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Title: Worse and worse.... Post by Jill on Apr 18th, 2003, 12:46pm Why is that just when you think that the pain of the clusters can not become any worse, they do? Just when you think that you cant be hit anymore often than you already are, you do? Just when you think that the pain of the last attack was the worst that you ever will feel, the next one or one later in the day is so much worse? Over the last fourteen months, the frequency, the intensity and such has ranged from being as manageable (for lack of better word) as they can be to becomming so bad that without the help of dilaudid there is no telling what would have happened. For months I can go with having the clusters so that I think that they are finally going to go away (wishful thinking in a sense) and then suddenly it changes causing me to go months where I begin to think that if I get hit that bad once again, I will die. Why is that? Right now, I am in the midst of those months and I have no idea what to do or how much more my mind and body are going to be able to handle. Since Sunday, I have been to the emergency room four times just to be pumped with dilaudid so that that hit will be aborted just to turn around a couple hours later and face the same problem. I think that I am in one of the worst parts now - the time when you think that it cant get any worse but it does or can . At 14:30 yesterday afternoon I went to the ER and was given dilaudid, a phentynol (sp?) patch that lasts up to four days and some other medications. Then at about 6:30 this morning, I returned to the same emergency room to be pumped with even more dilaudid to ease the pain. This is getting ridiculous now and is way too much for both Marty and I. I am not sure what to do at this point, what to try that I have not done before or whether I should just hope that it will end or slow down soon because I am totally worn down. I only get about an a half an hour to an hour reprieve between hits and I get anywhere from a half an hour to two hours (if I am lucky on the two hours) sleep each night and that just doesnt cut it. I have no energy to do anything and everyday I find it harder and harder to just complete the normal everyday tasks that need to be done. I did see Dr. Kudrow on Monday and he has ordered me to get an MR Angiogram done but if that comes back normal - which I have a feeling it will - then and I quote that I 'have to learn to deal with it with the help of pain medications.' He said this not only from his view point but also in respect to other neurologists - basically that they would all come up with the same conclusion, the can do nothing more for me. Not what I wanted to hear and am now scared out of my mind because I dont know what to do, what the future holds for me and how much more of my life is going to be controlled by this undefeated beast. I am terrified that I am going to have to live like this for the rest of my life with them this bad and having nothing to help to control them (I am just twenty years old) - if they were "lighter" than that would be a different story but not with them like they are now. I am looking for a solution to ease some pain because to ease all of it is probably an impossibility. However, after an appointment with my pain clinic doctor who took away the only pain meds that have done me any good, I no longer have a doctor in that area. And I do mean that he took them and disposed of them. Thankfully, the emergency room doctor yesterday gave me a new prescription for them - vicodin and valium. Right now we in the process This has gotten pretty long - much longer than I wanted - and I am sorry for that. I hope that it doesnt come across wrong or demeaning to others and if that is the case than I am sorry. I am hoping though, that you all have some ideas on what we can do next as far as finding help with this pain because I am out of ideas as all the doctors seem to be. Any help would be so much appreciated. Thanks, Jill |
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Title: Re: Worse and worse.... Post by Big_Dan on Apr 18th, 2003, 12:59pm I'm sorry for the pain that you're going through... my prayers are with you..... :-[ "Blessed are the poor in spirit: for theirs is the Kingdom of heaven"- Mathew 5:3 |
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Title: Re: Worse and worse.... Post by suzy617 on Apr 18th, 2003, 1:03pm Dear Jill, I havent seen you posting much so I was kind of hoping you were starting to feel better and get on with your life. Obviously that is not the case. I'm sooo sorry I cant be of any help to you as far as easing your pain but you are in my thoughts and I pray for your pain free days to come soon. I wish I could hug you now. Please be as strong as you have been, please dont ever give up. We all love you here! Suzy |
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Title: Re: Worse and worse.... Post by echo on Apr 18th, 2003, 1:16pm Like Suzy I was hoping that the cycle had gotten much better for you. Sorry to hear that your are continuing to be hit. Hang in the Jill, you are strong enough to deal with these. It will get better. It just has to! |
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Title: Re: Worse and worse.... Post by CJohnson on Apr 18th, 2003, 1:31pm Hey, Jill. Have you tried the "Shroom therapy"? I haven't, but if I was dealing with what you are dealing with, I would do it. If I had some I would send them to you, and if one of my loved ones were going through what you are going through, I would get some, take some myself to see if they were OK, and pour them down their throat. Of course, if you have tried it, then I should STFU. I normally do not believe in vibes, or other such things, but I guess anything is possible, and I'd be willing to take your next couple of headaches so that you could get a break. I don't believe in miracles, but this is a strange place, and it is Easter after all. What better time for the miraculous than now? -Curtis |
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Title: Re: Worse and worse.... Post by cootie on Apr 18th, 2003, 2:30pm Geeze Jill.....I jus wonder if the doctors understand or comphrehend the calaber of pain you have......I feel so bad you have to go thru this....and so foten....you'd think there has to be some sort of answer out there SUMWHERE....sumthin that could slow this down or abort them........I feel helpless......I hope you find what you need soon !!!! So sad Pam |
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Title: Re: Worse and worse.... Post by Marijke on Apr 18th, 2003, 2:39pm Jill, Just wish there was something I could do.... hugs, Marijke |
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Title: Re: Worse and worse.... Post by Edna on Apr 18th, 2003, 2:50pm Jill, so very sorry that the pain is still getting you.........why did the pain management doc take away your pills?? I mean I know that normally pain killers don't usually help ch, but if they were doing you ANY kind of good, why would he take them away?? Wishing you the best as always, EDNA (check your mail too) |
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Title: Re: Worse and worse.... Post by jonny on Apr 18th, 2003, 3:01pm on 04/18/03 at 14:50:14, Edna wrote:
Fear of addiction probably. ..............................jonny |
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Title: Re: Worse and worse.... Post by Frank on Apr 18th, 2003, 3:24pm Jill, In California, there is a law that says doctors cannot be held criminally liable or have their licenses pulled for prescribing pain medications in amounts that would ordinarily be considered gross negligence... if the patient is in intractable pain. Here's a link that briefly discusses the law and the California Medical Board's policy on it http://www.medbd.ca.gov/consumerguidelines.htm Maybe you should have a heart-to-heart discussion with your doctor to see if that's what his concern is (that he'll get sued or lose his license). Let him know that you are aware of the risk of becoming addicted to opioids, and that it is an acceptable risk (if it is). |
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Title: Re: Worse and worse.... Post by Jarvis on Apr 18th, 2003, 8:59pm Jill hi. Jill I have suffered like you many times and sometimes gone for years without a break. I know and understand where you are at. ... . It sucks. ... . I'm not sure if this will help or not but I caught on to the valium. For me any meds I took over the years that caused me to relax more than I allready do, would allways make things worse with my CH. Allways. The only meds that ever helped me even a little were stimulants of some kind or another. The lack of solid sleep definately doesnt help and then add relaxants and pain killers and hangover effects onto that and your going to hurt like hell. Now I dont know anything about drugs really, all I have is experience. Go for the buzz not the calm. Many of the illegal stimulants wich I no longer use have at times dead stopped the cycle for days. See if the docs cant try something in the stimulant area. Maybe someone like ueli can name some possibilities. I use ephedrin now to help a little, but its not good for the heart. .... . Over the years the more meds I tried the worse things seemed to get. Even worse when I switched around trying different drugs. Now I use no prescribed drugs and I find I can deal with it better. Of course I had to practice for many years first to go drug free. I am fortunate to be out of cycle and I wish you would be too. If I could I'd be happy to carry a few days for you. .......mj..... |
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Title: Re: Worse and worse.... Post by Jarvis on Apr 18th, 2003, 9:07pm One more thing I have never had a "certified" pain medicine stop the pain. I have tried a morphine drip and most anything else you can think of and the pain allways showed through it, sometimes I didnt care though... Didnt care about living either and thats no way to go. |
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Title: Re: Worse and worse.... Post by CathiP on Apr 18th, 2003, 9:12pm OH....MY....LORD.....this place is utterly amazing.....talk about miracles! For people who deal with CH to offer to carry Jill's hits, so she can have a break, KNOWING THE PAIN.....my God, it bring tears to my eyes. Sure, I wish it were possible, but how my heart swells to read more and more of the love that is at the core of this MB. There IS an answer, Jill- it's going to take more searching, and you're gonna have to get stronger, but if all these people are pulling for you, how can you possibly lose? Clusterville is a place filled to overflowing with love and concern- I'm glad I can visit. May all be miraculously PF- Cathi |
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Title: Re: Worse and worse.... Post by don on Apr 18th, 2003, 9:15pm Quote:
Your Doc was absolutely right and there are ways to do it but not by multiple trips to the ER for pain killers. Take to the Doc about a regimen of preventatives and abortives. Prednisone will break a cycle at least long enough to regain some strength. In the mean time use the frozen peas, cold air, O2 if you can get it. Run in place, use the circulatory technique. When do you see Kudrow again? Sounds like your at the end of your rope. I'd suggest to Kudrow the prednisone. |
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Title: Re: Worse and worse.... Post by tanner on Apr 18th, 2003, 9:56pm hi jill, i have been reading this post for the last couple hours trying to come up with something meaningful to say and i just can't find it. its just not fair, it sucks, i wish like hell i had an answer for you but i don't! just know that i am thinking and hoping and praying for you, and there just has to be another really good day right around the corner, doesn't there? i don't know where in md. you are, but if you ever want to come hangout with a couple of middle age bay dwellers, only one of which will be beating his head on the dock give us an e-mail. and please remember... it will end................................ tim |
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Title: Re: Worse and worse.... Post by sailpappy on Apr 18th, 2003, 9:59pm ;D ;D Jill, I haven't followed your post enough to know what you have been doing to maintain your sanity, for 13 years, I was Doctor and drug free, I averaged 7 attacks a day and I dealt with them by standing out side the shower with my head under the showerhead, I would turn the stream down so there was little or no pressureized spray only a heavy water flow, Let the water(Cold) run over the area of your head that has the pain, taking mouthfulls and holding it untill the coolness was gone then spit it out, it took about 25 to 45 minutes, but if you focus your thoughts on the good events of your life and don't tense up any more than you have to it helps, albiet not as fast as one might hope for but it will help, you have to keep your head under the cold water until you get chilled enough to get goose bumps all over, then the attack will abate as quickly as it started. Again, contrary to what anyone else has to say about it the Oxy Contin has stopped my attacks, I take it as prescribed and feel no type of high at all, just no headaches and after 33 years of 7/24/365 it's a miralce for me! Morphine or dilaudin will not produce the same affects, they have a very heavy sedative stoned feeling o them and the Oxy Contin is nothing at all like that! I pray for you My Friend, and Marty I ask the powers above to continue to give you the strength of conviction to be a good supporter and a compassionate man in the face of this devistating dilhema. it's a very hard position to be in and I praise you Sir for your understanding and continued understanding attitude, You Da Man! ;D Pappy http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: Worse and worse.... Post by Callico_Kid on Apr 18th, 2003, 11:24pm Jill, My heart cries out for you. I have not yet been where you are, and pray that I never will be, but you and Marty are definately in my prayers, and will be brought to the attention of my youth group at Church on Sunday. God grant you the strength to hang on and deliverance from the pain. jc |
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Title: Re: Worse and worse.... Post by Mastifflvr28 on Apr 18th, 2003, 11:36pm This is just an idea...I can't say that it is a good one, since I haven't been where you are Jill. You have pain with or without the meds, and your probly getting some rebound headaches from all the heavy meds...are you not?? Why not detox off of EVERYTHING and see what happens? Are the meds causing you more problems then they are curing? Just a thought, Vibes going up to you and Marty, always. Mast |
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Title: Re: Worse and worse.... Post by Not4Hire on Apr 19th, 2003, 12:15am jill....i feel i have neglected you, but i want you to know that these folks here really care....i also know that YOU know that.... you are blessed to have Marty in your corner, as well as your MOM and POP, who have had a hard time as well... .. i remember your posts where you said that your parents just didn't understand... that you felt your friends thought you were a *head case*... but you have a *gift*.... for putting words to a pain that really has no description..... there IS a sort of logic to this.... you are the most *refractory* case that i have read of on this board.... you have seen probably the most CH informed neurologist in America.... you have apparently taken all of the drugs that help *most* of us cope with the MOFO... and you've found NO RELIEF... ...i'm pretty sure that dilaudid was Elvis' drug-of-choice... and that it helped kill him..... be very careful, please!.... i have fought the MOFO with opiates....no joy and a long road back from addiction.... ... well, my friend Mast has given you good counsel..... Quote:
....my friend sailpappy also has good counsel...... the old tar has fought the MOFO FAR longer than most.... worth a look..... hell, i don't know...... but we all wish you some PF days and nights...... some MOMENTS...... for what it's worth.... ...your brother-in-pain....Steve(N4H) |
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Title: Re: Worse and worse.... Post by Jill on Apr 19th, 2003, 12:51am I have written this post twice already but for some reason - my stupidity - have lost it or for some reason it wouldnt post - so here I again. I first just want to thank everyone for their kind words of support and prayer - that means alot to me. I suppose that since mu background information is on the original post on this thread but I guess that some parts may need to be explained a little bit more when the time deems appropiate. Here is the latest update, keeping in mind that there are alway more: Within a twenty four hour period - I have been to the emergency room three times and all in the same day. I am assumning that the I have briefly desribed all of the visits in some way or another except for this last one, this last one that has totally brought me down. I wasnt home but for a few hours when I was hit extremely hard and sudden with a kip 10 and the only thing that my mind told me to do was to go lay down so that I could thrash and such with little harm done. As Marty tried to figure out which meds I was to take and was trying to locate the medication, there was nothing that I could do but scream, cry and beg for the beast to leave me alone - I couldnt take it anymore. After about an hour and finally taking my meds as I was supposed to, we headed off to Grossmont Emergency center. I am going to make this story short and just say that after trying many meds that had no affect, they finally gave me the shot that I needed, that of Dilaudid and within a few minutes the pain was reduced. I, personnally, did not care for this doctor as he had his own ideas and refused to stick with what I needed. There was one part of that visit with the doctor that bothered me, the words that I did catch said by this doctor after hearing about the severity of my case - he mentioned that this could all be related to me being psychological or another part that I caught was that I could ne pyschiatry. Those words, those sentences were wordsthat stabbed me in the back. So that was basically that last ER trip but I have a gut feeling that these trips are not ever yet and that scares me. Each time my ear begins to hurt and I can feel the cluster building int, I am learning and each time I sm terrified. Does that make sense? I just needed to share this with some people that may have had experiences such as this. The point in this thread was not only for me to vent but also..you think of the rest. Thanks |
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Title: Re: Worse and worse.... Post by marty on Apr 19th, 2003, 1:48am Hi Ya'll Let me explain a few things that happened. As to the Doctor "taking" the meds from Jill, this is true. She was allowed to leave with 2 valium pills and two Vicodin pills. She had only been taking these for two days when she saw the Doctor and they were prescribed, not by him, but by a Doctor that treated Jill at the ER. At the time, she was not taking any other medication and therefore, there was no conflict with other medications. She further was following the prescribed amount and did not take more than precsribed. As a side note, last time that I passed a kidney stone (done it 5 times now) I was given Vicodin and told to take more that Jill was prescribed and using. As to the possilbe addiction that comes from taking Dilaudid to many times and to often.. Very True - that is a danger that can not be ignored. But what do you do when the pain level reaches such high levels that even the ER Doctors says: "Holy Shit, what happened to her!" Some of you possbily can handle this kind of pain, Jill can not and I am pretty sure that I couldn't, just as Jill can't. I have dealt with Jill's attacks now, starting in December of 2002 and I am the one who makes the decision when to go to the ER. In the past months, since December, Jill has been hit approximately 8 - 12 times per 24 hours. In the beginning it was rare for us to go to the ER, but the ER visits have increased. Not because Jill in any way craves or even asks for drugs like Dilaudid, but because I take her to the ER based on the behavior that she displays depending on the level of pain the she is experiencing (my basis for this have not changed since I first took her to the ER). Jill is just as happy to get a non-narcotic injection (Toredal - spelling?) that used to work but no longer does. Just for the sake of bringing it up, could Jill be "faking" a bad CH just to get a narcotic injection? - No way, I would be able to know instantly if that was the case - I just wanted to lay the addiction side to rest at this point. As to the future and the possibility of future addiction, that may or may not come. As to shrooms, sorry - not at my house. We will keep fighting this and yes, we are both tired, worn out, frustrated and sometimes it feels like everything that we try is useless. But you know what? Those "somewhat" pain free hours that Jill and I spend together, taking photographs, working on her web site, going to the San Diego Zoo, etc.. Just to see her smile, is worth everything to me. Marty |
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Title: Re: Worse and worse.... Post by Georgia on Apr 19th, 2003, 1:51am Jill - I know where you are right now. We all do. We have all been there at one point, and we are all here today to help you through it. We are all here today. We are all here today. You will survive this. It will get better. You are stronger than the beast. He is only ONE monster. And he is grossly out-numbered. There are 3000 of us fighting with you. In our arsenal we have oxygen, we have hundreds of meds and combo's thereof, we have shrooms, we have hot pepper sauce, we have blue cheese and vinegar, we have redirection of blood flow, we have melatonin, we have benedryl, we have showers, we have ice and heat, we have liver flushes, we have water x3, we have exercise, etc, etc. Every monster has his weakness, your monster is no exception. We will find it. And when we do, we will knock that mother-fucker to his knees and make him beg for mercy. Keep looking. Keep fighting. You are not alone. Love, strength, and power coming to you, Georgia |
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Title: Re: Worse and worse.... Post by cathy on Apr 19th, 2003, 4:30am :'( Jill I have read your posts over the few months that I have been here and each time it saddens me, there are no words to take away your pain, but I hope and pray that you will find something to take away your saddness and despair....in the meantime all I can do is send you hugs and wishes for a break in the pain god knows you deserve it. Marty I understand yr concerns about mshrms but here is something which is helping so many people to be pf that I can only wonder why you are so against it alot of the drugs which are prescribed are so much more harmful to yr body than these, I know they are illegal but it should be a crime to suffer as Jill does too...sorry just my opinion. I think what you do for Jill shows what a great person you are sometimes to bend the rules is different to breaking them, especially when one is suffering in this way. Okay I'll shut up now. Take care Jill and Marty Cathy |
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Title: Re: Worse and worse.... Post by catlind on Apr 19th, 2003, 11:20am Marty CAN'T allow shroom therapy, he's a man of the law. I'm sure he'd love to let Jill try, but it would land him in jail. Jill, try Georgia's vinegar and bleu cheese. Try anything. Try a duragesic patch. Just keep trying. Something somewhere will help. Take Mast's advice...detox. The changing treatments and meds can cause problems. Go 2 weeks clean, water water water, and then start again. It did more good for me than you can imagine. Cat |
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Title: Re: Worse and worse.... Post by Roxy on Apr 19th, 2003, 12:28pm on 04/19/03 at 11:20:46, catlind wrote:
Marty, I don't think anyone is suggesting that Jill is addicted, I think they are suggesting that with all the meds she has taken, and is taking, that rebound headaches are a definitely a possibility. I agree with Mast, Cat and Not4; detox, and then try and find an alternative solution that helps. Georgia listed quite a few of them. I also understand and respect your stance on the shrooms. It took my husband a while to get his mind around the idea that something illegal would work. The shrooms have helped my ch's in a way that I could not have imagined. It took my ch's down from around 8 a day to nothing. All I'm suggesting is that Jill does not have to do the shrooms around you....or in your home. That would put you out of harm's way, and maybe bring her some relief. IMHO, Tracey |
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Title: Re: Worse and worse.... Post by Jarvis on Apr 19th, 2003, 12:44pm Marty- I hope you didnt take mine or anyone elses posts to insinuate we thought jill was maybe experiencing an addiction. To the contrary, maybe the doc has just been looking in the wrong direction. I have seen a couple of posts of the both of yours that mention meds. Many of those meds work well for some that are'nt hit so severely, migraines and other ailments and each time the docs read jills history they tend to follow the existing course of treatment with slight variations but still in the same direction. Maybe Its time for a radical reboot. Your records if you keep them should show in jills words how each and every med feels before during and after taking, right down to the slightest twitch. Your own diagnosis begins inside of jill, only she not the docs can know how the meds affect her beyond the CH. You "may" see that the meds that make you tired or foggy will follow with a more severe attack. Drug free is not the way either for most. For the last many years now I have concentrated all my efforts towards the pain free times between attacks and what makes me feel good in that way. How quickly I recover is what matters to me. A 2 hr k-12 is never as bad if one can jump right back to pain free, vs. crawling back. For me the drugs never allowed this. Even many of the popular cluster abotives on this sight like oxygen made things much worse for me. Oxygen only purifies my pain like a clean and sharp knife slicing through my head. Who can sit still for that. Yet it works wonders for so many..... You said some of us can handle this kind of pain. I think your wrong, none of us can handle this kind of pain.To me its how we deal with it in between that matters even if that in between is just a few minutes. Many dont notice this but its the difference between living and suffering. ... If the drugs are in any way affecting the in between then my opinion is that they are not right for cluster extremes. Again my opinion is that the body will be trying to adjust to both the meds and the pain fighting a dual battle.... This is how I have come to feel about my own personal trials. In the past I admit to doing the ER, and trying med after med and not once did I find true relief. Oxycontin and shrooms I never tried. I have given up allmost all hope for a med to get me through those days and nights. I believe my own body chemistry, with the attention paid to pain free, helps and creates the needed chemicals to fight the pain. Chemicals like serotinin, endorphins, those that create a kind of uephoria or whatever. These are made and exist in our own chemistry. When the bodies action are not masked by "some" drugs it is for me easier to deal with pain. The pain is still great and I'm no tougher than anyone else. Its just when I say its allmost over it has real meaning and 90% of the time I can literally jump back to resuming normality or my perception of it. ... Jill dont let the phsyciatry words get to you as our pain is something none can actually see so thier natural response is such. If they cant fix it must be something wrong with you, right. .......... .Some of the best words I ever heard a doc say were "I dont think I can help you and anyone that says they can in your case is probably wrong" He also said he would be happy to keep trying but frankly had run out of options. This guy was head of nuerology at the UofM. After maybe eighteen years and dozens of doctors I allready felt this but the reassurance was monumental in my approaches to CH. ....... I am not advocating med free by any means. But I am pushing a mind set and allowing only meds that dont interupt that set but enhance it. Sounds like you all are well aware of the mindset. Hope something works. . What a ramble this was. |
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Title: Re: Worse and worse.... Post by sailpappy on Apr 19th, 2003, 1:30pm ;D ;D Jill, Severe Chronic for 34 years, I think I have been told and called everything possible, from a FAKER,DRUG SEEKER,ADDICT,HEAD CASE and everyother judgemental thing people of all areas of life could think of, Doctors included. there is nothing that pisses a Doctor off more than an educated patient, when you know more than they do about the diagnostics and evaluation process, well lets say it takes a very secure and compassionate doctor to listen to you and do what helps you. I have been lucky enough in the past 34 years to have met 2 such people, My V.A. Doctor when I lived in Orlando Dr George W. Taylor and Dr. Jeffery McCartney here in naples. There are only so many things you can try on a drug regime theropy and on the Psychological one as well. When everything fails you have to try the unconventional and if your lucky enough to find a med that does work, It really doesn't matter what anyone else thinks except you and your Doctor, You work as a team to combat the problem, you have to be able to be honest and not fear reprisals because of your past! I let guilt eat me up for over 6 months when I gave in and gave up a 13 year stint of being completely drug free, my attacks were at the 10-15 per day level and I just could not stand it, Having touted a drugfree approach for so long I really felt like I had abandoned not only my own Moral ethic and the Clusterhead Family also. I got over it in time, even those that still point fingers and call names Like----Druggie and Addict and Heroin user----well they live that mentality, My way or its wrong. I feel the same about people that post about their attacks and in the next paragraph tell of their drinking beer exploits, to me the two just don't mix and if they were aware of the true facts about cause and affect they might not be so quick to defend themselves. I had a Doctor that explained every aspect of the medications action and reaction as well as the actions of common foods we eat and drink daily. Beer is brewed with Hops, when ingested the hops cause the body to secreate an excess amount of Histamineace, which is what people take antihistamines to counter the (ace) indicates that it's a substance the body creates in a certain family of chemicals sililar to hormones. the same goes for Seritoninace, we refer to it as seritonin however seritonin is the chemical created by man in the labratory to counter seritoninace. I say try to find a theropy that actually works for you, if Dilaudin takes your headaches away then there is a good chance some of the synthetic opiates like what I take(Oxy-Contin) might end your misery, as it did mine. I am in no way High from this drug, only pain free! I take it as prescribed, I dont chew them up, I dont shoot them up and I dont try to smoke them to get high, I could very easily but that would be putting me on the road to addiction from abuse. This has been my salvation and I don't care who calls it anything else, it is only out of ignorance that they do this! One last thing, Since I was friends with Doctor Nichopolas's Daughters best friend, I know for a fact that it was Qualudes that was Elvis's drug of choice and Good old Dr. Nick kept bottles of 100 tablets in his office for Elvis so he could get them at a moments notice, I know for certain because Crissy Nichopolas would get them and give my friend Sharon all she wanted! I was painting a House Directly behind Dr. Nick's house the Day he OD'ed. Pappy http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: Worse and worse.... Post by Wendy the Brit on Apr 19th, 2003, 7:13pm Jill and Marty I am more sorry than I can find words for for the hell you are in. I agree with a lot off what is above especially Mastiff, Cathi et al. This may be the simplistic view of a mindless idiot but it seems to me: 1 You are in hell 2 You are 20 years old (i.e. the best bits of life are yet to come- I promise!) 3 You are taking what seems to me a hell of a lot of drugs for a young female body. You have so many wonderful things that body will do in the future. 4 These drugs do not seem to be enabling you to have a life 5 We probably do not even know the long term effects of this combination of drugs 6 I am newish here but have not seen if you have tried the simple combination of a preventative (e.g. prednithingy or Verapimil) + 02 as an abortive. 7 Single preventative + 02 as an abortive is as near to a drug free body as there is without actually being drug free Is it at all possible that you could consider trying the above and cleansing your body and blood as there may be some rebound/side effects actually causing some of this. Or perhaps start O2 therapy and get rid of one drug at a time. (With help and support/counselling of course) Maybe also consider the other aids with these which do not involve a drug cocktail (visualising, water, cold etc) Jill I'm so sorry. I know I sound like I am trying to be your mother. Frankly I am old enough easily to be your mother, and I want you to have everything I have been lucky enough to have. I wish you and Marty every strength. Please try and seriously consider what people here are saying. They know what they are talking about. All the best wishes and vibes I can send. W the B |
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Title: Re: Worse and worse.... Post by Jill on Apr 20th, 2003, 12:59am Man - you all are sure great when it comes down to helping fellow sufferers out when they need it the most. I have noticed it over and over again but it just becomes so real and so true when it happens to you personally - know what I mean? I wanted to write sooner but I have been having a hell of a time with the beast and, well, that should explain alot. Since Sunday (a week ago), I have been to the emergency room atleast four times or more. Three of those times were within a twenty four hour period - not a good thing at all. In between visits, I am being hit so hard and so frequent that it is hard to get anything accomplished or to even muster the energy to consifer what I want to do. I have lost alot of will - so to speak - to even do what I love which saddens me greatly. I am not here to complain though or atleast that was not my goal at all and I am sorry if I have 'gone too far' with it. So moving on.... I suppose that now you understand more clearly - I know that the way that I said it was confusing - as to why the doctor took away my medications. It was unjust especially after I made the promise not to mix any medications that should not be taken together - I do know better than that and am careful. I am still stewing over that one and we are in the process of filing a complaint against him so that, if possible, legal action can be taken. This may seem extreme to any of you but to us, it is the logical course of action. I will say that I do have more vicodin and valium - stronger doses - now from a new emergency room doctor who didnt hesitate to help me out some. And the ER doctor tonight - I am beginning to know the doctors and nurses very very well - gave me the name and number of a local pain clinic doctor who can help me. I have written all of this and have not really reached any points - sorry for that, I ma heavily medicated right now but I am trying - I promise. There are a few items that were adressed throughout this post that I, too, would like to discuss but without bringing any harm to the table - just a friendly discussion. First of all, I am not sure what to do next as I now have no doctors. The neurologists have all 'given up' on my case and I have a feeling that this is partly because they want the cases that they can solve or the people that they can help. I can not really blame them, though it is disappointing to me. My pain clinic doctor is no longer one for me - he has basically told me that he is not in it for the long run and, last visit, he sure made it seem like I was a drug addict instead of someone in alot of pain. I do have a primary doctor left but he is the general doctor that deals with coughs and such - has no ideas about clusters - I will do my best to educate him though. I have an appointment with him on Monday so that maybe I can try the pill - maybe that will help some and I am looking for a referral to this other pain clinic. We will see what happens, I guess. It is right now that I am facing the problem - not the future but right this instant. I need help and the only way it seems to get it is through the emergency room - where they have been great, let me add - but how many more times can I go there? I mean eventually, cant they say 'we cant keep treating you this way - you need to find a regular doctor to help you.' Then what? I have read all of your suggestions and many, if not most of them, I have tried at one time or another - sometimes a few times. Heat such as heating pads has always been a trigger, so I resorted to a bag of peas but even they have begun to make things worse. I have went off of all meds before, just used oxygen but to no avail. I have done some crazy things, tried every med that neurologists can come up with and absolutely nothing. Right now, the only way to abort is through dilaudid and it has to be atleast three milligrams. I tell you, it is very messy. I hate to even be alone at night when Marty heads off to work - it is not because I am afraid that I will do something stupid because I wont but because I feel like it is just this beast and I together and I can not fight him alone - I have given him person characteristics again and am not sure why. I am not sure why doctors cant figure me out, every other problem has been ruled out and every time I take the cluster quiz, it says that that is what it is. I am reaching the end of my rope - holding on for all of you, my parents and everyone else who is vitally important in my life - trust me on that. I think that, after this long and probably repetative post, I am asking for more ideas that I can try. Meds that I have not been on or anything that can atleast alleviate the pain down one notch on the Kip scale - did I say that I am desperate? Thanks for reading this and understanding where I am coming from - you all are indeed the best and I love you all so very much... Jill :'( |
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Title: Re: Worse and worse.... Post by cluster0557 on Apr 20th, 2003, 1:54am Jill, Are you willing to travel to see a Dr who specializes in difficult cases. If so look up info on http:\\www.helpforheadaches.com. He is not the most personable of Doctors but he does know his stuff. He is a migraine sufferer and is good at what he does. It is a small practice. A good sign when you walk into his office is no bright flourescents to kill your head and cause a migraine or cluster when waiting in reception. Positive side with this Doc is he is agressive in his treatment. He was my Neuro for 2 years and brought control to my Clusters. I took my daughter to see him for Migraines that hospitalized her twice due to the pain and he helped her and got her impossible case under control. He believes in both preventative treatments and Pain Management. He sees patients from all over the country. As I said I used him and he has helped me. I no longer see him due to a personality conflict and my desire to continue to look for ways to get rid of my cluster and not just ways to prevent some aspects of it. But, I still reccomend him. Take a look it might help. One observation regarding meds is that too many meds and too many changes in meds can cause the beast to really become worse. As an example due to a conflict prescribed for me with Verapamil (Channel Blocker) and Nadolol (Beta Blocker) I landed in ER and Cardiac unit for a day last week due to dangerous drops in both BP and Heart rates. The end result is that my 45 year old ticker is still working like a Timex Watch but here is the important part. My Verapamil dosage was dropped from 720mg a day to 240mg. Two radicall changes happened. MY CDH for all practical purposes went away. My clusters went to sleep for 5 days. 5 days of PFDAN was heaven after 18+ months of zero relief. Since those 5 days I have been hit with level 7's 1-2 times a day but was able to abort with Imitrex and / or O2. My bottom line messages to you are these. 1) There are good Neuros who will take on tough cases. 2) It is entirely possible to be over medicated causing the cluster to get worse not better. In my case I beleive the high dosage of Verapamil may have made my old episodic cluster go Chronic 18 months ago. Good Luck and I hope you can find relief. |
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Title: Re: Worse and worse.... Post by Jarvis on Apr 20th, 2003, 2:06am Jill try this. Go to the local convenience store or truck stop and get one of those pick me up herbal energy tabs with ephedrine (ma-huang) and ginseng and other herbs.. They are usually sold in individual dose packs. Sold on and over the counter. They help me at times. Might make your heart race, but might help the head too. You got nuthin to lose. Dont look for them at the vitamin store cause they will sell you stuff you dont need and dont overdo them. Seems too simple but they help. From one or two doses you would know if thats a path for you. |
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Title: Re: Worse and worse.... Post by Mikey on Apr 20th, 2003, 6:29am Jill, I promise i know the spot you're in because i'm chronic now, being hit about 7 times a day now with shadows that rank a 5-6-7. what i'm trying to say is that i know your husband is an officer of the law, and we have to respect that, but it sure would be nice to have to try some alternative drugs. The best thing happend to me, i came across a very well known Neuro/pain specialist/headache specialist all in one. His name is Doctor Joseph Markey and he is in Charlotte NC and i also get to go to the UNC-Chaple Hill Neuro sciences and headache Dept i get to see the director there Alan G Finkle MD. I have no doubt that i have seen some of the worlds best Neuro's and these two haven't given up on me like so many others. Jill, get you the very best Neuro around that knows something about Pain Management, and most of all educated as he can get about CH. You'll see things will be different if you can do that. Meanwhile, there is not one thing wrong with going to the ER when you can't break an attack and it's driving you to isanity Oh Yeah! bring on the Dilaudid and the Ativan or valium, they always give me Valium. They always do the trick don't they? If nothing else you'll be a "Don't give a crap" type then. Beleive me Jill, you do what works for you, no matter what anyone says OK. Man to abort an attack, I take MScontin(and to prevent), and percocet 7.5 mg and Dilaudid Suppositorys( thats in case i get sick to my stomach ) and i have Xanax in my arsenal. So damnit i'm going to get some relieve and the Xanax realy helps the Narcs do their job better by calming you down and relaxing your muscles, so that your not so tense. Then after your battle you'll be so tierd(as if you don't know that already) the Xanax working with you will help you get much needed sleep until the next one........... All over again............. Mikey, ;D |
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Title: Re: Worse and worse.... Post by Jill on Apr 20th, 2003, 6:34am on 04/20/03 at 01:54:08, cluster0557 wrote:
on 04/20/03 at 01:54:08, cluster0557 wrote:
When I read this first question and asked it to myself, I had two totally different answers pop into my head. Part of me would eagerly try any credited doctor anywhere in the world if it would mean relief - that is if money was not a factor. But then there is another part of me that is done with doctors and there, excuse me here, bull shit. I am sorry to say that but I am frusterated with taking all of this time to make the apppointment, getting insurance coverage, actually driving (which someone does for me right now) to get to the office, fill out all of this paperwork that seems so redundant but is important just for the doctor to say "oh, sorry - thought that I could help you but...I cant." or for them to tell me that they have all of these meds, ideas that they can try but then turn around after their first idea doesnt work and say "Guess that I cant help after all." I have even had them take a quick glance at the meds and alternative therapies that I have tried and just look at me, asking me why I think that they would be able to help me. I can understand some of what they feel because I have tried alot but having them give me that look makes me feel even more helpless and all - make any sense? I am tired of building my hopes up and thinking that, well, this doctor can help or this doctor has been recommended so he/she has to help just to turn around and be crushed when they can do nothing or dont even want to try to help. I have finally, after all of this, come to realize that most - mind you that I am not saying all - doctors want the cases that they can "fix" or "help" without it being too hard. From my experience, they dont want the harder cases that will take more of their time - but that could be just me. Furthermore, I understand that there are good neuros out there but it is finding one to stick with you until relief is found, looking everywhere and asking other doctors for help instead of feeling that they will be "weak" for it, is the hard part. It is kind of like marriage to me, you need to find a neuro who will stick with you through the thick times so that in the end, you may find the good times, those days that are less painful. My question is how many times can someone keep seeing neuro after neuro getting the same response, feeling crushed each time before you just lose hope in them? That is where I am now - I want relief but I cant take anymore of the 'lets try this med and if that doesnt work than we will do this and so on until they finally say that they cant help anymore. Is that when you just turn to the pain clinic, which may do the same thing - mine basically did - and look for heavy meds to just mask the pain? on 04/20/03 at 01:54:08, cluster0557 wrote:
I also understand about the medication which is why I stopped taking them for awhile, was just on Celexa as a mood stabilizer. Now I have to take something, if not to just feel like I am fighting - a mentality thing. on 04/20/03 at 01:54:08, cluster0557 wrote:
I did look up this website but the question isnt just if I would be willing to travel that far for help because if there were a guarantee - I know that nothing in life is a guarantee - or some high probability that he could help and, of course, if I had the money than we would be on the next flight. I guess that I should probably explain this point of view or my hesitation to justify what I am saying. I just saw Dr. Kudrow on Monday - he is supposed and most likely does specialize in clusterheadaches - and went in there with the mentality that he may not be able to help. I went in there thinking in my mind that he may not be able to do anything, may not have any ideas up his sleeves but in my heart - my hopes were higher than they should have ever been. In the end? Well, in the end I was crushed again because he told me that I would have to learn to deal with it - I want to start another thread on that one. So if a doctor that specializes in clusterheadaches cannot help than how can one that specializes in migraines? Does that make sense at all? I am sorry that you had to seek his help and that your daughter did too - too many people suffer from these damn things but I am glad the he was able to help you both. I will continue to read his site and maybe send an email off his way - cant hurt at all, right? It seems to me that when there is atleast one less person fighting the beast, then that is a small step for all clusterheads - a victory for the one person and a little light of hope for others. I am sorry if this is rude or demeaning to anyone- I really am. I am just so tired, worn down and just plain scared right now. Jill |
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Title: Re: Worse and worse.... Post by Mikey on Apr 20th, 2003, 7:00am Look, Jill, it took me along time to find the Neuro i have now, and don't think i mentioned he has practiced HA's since 1962 and was president of the headache foundation for four yrs. And i have never heard of him giving up on anyone. Have you tried DHE-45 IV in the hospital yet? it takes about 3-4 days. I've done it many times. I've also been admitted for the same thing and been detoxed at the same time to see if it would have any affect on he CH's. I've been detoxed from Narcs many times, with no avail, meaning i didn't have rebounds from them or they would have gotten better. Hang in there girl, know yer pain been up all night here, walking, stomping, moaning,pulling hair, and rubbing my eye so hard at times i'd swear i was doing damage to it. If i did'nt have the stash i got now th ER might have been me tonight, or lastnight, or now heck it's morning here. Have a good one Jill, Marty! Mikey, ;D |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 21st, 2003, 11:23am on 04/19/03 at 00:15:20, Not4Hire wrote:
Been there, seen it, done it, even got the T-shirt and I"M NEVER GOING DOWN THAT ROAD AGAIN!!! grant 8) |
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Title: Re: Worse and worse.... Post by don on Apr 21st, 2003, 11:28am I had a love affair with dualadid for awhile. Then I deided DLs were for lightweights and moved it up a level. Addiction.......the master manipulator. |
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Title: Re: Worse and worse.... Post by Edna on Apr 21st, 2003, 11:35am Oh my Jill, I have a little too much to say on this subject......(isn't that odd??..it's not like I usually have much to say???) DON'T EVER give up.......you say you are desparate, well, at least we know that you're still willing to use us for what you need right now. I'm hoping, praying and thinking of you lots.......and although I think you now KNOW we are here for you, I do understand that sometimes that just isn't enough, that you are in desparate need for some relief. I just really worry about the side effects at your young age with all these meds mixing........ AND.........no offense to Jarvis........BUT PLEASE DO NOT go to the local convenience store or truck stop for that pill........sorry Jarvis but I feel as though this would be highly dangerous in Jill's place.......glad it works for you, but would not want her to try ANYTHING right now without doctor approval.......SORRY, that's just me. Jill, keep us posted no matter how long your post are....and also...tell your dad we miss him to check in with us too. Tight hugs, EDNA (pst.....check your email hon) |
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Title: Re: Worse and worse.... Post by Sean_C on Apr 21st, 2003, 2:45pm Jill, Sound like a good ol' fashion peak session to me. 8-12 times in a 24 hour period really sucks, that would be enough to break anybody. All kip 10's would piss me right off. I still think somethings triggering these kip 10's, although naturally its my own opinion. Some drugs however over or under the counter can make you rebound even worse, but everybody's different. Did you try O2, its helpful if you use it the right way? Hang tough, there is light at the end of the tunnel. I've seen it:) As for drugs, I don't approve, unless you share with me:) Sean P.S. Keep a journal on your day to day habits, write down everything, there's a trigger there somewhere. |
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Title: Re: Worse and worse.... Post by Mark C on Apr 21st, 2003, 2:58pm |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 21st, 2003, 4:00pm on 04/21/03 at 14:45:50, Sean_C wrote:
LMAO!!! ;D |
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Title: Re: Worse and worse.... Post by Mikey on Apr 21st, 2003, 4:25pm Look guys, picture this, lets just say you have tried everything and nothing sems to help no matter what you do. Lets just say that you are having kip 10s 8 times a day and there is no alternative but to blowing your brains out! Oh but there is, there are drugs called Narcotics. Why do you think that they are made for? I always thought it was PAIN! Now not everybody is the same, that is one of the only things that help me, and yes there is detox i've been through it all. Most Docs that know that you are on Narcs for an extended period, when it comes time, they will hospitalize you and detox you if need be, especialy if you're episodic,and it usually only takes about 5-7 days. If you are chronic like me, then there is no cure anyway so no need to detox unless i come to a time that i become pain free for sometime. So use what you got to, this type of pain can bring choices to people that only they have to make. So don't be trying to make somebody feel like a drug addict, if Narcs are the only way for them to go. Mikey, :) |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 6:05am Mikey, I personally am not in anyway trying to make Jill feel like a drug addict or tell her she should in no way use narcotics. Just not the ones she is using. As far as I can tell from searching, the only 2 things that have helped CH in the form of narcs has been oxycontin and the duragesic patch. If you are to the point of nothing else working, then don't get messed up with dilaudid or vicodin (vicodin especially). I know for a fact vicodin and valium will NOT abort your CH. If it does, then CH is not what's causing the majority of the pain. Narcotics can help ease your pain. They cannot abort a CH. To my knowledge the only narcotic to completely control a CH is oxycontin. I'm not even 100% sure of the duragesic patch, but there are some here who are using it with success. You have to admit that 20 is a very young age to be in position to rely on narcotics all the time. That's not a crime, just a shame. Personally, I would like to be sure that Jill has tried EVERY possible avenue before going down that road. Every person has a right to live their life in comfort. Because of the nightmare I went through with the vicodin, and how much WORSE it made my CH, I will never ever advocate the use of it to anyone, no matter how much pain you are in. Because it WON'T work. If that's the avenue left, then go to the oxycontin, not oxycodone, oxyCONTIN. There is a difference (according to what I've read and my docs) I personally will not advocate the use of narcotics to anyone. I won't judge someone for taking the oxy avenue if that's what they are left with, nor do I think it's something that should tarnish you. We've all been through the druggie rap from the medical community. I just hate to see anyone do it until they've used every single other means available, including bleu cheese and vinegar! Quacky? Who gives a shit if it works. I haven't found anything that I can take (safely according to the docs) that works. But I'm not chronic, so I'm not going to judge. As in everything, take what you need and leave the rest. Cat |
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Title: Re: Worse and worse.... Post by don on Apr 22nd, 2003, 6:10am Quote:
Your liver may have an argument for that. |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 7:48am on 04/22/03 at 06:10:13, don wrote:
Great point don. One of the reasons that I think the duragesic patch is a better avenue if you HAVE to take it, transdermal narcotics (or any transdermal med) is much less dangerous to the liver. Cat |
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Title: Re: Worse and worse.... Post by NotH20 on Apr 22nd, 2003, 9:22am Jill - I, with the rest of my ch buds here, really feel your pain and your frustration level in many different areas. Between the meds not working, the docs telling you it's in your "head," the high pain levels and the constant "torture" the beast is giving you - it's enough to drive anyone off the cliff. But you know you can't do that!!!! You have to remain strong and you need this board more than ever right now. You mentioned a few meds that you have tried as abortives and/or treatments. Prednisone, O2, etc. (I'm assuming that you've tried Verap as well). If a Prednisone holiday doesn't work and O2 doesn't work for you, then maybe you should try the DHE IV. That broke my last cycle and I was in the hospital for 6 days. I was close to the medical field and I didn't have to make any trips back and forth to the ER. If you want to know more about my experience with this treatment - email me - I wouldn't mind sharing this with you at all. Your frustration with the doctors are all understandable...but you know as well as all of us that it's a crap shoot in finding the right meds. I wish one pill did the trick for everyone, but unfortunately what works for some doesn't work for all. You WILL have to seek out the right doc for you...you WILL have to try different meds...you WILL be let down by the docs and those meds. But you MUST keep trying until you reach some sort of positive outcome. You owe that to youself. Marty - you sound like a wonderful supporter and I know that Jill seems to be depending a lot on you right now. Stay strong and this will pass. I have a wonderful supporter as well - and I would be totally lost in a cycle without that WONDERFUL support. Jill - I have a stockpile of meds for my next cycle. If you find something that works and I have extras - you are more then welcome - just let me know. Good luck to you Jill and Marty - may you kick the beast out of town very soon! Mia PS - One more thing - does anyone want to join me in stomping the ER doctor who talked the BS about therapy etc. to Jill? |
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Title: Re: Worse and worse.... Post by TomM on Apr 22nd, 2003, 9:47am on 04/22/03 at 09:22:58, NotH20 wrote:
DITTO! TomM 8) |
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Title: Re: Worse and worse.... Post by Mikey on Apr 22nd, 2003, 10:15am Cat, I was on Oxycontin for sometime (a slow release form of Oxycodone) and on percocet (name brand, instant release form of Oxycodone) for break through pain. Now you are right about Vicodin, I didn't mention Vicodin because it is Hydrocodone, and is, for me anyway, a sure fire rebounder. I also didn't mention Valium as an arsenal of mine, the hospital uses it. I use Xanax, and thats only on the times that i feel i'll lose it and do something stupid. Now about the Dilaudid, i use it very sparingly only 6 suppositories a month at 3 mg each. Now i have found that MS-contin works better for me than the Oxycontin did.(MS-contin- a slow release form of morphine sulfate.) Cat, i was NOT aiming straight at you about the addict thing. I know you are helping, and you're right it should be a last ditch effort for anyone! Maybe i did'nt articulate myself very well. My intensions was to not make someone feel like a drugy if it indeed is their last ditch effort. I guess i think along those lines, because that is where i've been for a while now. Now, as to the liver thing. My docs tell me that my Depakote 1500mg intake is one of the worse things you can take that is hard on the liver, but they prescribe it all the time for CH and Meegraines as an preventive. As far as the percocet goes, its 7.5 mg/325. It used to be 7.5/500 the 500mg being Acetaminophen. So now the drug companies have lowered the Acetaminophen because of liver concerns. Now, I want everybody to understand that i'm in no way pushing, prodding or shoving any of this down anyones throat, just trying to help. BTW, anyone who is on Narcs, especially as much as i am, should get a check of their liver enzymes regularly like every 6 months(Doc said), and i do. Sorry guys, i didn't mean to offend anyone. Mikey, ;D |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 10:26am Mikey, Sorry for the misinterpretation. I didn't in anyway take your comments as aiming at me :) I was just rambling out my thoughts on the whole thing. You're right about the depakote, and that's why I said that any transdermal med is better than a pill if it's available. I am currently on NO meds at all. I decided to do a detox and it has worked great so far. I'm episodic so it isn't the same thing. The meds were extending my cycle and I was getting awful breakthroughs. Things are great now though. I just wanted to point out that we have all been called the druggie by the medical community not that any one of us is. The whole thing is frustrating from every aspect as far as I'm concerned. I am not against the use of narcotics for the last avenue. I just won't advocate them is all) Each of us gives what we can based on our own experience and perspective. Mine is that if vicodin is involved you are in for trouble. You hit the nail on the head about the rebounds. That med is a waste of time. Anyway, rambling again hehe. Just wanted you to know I didn't take anything you said personally :) I don't believe a person should live in pain. I would love to see successes for all of us in something other than the toxic meds we use. I can keep dreaming :) |
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Title: Re: Worse and worse.... Post by Mikey on Apr 22nd, 2003, 10:34am Ditto Cat. I can't use the patches because they cause a very bad rash on me for some reason, but you're right about them though. Mikey, ;D PS. I can't help but luv ya Cat! :-* |
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Title: Re: Worse and worse.... Post by Mikey on Apr 22nd, 2003, 10:36am BTW Cat, Glad that things are better for ya! Mikey, ;D |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 11:53am on 04/22/03 at 10:34:19, Mikey wrote:
Bah, you just say that so that I'll stop spitting up hairballs ;) :-* Cat |
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Title: Re: Worse and worse.... Post by Mikey on Apr 22nd, 2003, 12:14pm http://www.uselessgraphics.com/x203.gif Hey Cat! Mikey, ;D |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 12:45pm ::) We all know who's the real boss..... ;) :-* http://home.twcny.rr.com/clind/cat_dogs.jpg |
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Title: Re: Worse and worse.... Post by Mikey on Apr 22nd, 2003, 12:51pm OK I am humbled!!!! I know when i've been beat!! Mikey, :-X |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 1:13pm LOL yer no fun Mikey, I had a whole host of pics lined up LOL. You know I luv ya :) Cat |
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Title: Re: Worse and worse.... Post by Jill on Apr 22nd, 2003, 1:16pm Thanks again all for the help... First - because I have been asked this many times - I have tried the DHE -IV treatment last summer. But I do have a question about it - is it a continuous IV drip or one that is done every eight hours? Walter Reed told me continuos but then had messed up because I was off of it for almost twelve hours. The a doctor the other day - Dr. Kudrow - told me that it is done every eight hours - what is true? Speaking of Dr. Kudrow - for anyone who has seen him -have you all seen him for a couple of hours? My appointment lasted an hour and nothing was done but talking. Just wondering.... I have read all of the different view points about narcotics and its usage. If there were another option for me, right now, I would take it because I want relief so badly. If they could cut the trigenial nerve and that would offer a 100% guarantee relief - than I would highly consider it. But they cant and there are no other options - so that leaves me with finding something else. That something else is going to have to be narcotics right now. I am taking vicodin and valium during the day - does it make worse? To be honest, can I be much worse? I will ask about the oxycontin once I get a new doctor - one who wont make references as to me being a drug addict when he has seen me in a hit. They also gave me thorazine to take at night so that I can get a little more sleep - a very heavy drug when taken at 50 mg doses. Anyone know anything or have tried this medication? I value your opinions and I appreciate the help - I really do. And from reading this - I am thinking that I should get my liver checked from all of these meds and from the two months that I was taking a 1000mg a day of Depakote. Jill I love the pics too... |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 1:25pm Jill, Talk to Marty re the thorazine and my thoughts on it. I sent him some web sites about it. It's used for psychotics and schizophrenics, and frankly, scares the shit outta me that you are taking it. Cat |
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Title: Re: Worse and worse.... Post by cootie on Apr 22nd, 2003, 1:34pm Here's an interesting site with info on thorazine I found while back......it is a heavy duty medication ! Hope it helps you understand what it can do or does....but it is not neccisarily the views of this station......good luck Jill....wish ya didn't have to go this route but if it helps ya then that's what matters for now. Hate to be sedated durein the day Pam http://www.sntp.net/drugs/thorazine.htm |
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Title: Re: Worse and worse.... Post by Slammy on Apr 22nd, 2003, 1:56pm on 04/22/03 at 13:16:35, Jill wrote:
Jill, When I saw Kudrow it was for about an hour. Afterwards, I got a script for Verapamil and Cafergot. I also received a script for O2 and Imitrex shots as well as 4 free samples of the Imitrex I haven't had to see him since, but, by his request, called his office on duration and frequency of clusters, as well as refills for the scripts. Slammy 8) |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 22nd, 2003, 2:25pm Re: Thorazine My grandfather was schizophrenic (sp?) and was on that for years. Thorazine controlled his 'emotional outbursts' effectively. Mainly because he just kinda 'floated through life' after that point (read: personality of a turnip :'( ) . He lived to the age of 96, but said about 5 words a year for the last 30 years. IT IS VERY SCARY SHIT! (Luckily, I didn't inherit that illness from him. Me neither.) grant(s) ;D >:( |
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Title: Re: Worse and worse.... Post by Wendy the Brit on Apr 22nd, 2003, 2:45pm Jill Please see my other post on the other thread about the liver/blood tests you are considering. Cootie, Cat,Grant et al are right, Thorazine is really, really strong stuff. PLEASE DO TAKE TIME TO READ the links the girls have put in here I have never, EVER heard of it being prescribed for aiding sleep. Are you sure, or have they prescribed it for something else you cannot understand/do not wish to say? Bluntly again Jill (here we go, sorry!!!!) IMHO and experience but not medical training ,you are being given a mightily powerful mental health control drug. If you really need it,and that usually means you are a danger to yourself or others, of course it will be the right thing to take, but there are safer ways of aiding sleep, and healthier ways of aiding your psychological state. (i.e. a psychotherapist who you click with, and maybe some short term lighter drug support) I'll shut up now W the B |
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Title: Re: Worse and worse.... Post by catlind on Apr 22nd, 2003, 2:50pm Here's a link to a story of a person who IS menally affected (not sure what else to call it) and her story about thorazine. Jill, you just proved me wrong. I said I wouldn't advocate narcotics, get your ass off vicodin and on oxycontin and get rid of the thorazine. Narcs won't ruin you anywhere nearly the way thorazine will. Email me and I'll tell you my story. http://www.trussel.com/lyman/avatar/thora1.htm |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 22nd, 2003, 6:10pm on 04/22/03 at 14:50:01, catlind wrote:
Cat is a liar, Cat is a liar!!! LOL ;) :D on 04/22/03 at 14:50:01, catlind wrote:
But seriously, Jill... I've made it pretty obvious what I think of narcotics as a method of treating CH, but I think the above quote is the UNDERSTATEMENT OF THE YEAR!!!!!! You HAVE to read those links. grant 8) |
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Title: Re: Worse and worse.... Post by Jill on Apr 22nd, 2003, 7:00pm on 04/22/03 at 14:45:54, Wendy the Brit wrote:
I have just read what everyone has sent me and I have no idea what to say. Thank you for all of the information - that medication is going off to the side, not to be touched again. on 04/22/03 at 14:45:54, Wendy the Brit wrote:
Yes, I am sure that is what it was given for - the bottle says take one tablet by mouth every night at bedtime I am beginning to think I may also need a new primary care doctor - he is a nut anyways. on 04/22/03 at 14:45:54, Wendy the Brit wrote:
No need to apologize - I understand that line of questioning....and last time, I just took it wrong...sorry. on 04/22/03 at 13:56:48, Slammy wrote:
Okay, thanks - just wondering because I had heard that the appointment was going to be like three or so hours with all of this testing. He did not order me any meds but did order an MR Angiogram. Thanks for all of the help - as soon as I get a new pain doctor, I will change my medications. Jill |
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Title: Re: Worse and worse.... Post by don on Apr 22nd, 2003, 8:06pm Quote:
WEEELLLL? OK maybe. |
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Title: Re: Worse and worse.... Post by sailpappy on Apr 22nd, 2003, 9:50pm ;D ;D Jill, You may be getting tired of hearing from me, but I am as qualified as anyone here to talk about this subject as I have not only talked the talk but walked the walk! I suffered unmersifly for 33 years, It was to about Clusters, just like gaining weight, you will out grow it at 21 then it was by 25 then it was 30 then it was 35 or maybe 40, but then it could be at 45 before your maturity starts to slow them down, well I'm 52 and if I hasn't started taking the oxy- contin I would still be living in unrelenting pain. My attacks were as consistent as the sunrise and sunset, and when I finally decided that I would have them for the rest of my life and would have to figure out a coping mechanism, well I realized the self defeating things that I was doing during my attacks and set out to make a change to try to minimize the affect I allowed them to have on my personality and on my overall quality of life. I always had what I would call strong 9's If a 10 is I am going to kill myself, well I have been there many many thousands of times, but the one fact that I found to be indesputable was that surely, If I could hold out long enough the pain would end and the Puking and slobbering and looking like a madman I tried to keep to myself. I talked with My Neuro now in great lengths about the mindset I have been in about being Drug Free and the affect it was having on my life in as far as the Guilt I was suffering through. He told me that there are many variables that are taken into consideration for statictics. A 1 in 100 type comparison, and that there are individuals like Me and Maybe You!, that are so unretractable using all other medications that we break the Molds of Normalcy, Yes 1 in 100 cant tolerate Triptans, 7 in 100 can't tolerate Betablockers like Verapamil. 32 out of a hundred that cant tolerate antihistamines and so on, but you and I don't fall in that 100 anywhere, we are the 1 in 100,000 that nothing of normal value in fighting Clusters helps us and if the Oxy Contin does , then we should not suffer needlessly, there are a lot of critics here when it comes to pain control, but the only one that matters to you should be you. It took me 6 months to come to grips with this theology, but because I have :the quality of my life and the quality of everyone involved directly with me have had a benifical boom in the rise of in their quality of involvement with me! My Doctor doesn't understand the reason I continue to post here, he even has gone as far as to tell me that I would be better off without the tension I allow this board to create in my life. But after suffering alone for so Long and then finding all the lost souls here, that I felt an instant connection with, also gives me Great Joy at the same time, even if what I have been through offers a gleen of hope to just 1 person here then it completes the connection and we all benefit. We are a Family onto our selves, each has his or her own agenda, yet it is a common goal shared by all of us and when one of us finds relief it should be a moment of Great Adulation for all of us! For those that can't be Happy for me that I finally found a treatment that works for me and has created a haiatis from a lifetime of pain, I can only feel sad for them as they have closed off their minds to only others way of thinking and no longer exhibit free will. You go for it Girl and don't worry what anyone says here, for you alone are suffering your individual pain! Thorzine had been mentioned and pointed out that it was given to people that are psychotics and schizophrenics, well like most medications it has a broad based application base and is also given to Heroin Addicts going through withdrawls, just as Lithium is for Manic Depression and mainly used as a psycothropic it is also administered to fight Cluster and Migrane attacks. Support is like Love, there are several levels of support, non-Judgemental and unconditional and then there is the bigoted! Unconditionally your friend! Pappy http://tinyurl.com/9g1f http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: Worse and worse.... Post by NotH20 on Apr 22nd, 2003, 10:46pm WOW... It's always hard to follow a "Pappy Post" since his posts always feel like a BIG hug through the computer... ( :D love ya Pappy) Jill - you have so much to consider at this point and which way to take your treatment. Knowledge is half the battle - read everything you can - listen to your fellow ch'ers here and then you make the best decision that helps your situation. As for my personal DHE experience - I started w/ the IV, but it was not a drip. I received meds thru my IV in the beginning every 6 hours for about two days I believe (sorry by that med knocked my butt). After that it was tappered down to every 8 hours for about two days and then every 12 hours for the last two days of my hospital stay. Believe me I tried every medication during my last cycle and none of them worked. I even tried some of the newer anti-seizure meds as well. Hope that info helps you out a little bit - if you want more information email me - I don't want to put the rest of the posters to sleep ;) Remember that you have an entire family here to support you and give you advice - someone very smart on this board once said "take what you need and leave the rest." You and Marty are in my thoughts.... Mia |
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Title: Re: Worse and worse.... Post by Callico_Kid on Apr 23rd, 2003, 12:01am Jill, I have been reading these posts with great pain. After 25 years episodic i have gone chronic, but I cannot begin to say I understand. Basically I have been med free, but am getting beyond doing that any longer, so I've been getting an education before my first visit with a Neuro tomorrow, actually today :(. I seem to remember an experimental implantation of an electrode near the occipital nerve (sp?) that at least initially was successful. If I remember correctly it was done at Mayo. Maybe someone else will remember more of the details and will know if it was successful in the long term. It has been some time since I saw something about it and I haven't seen anything since. After having worked with a lot of addicts at the Pacific Garden Mission in Chicago I hate to see you using Narcs, but if that is what it takes go for it. I just hope you will find something else. Above all, do not give up. There is hope. I know you don't see it, but it is there. I also know you have heard that till you are sick of it and it sounds like another platitude, but hang on. We do care. Our family is praying for you and for Marty. My youth group at church will also be praying for you. You are loved by a lot more people than you will ever know. jc |
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Title: Re: Worse and worse.... Post by Callico_Kid on Apr 23rd, 2003, 12:06am Jill, I just found the article I was thinking of. It is in the Health Bytes Newsletter at www.realage.com. Sorry I don't know how to make that a linkfor you. I'm lucky to be able to post a note! :( I hope this is a viable option for you and that it helps. jc |
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Title: Re: Worse and worse.... Post by cluster0557 on Apr 23rd, 2003, 12:31am Jill After my first post I saw a lot of posts wishing you support and advice. I also see a bunch of caring clusterheads who would do anything to help you out of your cycle. Pappy I think nailed it on the head when he infered you have to do what gets you out of this cycle. My last 18 months have been similar to what you are going through. My only saving grace is I do respond to Trex and Pain killers and Verapakill did knock severity down a few degrees but i had unrelenting pain 24 x 7 with Cluster and damn hemicarnia continua HA. I was to point of no hope. A medical mistake accidentally gave me hope. I am down to a lower pain level finally after fighting it almost every damn day for those 18 months. In my original post I reccomended helpforheadaches.com. Write him an email if you can. Describe your case and read his response and then decide. I will say this guy did not give up on my case nor my daughters. You can tell me to STFU about the DOC I mentioned and I will drop it. If you want to know more drop me an email and we can figure out a way to chat on my nickel. He was no miracle cure person but he does know his stuff. He does deal in migraine and clusters and is , I repeat is a firm believer in pain management. I wish you my best and hope with all my heart that you, Jill get the break you need to get out of this cycle. Jim |
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Title: Re: Worse and worse.... Post by BobG on Apr 23rd, 2003, 12:40am Callico Kid.......... Your link worked just fine. Just click on the blue. It'll take you right to the Senior Center. And I learned why I can't sh*t and what to do about the itching in a personal area......Thanks |
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Title: Re: Worse and worse.... Post by Callico_Kid on Apr 23rd, 2003, 1:03am Bob G, ROTFL! That is the first time ihave been able to get a link to actually come up when I typed it, and wouldn't you know they changed the page! I found the article in my favorites. It was originally from Sept of 2002. I'm so computer illiterate I don't know how to attach it to this post, so if you will e-mail me your address, Jill, I will be happy to print it out and mail it to you. The Dr. involved was Dr. David Dodick of the Mayo Clinic in Scottsdale AZ. Dr Goadsby is also quoted in the article. Hope this helps. jc |
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Title: Re: Worse and worse.... Post by marty on Apr 23rd, 2003, 2:34am Hi.. I just wanted to add a little something about the Thorazine. Last week was a mess with ER-trips every day, Ambulances and Paramedics transporting on one occassion. Jill was getting hit almost continously even after being given Diluadid at the ER. If she stayed PF (Drug-induced) it was only for a few hours before she got hit again. Sleep was at 1/2 hour per night. Her body started to break down and her mental state was deteriorating. The Thorazine was given at Balboa Naval Medical Center and she was able to sleep - of course, Thorazine will knock anybody out. I have read up on a lot of stuff after Catlind e-mailed me. I also talked to the Pharmacist and an EMT that I know very well. I know that there are some real horror stories relating to Thorazine, but I have also learned that the dose that Jill is prescribed is also what sometimes is precribed for people with chronic hick-ups. Thorazine is for severe pain as well. It has been around for many many years and is used for a multitude of ailments, both physical and phsycological. Ladies and Gentlemen, Jill has a choice here, she can stay on the Vicodin and Valium (that is what she is prescribed right now) and those will not abort or stop an attack - or she can take one Thorazine that will allow for her to sleep and have a pain free day following that night. My advice (the second day using Thorazine) was for her to take one only if she needed it. I had a feeling that she might not need it since today was pretty much a pain free day until I left for work at 17:00 hours. The main draw-back is that she is very drowsy. So, the dilemma is stated above and also in what is written here and what is told by medical proffessionals. Of course, this is Jill's decision to make but she will ask me for advice. My advice is for her to take this Thorazine at night until we see the new pain doctor later this week or maybe next week - depends on how they schedule Jill. He may give her the Oxy-Contin to try. This is so hard and knowing what is right is never easy when it comes to a situation like this. Most of you are against the use of Thorazine and Catlind, who's opinion I value, gave me reason to dig in and do some research. The only thing that I know for sure, is that after being given Thorazine, Jill slept for many hours without signs of a CH-attack and that the following day, she was pretty much PF. The same pattern was repeated the second day that she took Thorazine. Just my opinion - may not mean a whole lot, but as always, I am looking for something that will allow some relief for Jill - I know that it will be "medicated relief" until she cycles out.. I also know that no medication is the best way - but in Jill's case, it may be hard to leave all meds behind considering how hard she was hit the last couple of weeks. Marty |
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Title: Re: Worse and worse.... Post by cluster0557 on Apr 23rd, 2003, 3:01am on 04/23/03 at 02:34:53, marty wrote:
Marty, I would tend to agree with you and that the priority is to get Jill relief. If Thorazine gives her relief it would seem worth the risk as long as the risk is managed. From what I read short term use is not the issue. Long term is and I would get her off of it Long term. Hell most of the meds we take to act as prophylactics for the cluster all have a risk. Two weeks ago I wen into hospital Cadiac care unit because of risks. I am alive and well with a clsuter thank you very much. To me this has a BFL. What works for Jill to get her out of this cycle is important and number one. Once out of cycle re-evaluate and look at other choices. Here is to getting Jill out of Pain and into PFDAN. Luck and Wishes Jim |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 9:48am on 04/23/03 at 02:34:53, marty wrote:
Its great to hear that Jill was able to get some sleep and PF time. It is LONG OVERDUE. on 04/23/03 at 02:34:53, marty wrote:
The only reason I spoke up regarding the Thorazine was because I saw the effects of long-term use on someone very close to me and would never want to see anyone else end up in that condition. I don't know anything about short-term use, but would only say "Be careful". Once again, its great to hear about the sleep and PF time. Lets hope it continues until another safer method/route can be found. grant 8) |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 10:06am on 04/22/03 at 14:25:28, brain_cramps wrote:
on 04/22/03 at 20:06:57, don wrote:
grant(s) ;D >:( |
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Title: Re: Worse and worse.... Post by Mark C on Apr 23rd, 2003, 10:08am Thorazine (http://www.psyweb.com/Drughtm/chlor.html) is a powerful drug. So are most of the meds for CH, read the patient info on them and it will scare you to death. Hell one of Depakote's side effects was migraines!! I am very glad to hear something positive about Jill's condition. I, like many of you, have followed her since she found us. I have felt very helpless and frustrated so the fact she has got a few hours of rest from Thorazine is good, very good. PFDAN's Mark |
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Title: Re: Worse and worse.... Post by Ted on Apr 23rd, 2003, 10:23am on 04/23/03 at 02:34:53, marty wrote:
I guess after reading this thread and, this paragraph in particular, I don't understand why you won't let Jill try the 'shroom treatment. From talks with her in the past I know that she's apprehensive about using it too. But if she gets to the point she'd be willing to try it, shouldn't that option be available to her too? I remember (though I may be mistaken) you saying "not in my house" when this was brought up before. This could possibly resolve all the issues surrounding the use of narcs and thorazine. And to make it clear, this isn't a critique on your support for her. What you've done/are doing for her is top-of-the-line support in my book. OK, I don't have a book, but you know what I mean. :-) |
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Title: Re: Worse and worse.... Post by kissmyglass on Apr 23rd, 2003, 10:45am It's Illegal Ted.... |
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Title: Re: Worse and worse.... Post by Ted on Apr 23rd, 2003, 10:49am Yet much more effective and much less damaging to the body, Glass . |
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Title: Re: Worse and worse.... Post by Big_Dan on Apr 23rd, 2003, 10:57am Hey Jill and Marty.... ... again, I can't tell you enough how sorry I am... :'( I don't know what it's like to have CH that bad... my cycle seems to be ending, and it just started 5 weeks ago... ... but I'm trying to call in a favor from the "Big Guy" himself... and he's never let me down... -Big Dan BTW... those doctors that said you were a "lost cause", in more or less words, should be kneecapped.... just gimme the addresses if'n ya need it done... ;) |
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Title: Re: Worse and worse.... Post by CJohnson on Apr 23rd, 2003, 10:57am So is jaywalking..... Would you jaywalk for an opportunity to bring Jill some relief? "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.--That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, --That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it." We need laws, and devoted honorable persons to uphold these laws, but sometimes... -Curtis |
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Title: Re: Worse and worse.... Post by Margi on Apr 23rd, 2003, 11:00am You know what, Kissmy...? It's that kind of thinking that will keep what has proven to be the most universally promising cluster treatment illegal. What a shame. Look at all this scary chemical shit that they're giving Jill. You think this stuff isn't going to mess her up, long term (and give her little relief in the process)? The chemical structure of the psilocybin just makes so much sense in the treatment of clusters. It has helped a lot of people here and, yes, it's a moral choice whether to pursue a treatment that non-clusterheads have deemed illegal. How ironic is that? I think clusters should be illegal. |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 11:08am on 04/23/03 at 11:00:42, Margi wrote:
Wonder what the punishment would be? ??? grant 8) |
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Title: Re: Worse and worse.... Post by marty on Apr 23rd, 2003, 11:21am on 04/23/03 at 10:23:34, Ted wrote:
Let me clarify; Not in my house.. I meant exactly that - If Jill wants to try it, I have no direct reasons to have a problem with that (moral maybe) and I will in no way, shape or form try to stop her from trying it. I only expect her to respect me by doing it somewhere else. Marty |
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Title: Re: Worse and worse.... Post by Ted on Apr 23rd, 2003, 11:26am OK. Cool. That's fair and reasonable. I guess I was misinterpreting what you were saying before. |
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Title: Re: Worse and worse.... Post by Jill on Apr 23rd, 2003, 12:20pm I was reading this and had to smile - everyone is talking about shrooms, them having the capacity to bring me that much needed relief and illegality of them (if that is a word ::)) but no one really knows my stance on their use. Is it okay that I share? And by sharing, I mean no harm or anything - just adding my viewpoint. I, personally, do not want to use shrooms - this opinion has not been induced by anyone but is mine and soley my own view. Now, the question may be asked of why I dont want to use them - I hate mushrooms with a passion. My mom can verify this - I will find the tiniest mushroom on my plate, pick it out and put it to the side to be thrown away. How could I possibly use it as some of you do? And even if I did think that I could try them - I wouldnt do it for the sake of respecting both Marty and my parents and their ideals. That, to me, is a personal obligationthat I have of those that are caring for me. Does that make any sense? Just my thoughts.... Jill |
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Title: Re: Worse and worse.... Post by Big_Dan on Apr 23rd, 2003, 12:37pm I was told about the whole shrooms thing about 3 years ago, and I don't think I'd wanna use them either.... I personally don't like being high, and am pretty sure I'd not enjoy "trippin' balls" for 5 hours.... ... I'd almost rather fight a headbanger for 45 minutes.... ... call me crazy, you wouldn't be the first.... ::) -Big Dan |
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Title: Re: Worse and worse.... Post by cluster0557 on Apr 23rd, 2003, 12:45pm Good afternoon Crazy ;D I agree with Dan and Jill re shrooms. To me it is an issue of being a parent and not floating on a high in front of my kids for a few hours. I would rather get knocked out with a hammer than deal with the legal and moral dilema that shrooms would bring into my household. To Jill: I hope some relief is forthcoming. Take Care. |
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Title: Re: Worse and worse.... Post by kissmyglass on Apr 23rd, 2003, 12:59pm Margi & Ted.... Marty is a cop so having illegal drugs in his house would not be very clever. Thats all I meant... I want Jill pain free & feeling well as much as anyone... Kev |
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Title: Re: Worse and worse.... Post by CJohnson on Apr 23rd, 2003, 1:00pm Hey, Cluster0557, how about in an emergency room bed with a painkiller IV in front of your kids? How about being comatose from thorazine when your kid wakes up with a nightmare? Maybe I got the wrong idea of what exactly Jill is going through. I have never tried shrooms, either, but I don't need to. I am fortunate enough to be able to obtain relief through simpler means. However, if i had tried everything else, and had to resort to the measures Jill has described, I wouldn't hesitate. You speak of obligation to your caregivers, Jill. Your ONLY obligation is to get better. Its the best thing you could do for them and all of the others who care about you. -Curtis |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 1:33pm I'm glad I don't eat much during the day because I'm almost ready to launch my lunch all over my desk. Enough is enough! ::) on 04/18/03 at 12:46:25, Jill wrote:
on 04/18/03 at 12:46:25, Jill wrote:
on 04/18/03 at 12:46:25, Jill wrote:
on 04/23/03 at 12:20:31, Jill wrote:
So... on 04/22/03 at 14:25:28, brain_cramps wrote:
::) ::) ::) |
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Title: Re: Worse and worse.... Post by Roxy on Apr 23rd, 2003, 1:36pm on 04/23/03 at 12:20:31, Jill wrote:
Jill, I’m glad this post made you smile, because it sure made me laugh. I can say that I respect your stance on the shrooms, but I can’t say I understand it. You do realize that you don’t actually eat them don’t you? I also understand you not wanting to do it for Marty and your parent’s sake. I’m just glad that my family rallied around me and wanted me to try any means possible for a normal life. They have been just wonderful. [quote author=Big_Dan link=board=general;num=1050687985;start=50#87 date=04/23/03 at 12:37:40] I personally don't like being high, and am pretty sure I'd not enjoy "trippin' balls" for 5 hours.... [/quote] I can’t speak for everyone, but in my experience, I have never been ‘trippin’ yet while dosing. I am chronic, and can't remember the last time I had a PF day, usually the hits range from 5-8 a day, and there is no way I would trade the PF days I am having now. on 04/23/03 at 12:45:48, cluster0557 wrote:
I guess this makes me a terrible parent, because I discussed the issue with my children. We made this decision as a family. I have never floated on a high in front of my kids, but they do understand the necessity of alternative treatment. They want their mother back. They are tired of seeing me fight the beast every day and every night. on 04/23/03 at 13:00:26, CJohnson wrote:
This is so true Curtis. If I can’t function as a wife, mother, friend….or basically function as a human being, I might as well give up. My obligation is to my family, first and foremost; I would do anything (up to trading my first born... ;D, and that's negotiable), to get relief. |
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Title: Re: Worse and worse.... Post by cluster0557 on Apr 23rd, 2003, 1:46pm on 04/23/03 at 12:45:48, cluster0557 wrote:
Curtis and Roxy: You miss my point and that is one of legal dilema and my moral ethics. I am not in law enforcement but am a firm in my beliefs re: what is legal vs illegal. I will not set the example to my teenagers if this helps me but is illegal it must be ok for me. That is plain wrong in my household. I have been thru cycles that put me in and out of hospitals for DHE IV's way too many times but have dealt with being chronic in a way that does not interfere with my personal ethics. I do not choose to push my ethics on anyone. I do choose though to make my choices for reasons that I believe have worth to me and that my kids cannot interpret to their advantage or harm later. |
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Title: Re: Worse and worse.... Post by oringkid on Apr 23rd, 2003, 1:56pm On the shroom subject. I won't do them, but not for any of the moral (which I don't even get!) or other reasons such as their illegality (yes, it is a word :) ) My reason is pure wimpy assedness! I would do them if I could be 100% guaranteed that I wouldn't get sick! I know, I know, stupid reason!! But! What I don't get is this. The reasons that have been given for not doing it (although valid and I certainly respect them) seem to be pointing to a misconception. It's not like your supposed to become a tripped out, hallucinating, existential hippy. I read a whole lot about their use on the med board, followed the reports of the people trying it, and read all I could find that PinkSharkMark and Flash and others wrote on it. It is recommended that you take the smallest dose possible to begin with, which in most cases would NOT cause tripping and likely would have less deleterious effects on one than the pharmaceutical meds that many are taking now! You don't do it all the time or everyday! In fact you have to wait at LEAST one week before trying another dose IF the first dose did not have an effect. The people who have tried this treatment have carefully recorded their experiences. I think it has been as professionally and responsibly handled as possible in a non-clinical setting. I recommend reading up on it. I hope all that stuff is still in the archives... not sure, but I am sure that someone here can point in the right direction. There are lots of things that are illegal and shouldn't be and there are lots of things that are legal that should be illegal. Many things that used to be legal are not now and many things that were illegal have been legalized. There are some things that are legal only for certain groups (usually religious) such as peyote (certain indian tribes are allowed to use it in religious ceremonies) and marijuana (practicing rastafarians are allowed to use it during their religious ceremonies) and I am sure there are others. Life cannot be seen in only black and white there are many shades of grey. eol Sherry |
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Title: Re: Worse and worse.... Post by Big_Dan on Apr 23rd, 2003, 2:11pm .... the only reason that things like shrooms are illegal is because there hasn't been a legit reason for taxing them yet.... >:( ... but I do see your point. And yes, I was being naive and thinking that you had to use a half-cap to get any kind of effect.... -Big Dan |
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Title: Re: Worse and worse.... Post by Big_Dan on Apr 23rd, 2003, 2:14pm Quote:
... the human eye can only differentiate 14 different shades... ;D "My ass be a smart one!" -Big Dan |
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Title: Re: Worse and worse.... Post by Ted on Apr 23rd, 2003, 2:29pm on 04/23/03 at 12:20:31, Jill wrote:
Actually, that's why I wrote the following. Because I am aware of your stance on it: on 04/23/03 at 10:23:34, Ted wrote:
on 04/23/03 at 13:56:53, oringkid wrote:
You're not? Then I think I did something wrong when I did it. No real point to this post. I just felt left out not giving multiple quotations too. And giving multiples is something I always strive for. |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 2:32pm on 04/23/03 at 14:29:17, Ted wrote:
ROTF LMAO!!! grant 8) |
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Title: Re: Worse and worse.... Post by oringkid on Apr 23rd, 2003, 2:34pm Quote:
LMAO Ted! You're my kinda guy! ;D Sherry |
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Title: Re: Worse and worse.... Post by Roxy on Apr 23rd, 2003, 2:50pm on 04/23/03 at 14:29:17, Ted wrote:
.....and your phone number is....? ;) :-* |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 3:12pm on 04/23/03 at 14:29:17, Ted wrote:
and who said the spirit of giving was only at Christmas? Still laughing my a$$ off, Ted grant ;D ;D ;D ;D |
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Title: Re: Worse and worse.... Post by echo on Apr 23rd, 2003, 3:22pm on 04/23/03 at 13:56:53, oringkid wrote:
On the other hand Sherry, getting sick occassionaly has it's benefits. It lets you see how well you chew your food. Then you know wheather to slow down, chew more or get some dental work done. just my .02 I'll STFU now! ;D |
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Title: Re: Worse and worse.... Post by Ted on Apr 23rd, 2003, 3:28pm Um, Echo? This thread is purely about how funny I am. Please don't interrupt. OK people... Carry on. |
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Title: Re: Worse and worse.... Post by Roxy on Apr 23rd, 2003, 3:31pm Ted........are you in the phone book? ;D ;D |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 3:31pm on 04/23/03 at 15:28:34, Ted wrote:
I guess it is NOW!!! |
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Title: Re: Worse and worse.... Post by echo on Apr 23rd, 2003, 3:37pm on 04/23/03 at 15:28:34, Ted wrote:
Weeellllll! I guess I got Teds skivies in a wad. (can you get thongs in a wad?) Back to the main point, that being Teds head ;D (i kill me!) I must remain quite so Ted can lay a jocularity storm on us. I plan to borrow a pair of depends directly so I can remain in one spot. Okay -- here it comes. Ted -- the little teal green screen is all yours. I appologize for raining on your parade, peeing in you mess kit, or craping on your living room carpet, however it is said in Tedism. You've got the screen. |
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Title: Re: Worse and worse.... Post by Roxy on Apr 23rd, 2003, 3:43pm Does this mean we can get back to the serious business of phone numbers? ;D ;D ;D |
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Title: Re: Worse and worse.... Post by Ted on Apr 23rd, 2003, 3:43pm on 04/23/03 at 15:37:41, echo wrote:
Promises promises. Wow. Didn't think you'd take that post so seriously. ::) |
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Title: Re: Worse and worse.... Post by echo on Apr 23rd, 2003, 3:46pm on 04/23/03 at 15:43:41, Ted wrote:
Nice catch Ted. (left myself open for that one) |
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Title: Re: Worse and worse.... Post by brain_cramps on Apr 23rd, 2003, 3:47pm appropriate name for this thread!!! ::) ;D |
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Title: Re: Worse and worse.... Post by Jill on Apr 23rd, 2003, 5:28pm I wanted to post this earlier but had to leave for an appointment - not trying to ruin anyones fun here but wanted to add some more of my thoughts is all. on 04/23/03 at 13:00:26, CJohnson wrote:
It seems to me that everyone has more than one obligation in life, correct me if I am wrong. Yes, my first obligation is to take care of myself and get better and that is true. But I also hold the obligation of respecting those that care about me and treating them such as I want to be treated at the same level as caring for myself. I would never want to jeopardize what I have by breaking a promise that I have already made, a committment that I hold to a moral stance, not to do shrooms. Make sense? on 04/23/03 at 13:00:26, CJohnson wrote:
This example seems a bit extreme to me for so many reasons. Cluster headaches are not the only disease that cause this kind of situation and are not the only disease that children have to face with parents. I think what he was speaking of was more on a 'moral' level than anything else. So many times that decision to overstep what you feel is 'morally' right or wrong can not be done and you have to choose that road less taken because it is the right thing to do in your mind. Quote:
No one is saying that you are a bad parent and from what I can gather, you seem to be a great one and a great person. I do not have any children but I can only imagine the hardships that may or may not arise when the idea of shrooms is brought into a household. I am going to assume that some of it depends on the age of the children - older kids are more likely to understand that 'hey this is bad for recreational use but considering this situation, it is okay for medicational usage' while if a younger child is raised into a household where it is used all the time, regardless of the usage may become confused and see the usage as okay. Does that make sense? To me, what this all comes down to - all this about shrooms - is about ethics, morals and where you stand on certain views. This actually can tie into anything that we speak of - if you feel morally obligated to follow the law and not do shrooms, then that is what you do - nothing wrong with that at all. And if you decide to try shrooms - there is nothing wrong about that either - it doesnt mean that you dont have morals or anything else - it is just your own personal decision. I am not trying to say that anything is right or wrong - I think that I may be coming across that way and if I am, than I am sorry. I am just simply trying to say that we all have to make our own decisions on what to do and what not to do based on our own individual values and so on. And on a side note - I have no idea what you were referring to Grant in your earlier post.... Jill By the way - I am not taking the thorazine - my psychologist nearly had a heart attack when I told her about it... |
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Title: Re: Worse and worse.... Post by catlind on Apr 23rd, 2003, 7:15pm Quote:
I'm not the least bit surprised. Ethics and morals, a serious violation on the part of a few docs you saw in my opinion. Shrooms, illegally, are less evil on a moral ground than a doc deciding to whack someone out on thorazine legally, so they don't have to deal with them. But then what do I know, I'm not a doc. At least you got some sleep to regain your strength. |
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Title: Re: Worse and worse.... Post by jonny on Apr 23rd, 2003, 7:24pm You could be my Doc Cat, Christ!!!!, between the both of us we know more about CH than any three Docs....LOL ;D .................................jonny |
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Title: Re: Worse and worse.... Post by cootie on Apr 23rd, 2003, 10:27pm Tedism still has my interest........glad yer not takein the syke drug Jill.......seems to me it is what is used in mental institutions to keep patients under control......like zombies....scarey stuff cuz I think a person could get lost on that shit....and be hard gettin back to reality. I think it could permanently ruin sumone. Sumtimes strangely syked out normally Pam |
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