips......they're in pain, they're exhausted, they're fighting- I'm looking forward to you finding that which works best for you, but you & your neuro have to keep looking for BETTER options, till you find yours. Think about it Jill- Keep finding your stars.... Cathi |
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Title: Re: Chronics - Cycles within Cycles Post by SommelierCH on Jun 25th, 2003, 9:54am Jill, Good to see a post from you again. I have little to offer except prayers and good vibes. As an episodic, I will say, that Vicodin and Valium can’t touch my Cluster Pain and they have no bearing on where the pain originates. Therefore, they fuck up the basic standard of living, with no real relief from Cluster Pain. With the cocktail of meds that you have tried, your body doesn’t know what to do. If you were getting relief, that would be one thing, but since you aren’t, change is necessary. Stop all the extraneous meds, and start from scratch, with proven Cluster meds. With a clear system, you will be able to actually evaluate them, on their own terms. Again, if you were getting relief, this would not be an issue. Hugs and Pain Free Days and Nights, David J. |
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Title: Re: Chronics - Cycles within Cycles Post by Linda_Howell on Jun 25th, 2003, 12:16pm Jill, You and probably everyone else knows how I feel about narcotics for clusters, so I'm just gonna say a huge big DITTO to what Cathi said and leave it at that. You know I'm chronic also, and yes I get a cycle with-in a cycle. I'm in one now and have been since March. Brutal is all I can say. You told me once that you had the DHE-drip, but they didn't do it correctly, and there-fore it didn't work. Maybe you could consider having it again? Tell Marty Hi from me, if he ever comes down from the lower forty. LOL LindaH |
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Title: Re: Chronics - Cycles within Cycles Post by OneEyeBlind on Jun 25th, 2003, 12:59pm Yup Jill, ditto to the above. Clean slate, no narcs, start all over. People on the board do it all the time when the meds that did work for them stop working. Ya gotta get all the "crap" out of your system ... get back to the real pain, and eliminate any rebounds. That way, you are just dealing with the clusters which suck enough all on their own ! Good luck ! |
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Title: Re: Chronics - Cycles within Cycles Post by oringkid on Jun 25th, 2003, 1:21pm I agree wholeheartedly with Cathi and everyone else. If you actually want relief, then you are going to have to detox. Completely. Off of everything. When you next go to the ER tell them NO NARCOTICS! If you choose not to detox and continue with the Valium Vicoden Dilaudid Thorazine etc, etc. Then I'm afraid, I, for one can't give you anymore advice, etc. Sherry |
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Title: Re: Chronics - Cycles within Cycles Post by cathy on Jun 25th, 2003, 1:28pm Sorry Jill but I also have to agree re-read Cathi's post it was spot on.....Clean Slate....wishing you PF times. Cathy :) |
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Title: Re: Chronics - Cycles within Cycles Post by hdbngr on Jun 25th, 2003, 1:56pm Jill: Sorry about the ramp up. I can understand the cycle within cycles. Chronic for six years. You start noticing all those extrta special details that mean oh so much to your special relationship with the CH nightmare. I'll probably get blasted for this, but I don't care. Being chronic sucks. Saying don't ever use narcotics sounds strange to me, because if Imitrex and O2 and other preventative meds like lithium and verap don't work, what's left? If the preventative and abortive meds don't work, I appreciate that pain meds can be an option. I think all medication, including narcotics, have their place. Let me clarify that by saying "as long as they are used correctly". As a chronic, I understand the need for occasional narotics, sometimes you have to do something, anything, so you know you have tried. Maybe it works, maybe not. Sometimes you have to try. However, if you are popping pills like tic tacs and then have trouble remembering if you took them because you see no benefit, it's time to do something different. Your system is full, tapped out on all that crap and it needs a break. Wean off, don't quit cold turkey. Drink more water than you think you can possibly hold, then drink some more. If you make it through the first two weeks, it gets better. A six-week break is ideal. If you do go back on the meds after that, they will work better. Then think simplicity. If you have more than three in your system, it is hard to determine what is helping. You want to control your headaches, not have the headaches and meds controlling you. Try to save the heavy hitters for when you hit rock bottom. As a seasoned explorer of rock bottom, it can be difficult to determine this, so ask someone to do it for you when things are semi-calm. In the meantime, I feel what you feel and am sending prayers and happy thoughts your way. You are going to beat this! V |
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Title: Re: Chronics - Cycles within Cycles Post by catlind on Jun 25th, 2003, 2:03pm Jill, we have had our disagreements about the medications, but I have to agree with what everyone is saying. I believe a detox is necessary, if nothing else so you can see if new meds will work. I hope the DHE drip does work for you. Have you tried Relpax? What about a combination of meds. Such as Ultram and a triptan? Surely there is a combination of preventatives out there that will give you some relief. Pulling for you. Cat |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jun 25th, 2003, 7:31pm Hmmm....I am not sure where to begin this right now but I shall try...but bear with me, k? First of all, I know how most all of you feel about narcotics but when all other meds fail, like Hdbngr said, what else do you do? I am still looking for a solution or atleast some help but it is hard to find. The reason why I was asking was because I couldnt understand why my cycle had turned so bad so fast again and if this was normal. I just got back from my fourth visit at the emergency rooom since Sunday night and I am sure that another one will be in call for tonight. They were thinking about admitting me and if I return tonight, then they will. This would be to control the pain and possibly try the DHE treatment again but I am not entirely sure yet. I know that this all about abortives but that is what is so important right now for me because preventatives take so long to try due to the time that they take getting into your system. Time is the one thing that I am afraid of but that is just me. I am also afraid that a major detox right now may make things worse but I could be wrong - this is all very hard. Thanks for the help, I appreciate it and I am glad that I am not the only chronic with smaller cycles within the big one. I hope that whoever is suffering from anything gets well soon - I really do. Thanks, Jill |
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Title: Re: Chronics - Cycles within Cycles Post by Jackie on Jun 25th, 2003, 7:48pm Curious here...... ??? Just wondering if the same doctor is writing scripts for all these meds..... Jacks 8) |
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Title: Re: Chronics - Cycles within Cycles Post by jonny on Jun 25th, 2003, 7:59pm on 06/25/03 at 19:31:58, Jill wrote:
"Im not entirely sure"? Sure, suck up the drugs rather than treat the problem. Im completely done with this!. ....................................jonny |
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Title: Re: Chronics - Cycles within Cycles Post by PINKY BABY on Jun 25th, 2003, 11:16pm this may be stupid, but would someone tell me what a dhe drip is. i am chronic also, and all the meds do is numb the rest of my body, and make my head feel like is going to roll off of my shoulders. i take meprigam for my migrains, but not for cycle attacks. it just dosen't work for me. pinky |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jun 26th, 2003, 12:52am Okay - I am not sure what happened to this thread but the question that I was asking was not really answered. But that is okay.. However, there was no need to go off on me about the medications that I have to take in order to control my life halfway. Quote:
Yes, I have two doctors working together right now and each one knows what the other is doing. I am not an addict and to say that I Quote:
Sorry that this was all taken the wrong way... ::) |
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Title: Re: Chronics - Cycles within Cycles Post by Jackie on Jun 26th, 2003, 8:07am on 06/26/03 at 00:52:09, Jill wrote:
Jill, IMHO neither one knows what they are doing unless there is more to the story. Dope has been used by countless CHers to no avail. It only clouds the issue so to speak. Plus it can lead to more issues down the road. Let me tell you a little story.......There was this man who suffered from a painful chronic disease. He was given dope. He took it. He took lots of it. He died.....not from the chronic disease but from something else that should not have killed him....but it did because the dope had masked the symptoms and proper treatment for the minor ailment wasn't received. The man was my Dad. Couple more things here and then I'll hush..... As to the "cycles within cycles"....Chronics are never out of cycle. Sometimes they just get hit lots harder than at other times. Having done your homework I'm sure you knew that. Expect to get replies that you don't much like each and every time you post the drug regime you are on. The long time sufferers have the experience and knowledge to know that narcs do not work. You have to know that jonny is a plain speaker and cuts to the chase. He has been a chronic longer than you have been alive and knows what he's talking about....he's been there and tried it all. Try as hard as you can to listen to what these folks are telling you....they only have your best interest in mind. Bless your heart....I wish you well. Jacks 8) |
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Title: Re: Chronics - Cycles within Cycles Post by CathiP on Jun 26th, 2003, 8:31am Okay, Jill- Cycles within a cycle. I know you've heard this before.....it is very possible that you are experiencing one of 2 things we have discussed before.... CH/Migraine combos-where one ramps down, the other ramps up OR....(UH-OH...) Whether you like it or not when I say it......darlin' REBOUNDS!!!! Jill, ask your neuro about them.....PLEASE!! What you THINK is giving you some relief might very well be compounding your PAIN! I don't want to see you drifting from hit to hit in a fog- but that's what happens! You never know complete Pain-Free, even though you never get the sharp edge of the hit. Did you go back to the ER last night? Are you gonna do the DHE drip? Jill, I really only want you to be PF- I hope you know that. And where is that Limestone Cowboy....Martin? Has he checked in lately? And, to whom? Martin....step UP! Jill, be PF.... Cathi |
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Title: Re: Chronics - Cycles within Cycles Post by CJohnson on Jun 26th, 2003, 9:53am Jill. I think someone linked to this a while ago. Its a bit drastic, but maybe worth looking into. New treatment for cluster headache Susan Aldridge, PhD Electrical stimulation of the brain provides long lasting relief for cluster headache. One of the most severe forms of headache and facial pain, cluster headache begins with a stabbing pain in or around the eye and persists, increasing in intensity, for up to two hours. People may be affected by 'clusters' of attacks over a period of weeks or months, followed by remission. Other symptoms include nasal congestion, drooping eyelid, eye watering and sweating. Medical treatment, with a variety of drugs, may not work and surgery gives poor results. But now US researchers may have hit on a new answer for cluster headache. They tried implanting electrodes into a region deep in the brain called the posterior hypothalamus and stimulating these with high frequency radiation. The results, on a small study of eight patients, were dramatic, with all becoming pain-free during the treatment program and remaining so during several months of follow up. The treatment may sound drastic but it appears to be both safe as well as effective. A larger study would now confirm whether the electrical stimulation treatment can be offered to more people with drug resistant cluster headache. Source American Association of Neurological Surgeons Meeting 28th April 2003 Link : http://www.healthandage.com/Home/gid1=3770 PFDANs -Curtis |
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Title: Re: Chronics - Cycles within Cycles Post by CJohnson on Jun 26th, 2003, 10:09am Here is another bit about the implant. Link: http://216.239.37.100/search?q=cache:Cn7r23CRCaYJ:www.neurosurgery.org/aans/meetings/2003/731.pdf+cluster+headache+2003&hl=en&start=14&ie=UTF-8 Exerpt: Results: At the last follow up (30.8 months) all patients were pain free without drug treatment. When the stimulator was switched off the typical attacks recurred; and when the stimulator was switched on the attacks disappeared again. No side effects (changes in arterial blood pressure, heart rate or skin temperature) were observed during intraoperative stimulation or during the post-operative course. All patients underwent postoperative PET scanning in on and off stimulation. Body temperature, arterial pressure and heart rate were monitored for 24 hours before and after the hypothalamic implant. Broggi Giovanni MD Franzini Angelo MD Bussone Gennaro, MD Ferroli Paolo, MD Leone Massimo, MD Dones Ivano, MD Marras Carlo, MD Discussant: Jeffrey A. Brown, MD PFDANs -Curtis |
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Title: Re: Chronics - Cycles within Cycles Post by OneEyeBlind on Jun 26th, 2003, 10:25am Right on Jackie ..... you have a much better story than I, but I basically told her the same thing in an email. Jonny, I know where you are coming from ... cause you can't support someone who doesn't want to truly help themselves in the long run ............. you give them all the help you can ... and then it's up to them to figure it out !!!!! Jill, I wish you the best ...........but if you are not willing to listen to people who have suffered way longer than you with this disease ............ well ............ You fill in the blank Jill. |
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Title: Re: Chronics - Cycles within Cycles Post by hdbngr on Jun 30th, 2003, 9:33am Okay... I have a story of my own. Once upon a time, I got to the point where I also was popping pills like tic-tacs and they were no longer working. I was in so much pain that I couldn't remember if I had taken them or not, so I went to a lovely clinic where headache treatment shunned pain medicine of any kind. I spent a week in their hospital on an IV with regular doses of DHE, magnesium, and Reglan to try and "break" the cycle. The pain did not stop, did not improve, as I followed their treatment plan for the next year. I did NOT take any pain medication of any kind, not even cold medicine or aspirin, things most of us take for granted. I DID take the preventatives and abortives prescribed, used oxygen constantly. For one full year, 365 days of pure, unalleviated hell, I followed this plan. It was the WORST year of my life. What I, and subsequently the Doctor realized, was that the intense, chronic pain was not due to the use, or overuse of pain medication. If it had been, the headaches would have been better, or even gone away, not become worse. I am chronic. What this means for us is that we get hit all of the time, every day, every night with no remissions. We aren't taking narcotics to feel good, we take them so that we can get enough relief to carry out basic functions of life, such as eating, bathing, brushing our teeth. What if you woke up one day and your lithium and verapamil combo quit working? Despite your best efforts, dosage changes don't help. You reach for your O2 and discover that doesn't help either, so you injected a bunch of Imitrex and that was like injecting water for all of the effect it has. What would you do? How long could stand Kip 8- 10's 24 hours a day, seven days a week? Now what I am asking is going to sound crazy. I'm asking you to give up your preventative meds, your Imitrex, your O2, while in cycle. Don't use any medication that will help with the pain. Do this for two weeks. Would you do it? Take a walk on the wild side, in our shoes? I'm not expecting any volunteers here, because you would be masochists. You are asking someone to give up the one and only thing that offers a small measure of relief. The suggestion that there is a "Doctor shop" going on, that the system is being played to get multiple meds from multiple Doctors, that you "can't support someone who doesn't TRULY want to help themselves" (we are here to provide support, period, and define "truly"!) and that because some people have "suffered way longer" is the shits and the pits. This is the kind of talk I would expect from a non-sufferer, an incosiderate Doctor, but never a fellow sufferer. Empathy, sympathy, whichever you can offer, is what is needed for Jill. Understand that many chronics have tried it all in multiple combinations and found no relief. We are surviving, breathing in and out, but we are not living. Live our kind of life, give up YOUR meds, then feel free to judge. Vanasa (hdbngr) aka: It's not he music that makes me bang my head, it's the dance. |
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Title: Re: Chronics - Cycles within Cycles Post by catlind on Jun 30th, 2003, 9:46am In regards to the medications, from what I understand there have only ever been two narcotic meds that have been effective. One is oxycontin, the other is a duragesic patch (might be the same thing I don't know). My concern is that if Jill needs to use narcotics for pain relief that she at least use the ones that work. Using multiple different narcotics WILL lead to problems. Sailpappy and others (I won't name names because I don't know if they are public) have had success using oxycontin and the patch. IMO, that would be the road to go if NOTHING else helps. Just my 2 cents worth. Cat |
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Title: Re: Chronics - Cycles within Cycles Post by cootie on Jun 30th, 2003, 10:15am Ok I'm jus a supporter here and no real expirience with the CH drugs 'at hand' but I've taken my share of valium, Xanax ect (for stress and panic attacks or insomnia deals) and have taken vicoden fer broken bones ect or ha's...have taken lots of over the counter meds for migraine or ha's and sinus ect too.....handfulls ! But in my expirence it seems that when I started with that stuff I had naggy heavy achey head FOR DAYS....of course you think it is the problem you took the meds for but I think it was the meds I took for the problem ! I think you can get caught up in a vicious circle and go round and round tryin to keep ahead of all that and get lost in it all.....a catch 22 so ta speak. I HATE havein a foggy head or that nasty ache that hangs on non stop for days. Then ya take sumthin else for that and it goes 'round and round ! I wish you "all the luck in the world Jill and then sum to get PF !!!!! Pam that hates a suffering vicious cycle |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jun 30th, 2003, 10:17am Wow.... Thanks for all of the concern and thoughts about the medications that I have been taking - I have looked at them seriously and have been trying to find away to get through all of this. So... For three days (the last three days), I was in the hospital for the DHE treatments which, unfortunaltly, didnt seem to help like I was hoping that it would. However, while in the hospital they did take me off of the vicodin and are helping me to wean off of the valium (havent taken any since yesterday morning). I am not sure where this is going to lead as they have me on verapamil (tried twice before) and celebrex for the pain -seems unusual to me. They also still have me on the thorazine (which they told me about the long term effects) with benedryl, melatonin or dramamine. I have an appointment on the nineth with my doctor and we are going to have a serious talk with her about where we stand and all. I am concerned as is everyone here and it is very frusterating to me right now because the pain is getting to me, obviously. I guess that that is all for now - it is hard to say what is next or where I or others in my case can turn when nothing else works - it is all very confusing. Thanks for everything guys... Jill |
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Title: Re: Chronics - Cycles within Cycles Post by catlind on Jun 30th, 2003, 10:31am Jill, I'm glad to hear that you are at least moving (may not be forward yet) but moving none the less in a direction towards pain relief. Valium can be pretty tough to stop taking. It gets easier every day, not that you were addicted, but your body gets used to having help sleeping and that can be hard to get past (whether it's valium or OTC sleeping pills). I hope things get better fast for you, and I'm sorry that the DHE didn't do the trick. Keep your chin up, you will eventually find the right combo. It just takes time, and I know you are frustrated. Keep working with the docs, and stay honest with them, and I'll send vibes that they find the magic combo fast. Cat |
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Title: Re: Chronics - Cycles within Cycles Post by hdbngr on Jun 30th, 2003, 10:34am Thanks for the clarification on multiple narcotics, Cat. I agree. I thnk CathiP had a great post, as did Curtis when he suggested a possible procedure. I'll go public. I use the Duragesic (fentanyl) patch. It's several steps down from the oxycontin, but it has helped. I take a voluntary med break every few months. I'm not an addict, never had a drug problem, and I'm actively searching for anything that will help. There is not one "right" way to treat CH. Suggesting that those who have utilized narcotics are addicts, hiding things from their Docs, and in general are undeserving of advice, help, or support just really bothers me. We would all be in a serious bind if we slapped a coat of concrete on our way of thinking and called it good. |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jun 30th, 2003, 10:58am Thanks Cat... Jill |
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Title: Re: Chronics - Cycles within Cycles Post by fubar on Jun 30th, 2003, 12:34pm [nevermind] >:( |
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Title: Re: Chronics - Cycles within Cycles Post by CathiP on Jun 30th, 2003, 3:55pm AWWWWW, Jill! I am sooooo proud of you,darlin! The DHE may-or may not be the answer- but you are trying! TRY EVERYTHING.....keep your spirits up(you got lots of people here to help with that!).....know that everyone who has posted here has done so out of love and concern for you- but they need you onboard as well. When I read of the long roads so many have taken toward relief from CH, I understand you're not done yet, but you keep on trying, and you keep on fighting for yourself. I know you're gonna be okay, now.....and that is the most important part. More & more & more vibes for you, Jill! Refills as needed. Cathi ;) |
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Title: Re: Chronics - Cycles within Cycles Post by Locomotive_Skull on Jun 30th, 2003, 9:46pm Quote:
I agree with that statement. I never get "time off" for good behavior. Sometimes I am rewarded with mild, "teasers" all day long, never reaching maximum velocity for maybe a day or two, but then recieve the same old punishment that I am used too. I don't take anything for my headaches. NOTHING. I have taken meds in the past, but I would say maybe one year of meds out of at least ten solid years of C.H.'s. I eat asprin sometimes at work, or maybe take ibuprofen if I am going to do something around the time I am expecting, but take no meds as of right now. I do not have the option of the E.R. either. When my headache is coming, I have about 5-15 minuites until I am into full swing. Then I am looking at about 30-45 minutes of mind piercing, soul-shattering horror, then appx. 60 minutes from the start, it comes to a very quick end. If you can take that time frame and fit a trip to the E.R., (actually see a doc) then you are doing WAY BETTER in your communitys health care system than we are around here! I don't know you, but if you suffer from these attacks then I know what you feel. We all have different levels of tolerence I suppose and we may search for anything short of a miracle to provide some relief. To be frank with you, I want to scream, " Quit being such a weakling, quit your bitching and moaning and use this visit from the beast to enhance the good things you have to be thankfull for."- Of course, like I said, we all have levels of tolerance. I can't image some people I know being able to handle a C.H. My outlook on this shit is this- Sure, do whatever you deem neccessary to fight your demons, but try not to lose sight of who you are because of it. |
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Title: Re: Chronics - Cycles within Cycles Post by oringkid on Jun 30th, 2003, 10:40pm I am in JUST the mood to take on this shit. So those of you that thought you liked me... you may want to reevaluate your positions. Quote:
Yes, I took it out of context. But it is a telling sentence. Hdbngr Quote:
I have gone without meds for almost 30 years.... ok, yes, I am episodic, not chronic. But, for the most part, I had episodes twice a year, and until my last cycle, I had never had an episode that was shorter than 3 months. Normally I go 4 sometimes 5 months. No meds. 30 years. I must not know much.... originally Jill, you told us the Thorazine was prescribed to help you sleep....... now you have to take benadryl, melatonin or dramamine WITH the THORAZINE to help you sleep?? I would think, although I admit I don't know, that the thorazine would knock you the fuck out!!! Unless your tolerance to drugs has become very high. I guess I sound pissed. Well ya know what? I am. Jill, you are a VERY intelligent young woman with loads of potential. But,....you are heading down the WRONG road. I don't care how much pain you are in. You are heading towards self destruction. Now many are going to say that I'm being too harsh, I don't know the full story, I don't understand how BAD it is.....Maybe so, but I KNOW, for a FACT, if you keep on down the narcotics, valium, thorazine, etc road, your life will NOT be a life worth living. You are giving excuses why you can't do any of the other treatments and rationalizations for doing the narcs etc. What Fu said is true!! Re-read it. Look, I don't care if you hate me for the rest of your life. If one little word of this can get through to you or someone who TRULY cares about you and gets you off of this road to destruction and back to a place where you at least have a chance of fulfilling your potential, I will be happy. You might hate me for the rest of your life, but at least you will have that life to hate me with. This is the only way I will support you now, until you decide to try to help yourself. Yer fuckin up. STOP IT. Only you can stop it. Only you can decide to try to help yourself. When you are ready to help yourself, I'll do my best to help you. Until then, I will give you hell. Not cuz I don't like you, but because I think you have a lot to offer. Cuz you are intelligent. Because the one thing that hurts me more than anything... is seeing an intelligent person with so much potential, purposely destroy themselves. And the rest of ya, don't bother givin' me any shit about this, cuz you know I'm right. Sherry (yep, still in a mood) |
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Title: Re: Chronics - Cycles within Cycles Post by Ted on Jun 30th, 2003, 11:37pm on 06/30/03 at 22:40:05, oringkid wrote:
I re-evaluated my position and think even more you're one of the coolest and right-on people I've ever met! Stand tall, Sherry. You stand tall more than you know! |
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Title: Re: Chronics - Cycles within Cycles Post by misserin on Jul 1st, 2003, 12:08am wowsers, Jill you've started a debate here amongst the higher uppers that I cant even TOUCH. But hey, I have my own input, I suppose... I havent had a lot of experience with meds personally, however I did work in an orthopaedic office and also dated a guy who was addicted to pain meds and ambien, and I've seen some awful stuff that still gives me nightmares with respect to addiction. Narcotics did nothing for me, though I've really only tried hydrocodone. But I'm glad to see they started you on Celebrex. You mentioned you thought that was odd, but really, an antiinflamm is something (especially celebrex which has little or no side-effects unless you're 72 and eating them like candy) that might just do the trick once you've wiped the slate clean. My question to you is, why were you taking celexa? As well as thorazine? Were these actually rx'd to treat the headaches? Or are these due to other difficulties you might be experiencing? Jill, I must mention that I feel very priveledged to know this information about you. I dont take it lightly. The typical symptoms that these meds are indicated for are a lot to deal with without cluster headache on top of it. But from that angle, I too have a belief. I worked with many many individuals who were taking a combo of meds just as you have. The best thing I did in my work with them, was suggest they switch their practitioners and "wipe the slate clean" just as everyone says. The results were amazing. I am investigating an electrical stimulation machine (woohoo) that hooks on to your ears. This thing is supposed to help with migraines and also with depression. If I get any inkling that it might work here for our purposes, I will shout it out to the world. Clusters within clusters... I think that's very possible. I took too much ibuprofen this past couple of weeks and got a rebound headache on top of the intermittent skull cruncher. NOT FUN. Not to mention how I did on my chemistry exam that week. It seems that whenever I'm not having an episode, I'm dealing with some sort of low grade headache or another most of the time. And during an episode, the cycle sometimes seems to compile itself somehow on some other cycle at times. very weird Had you tried O2? (doesnt work for me >:( ) So keep hanging in there. No matter what we all think about what you should do for your treatment, I know how much life changing maneuvering I'm capable of when I'm dealing with a headache... nil. I'm sure you just want the pain to end. Then soak in all the marvelous and I must say impressive advice you have here from a panel of incredible people.... Please please feel better soon. Erin |
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Title: Re: Chronics - Cycles within Cycles Post by brain_cramps on Jul 1st, 2003, 1:01am Great post, Sherry!!!!! grant 8) |
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Title: Re: Chronics - Cycles within Cycles Post by CathiP on Jul 1st, 2003, 1:17am Jill- Sherry's been there with you all along the way. She has kept her tongue till now, and she IS angry-mostly, she's angry about the CH.....but she is angry as well, because she sees such an intelligent young woman..IN A DIRE SITUATION!! Jill, Sherry's worried about you, and she is furious that you could be in this situation now. If you are angry with her, take that anger and channel it into fighting the beast. Use your energy to help you! Keep yourself strong, and sharp minded, so YOU can be in control. Sherry- I've thought......and I'd like to thank you-you are willing to stomp and scream and rage- especially if it will help. Take someone really special to risk that.... Here's a big hug Jill.....use it, please, and know I care. Cathi |
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Title: Re: Chronics - Cycles within Cycles Post by Wendy the Brit on Jul 1st, 2003, 4:29am Jill You've heard my views before, bluntly but kindly meant, and they echo Sherry's (good for you Sherry) Good for you for getting of some of the meds KEEP GOING! From our conference where we had a talk from probably the most knowledgeable man in Europe, maybe the world on CH, three things may be relevant for you: 1. Antidepressants and most narcotics have very little value in the treatment of CH 2. Breaks from drugs are strongly advised as their efficacy is reduced by prolonged use, and rebounds may be caused. This was for people who are only taking the basic CH meds, not those on the terrifying combination of painkillers, antidepressants, sleep meds and antipsychotics you are swallowing 3. As in the post above, there have been some huge successes for resistant chronics in surgical intervention. I urge you to get a copy of the tape from the convention where Goadsby summarised the two latest strategies and their success. One of them was almost 100% succesful (one case had to have it done twice as his Ch shifted to the other side so he had to have that side done as well) This is a drastic step to consider I know, but if I was taking the crashingly heavy duty stuff you are, I would seriously look into it. Bluntly, if you are not prepared to help yourself properly by looking at other options than these drugs, and I don't mean just posting here, well I'm afraid my previous opinion stands- that you don't want to get well. I mean to help, not to hurt, but you know damn well that what people are saying here is right. W the B |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jul 1st, 2003, 11:09am Okay - I didnt mean to start a debate..... :-/ I am not sure what to say but that I am trying to find a damn solution to these clusters that just wont leave me the hell alone. It has not been a good day and last night consisted of another visit to the emergency room. I am not sure what to do but 'wiping the slate clean' is not as easy as some of you may seem. I am taking the thorazine for the headaches and no it does not knock me out and yes I do have to take one of those other meds just to get some sleep at night. It sucks but it is what I have to do right now. I have tried everything, some more than once, and yet I find no break - you think of an answer because I sure cant. I am sorry for how this sounds but I have alot on my plate right now and am not having an easy go of things. Jill |
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Title: Re: Chronics - Cycles within Cycles Post by Wendy the Brit on Jul 1st, 2003, 11:33am Jill Sorry, but if I ever needed proof that you aren't hearing, that last post was it. I no say nothing no more |
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Title: Re: Chronics - Cycles within Cycles Post by brain_cramps on Jul 1st, 2003, 11:37am Jill If you are on a number of medications and still getting hit regularly, what do you have to lose by trying to get off of EVERYTHING for 2 weeks? It is not easy. It WILL be more painful in the short-term, but at least after the 2 week period, you have a chance of figuring out what is working and what isn't. Currently, you have NO chance of determining that. As far as long term use of many of those meds goes, it CAN'T be a good thing. Espically the thorazine!!! You might want to re-read the links that were sent to you when you first were prescribed it. One, in particular, mentions that it does not relieve or even mask the pain. It ONLY makes you not care about anything, pain included. I watched my grandfather, who was schizophrenic, deteriorate into someone who did not care about anything. After a while on thorazine, he rarely spoke at all. You have SO much more to offer to those around you. I know 2 weeks may seem like a long time to not take any medication, but think of how long you have been taking multiple medications without knowing which (if any) are helping, and STILL getting hit regularly. Even though I am episodic, to me , the decision should be SIMPLE. ::) 2 weeks is NOT a long time. grant 8) |
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Title: Re: Chronics - Cycles within Cycles Post by Wendy the Brit on Jul 1st, 2003, 11:51am Grant You are so right.(especially about Thorazine, sorry you found out about it in such a bad way Grant - Jill has been told before that it is a now very rarely prescribed heavy duty anti-psychotic with evil side effects NOT a drug to assist with sleep) THE DECISION IS SIMPLE AS YOU SAY ABOUT ALL THESE DRUGS, IF IT ISN'T WORKING, DON'T TAKE IT. But Everything points to the fact that we are feeding a need for attention, not helping at all. She aint hearing us! |
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Title: Re: Chronics - Cycles within Cycles Post by Peppermint on Jul 1st, 2003, 11:59am on 07/01/03 at 11:09:46, Jill wrote:
I dunno... Quote:
Are you not chronic? The IS no solution, as far as I know. Only pain free days in between. You did say you have had some PF time... Quote:
I was under the impression that you Never got a break. Ever. Quote:
Read this whole thread the answer is HERE. Quote:
You know what Jill? I am sincerely sorry you are having a rough go of it. It must be also difficult on your family besides sucking for you. However - people here ARE giving you the answer. At least something to WORk with. HAVE you tried the Verapimil and Lithium combo? Ever? Maybe if you do as your chronic brothers and sisters are telling you, take some experienced advice, you may find some Pf days. Maybe. Nothing is guaranteed. But that's the way it is with these things. I was holding back from saying anything, because this thread is addressed to chronics, but screw it, flame me if you don't like it. I know lots of chronics that have it really bad, suffer day in and out. I know at least one that has NO support, just me, over the phone, and on this board. You have all that - the board, your family, your friends here and those you've met. I just hope you don't expect people to keep coddling you if you aren't going to listen to some valid points of view and advice. OPEN your EYES already. I used to call you my little sister, my hermanita remember? When we used to talk. Well now I'm talking to you in the same way. Get with the program and get tough. It won't be easy, but instead of worrying about causing a debate (not much of one if you look, there seems to be a general consensus), take the first step you need to. Maybe then you can figure out where you can begin again. How many people with the same opinion does it take for you to listen? I'm sorry if you hate me. Its up to you in the end Jill. Patty |
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Title: Re: Chronics - Cycles within Cycles Post by Opus on Jul 1st, 2003, 5:42pm Jill, The posts before had a lot of things that probably made you feel down, You see your life unraveling and you have no recourse but to take what the doctors prescribe, after all the normal preventatives and abortive have failed you, you really have no where else to turn. The fact that they are taking you off the drugs that may or may not worked in the past but are not working now is a sign to me that the doctors are still trying. I understand how you feel, that the will to fight is gone and you just will doing anything the doctors say to end the pain. I have read your posts when your were on the drugs and the pain was less, the joy of life was there so to me it's the pain not the drugs that cause your posts to be so down. Just remember Jill that your are very special, a precious child of God and even though He seems far away from you now He is actually closer than ever before. Take strength in the fact that between the pain and the drugs any lesser person would no longer be around. Like the woman who suffered under years of doctors cures for her bleeding it took her faith that when she touched the Masters cloak that she would be headed and was. I is your turn now, how, I am not sure but if you agree e-mail me and I and others praying for you will help you in a way not yet tried. |
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Title: Re: Chronics - Cycles within Cycles Post by Linda_Howell on Jul 2nd, 2003, 12:55am I'm gonna say one thing more and then I'm NOT gonna say another word. Jill? There IS one thing you haven't tried. Since you've lived with Marty who was, or still is, a police officer(not sure of his status since you two moved) He could not allow you to try....well, you know. But you have to get off everything else before you decide to do that. EVERYTHING. think about it. Like someone here said.....2 weeks is nothing in the life of us chronics. LindaH |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jul 2nd, 2003, 4:40am I don't usually post on these boards, but hell, it is 5 am and I am up. Grant, when your father was on Thorazine what was the doseage and for how long? I asked about the long-term affects when we were up at Johns Hopkins, while the doctors don't want her on it any longer then she has to be, the dose is so small they don't see any long term problems. And I asked several doctors at different times. It is the Thorazine/benadryl or melatonin combo that works- not one or the other. When Jill said she had been pretty good since Easter she ment she hasen't had to go the ER. She could control the headaches at home with medication and they only lasted about an hour or so. When she has to go to the ER they usually last 4-5 hours, and I am talking head banging, writhing screaming in pain headaches. If I wasn't seeing them I would have a hard time believing it. We sit in the chair and she bangs her head with her fist, or tries to use the arm of the chair, or the floor, and just cries for it to stop. It tears my heart out. And she is not doctor shopping- every doctor she sees- in the ER or not- gets told what she is taking and when. Everyone. Everything. Do I wish Jill off all the medications? Of course. Do I want her to go to school, date, have fun? More than anything. For those of you who said she should go off all the meds for two weeks- you are welcome to come down and help her through it. I'm not sure Jill, Marty, and I cold get through it on our own. Just email me. Like I said, I don't post on these boards, and Jill doesn't need me to speak for her, but I wanted to clear a few things up. Going to go try to get another hours sleep now. Barbara |
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Title: Re: Chronics - Cycles within Cycles Post by catlind on Jul 2nd, 2003, 7:29am on 06/30/03 at 10:17:28, Jill wrote:
I know that everyone has the same goal in mind. Trying to help Jill. But please reread what she wrote. She IS trying the way I read it. She is off the vicodin, and off the valium. Yes Thorazine is a scarey drug, but she's on low doses and her docs are well aware of what she's taking. I think we beat the thorazine deal to death when we all found out she was on it. If it is helping, then she knows the risks, good and bad. I know she knows because her and I and Marty had many long email conversations over it. I sent her information on it, as well as Marty to show her ALL the aspects of the drug. I really do see that she IS trying here. She is back on verapamil, she tried the DHE again, and she is OFF the vicodin. I can't be happier to know she's off the vicodin, I went through hell with that drug. But before we are too hard on her, and I know it's because folks care, lets give her the credit due, based on that quote, she IS trying. Instead of coming down hard right now, I think we should encourage what steps she HAS taken. She is a clusterhead, and she needs support and encouragement when she does make those steps that everyone keeps telling her to make. She's made them, so lets encourage that so that she doesn't get down on herself. That's my 2 cents worth, send change to my email. Cat |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jul 2nd, 2003, 8:45am I wasn't going to post because my mom had said basically what I wanted but here I am anyways. Thanks Cat - I am trying and I am sorry that others cannot see that because I could not be trying to climb the mountain (as I see it) any harder. As for the meds and a two week break - that may be good for some others but for me, it would not be very good. I think mom addressed that one pretty well. I just wanted to say that I was sorry that some of you might think that I abuse my meds or doctors because I dont. Yes, and I will say this, I may lean heavily on my meds if not for a security blanket sometimes because I need something to work so badly. I am not afraid to admit that and I am sorry that life is that way but what else can I say? I never meant to start an argument and now I cant even remember what the point was to the first post because it has been so long. If you see me any other way, then I am sorry - I am just a clusterhead looking for some guidance (Cat is right...) Jill |
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Title: Re: Chronics - Cycles within Cycles Post by fubar on Jul 2nd, 2003, 9:10am [i give up] >:( |
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Title: Re: Chronics - Cycles within Cycles Post by kissmyglass on Jul 2nd, 2003, 9:47am Okay Jill...here goes.... You want guidance? Come to Connecticut. I have a vacant apartment, it's quiet peaceful & on a river with a great view. it's yours. for as long as you need it it's yours. I've cold turkeyd off of narcotics & have 1-3 kip 10s every single day so I know what you will go through & you won't suffer alone. Leave all your meds at home or better yet throw them away. There will be no vicodin, perks, valium, dilaudid or any of that other nonsense you are taking that do Nothing for clusters. No ER visits either. You will have all the O2 you cak suck & Imitrex & Verap if you have a script. Thats it. It will be hell for 2 weeks then you'll start to feel like gold then you can start battling the Clusters correctly. It's your life Jill either take it back or lose it. I would much rather send flowers to you congratulating you on feeling better & getting your life back than having to send them to you funeral. Come on up, Kev (203) 735-3855 |
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Title: Re: Chronics - Cycles within Cycles Post by Edna on Jul 2nd, 2003, 10:34am HOLY FUCKING SHIT…………jonny………me thinks you have to move over just an inch to allow for Queen Sherry to share the throne!!!!!!!!! Jill, First of all, you say you have a lot on your plate now……well hon, we all do and none of us here can judge one another by THAT………if we did, we would NOT be genuinely concerned for anyone here!!!! Second, are you even listening??? Please quit trying to come up with excuses as to why you CAN'T try what ppl here are offering in advice. I mean come on girl, some of us here get tired hearing the same thing over and over and offering the same advice you choose to ignore. Sorry it it hurts, but HEY, love hurts!! SO FUCKING DEAL WITH IT!! Many have gone over and beyond their call of duty here to try and help you, but when you come to post to us all, we offer our help and then you ignore it……..what does that tell us. I hate being blunt, but if I had you right near me right now I'd take you by the shoulders and knock some sense into you as though you were my own child dear. As I continue to read the responses to your post…….some of the best ppl here are getting pretty agitated?? WONDER WHY??? You say you're afraid of the "TIME" it will take…….give me a fucking break……..NO I'm not chronic, but have been an episodic sufferer for OVER 25 yrs. I cried when I found this loving place BECAUSE of realizing some ppl here suffer ALL THE TIME. Yeah, I think I got it made compared to those, all the more reason I RESPECT THE ADVICE THEY HAVE TO OFFER!!! "you think" they wanted to admit you for ???……..what the hell you expect us to think after THAT?….I've had this discussion with you before………Dear, if you can't begin to KNOW and take a stand in WHAT FUCKING TREATMENT the hospital is even gonna admit you for…………well shit, why would we here want to even bother anymore?? Huh?? So you think major detox would be worse huh?? Gee, think that again is spelling something out for you very clearly!!!! You're smart enough to figure it out dear!! As far Marty?? Yeah, where is he?? Is he still helping you out?? Hmmmmmm………..sure haven't seen a post from him in a while…….guess he has a "lot on his plate" too now…….no offense to Marty at all, just maybe that his plate must surely be fuckin broken by now. Ooohhh la la……..fuckeneh to Wendy the Brit "Everything points to the fact that we are feeding a need for attention, not helping at all. She aint hearing us!" Hate to say but this has long been a thought of mine here, and some of you well know that! Prove us wrong Jill. I'm getting brave here if you can't tell, guess I've been around jonny and sherry too long!!!!!! LOL hey you guys, you've rubbed off!! (I love this place) :-* Opus, I get your drift, and hopefully Jill will too. Have you heard it yet Jill? Many routes you've not tried yet dear, and each one is significant in its own way!!!!!!!!!! Awwwwww…………kissmyglass - Kev……..what a pal!! Genuine goodness could not better be displayed and I applaud your effort!!!! Jill, sorry to be harsh, but it just gets pretty disgusting gal when it is so obvious as to what the answer is for you. You have my email so use it when you're willing work on what needs to be done. Until then I wish you the best out of true concern for a fellow cluster sufferer!!!!!! Sincerely, EDNA |
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Title: Re: Chronics - Cycles within Cycles Post by fubar on Jul 2nd, 2003, 11:07am [i give up] :( |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jul 2nd, 2003, 11:52am You know - you all think that is so easy and that you all have all of th answers but you dont. You are not living in my shoes right now, you are not getting hit like I am and you are not dealing with the shit that I am dealing with right now. You say that life is hard and that that is just the way it is - well live here for right now. I am twenty years old, have a chronic disease that I cant find a solution to and I am not sure where my life is going to lead. Can I go back to school? Will I ever be able to work? And on top of it all, my dad just died two months ago leaving a whole lot of other feelings to deal with. Yeah life is hard - live mine before you tell me to deal with it, k? I am not comming up with any damn excuses as to why I cant try what people suggest but all I read is that I should detox. No freaking way - like mom said - come here and help and then we will consider that. I am getting hit too hard right now to risk making the clusters worse. I am taking the doctors advice and if that pisses you off or 'agitates' you than I am real sorry but I am doing what I need to do to survive. I am not an addict to any medications and am only taking prescription meds with a doctor who is monitoring me - she knows what I take, when I take them and so forth. It is not like I am addicted to shrooms where my doctor cant know about it because I am not and hate to see you treat me that way. I dont even believe in using them because they are illegal and I am the one treated this way. Shame that I see it this way. And, Edna, you ask where Marty is - he is right here next to me fighting this battle along with my mom. Please dont go off on him because you have absolutely no right and that really pisses me off to be quite frank. I am sorry about how you feel - I am looking for a solution to this hell that I am forced to live in and it is a damn shame that some of you cant see that and disappoints me greatly. Jill |
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Title: Re: Chronics - Cycles within Cycles Post by fubar on Jul 2nd, 2003, 12:12pm [wasted post, sorry] >:( |
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Title: Re: Chronics - Cycles within Cycles Post by Brian_Y on Jul 2nd, 2003, 12:40pm Shawn, You, sir, are a very intelligent human being. Give yourself a small round of applause. You have my admiration.... B |
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Title: Re: Chronics - Cycles within Cycles Post by catlind on Jul 2nd, 2003, 12:47pm Okay, what am I missing? My understanding is that she has STOPPED taking the pain meds. Isn't that what the problem is? If she has stopped the vicodin and the narcs, then I am really missing what the problem is. Should she stop the verap as well? I'm just trying to understand what it is that everyone wants her to stop taking. I was under the impression it was the narcotics, and from what I read, she has stopped them. ???????????? Cat |
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Title: Re: Chronics - Cycles within Cycles Post by Irma on Jul 2nd, 2003, 12:55pm Appears she "stopped" for one day, the Valium anyway. Keep reading Fubars posts Jill. I don't think it will sink in but keep reading anyway theres always hope. I |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jul 2nd, 2003, 1:03pm I dont want from this what you say I want - that pity party and that is never what I intended. I dont like this anymore than any of the rest of you. Cat - I did stop the pain meds and am now taking the verapamil twice aday, thorazine once aday, celebrex twice aday and celexa once aday. I am not sure what I am supposed to stop - the celebrex? I am no longer taking the valium but do admit to taking the vicodin when I really feel that I need it - pain wise and not mentally wise. That is not everyday either. And I use imitrex injections - should I stop them? This is all that I am posting because no one seems to want to try and understand my place in all of this. I am sure that if I were really on a roller coaster downwards Marty and mom would realize that and get me on the right path. We are trying to find a better solution but until we do then we do what we need to. I am listening to you but you are not here to see me, to see this mess so that leaves you in a different position than mom and Marty - you figure it out. Jill Thanks for those that helped. |
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Title: Re: Chronics - Cycles within Cycles Post by kim on Jul 2nd, 2003, 2:03pm Oh. My. GAWD!!!!!!!!!!!!!!!! :( Every single person who responded to this thread did so with passionate intentions of HEARING and HELPING you JILL. I will offer no meds advice. These great folks (and me too on occasion) have offered statistical data cooberating "unsaid" advice as well as personal EXPERIENCE. The pain is unbearable. Yet countless folks here march on. And some are ALL ALONE. No Marty no Barbara. Some have families to support and kids to raise. Mortgages to pay, family Crisis to settle..................family members to support who are fucking DYING - it goes on and on..... Here is your homework: what can I DO to help SOMEONE ELSE, regardless of the ME situation I'm currently in..... Yes, I know. I'm mean and don't understand a fucking thing... Do not pass GO. Start OVER >:( |
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Title: Re: Chronics - Cycles within Cycles Post by hdbngr on Jul 2nd, 2003, 2:12pm Way to go, guys. Guilty until she proves herself innocent? She has answered every question, every concern, and yet the attack goes on. Anyone congratulating themselves, or others, on their "wonderful" advice needs to ask themselves. "Did I help, or did I hurt?" By her last response, looks like we fell woefully short as group support. "Remission" for cluster headaches is defined as any significant break in pain that exceeds 14 days. If you can go 14 days without pain, or even low end pain, you have a LOT to be thankful for. Think about it. Anyone who prefaced their post by saying "I'm not chronic, but..." needs to think really hard about what they said and why they said it. Ever had someone offer you advice, but start by saying "I don't have headaches, but... or I don't have clusters headaches, but here's what you should do..." I'll say it again. Give up the meds that work for YOU, take nothing for your pain, breathe no oxygen, then ask yourself what you would do, if you felt like that all of the time. |
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Title: Re: Chronics - Cycles within Cycles Post by kim on Jul 2nd, 2003, 2:23pm We are all innocent until proven guilty. Do the math. And ..........chronic or episodic or none at all? All of the above. Each one brings important information that, if ignored or disdained, shall bring no relief to the weary. |
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Title: Re: Chronics - Cycles within Cycles Post by Margi on Jul 2nd, 2003, 2:44pm I've stayed out of this one. Until now. Sherry and Shawn (Fubar) and countless others, your posts are amazingly well done. But I think you're appealing to the wrong person here - I think we need to talk to Jill's mom on this one, Jill's still a young girl in a lot of ways. I have a daughter who is 21. She believes she is bulletproof - very common attitude for that age. We've all been there, defiant to the masses even though we've probably all been given advice we didn't want to hear. There comes a time when a parent needs to get involved. This is one of those times. Barbara - YOU need to take charge here. Your daughter is getting caught up in an undertow here and she NEEDS you to make it stop. These drugs she's taking are NOT going to make her better! Maybe one or two of the CLUSTER drugs but ... they are a crapshoot at best. I read your post in this thread and you made the comment 'would YOU like to sit with her for two weeks while she detoxes?' (or words to that effect). Barbara, if this were MY daughter? Yes, I WOULD sit with her while she detoxed! 24/7 I would, even if it took 365! In a FUCKING heartbeat I would. >:( Your daughter is too young and too chemically compromised at the moment to be making decisions as to her treatment program. Take the reins, Mom. EDUCATE yourself as to this affliction and what drugs work and what don't. It's all right here on this website. Look, I'm sorry for the loss of your husband and you probably think I'm a heartless bitch for laying this on your lap - but TAKE THE REINS, MOM!!! Jill NEEDS you to be her strength right now. Get her into a cluster knowledgeable neuro - only ONE doctor at a time - and do it now. A cluster knowledgeable neuro would NOT be prescribing this shit for a clusterhead. No I won't apologize for this one. ::) |
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Title: Re: Chronics - Cycles within Cycles Post by cathy on Jul 2nd, 2003, 5:31pm APOLOGIZE right now...!!!! ;D |
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Title: Re: Chronics - Cycles within Cycles Post by Margi on Jul 2nd, 2003, 6:56pm LOL BITE ME right now...!!! |
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Title: Re: Chronics - Cycles within Cycles Post by Not4Hire on Jul 2nd, 2003, 8:58pm Jill: ....Last request:....... I sent you my ONLY o2 regulator...(which I have since replaced)... back when you were threatening SUICIDE...(probably March -April....the date is NOT important) and den and I also called the POLICE to yer apartment in Maryland..... Remember?.... well, maybe not..... and if you hate us for that.... read no further..... But I want My fucking o2 regulator BACK...yer sure as hell not usin' it... ... I have sent you numerous emails,,,, and some of your other bud's have as well..... ya just stonewall me.... fine!... if keepin it protects your wall of ...... MISERY.... which you cling to SO tenaciously..... then we can do no more for you..... But at least have the decency to pass that o2 reg onto some poor sunamabeach who WILL ........ there's LOTSA newbie's (which you ARE NOT) who can benefit..... (man, am *I* full of myself...but I am done Now...and nothing I can do, will rescue Young Jill from her Castle of Pain.....except her acceptance of her plight... and her (possible?) commitment to be an Example of how FUCKING HARD it can BE... ) Jilly:...stop clinging to your pain...... yer credibility with me is shot...... AND SEND THAT DAMN O2 REG TO SOMEBODY WHO CAN GET SOME RELIEF..... THE LIST IS loooooNG! |
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Title: Re: Chronics - Cycles within Cycles Post by Elaine on Jul 2nd, 2003, 9:15pm Margi is right! Barbara is who needs to help Jill. Barbara I took all kinds of pain meds when I first started having clusters. I did not know I had clusters, neither the the doctors, they kept loading me up on pain meds. It was the only time in my life I couldn't funtion. They got in the way of me figting my clusters, they made the pain worst, not only was I tired form the pain but the damn drugs they were giving me was draining me. It got so bad, that Buddy fixed up in a lounge chair in the living room, cause I felt sleeping sitting up worked, we could not afford a recliner at the time. He would put my pills on a table by my chair along with a cooler with something to drink and a ham sam, or some potato salad, something for me to eat. Thats where I stayed till he got home from work everyday. My children were sent to my moms for two months, i stayed in that state. I thought cause the doctors gave me the drugs it was ok. It wasn't ok. I had to hold on to the walls to get to the bathroom. I did not care about how I looked or anything. I just wanted to die. None of those druged worked for me at all, they just made me sicker. One day I woke up. I was in pain I poped a pill, I feel off to sleep woke up again in pain, thinking it had been hours I took another one. I did that all day, by the time Buddy got home, I was out of it. He knew from the bottle of pills what I did. I spent that night in the ER. Trying to stay alive. That night told me to get off the drugs. I did, and was able to get my kids home and I fought the clusters without any meds for years. They were not half as bad without the drugs. The drugs caused me to have other headaches on top of my clusters. If imitrex doesn't work and nothing seems to work, then my only thought is, Jill has to learn to deal with the pain and there are ways to deal. Many ways. If there wasn't we would all be dead by now. Faith and postive thinking and lots of reading on the OUCH site and here will help Jill. You have to help her take control of her health and life again. Take these peoples advice it does come from not only our heads but our hearts ! |
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Title: Re: Chronics - Cycles within Cycles Post by kim on Jul 2nd, 2003, 9:28pm We've all told our stories to Jill. We've opened our hearts full UP. She has been privy to the wealth of information and powerful support from you all.................! She is old enough to take the good and make it happen. So is Barbara and Marty. I don't want to pass judgment but cannot handle this type of denial in the face of so much being offered out. It is not right. When I was 13 if ONE of you would have the opportunity to speak with me i would owe my life. I STILL owe SO MUCH. Jill, and Barbara. If you are allowing doctors to prescribe the meds current - after all this time and help and info being spilled out to you - then...........well, makes me really fucking mad. Taking all the time from hearts so true............NOT RIGHT. Don't post without telling the truth. It is not fair to anyone here; and it is a slap in the face to true warriors and survivors. You'r life is you own. Good or bad. I have too much respect for folks who have sat in a chair and prayed alone. And continue to do so every fucking day. |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 2nd, 2003, 10:11pm Yep, this is why I don't post on these message boards. First of all, Margi, if you are going to quote me get it right. I said you were welcome to come down and help her through it. I said the three of us could not do it alone. I am here for my family all the time, and that includes Marty. And Edna, we don't have Marty locked in the basement, his computer works fine, perhaps he has more important things to do with his life right now than this message board. Leave him out of any argument you might have with me. Second, we are very careful about any meds Jill takes, she checks with Marty or I before taking ANYTHING. We know exactly what she takes and when. Which meds would you like her to stop taking? Right now she takes celexa, celabrex, thorazine [night only], verapmil, a sleeping aid and imitrex injections. Occasionally vicodin if the pain is bad, but not on a regular basis. I believe she asked you that question and didn't get an answer. You all can stop acting like she is popping narcotics like candy. We have been to the ER and told them no narcotics, then they give her thorazine and benadryl, which according to the people on this board is the devil's brew. Third, she two doctors, a GP and the neuro at Johns Hopkins. I go to the doctor's with her, I ask questions, I am trying to educate myself. I would do anything to help my daughter. But I can't help her without the doctor's experience and education. The doctor did tell me over the weekend that most of the headache meds they use were not orginally used for that purpose, and they don't know why some of them work for some people and not for others. So while this board may have alot of experience, it doesn't mean jack applied to anyone else but the person posting it. Everybody is different, what works on one person may or may not work on another. I told Jill to stay off this board if it continues to upset her so much, frankly as much as you have helped her in the past, you are tearing her apart right now. And you really are not worth it. I realize some of you have worse lives and some better. I would not compare my life or Jill's to anyone elses, it is what it is. We will work through it with or without this board's help. It is one thing to sit at a computer and write down the words, not so easy to be here. Tonight I sat with my daughter in the ER [the same one where my husband died] and listened to her moan and scream for three hours, saying Mommy please make it stop. So please forgive me if I have no tolerence for you. Actually, that isn't true, I don't care if you forgive me or not. I am what I am and right now that is gone. Barbara |
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Title: Re: Chronics - Cycles within Cycles Post by kim on Jul 2nd, 2003, 10:21pm You can hate me or not ............I too laid in ER and moaned out those very words. For years they were to my mom and I was not so far gone could not see the torment on HER face.....and for years following - it was (and is) to my HUSBAND thatI moan those words ................it does not have a miraculous and sudden halt Barbara.... I wish so hard that you could see the effort of many hearts and minds - all of whom wish well for you and for Jill. Breakes myheart to see you feel isolated..........But I can tell you face to face to stand tall with the docs and don't let it go unchecked on their part...........easy to happen, let things slide under a doctors care............. I hope one day you can take this all in. FULLY appreciate everything. Right now it's hard. |
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Title: Re: Chronics - Cycles within Cycles Post by oringkid on Jul 2nd, 2003, 11:05pm So, no more Dilaudid? No more Vicoden? Just Thorazine, benadryl? So the ER is now just heavily sedating her? Just on an anti-psychotic (thorazine), an antihistamine (benedryl), an anti-depressant(celexa), an anti-inflammatory (celebrex), a calcium channel blocker (verapamil) , a vascular 5HT agonist (imitrex) and an opiate agonist (vicoden) sometimes. Then there was a sedative (valium) and a highly addictive narcotic (dilaudid) which is approximately 8 times stronger than morphine and is sometimes called "the drug-store heroin" The Dilaudid, can be life threatening. According to Jill's posts, she has been getting dilaudid every time she went to the ER.... and has gone to the ER sometimes 4 or 5 times in 2 or 3 days. Jill has also said that she has asked for the Dilaudid...."the only thing that helps me" and gotten angry if they would not give it to her. Now perhaps she is no longer getting it. If that is the case, then BRAVO!! and STAY away from it. But it wasn't too many days ago that she DID get it. You see, when I look at that list... I think that it looks like just piling drugs on drugs. Most of them proven basically ineffectual for CH treatment. Ever hear a doctor referred to as a "pill" doctor? Not all doctors are good doctors. And I don't see how any of the new drugs can be effectively evaluated without clearing the system of all the other stuff first. One, every now and then when it's bad is still one. Only getting Dilaudid at the ER is still putting it in the system and its not all magically gone in a couple of hours. It takes a long time to detox from narcotics addiction and a very short time to become addicted. One can become addicted even following all the doctors instructions to the letter. Even with a doctor watching you carefully. And you can become addicted with out even knowing it...until you try to stop. Put Dilaudid in a search engine...you get a whole lot of sites dealing with Dilaudid addiction. The one thing I know... is that when Jill first came to this site, she was an intelligent, thoughtful, creative person, with a lot of pain, just like the rest of us. Lately, she has been in a drugged up fog. Repeating things, forgetting things, making no sense....And this is BETTER? It makes me sad. And that is all I have to say on this subject. I wish you good luck. Sherry |
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Title: Re: Chronics - Cycles within Cycles Post by Wendy the Brit on Jul 2nd, 2003, 11:21pm Jill and Barbara There are enough upset and angry words here so I will be as brief and as unemotive as I can be. I am very sorry that you have both been distressed by what people (including me) are writing. That is not my, nor I hope anyone's plan. I'm sure you come here because the wealth of knowledge and support is beyond measure. But there is also a huge gang of people in the same kind of pain, so with the same strong feelings, strongly expressed. This leads to debate and sometimes anger. Jill gets given 'tough love' here now because many people have watched helpless and frustrated,trying to help over a long time now. It may be a wrong impression but how it reads is: 1. Jill is a chronic cluster sufferer whose condition is resistant to treatment. 2. Jill gets clusters, shadows and rebounds so life is hell 3. You both have suffered a terrible loss and a total life change, making life even harder. 4. Jill is bright, shy, young and vulnerable. All these suggest she especially needs help (we all do, but she in particular) 5. When Jill posts, she now provokes strong feelings for two main reasons. She has posted the same things many, many times without the situation seeming to improve, and she is taking drugs which seem both ineffective and in some cases dangerous, archaic and inappropriate. 6 Jill, you also almost always say "I didn't mean to cause an argument/debate" whenever the comments are direct or tough. This looks to us as if when you hear this stuff, you close off and run. This is understandaable, but very upsetting as we want to help, but your ears seem closed unless it is what you want to hear (e.g. empathy, sympathy, miracle cure, magic wand) I KNOW WE ARE NOT IN YOUR SHOES, BUT SOMETIMES THAT MAKES OUR VISION CLEARER THAN YOURS. YOU, YOUR MUM AND MARTY ARE LIVING IT, NOT SEEING IT PERHAPS??. I see this and express it as clearly as I can: You are doing the best thing possible, getting of most or all of these drugs THEY AREN'T WORKING, THEY MAY BE MAKING YOU ILLER There is no miracle cure, BUT, your condition, if being treated here would probably be perceived as being so recalcitrant that you would be taken off all the meds that weren't working, pulled back to preventive and abortive and possibly ONE modern drug for sleep aid (not Thorazine), go with this for a period of time to see if the condition improves, if it doesn't then get referred/assessed for more drastic treatment. This might mean an invasive procedure (some are more risky than others) but if I were in your shoes I would certainly investigate this very seriously via your neuro. From what you say about the doctors getting you off some of the drugs, they may be planning this anyway, but the overall message is: JILL AND BARBARA-TAKE ADVICE, BUT TAKE CHARGE. JILL TAKE OWNERSHIP AND CHARGE OF YOUR OWN CONDITION AND STATE OF MIND AND DO SOMETHING OTHER THAN TAKING THE DRUGS. BARBARA-HELP HER TO DO IT/MAKE HER DO IT! I can't see how else you can go on. I can't see a choice here. Surely???????? Sorry, I'll go now. I won't wish you luck, this isn't luck. I wish you the strength and the family and friend love and support you need to make this happen. That love is still here, whatever you may think at the momeont Wendy |
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Title: Re: Chronics - Cycles within Cycles Post by Linda_Howell on Jul 2nd, 2003, 11:44pm Barbara, Now I have one more thing to say. Margi is probably the greatest supporter of all time. She is, not only a mother, but one of the most caring sweetest women you'd ever want to meet. She truly cares, not just doing lip-service. Don't kill the messenger. LindaH |
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Title: Re: Chronics - Cycles within Cycles Post by Ted on Jul 3rd, 2003, 12:03am Y'all shut up now. You all said your piece. It's now time to shut the fuck up in the most rewarding way you can take that sentence. I fully agree with Margi. But what are you all doing? Making somone comfortable with a decision or proving how fucking clever you all are by stating the same thing over and over? Just shut the fuck up. If you think repeating what's been said over and over helps then you're nuts. If you're doing it to say "Hi guys. I want to say what you say for my own petty-ass approval," then it's as petty as you thought. The point was made. Have something new to add, add it. Just want to jump on the heap? You're not helping, as you know. You're just doing a hog pile of don't-you-just-love-I'm-agreeing-with-you?, which is NOT needed here! |
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Title: Re: Chronics - Cycles within Cycles Post by cathy on Jul 3rd, 2003, 12:10am on 07/02/03 at 22:11:47, fjb wrote:
Barbara im sorry you feel the way you do, but all anyone is doing here is caring....but hey what the hell. Wishing you PF times Jill, sorry that sometimes people just can't see the wood for the trees... Cathy |
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Title: Re: Chronics - Cycles within Cycles Post by Ted on Jul 3rd, 2003, 12:20am I rest my case! |
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Title: Re: Chronics - Cycles within Cycles Post by Georgia on Jul 3rd, 2003, 2:50am Perhaps I am being paranoid. Perhaps I have seen too much on this board. Perhaps I hate seeing fellow ch'ers banging their heads against a wall in what seems to be a futile attempt to help someone. Perhaps there is more than one reason the information and advice being given is not getting through. I can only pray that my gut feeling on this is wrong...I am not making any accusations or assumptions, I am just presenting what I was told. I called four different pharmacists tonight at four different 24 hour drug stores. I asked them a few questions about the drugs that have prescribed to Jill. They all said that they had seen Thorazine prescribed as a sedative; a single dose; a three day dose, at most, in order to sedate a patient who is hallucinating, who is delusional, who is out of control - until other treatment begins working. If it is being prescribed for daily dosages, according to these four pharmacists, it is being prescribed as an antipsychotic. When I told them the rest of the drugs - they all told me the same thing; that without knowing the patient's history it is diffiuclt to say for certain, but that it would appear to them that there was more than one disorder being treated. When I asked them to clarify that for me, they said it sounds to them like a combo for the CH and for anxiety, depression, and/or schizophrenia. I am not a doctor. I am not a pharmacist. I am chronic clusterhead who has seen a lot of dr's and been prescribed a lot of different drugs; a chronic clusterhead that has been on this MB for over four years and has seen a lot of people, their stories, and their treatment plans; a chronic clusterhead that thinks the distinct possibility exists that something just ain't right here. If I'm wrong, and I really hope that I am. I'm sorry. |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 3rd, 2003, 5:03am Well it is 5:30 and here I am... " Yep, this is why I don't post on these message boards. Why because you don't like the truth..??" No because at this time and place you are not in my shoes, and I am not in yours Georgia, when you called all those pharmsists about the thorazine, did you tell them what dose she is on? Somebody posted that the thorazine thing has been beat to death. I agree. Like it or not it works with the benidryl and helps her sleep. I realize you are just trying to help. And right now I am just too tired to argue. So tell me if in your opinion she shouldn't take any meds, how is she supposed to get some sleep? If she doesn't get enough sleep the clusters get worse. So aren't we in a real catch 22 here? Jill is still that bright funny person she always was, but since last week the clusters are taking a toll on her. On all of us. And yes, the celexa is for depression. Jee I don't know WHY she would be depressed. Ted, I'm sorry I didn't understand your post at all. Two weeks may not seem like such a long time to you...right now every night sems like forever to me... Excuse me, Jill is haveing an attack now and I am going to go sit with her since I don't know what else to do. Barbara |
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Title: Re: Chronics - Cycles within Cycles Post by Charlie on Jul 3rd, 2003, 5:51am Uh.....read Ted about a dozen times. All I know is that clusters respond to drugs of many kinds but for your own sake, be careful. It's like anti-biotics: Don't overdo it. It's not necessarily the fault of the patient. This thing frustrates medical types so some try everything in their Merck's. Oh and be nice kids. :-/ Charlie |
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Title: Re: Chronics - Cycles within Cycles Post by Margi on Jul 3rd, 2003, 9:33am All right, my last words on this subject. Barbara, PLEASE just do one more thing for your daughter. Get a second opinion and diagnosis from a DIFFERENT neurologist for Jill. Don't waste any more time with a GP. Here are the cluster knowledgeable doctors in Maryland: Marcia Ribeiro Baltimore Fred Cantor Wheaton Dr. Alan Genut Towson If she truly IS experiencing cluster headaches (and not something else), she SHOULD have at least responded to ONE of the cluster meds she has tried by now. I'm just worried that Jill is going through something different than clusters here. And the myriad of other meds she's on could VERY well be masking underyling symptoms - BARBARA! THAT COULD BE LIFE THREATENING FOR JILL!!! This really doesn't sound right - I agree with Georgia, and I've felt that since that first weekend I spent with Jill in email. She really does exhibit some symptoms that don't fit the profile for cluster headaches. The treatment plan you've got her on is NOT WORKING. List out all the meds she's on right now with a new neuro - please be honest with him/her about this - it's crucial for Jill's survival and ultimate relief. Please, Barbara, start from scratch and solve this for your daughter. If you need me to help you get in to see one of these other neuros, please email me at moxie_miss@hotmail.com. Mother to mother, Barbara, I really do want to help, ok? p.s. Linda and Ted - you're both my angels. Oh and Ted: you said "y'all". :o |
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Title: Re: Chronics - Cycles within Cycles Post by fubar on Jul 3rd, 2003, 11:15am [fuggetaboutit] -self rightous ass that I am |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 3rd, 2003, 5:51pm From the fist paragraph of that post, Shawn, I wouldn't guess you were a self-rightous ass, would I. I HATE all the meds Jill is on, I have HATED them from the beginning. I have always felt there were too many, too strong, and some not given a chance to work. And I HATE that some of you who are now telling me she is taking too many meds SENT HER DRUGS IN THE MAIL LAST YEAR. If you had asked me that I would have told you that instead of you all just assuming you know me. If I wasn't listening I wouldn't be still here. But nobody has answered my questions in my last post, have they, and yes we do discuss Jill's meds at our house, since you aren't here you wouldn't know that. How many neuro opinions do you want? She has seen five different doctors, all have the same opinion. She has had cat scans, mri, mra, lab work, whatever. I almost they found something so we wouldn't be chasing ghosts. Today she spent 4 screaming hours in the ER, Marty had to deal with an not a very nice person doctor who wouldn't listen and gave her diliaded even though Marty asked him not to, the doctor had never treated clusters, so he started to treat her with meds we know don't work. THERE IS NOT AN ABORTIVE THAT WORKS FOR HER. Imitrex does not work, she stopped using it, and she is not taking the celebrex. The only thing she has left is the thorazine and benidryl and no, I don't like it, but I have seen the alternative, thank you. And before you start calling people addicts maybe you all should take a good look at yourselves. Make sure your house is in order. Cigarettes, booze, gambling, chocloate, overeating are all addictions. How many do you have? Do not tell me they are not as harmful- Ralph was addicted to food and overeating was a direct cause of his death. You are right, her treatment plan isn't working. Right now we are just trying to get through day by day. Don't you think we want to find something that will help her? Don't you DARE sit in judgement of us, we are doing the best we can. The other reason I don't post on these boards is I do not like my private life spread out in public. So if you have something constructive to say please email me at rajibar@netzero.net If you are going to berate me about being a bad mom, thorazine, or mushrooms don't bother with the email, yell it out the window somebody is more likely to hear you. I have wondered about if a little weed would help her headaches, though. If you want to talk to me I will send you my phone number. For those of you asking about Marty, he is working, he tells me he is happy, but worried about Jill, and that is all I will say about him. You can email him yourself. Barbara, who is well and truly pissed off right now. |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 3rd, 2003, 5:56pm One last thing- I will send that regulater as soon as we find it, this place is such a mess right now it is probably in with the stuff from California. Give me your address so I can personally deliver the damn thing and shove it so you don't loose it again. Still pissed, Barbara |
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Title: Re: Chronics - Cycles within Cycles Post by Not4Hire on Jul 3rd, 2003, 6:33pm hmmmm...read this: http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm the regulator is NOT for *suppository* use.... maybe that's why it didn't work for Jill... :-X |
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Title: Re: Chronics - Cycles within Cycles Post by Ted on Jul 3rd, 2003, 10:49pm And here I was the one asking people to stop if nothing new was to be added. Well, this is a new part of it. Barbara, I can't speak for those who sent Jill drugs. I can only speak for me (and are you sure they sent her Thorazine and not Imitrex or Maxalt?). All I did was offer to drive down to her in college and give her my O2. Why did I do that? Because of what no one else here is willing to say. Because her blood family was not taking care of her. How many times did I have to make up excuses for you? You all sat there and treated her like she was wimpy for not dealing with "just a headache." She came to us, me, crying about how her family hated her. How they refused to listen to the pain she was in. How many times did I have to come up with excuses for YOU blowing her off and not listening to her and making her feel hated? Yeah, you're doing a good thing now. But we picked up the pieces of YOU letting her suffer with no blood family being there. You think you have a right to scold anyone here? We were there when YOU weren't! When you weren't for your own daughter! How do you think she found this site? By being desperate when her family made her feel like shit. So, as you said, you check your own shit before you accuse! Because we were there for Jill, while you were making her feel like shit. And yes, I do expect her to be the one to try and make up the justifications for this. It must be hard to be 20 and see your mom be called out on her lack of being a good mom in front of others. But where the hell were you when she felt she had to come to us? |
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Title: Re: Chronics - Cycles within Cycles Post by 9erfan on Jul 4th, 2003, 12:19am Ted, excellent post! Couldn't agree more! I've avoided responding to this thread up to this point because it just pisses me off! Just an observation....Jill, you started this post on June 25...if you had taken the advice of the folks who tried to help....your 2 week detox would be almost over! But instead those 9 days have been spent in further denial. Yes detox would be tough...but you're already "dealing" with this excrutiating (sp?) pain...is 2 more weeks going to make that big of a difference? Don't say we don't know what you're going through, because we do and that's the point. I could go into detail about my story and how I felt like I was at the end of my rope, but it wouldn't matter...you wouldn't listen anyway. |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 4th, 2003, 12:24am I don't need anyone to make excuses for me. As hard as it is to believe we didn't know how bad Jill's headaches were until after Christmas. And if you don't think I beat myself up over that all the time you are so wrong. She hid them from us so well, I spoke to her on the phone several times a week and everything seemed fine. If one of you, just one, had picked up the phone and called us, didn't even have to give us details, just tell us that something was wrong, we would have been there. But no, she turned to the board and you welcomed her, and NOBODY PICKED UP THAT PHONE AND CALLED US. What is wrong with this picture. DON"T YOU THINK YOU SHOULD HAVE CHECKED? Not just the board, but her roomates and her school. Yes we made mistakes, should have KNOWN something was wrong, but we didn't. Jill and I are very close and I should have KNOWN. I can't go back and change the past I can only make sure I don't repeat my mistakes. Try making sure you don't repeat yours. Don't assume you know the whole story, if you don't you just make an ass out of yourself. Barbara - still pissed... |
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Title: Re: Chronics - Cycles within Cycles Post by Peppermint on Jul 4th, 2003, 12:33am Actually it goes like this: Don't Assume because you make an ass out of u and me. And that's no fuckin joke. Who's making assumptions now? |
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Title: Re: Chronics - Cycles within Cycles Post by Ted on Jul 4th, 2003, 12:38am Hi Pissed Barbara. I already determined a no response to anything you said to us but I didn't expect this to be the answer. She hid it from you? I was told she tried every way on earth to make you understand. That you thought it was all a matter of having a headache like you do when that slight ache reaches out to you. Why didn't we pick up the phone and call you? I asked her many times if I could do that and explain it all to you since you obviously weren't picking up from her telling you how bad it was. So did other people. I know of at least one other person who wanted to call you and explain it to you and offered that. And we were told that would make it worse for her because you hated her and would ridicule her more if we did. I'd e-mail this to you but I doubt only a few of us were told this and it should be out there. Either you're telling us this for your own appearance or Jill fed us a LOT of shit about her family. Ted, the one who makes an ass of himself. |
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Title: Re: Chronics - Cycles within Cycles Post by kim on Jul 4th, 2003, 12:45am BARBARA! Pik up the phone and call you........that's your answer to all of this? Barbara, Helen Keller could have been onto the truth 4 yu. Seems odd that you prefer to fight here than where you should be fighting. Get goin. We'll be fine. That's a fact lady. It's sad how not fine you are. work on THAT. And really, that's all anyone here wants to see. Give your anger to the docs and FOR your daughter. Earn some REAL respect wydoncha. |
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Title: Re: Chronics - Cycles within Cycles Post by Margi on Jul 4th, 2003, 8:29am Damnit, I promised I wasn't going to respond anymore to this thread...but here I am again. ::) Thanks for posting what you did, Ted - I, too, urged Jill to let me call you. Linda and I even sherlocked to find your surname and your phone number. The anonymity of the internet is frustrating at times like this, it wasn't easy to figure this out. All we had to go by was the name of your small town. I talked to another sufferer in Maryland that finally was able to find a phone listing for you. We had it - I was ready to call, but Jill kept telling me that you wouldn't care and that you would be pissed - she pleaded with us not to call in fact. As a mother myself, that sickened me that a child would feel that way about her parents! So, feeling protective of Jill (as we do of all cluster sufferers who show up here), we didn't call but, instead, tried to help this kid ourselves. I could echo every single word Ted said in his above two posts. Especially retorting to your shot about this community sending your daughter drugs! I'd be willing to bet Don's kidneys that NOT ONE SINGLE PERSON from this website ever sent her narcotics. They would have sent her cluster meds. And Ted DID offer to drive hours to meet up with her to give her what was left of HIS oxygen. That would have left him with nothing, Barbara - if you fully understood cluster headaches, you'd understand how magnanimous and completely unselfish that is for a sufferer to make that offer. And Steve sending her his ONLY regulator? Wow! You give us shit for THAT? Unbelievable. I spent an entire weekend with your daughter in email, Barbara. I chair the Family Services Team here and I talk to a LOT of sufferers and supporters. I'm talking probably over a 100 emails in a month from people who are losing their patience with clusters. I consider myself pretty well-experienced in dealing with all the "joy" that this affliction brings and I can honestly say that I am pretty good at recognizing true cluster symptoms by now and also those that have been misdiagnosed. By doctors. With medical degrees. Imagine that. I can confidently say that I have never - repeat: NEVER - seen a sufferer be able to type so much, so many words, like NOVELS, when they are getting hit that hard. I would tell Jill something - usually it would be that she needed to talk to YOU about this - and she would write back that she was about to 'get hit' and she had to go. I am married to a clusterhead, I understand that urgency and the world, as we know it, stops for each attack. I understand that. I've personally witnessed and lived through in excess of 1000 cluster attacks over the last 17 years. I also understand that once the attack has passed, Mike usually is completely drained and needs to rest for a few hours - or hopefully find some sleep between attacks. But not Jill. She'd be back full force within a half an hour with another long email to me, having successfully changed the subject I had brought up about talking to her parents. At the time, I put it down to the resiliency of youth. But now, the puzzle pieces are fitting together. That, in itself, is reason to believe there is way more going on here, Barbara. As I said before, I have also NEVER seen a cluster sufferer not respond even a little bit to at least ONE of the cluster drugs out there. Ask anyone who truly lives with this disease. Some things - most things, actually - DO work for a little while in aborting or relieving the pain. But then, (Look! ANOTHER commonality) it's like the beast gets smart and an immunity is built to that drug. It stops working - but it HAD BEEN working. But not with Jill. If this were me, hearing all this about MY daughter Barbara, I'd be totally crushed. I'd feel horrible that my child had gone through this and that she'd put other people through this. I know this must be hell for you to be reading these words - I honestly do feel for you here. Criticism is never an easy pill to swallow, but I also know the people of this website fairly well. These words are sent to you out of concern and genuine care. We ALL want Jill and your family to find relief - we truly do. Consider this a tough love approach but please.....DO something about getting your daughter some help. Other than just biting back at us here - SHOW us that you are doing something proactive for Jill. Call one of those cluster neuros that I mentioned. Read some of the buttons here to the left. Prove to YOURSELF that Jill is on the right treatment program. There is a wealth of information here to assist you with this Barbara. Even if it assists you to recognize that maybe your daughter doesn't have the disease for which she's being treated. But - DO something. |
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Title: Re: Chronics - Cycles within Cycles Post by Mastifflvr28 on Jul 4th, 2003, 10:36am btw...Jill should NOT try the shrooms. It's not safe if there are other mental issues going on. Mast |
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Title: Re: Chronics - Cycles within Cycles Post by brain_cramps on Jul 4th, 2003, 12:19pm Jill / Barbara: I've tried to sit back and watch this quietly, but have just one question: Jill... When were you first prescribed Thorazine? grant |
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Title: Re: Chronics - Cycles within Cycles Post by Elaine on Jul 4th, 2003, 12:56pm I have read this thread over and over word for word. What I think is this. Barbara and Jill are FULLY OF bull shirt ! I am done with it !!!! |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 4th, 2003, 5:32pm I WILL NOT put my private life on a public forum for a bunch of strangers to get their rocks off with a peep show of my life. Sorry, no. What Jill told you I don't know, but it is a private matter with me. Helen Keller might have been aware of Jill's attacks but she might have taken a step back and signed "WHAT IS WRONG WITH THIS PICTURE?" And Ted if you don't want to post anymore and take you friends with you, OK, you can have the playground to yourselves, but that is so-oh, I don't know- 5th grade. Try reading my posts and get them right. I never said anyone sent her Thorazine, it was Maxalt and Imitrex I believe, both prescripion meds not written to her. Grant, she started taking the Thorizine right after Easter. What was the dose your father took? Nobody has to sit by and not respond to these posts, you are all assuming we are not working on a plan for Jill, that couldn't be farther from the truth. Barbara |
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Title: Re: Chronics - Cycles within Cycles Post by Roxy on Jul 4th, 2003, 5:37pm on 07/03/03 at 17:51:27, fjb wrote:
I'm just a little confused here about a few statements. Jill won't use shrooms (a proven treatment for ch), because they are illegal. But, you are willing to try weed (which doesn't help many ch'er's). Was I asleep when they legalized weed? Did I miss something here? BTW: Ted's posts were honest and thought out, don't call names just because a person speaks the truth. |
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Title: Re: Chronics - Cycles within Cycles Post by jonny on Jul 4th, 2003, 5:44pm Am I the only one that hears the violin playing? Jill is Barbra .................................jonny |
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Title: Re: Chronics - Cycles within Cycles Post by suzy617 on Jul 4th, 2003, 6:00pm This is the first time I'm speaking on this thread (I think, its so damn long) but I'm tending to agree with Jonny. Just dont understand if they feel so strongly about with what they speak that they just keep coming back. If it was my kid and I disagreed with everyone else here, I'd leave and never come back. So here I stay still confused......(hey and the 7 coors lite I had earlier didnt help matters. ;D ) suzy |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 4th, 2003, 6:03pm Sorry Roxy, I thought his name was Ted. Never said weed was legal, never said I was going to buy it, never said she was gong to smoke it, it was something I wondered about. I have a friend who used it [and may still] to combat the nausea from the HIV cocktail he had to take. Jonny, my name is spelled Barbara. |
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Title: Re: Chronics - Cycles within Cycles Post by cathy on Jul 4th, 2003, 6:33pm on 07/04/03 at 18:03:26, fjb wrote:
Actually Barbara what you should have written was :- Jonny, my name is spelt Barbara. Cathy |
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Title: Re: Chronics - Cycles within Cycles Post by 9erfan on Jul 4th, 2003, 6:36pm I tend to agree with Jonny. I was starting to think that "Barbara" was Jill as well. Oh well, at least we know where the denial comes from. |
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Title: Re: Chronics - Cycles within Cycles Post by jonny on Jul 4th, 2003, 7:14pm Nobody here wants help, please stop posting to this thread and post where help is needed. TY .............................jonny |
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Title: Re: Chronics - Cycles within Cycles Post by Ted on Jul 4th, 2003, 11:06pm Jonny, sorry, I agree but this all strikes of "another" person so I've got to ask... on 07/04/03 at 18:03:26, fjb wrote:
My name IS Ted. And just what the hell is yours? Honestly? (Thanks Tracey!) |
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Title: Re: Chronics - Cycles within Cycles Post by Jill on Jul 5th, 2003, 12:30am Okay - this is utterly ridiculous.... My mom (Barbara) is fjb on the board and, for all that is good, please quit berating her. Geesh.. I havent posted on here because I have nothing to say to you and you all being ridiculous, petty and not helping at all now. That is all to say.... Jill |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 5th, 2003, 12:54am I told Jill not to post on the board- I don't need anyone to stick up for me, I can fight my own battles. Yes this is really Barbara, why on earth would you think it was somebody else? Why keep posting? It is really entertaining when I am a little bored and to be honest Ralph and I used to have some heated discussions and I miss that. I really would like you to answer some of the questions I asked. I am grateful for the help you gave Jill in the past, I am just not ready to nominate you for sainthood just yet. I wish things had been done a little differently on everybody's part, including mine, but what is past is past. I believe everything happens for a reason even if we cannot always see the larger picture, and fate leads the way for us. And Cathy I though a spelt was a fish. Barbara [not as pissed tonight] |
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Title: Re: Chronics - Cycles within Cycles Post by Wendy the Brit on Jul 5th, 2003, 2:27am Barbara and Jill Wasn't going to post again, but can't help myself. Sorry folks. Perhaps if you aren't as pissed, there is some point. You never know! Barbara, this thread has got so upsetting for EVERYONE who cares that I think your questions may have got lost. To call this board entertainment is insulting to a lot of people for whom it is their lifeline, literally. If you have genuine questions you would like answered, why don't you either start a new thread, without loads of other words and clearly number the questions so they can't be missed or message them to one of us who can get the answers for you (if there is an answer of course) The wealth of knowledge and experience here is a others say, more than several of the best neuro's combined. But only if you listen to it. FATE?FATE? I'm amazed you see it like this and it does explain your passivity in the face of things. Getting CH may be fate, taking your own and Jill's destiny in your own hands and taking charge sounds more of a good idea to me. Jill You have missed the point utterly, totally and completely as you always do. This isn't petty. This is an endlessly helpful group of people who have got so distressed and so angry and frustrated with you and now your mother as well , that they have been brave enough to say what they really think at considerable expense to their own state of mind. If you think this is petty, then I think you should go back to the other boards you post all the very same things on. Or have you alienated all of them in the same way as you have the people here???? Your condition in England is known as "Wooden leg" not CH. This means that you use your wooden leg as your excuse for everything, and you actually like having a wooden leg to show to everyone and talk about. If your wooden leg was taken away, your world would fall apart. The extreme version of this is known as Munchhausen's syndrome. Wendy btw since the pettiness has come up spelt is the past tense of to spell. We only know a smelt as a member of the fish family. |
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Title: Re: Chronics - Cycles within Cycles Post by brain_cramps on Jul 5th, 2003, 2:42am on 07/04/03 at 17:32:21, fjb wrote:
First of all, it was NOT my father. It was my grandfather that was on Thorazine and schizophrenic and I'm NOT sure of his dosage. That being said... on 07/04/03 at 17:32:21, fjb wrote:
REGARDLESS of the dosage, WHY, on Dec 4th, would she include Thorazine on a list on 30 meds (prescription, OTC, natural) that she had taken with NO relief? It would be more than a little misleading to ANYONE (not just ER doctors or neuros) to tell them that Thorazine had already been tried in the past. The following is a list of meds that Jill had apparently taken between "early 2002" and December 4th with NO relief! Motrin 800 mg Afrin (nasal spray zyrtec 10 mg BID Fiornel Midrin Imitrex 50 mg pills, 100 mg pills, nasal spray and shots Verapamil 80 mg, 200 mg, 270 mg, 360 mg QD Flexeril 10 mg TID Neorotin 100 mg BID (allergic to) Indocin 25 mg TID (makes me sick) Amytriptiline 10 mg Clavil Prednisone (twice) 5 mg-started at 60 mgs then tapered down(11 days) Topomax 25 mg BID (caused dizziness, tingling, funny feeling) Sansert 25 mg BID Depakote 250 mg TID Thorazine 25 mg BID Folic Acid 1 mg QD Ambien 5 mg QD (for sleep--clusters still woke me up) Phenergan 25 mg (as needed --nauseau) Secobarbital feverfew DHE IV fluids-one week hospital stay Pamelor 10 mg QD Lithium 300 mg BID (caused lithium levels to go crazy) Amerge (as needed) Oxygen Dramamine Benedryl OTC meds (advil, tylenol, etc) << Barbara/Jill If you want a copy of the e-mail, just say so...>> A number of these meds take a while to take "kick in". Verapamil, Lithium, Prednisone, and others ARE NOT (as far as I know) effective overnight. In fact, to know the results of the above treatments AND the combinations thereof, would probably take quite a while (IMHO). Jill knows how often we spoke/emailed, and I'm just a little curious about the discrepancies involved with the timing. grant ??? ::) geesh, Jill..... Sorry about quoting your email, but what can I say? Any comments, anyone? |
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Title: Re: Chronics - Cycles within Cycles Post by gene on Jul 5th, 2003, 3:35am Hi Jill, Very sorry about your dilemna. I can't imagine that Vicoden etc. really helps at all! I've sure taken my share over the years, but for me I know very well not to take any while in cycle. Do you get an attack if you have a drink? Is it worse than an attack not preceded by a drink? All of these narcotic pills do exactly the same thing that a drink would do FOR ME/ trigger a 10! It's extraordinary to me, the huge number of similarities re: symptons, responses to meds etc. we all share. I haven't heard anyone, including you, mention the attack ending, or improving, as a result of taking them. Can you describe what happens when you take the vicoden. How it helps? I'm new to this site, so this notion of quitting all med's for 2 weeks "in cycle" must be terrifying! I'm episodic and if someone told me I'd never get another CH, if I lived through one whole cycle Med free/ I'd be shaking in my boots!! The problem for me is these bastards come one at a time/and I desperately want to kill THIS attack. Seems to me you have a whole group of people that really give a shit about you. Lucky Girl! Good Luck dear, Gene |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 5th, 2003, 5:58am First, Grant, I didn't realize it was your Grandfather on the thorizine, sorry I should have reread your post. I was asking about the dose because I was worried about Jill taking it- however it has stopped working now so there is no point in her taking it. Second, I came into this so late- no this is not an excuse- I really don't know what Jill was taking while she was up at school. Or while she was in California. I only know what she is taking now. I didn't have any idea there were so many meds until she started to make a list for her doctor here. And I agree- some of them she was on for such a short period they never had a chance to work. What a mess. Perhaps fate wasn't the right word to use. I am not a passive person, and I am trying to help Jill and fix this. Maybe not fix it but at least help her get her life back in control. It is very frustrating not to be able to make this all better like I could when she was little, but we are working on it. Yes Jill is lucky to have so many people that care about her- at home and here. Barbara |
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Title: Re: Chronics - Cycles within Cycles Post by kissmyglass on Jul 5th, 2003, 10:02am Glad we could entertain you Barb.....Have a nice life... I'm done Kev |
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Title: Re: Chronics - Cycles within Cycles Post by Wendy the Brit on Jul 5th, 2003, 2:13pm Be fair Kev, we all say stuff on here when we are angry (pissed means something different here!) That last post is reasonable and honest, hope we can make progress Barbara, for your, Jill and our sakes. Asketh for help, and it shall be given Throw it in people's faces or ignore it and the wrath of the board falls upon ye, (or some such Biblical type phrase) Here's hoping but not convinced yet W the B |
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Title: Re: Chronics - Cycles within Cycles Post by brain_cramps on Jul 5th, 2003, 7:07pm Barbara: Apparently you missed the point I was trying to make: on 07/05/03 at 02:42:58, brain_cramps wrote:
speechless :-X, grant |
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Title: Re: Chronics - Cycles within Cycles Post by Locomotive_Skull on Jul 5th, 2003, 8:54pm This entire thread is one helluva read. Barbara, I don't know your daughter. Hell, I don't know anyone on this board for that matter! I have no idea about your daughters posts or anything else in the past, but would like to say something to you. Take it as an "outsiders observation" maybe. I have gone 13 years and never spoken to one single soul who knew what I felt. What I go through EVERY SINGLE day. I never even knew anyone else suffered from this affliction. I give you credit for trying to understand what your daughter is suffering from. It is (as I am sure you have heard) the most painfull feeling imaginable. At least for myself, and it seems like a few others now as well. Obviously you and your daughter do not have to frequent this board. None of us do for that matter. It does show me that you care, and that said, I feel for your daughter, Jill, and her husband (LOL, even though I can't stand cops!) who lives with this affliction as well. I am not a medical expert in this field, nor do I have any advice about how you guys can handle this. I have noticed that the cluster family involved with this board are very tight, and they DO help each other out. They may be confrontational and set in their ways, but they are only responding because they do care. What other choice do they have Barbara? |
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Title: Re: Chronics - Cycles within Cycles Post by jonny on Jul 5th, 2003, 8:59pm on 07/05/03 at 20:54:01, Locomotive_Skull wrote:
Duh!!!....think you know all now? ..............................you dont know Jack....even I dont know him |
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Title: Re: Chronics - Cycles within Cycles Post by FrankF on Jul 5th, 2003, 9:17pm http://rage.kicks-ass.net/funny/thisthreadsucks.jpg |
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Title: Re: Chronics - Cycles within Cycles Post by Locomotive_Skull on Jul 5th, 2003, 9:53pm on 07/05/03 at 20:59:51, jonny wrote:
Oh boy. Guess I don't know jack do I jonny? Even you don't know huh? Guess if "King cluster" don't know him, gee, none of us do. Well internet pirate, when you do know Jack, clue this ignorant bastard in huh? ??? |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 5th, 2003, 10:13pm Yes this thread is a hell of a read. It's kind of like one of those trashy TV shows that you know you shouldn't watch but you can't quite bring yourself to turn off. Grant, you are right I am missing the point somewhere. If I didn't know Jill was or wasn't on Thorizine how can I tell the doctor? She made the list for the neuro, I don't remember everything that was on it. Moot point since it is no longer working and she is not taking it. And if you are mad at me for these posts leave Jill out of it. She has enough going on right now without you tearing her up. The wrath of the board doesn't scare me at all. You wanted people to post, look at all the hits this thread has. Sticks and stones, you know. Serendipity was the word I was looking for before, not fate. It means to find good things in an unexpected place. I don't know who Jack is either, but he probably can spelt smelt. Barbara [a little tired tonight] |
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Title: Re: Chronics - Cycles within Cycles Post by Wendy the Brit on Jul 6th, 2003, 3:15am BarbaraJill I can't believe now that I was stupid enough to think you were being half way reasonable and were listening. I am so, so sad. Any hope I had is gone. I am devastated that you feel able to belittle, abuse and denegrate this site and the people on it who have spent so much time trying to help you and your daughter. You HAVE NO IDEA what it has cost people over the long time Jill has posted We have very difficult lives here with this condition but I have never seen the people here rejecting Jill or you or Marty until now. You show yourself so clearly here as a mean spirited and unpleasant woman who will listen to no-one and thinks it is clever to abuse people. I now begin to believe some of the stuff Jill used to say about her home life and can see why she has so many problems above and beyond CH. You do yourself no favours, and I despair that someone who posts such things could ever be any help to anyone or to themselves. God help you both. I mean this sincerely as I have faith only now in that, you now leave me no hope at all. You'll be glad to hear and so will everyone else that I am done too now. Thank goodness my mother quietly and firmly enabled me by the lessons she taught me,and the advice and help she gave me to live my life happily, supporting and helping and advising without antagonising or interfering.I am too dispirited and upset to try to talk to you again, an excuse for a parent/person who would denigrate a board and people that have literally saved lives. Trash it is not. A game it is not. The best thing that ever happened to a lot of desperate people who before it was here felt alone, it without doubt is. God give you the strength to see things more clearly in the future. Wendy |
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Title: Re: Chronics - Cycles within Cycles Post by Slammy on Jul 6th, 2003, 3:20am Well... I have no problem in saying that this thread has blown me the fuck away! :-/ Before I provide my profound slammy input to this thread..... I must talk with Margi..... I'll give ya a call... Slammy 8) |
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Title: Re: Chronics - Cycles within Cycles Post by jonny on Jul 6th, 2003, 5:58pm on 07/05/03 at 21:53:26, Locomotive_Skull wrote:
You got KING right thats all that matters ...........................jonny |
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Title: Re: Chronics - Cycles within Cycles Post by Linda_Howell on Jul 6th, 2003, 7:02pm I've been gone for 4 days and lo and behold this thread is stil;l here. Ted, YOU"RE right! Finally. lol Margi. you know.........I remember that! Trying to locate the parents and everything. That was 2 yrs. ago. No-one here ever sent your daughter anything illegal, Barbara. The only reason I ever suggested "shrooms" to Jill. Is that it's one tried and true method out of all the other heavy duty drugs she hadn't tried. Why not......she's been on enough narcotics to kiill me!!!!!!!!!!!!! Barbara, These people here have posted(how many pages now?) not because they're mean people. They've posted because that's what we do. We try to help until there's no recourse left. Linda |
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Title: Re: Chronics - Cycles within Cycles Post by fjb on Jul 6th, 2003, 9:31pm So far I am mean spirited, unpleasant, stupid and I am sure the bitch of the east coast. All from a bunch of people who have never met me or spoke to me personally. Gee, I am crushed. The one thing I am is out spoken, I will not lie to you and I will tell you straight most of the time. The rest of the time it is none of your business. Since this thread has become pretty much a bashing contest, time to quit. Thank you for your input. Barbara |
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Title: Zzzzzzzzzzzzzzzzzzzzzzzzzz... Post by Drk^Angel on Jul 6th, 2003, 10:41pm *Yawn* Did I miss anything? Hmmmmmmm... Guess not... Goodnight. PFDAN................................... Drk^Angel |
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Title: Re: Chronics - Cycles within Cycles Post by Linda_Howell on Jul 6th, 2003, 10:41pm Good-bye, I'm done. LindaH who hates giving up. |
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Title: Re: Chronics - Cycles within Cycles Post by fubar on Jul 7th, 2003, 12:03am I just want to say something that I hope everybody will listen to and remember when trying to interpret and respond to posts on a message board like this... Some topics can become quite personal, and not in a way that the subject of attention wants to discuss in public. I have been struggling with this thread in particular, trying to imagine what it would be like having a possible drug problem being discussed and rehashed for all the world to see. I'm thinking it would be a difficult topic to discuss openly (in public) and even harder to take the kind of criticism that we have been doling out. Imagine how many friends of Jill's might be on the board. Friends of the family. Friends of Marty. This is a lot of exposure. Sharing your stories of cluster is one thing, but when it turns to accusations of drug abuse, it's entirely different. All I am saying is, there might be more to the picture here than meets the eye, and maybe it's not all just the awful things we have been speculating about. It may be that Jill and Barbara just don't want to discuss this particular topic in the open. Remember, Jill did not say "Gee guys, you think I have a drug problem?". Just a thought. Let's give it a break, and if people want to discuss this seriously with Jill or Barbara, you might want to take it to private email. I know I would never want to discuss my son's private issues in a forum like this unless he wanted it to happen, and clearly Jill does not want to discuss this in the open. -Shawn |
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Title: Re: Chronics - Cycles within Cycles Post by CathiP on Jul 7th, 2003, 12:10am Shawn- That's been done, and you have a point...maybe now this thread can drift to the bottom. CathiP |
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