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Jill
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Chronics - Cycles within Cycles
« on: Jun 25th, 2003, 5:11am »
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I am sorry that I have not been around too much lately, lots have happened and motivation for anything is hard to come by.  
 
I am sure that the board has addressed this before and I am sorry if it has but I need some help. I know, I know - again. Roll Eyes  
 
I have been chronic now for almost a year and a half with no meds that have brought any relief and if they did work than it wasnt for very long and with very little relief and major side affects.  
 
My question is that if chronics have cycles within cycles. I mean I was doing pretty well since Easter with the headaches (sorrry - didnt want to say anything in fear of jinxing it). I mean I still had them and lots were still bad but no ER visits since then. I was, however, taking Vicodin and Valium on a regular basis along with Celexa, Thorazine, Benedryl (then replaced with Melatonin) and a vitamin. And I just started Verapamil again.
 
But now, things have gone down hill again and the clusters are getting worse and worse. I have been to the ER three times since this past Sunday night and two of those times were within hours. I went last night about six at night, left at around eight just to return at two this morning. Now I am so medicated on Dilaudid and benedryl (hence the no sense rambling - sorry Embarassed)
 
Anyways, I was just wondering if other chronics had this, if it was rare or what. I know that some do but I am not sure about others. Also, I am wondering what other meds they may be able to try me on. I have tried everything but nothing seems to work - the last combination was supposed to be verapamil with sansert but they discontinued it.  
 
I am not sure what else to do, we are all scared right now and with everything else that is going on - this is not what I need. Not that anyone does... I may (so long as my insurance approves it) go back into the hospital for the DHE treatments or to  find something else that works because taking this Vicodin and Valium as much as I do can not be good.  
 
Sorry for rambling and I hope that this makes some sort of sense - I am so 'doped' right now.... Undecided
 
Thanks for the help and I sure hope others are well and doing good. I will try and check in more often - my head is giving me alot of hell...
 
Thanks
Jill
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Re: Chronics - Cycles within Cycles
« Reply #1 on: Jun 25th, 2003, 6:28am »
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Hope your head stops hurting.
You're not going to like what I have to say so I won't say anything..... Lips Sealed
 
 
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Re: Chronics - Cycles within Cycles
« Reply #2 on: Jun 25th, 2003, 8:54am »
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I'm with Kev on this one too Jill.  I'm sorry you are hurting, but you're not going to like what I have to say either.  
 
Yes, I'm chronic, and yes there are cycles with the chronicness.....and those cycles can get really nasty.  I have told you what my treatment is, and it is a treatment that you don't agree with, but it is the only thing that has given me PF time.
 
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Re: Chronics - Cycles within Cycles
« Reply #3 on: Jun 25th, 2003, 9:42am »
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Okay, Jill, then I'll say it.....Kev & Roxy know it....and they know how upset it makes you, but you know I am always gonna be here, and I'm always gonan tell you what I REALLY am thinking, so here goes....darlin', drugs & more drugs.....they're NOT helping, they're making things even worse! Rebounds, fogginess, addiction...it's really compounding the problem here......if the drugs don't work-why take them? If it's just to take the 'edge off".....well, it is creating a whole new problem! Narcs are NOT the answer, Jill! Verap is gonna take some time to get into your system- you MUST give it that time, and then some time to adjust the dosage. Meanwhile, Jill, you are using some stuff which could cause you lifelong issues-and still never TOUCH the clusters!
I KNOW how tough you are, and I KNOW you can fight. You MUST stay healthy and strong so you can hang tough against the beast.....you can't be that way if your body is in meltdown due to the drugs piling, layer upon layer upon layer, in your system.
Give the verap a shot- a least a week......keep communication with this neuro.....and know 2 things:
THERE ARE PLENTY HERE GOING THROUGH THE SAME- honey, I could name a dozen right now-4-10 hits daily-all high kips......they're in pain, they're exhausted, they're fighting- I'm looking forward to you finding that which works best for you, but you & your neuro have to keep looking for BETTER options, till you find yours.
Think about it Jill-
Keep finding your stars....
Cathi
« Last Edit: Jun 25th, 2003, 9:45am by YR_FREINDCATHI » IP Logged
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Re: Chronics - Cycles within Cycles
« Reply #4 on: Jun 25th, 2003, 9:54am »
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Jill,
 
Good to see a post from you again. I have little to offer except prayers and good vibes.  
 
As an episodic, I will say, that Vicodin and Valium can’t touch my Cluster Pain and they have no bearing on where the pain originates. Therefore, they fuck up the basic standard of living, with no real relief from Cluster Pain.
 
With the cocktail of meds that you have tried, your body doesn’t know what to do. If you were getting relief, that would be one thing, but since you aren’t, change is necessary. Stop all the extraneous meds, and start from scratch, with proven Cluster meds. With a clear system, you will be able to actually evaluate them, on their own terms.
 
Again, if you were getting relief, this would not be an issue.
 
Hugs and Pain Free Days and Nights,
 
David J.  
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Re: Chronics - Cycles within Cycles
« Reply #5 on: Jun 25th, 2003, 12:16pm »
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   Jill,  
 
 
  You and probably everyone else knows how I feel about narcotics for clusters, so I'm just gonna say a huge big DITTO  to what Cathi said and leave it at that.
 
  You know I'm chronic also, and yes I get a cycle with-in a cycle.  I'm in one now and have been since March.   Brutal is all I can say.  
 
 You told me once that you had the DHE-drip, but they didn't do it correctly, and there-fore it didn't work.  Maybe you could consider having it again?
 
  Tell Marty Hi from me, if he ever comes down from the lower forty. LOL
 
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Re: Chronics - Cycles within Cycles
« Reply #6 on: Jun 25th, 2003, 12:59pm »
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Yup Jill, ditto to the above.  Clean slate, no narcs, start all over.  People on the board do it all the time when the meds that did work for them stop working.  
 
Ya gotta get all the "crap" out of your system ... get back to the real pain, and eliminate any rebounds.  That way, you are just dealing with the clusters which suck enough all on their own !  
 
Good luck !
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Re: Chronics - Cycles within Cycles
« Reply #7 on: Jun 25th, 2003, 1:21pm »
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I agree wholeheartedly with Cathi and everyone else.
 
If you actually want relief, then you are going to have to detox.  Completely.  Off of everything.  When you next go to the ER tell them NO NARCOTICS!
 
If you choose not to detox and continue with the Valium Vicoden Dilaudid Thorazine etc, etc.  Then I'm afraid, I, for one can't give you anymore advice, etc.
 
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Re: Chronics - Cycles within Cycles
« Reply #8 on: Jun 25th, 2003, 1:28pm »
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Sorry Jill but I also have to agree re-read Cathi's post it was spot on.....Clean Slate....wishing you PF times.
 
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Re: Chronics - Cycles within Cycles
« Reply #9 on: Jun 25th, 2003, 1:56pm »
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Jill:
 
Sorry about the ramp up. I can understand the cycle within cycles. Chronic for six years. You start noticing all those extrta special details that mean oh so much to your special relationship with the CH nightmare.
 
I'll probably get blasted for this, but I don't care. Being chronic sucks. Saying don't ever use narcotics sounds strange to me, because if Imitrex and O2 and other preventative meds like lithium and verap don't work, what's left?  
 
If the preventative and abortive meds don't work, I appreciate that pain meds can be an option. I think all medication, including narcotics, have their place.  
 
Let me clarify that by saying "as long as they are used correctly". As a chronic, I understand the need for occasional narotics, sometimes you have to do something, anything, so you know you have tried. Maybe it works, maybe not. Sometimes you have to try.
 
However, if you are popping pills like tic tacs and then have trouble remembering if you took them because you see no benefit, it's time to do something different. Your system is full, tapped out on all that crap and it needs a break.  
 
Wean off, don't quit cold turkey. Drink more water than you think you can possibly hold, then drink some more. If you make it through the first two weeks, it gets better. A six-week break is ideal. If you do go back on the meds after that, they will work better. Then think simplicity. If you have more than three in your system, it is hard to determine what is helping. You want to control your headaches, not have the headaches and meds controlling you.  
 
Try to save the heavy hitters for when you hit rock bottom. As a seasoned explorer of rock bottom, it can be difficult to determine this, so ask someone to do it for you when things are semi-calm.  
 
In the meantime, I feel what you feel and am sending prayers and happy thoughts your way. You are going to beat this!
 
V
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Re: Chronics - Cycles within Cycles
« Reply #10 on: Jun 25th, 2003, 2:03pm »
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Jill, we have had our disagreements about the medications, but I have to agree with what everyone is saying.  I believe a detox is necessary, if nothing else so you can see if new meds will work.
 
I hope the DHE drip does work for you.  Have you tried Relpax?  What about a combination of meds.  Such as Ultram and a triptan?  Surely there is a combination of preventatives out there that will give you some relief.
 
Pulling for you.
 
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Re: Chronics - Cycles within Cycles
« Reply #11 on: Jun 25th, 2003, 7:31pm »
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Hmmm....I am not sure where to begin this right now but I shall try...but bear with me, k?
 
First of all, I know how most all of you feel about narcotics but when all other meds fail, like Hdbngr said, what else do you do? I am still looking for a solution or atleast some help but it is hard to find.  
 
The reason why I was asking was because I couldnt understand why my cycle had turned so bad so fast again and if this was normal. I just got back from my fourth visit at the emergency rooom since Sunday night and I am sure that another one will be in call for tonight. They were thinking about admitting me and if I return tonight, then they will. This would be to control the pain and possibly try the DHE treatment again but I am not entirely sure yet.  
 
I know that this all about abortives but that is what is so important right now for me because preventatives take so long to try due to the time that they take getting into your system. Time is the one thing that I am afraid of but that is just me.  I am also afraid that a major detox right now may make things worse but I could be wrong - this is all very hard.
 
Thanks for the help, I appreciate it and I am glad that I am not the only chronic with smaller cycles within the big one. I hope that whoever is suffering from anything gets well soon - I really do.  
 
Thanks,
Jill
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Re: Chronics - Cycles within Cycles
« Reply #12 on: Jun 25th, 2003, 7:48pm »
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Curious here......  ???
Just wondering if the same doctor is writing scripts for all these meds.....
 
Jacks Cool
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Re: Chronics - Cycles within Cycles
« Reply #13 on: Jun 25th, 2003, 7:59pm »
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on Jun 25th, 2003, 7:31pm, Jill wrote:
They were thinking about admitting me and if I return tonight, then they will. This would be to control the pain and possibly try the DHE treatment again but I am not entirely sure yet.

 
"Im not entirely sure"?
 
Sure, suck up the drugs rather than treat the problem.
 
Im completely done with this!.
 
....................................jonny
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Re: Chronics - Cycles within Cycles
« Reply #14 on: Jun 25th, 2003, 11:16pm »
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 this may be stupid, but would someone tell me what  a dhe drip is.   i am chronic also, and all the meds do is numb the rest of my body, and make my head feel like is going to roll off of  my shoulders.  i take meprigam for my migrains, but  not for cycle attacks.  it just dosen't work for me.  
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Re: Chronics - Cycles within Cycles
« Reply #15 on: Jun 26th, 2003, 12:52am »
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Okay - I am not sure what happened to this thread but the question that I was asking was not really answered. But that is okay..
 
However, there was no need to go off on me about the medications that I have to take in order to control my life halfway.
 
Quote:
Just wondering if the same doctor is writing scripts for all these meds.....  
 
Jacks  

 
Yes, I have two doctors working together right now and each one knows what the other is doing. I am not an addict and to say that I Quote:
Sure, suck up the drugs rather than treat the problem.
is just shit in my book. There is no real way to 'treat' the problem but to manage it.
 
Sorry that this was all taken the wrong way... Roll Eyes
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Re: Chronics - Cycles within Cycles
« Reply #16 on: Jun 26th, 2003, 8:07am »
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on Jun 26th, 2003, 12:52am, Jill wrote:

 
Yes, I have two doctors working together right now and each one knows what the other is doing.  

 
Jill,
 
IMHO neither one knows what they are doing unless there is more to the story.
 
Dope has been used by countless CHers to no avail.  It only clouds the issue so to speak.  Plus it can lead to more issues down the road.
 
Let me tell you a little story.......There was this man who suffered from a painful chronic disease.  He was given dope.  He took it.  He took lots of it.  He died.....not from the chronic disease but from something else that should not have killed him....but it did because the dope had masked the symptoms and proper treatment for the minor ailment wasn't received.  The man was my Dad.
 
Couple more things here and then I'll hush.....
 
As to the "cycles within cycles"....Chronics are never out of cycle.  Sometimes they just get hit lots harder than at other times.  Having done your homework I'm sure you knew that.
 
Expect to get replies that you don't much like each and every time you post the drug regime you are on.  The long time sufferers have the experience and knowledge to know that narcs do not work.
 
You have to know that jonny is a plain speaker and cuts to the chase.  He has been a chronic longer than you have been alive and knows what he's talking about....he's been there and tried it all.  Try as hard as you can to listen to what these folks are telling you....they only have your best interest in mind.
 
Bless your heart....I wish you well.
 
Jacks Cool
 
 
 
 
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Re: Chronics - Cycles within Cycles
« Reply #17 on: Jun 26th, 2003, 8:31am »
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Okay, Jill- Cycles within a cycle. I know you've heard this before.....it is very possible that you are experiencing one of 2 things we have discussed before....
CH/Migraine combos-where one ramps down, the other ramps up     OR....(UH-OH...)
 
Whether you like it or not when I say it......darlin' REBOUNDS!!!! Jill, ask your neuro about them.....PLEASE!! What you THINK is giving you some relief might very well be compounding your PAIN!
I don't want to see you drifting from hit to hit in a fog- but that's what happens! You never know complete Pain-Free, even though you never get the sharp edge of the hit.
Did you go back to the ER last night? Are you gonna do the DHE drip?
Jill, I really only want you to be PF- I hope you know that.  
And where is that Limestone Cowboy....Martin? Has he checked in lately? And, to whom? Martin....step UP!
Jill, be PF....
Cathi
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Re: Chronics - Cycles within Cycles
« Reply #18 on: Jun 26th, 2003, 9:53am »
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 Jill. I think someone linked to this a while ago. Its a bit drastic, but maybe worth looking into.
 
New treatment for cluster headache
 
Susan Aldridge, PhD  
 
Electrical stimulation of the brain provides long lasting relief for cluster headache.
One of the most severe forms of headache and facial pain, cluster headache begins with a stabbing pain in or around the eye and persists, increasing in intensity, for up to two hours. People may be affected by 'clusters' of attacks over a period of weeks or months, followed by remission. Other symptoms include nasal congestion, drooping eyelid, eye watering and sweating.  
 
Medical treatment, with a variety of drugs, may not work and surgery gives poor results. But now US researchers may have hit on a new answer for cluster headache. They tried implanting electrodes into a region deep in the brain called the posterior hypothalamus and stimulating these with high frequency radiation. The results, on a small study of eight patients, were dramatic, with all becoming pain-free during the treatment program and remaining so during several months of follow up. The treatment may sound drastic but it appears to be both safe as well as effective. A larger study would now confirm whether the electrical stimulation treatment can be offered to more people with drug resistant cluster headache.  
 
 
Source  
American Association of Neurological Surgeons Meeting 28th April 2003
 
Link :
http://www.healthandage.com/Home/gid1=3770
 
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Re: Chronics - Cycles within Cycles
« Reply #19 on: Jun 26th, 2003, 10:09am »
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Here is another bit about the implant.  
Link:
http://216.239.37.100/search?q=cache:Cn7r23CRCaYJ:www.neurosurgery.org/a ans/meetings/2003/731.pdf+cluster+headache+2003&hl=en&start=14&ie=UTF-8
 
Exerpt:
Results: At the last follow up (30.8 months) all patients were pain free without drug treatment. When the stimulator was switched off the typical attacks recurred; and when the stimulator was switched on the attacks disappeared again. No side effects (changes in arterial blood pressure, heart rate or skin temperature) were observed during intraoperative stimulation or during the post-operative course. All patients underwent postoperative PET scanning in on and off stimulation. Body temperature, arterial pressure and heart rate were monitored for 24 hours before and after the hypothalamic implant.
 
Broggi Giovanni MD  
Franzini Angelo MD
Bussone Gennaro, MD
Ferroli Paolo, MD
Leone Massimo, MD
Dones Ivano, MD
Marras Carlo, MD
Discussant: Jeffrey A. Brown, MD
 
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Re: Chronics - Cycles within Cycles
« Reply #20 on: Jun 26th, 2003, 10:25am »
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Right on Jackie ..... you have a much better story than I, but I basically told her the same thing in an email.  
 
Jonny, I know where you are coming from ... cause you can't support someone who doesn't want to truly help themselves in the long run ............. you give them all the help you can ... and then it's up to them to figure it out !!!!!
 
Jill, I wish you the best ...........but if you are not willing to listen to people who have suffered way longer than you with this disease ............ well ............
 
You fill in the blank Jill.
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Re: Chronics - Cycles within Cycles
« Reply #21 on: Jun 30th, 2003, 9:33am »
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Okay...
 
I have a story of my own. Once upon a time, I got to the point where I also was popping pills like tic-tacs and they were no longer working. I was in so much pain that I couldn't remember if I had taken them or not, so I went to a lovely clinic where headache treatment shunned pain medicine of any kind. I spent a week in their hospital on an IV with regular doses of DHE, magnesium, and Reglan to try and "break" the cycle. The pain did not stop, did not improve, as I followed their treatment plan for the next year. I did NOT take any pain medication of any kind, not even cold medicine or aspirin, things most of us take for granted. I DID take the preventatives and abortives prescribed, used oxygen constantly. For one full year, 365 days of pure, unalleviated hell, I followed this plan.  
 
It was the WORST year of my life. What I, and subsequently the Doctor realized, was that the intense, chronic pain was not due to the use, or overuse of pain medication. If it had been, the headaches would have been better, or even gone away, not become worse.
 
I am chronic. What this means for us is that we get hit all of the time, every day, every night with no remissions. We aren't taking narcotics to feel good, we take them so that we can get enough relief to carry out basic functions of life, such as eating, bathing, brushing our teeth.
 
What if you woke up one day and your lithium and verapamil combo quit working? Despite your best efforts, dosage changes don't help. You reach for your O2 and discover that doesn't help either, so you injected a bunch of Imitrex and that was like injecting water for all of the effect it has. What would you do? How long could stand Kip 8- 10's 24 hours a day, seven days a week?  
 
Now what I am asking is going to sound crazy. I'm asking you to give up your preventative meds, your Imitrex, your O2, while in cycle. Don't use any medication that will help with the pain. Do this for two weeks. Would you do it? Take a walk on the wild side, in our shoes? I'm not expecting any volunteers here, because you would be masochists. You are asking someone to give up the one and only thing that offers a small measure of relief.
 
The suggestion that there is a "Doctor shop" going on, that the system is being played to get multiple meds from multiple Doctors, that you "can't support someone who doesn't TRULY want to help themselves" (we are here to provide support, period, and define "truly"!) and that because some people have "suffered way longer" is the shits and the pits. This is the kind of talk I would expect from a non-sufferer, an incosiderate Doctor, but never a fellow sufferer.
 
Empathy, sympathy, whichever you can offer, is what is needed for Jill. Understand that many chronics have tried it all in multiple combinations and found no relief. We are surviving, breathing in and out, but we are not living. Live our kind of life, give up YOUR meds, then feel free to judge.  
 
Vanasa (hdbngr)
 
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Re: Chronics - Cycles within Cycles
« Reply #22 on: Jun 30th, 2003, 9:46am »
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In regards to the medications, from what I understand there have only ever been two narcotic meds that have been effective.  One is oxycontin, the other is a duragesic patch (might be the same thing I don't know).  My concern is that if Jill needs to use narcotics for pain relief that she at least use the ones that work.  Using multiple different narcotics WILL lead to problems.  Sailpappy and others (I won't name names because I don't know if they are public) have had success using oxycontin and the patch.  IMO, that would be the road to go if NOTHING else helps.  
 
Just my 2 cents worth.
 
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Re: Chronics - Cycles within Cycles
« Reply #23 on: Jun 30th, 2003, 10:15am »
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Ok I'm jus a supporter here and no real expirience with the CH drugs 'at hand' but I've taken my share of valium, Xanax ect (for stress and panic attacks or insomnia deals) and have taken vicoden fer broken bones ect or ha's...have taken lots of over the counter meds for migraine or ha's and sinus ect  too.....handfulls ! But in my expirence it seems that when I started with that stuff I had naggy heavy achey head FOR DAYS....of course you think it is the problem you took the meds for but I think it was the meds I took for the problem ! I think you can get caught up in a vicious circle and go round and round tryin to keep ahead of all that and get lost in it all.....a catch 22 so ta speak. I HATE havein a foggy head or that nasty ache that hangs on non stop for days. Then ya take sumthin else for that and it goes 'round and round !  I wish you "all the luck in the world Jill and then sum to get PF !!!!! Pam that hates a suffering vicious cycle
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"

Jill
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"Life is a series of goodbyes and hellos" Billy J.

  Worldshots2003   FarmerGJill
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Re: Chronics - Cycles within Cycles
« Reply #24 on: Jun 30th, 2003, 10:17am »
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Wow....
 
Thanks for all of the concern and thoughts about the medications that I have been taking - I have looked at them seriously and have been trying to find away to get through all of this. So...
 
For three days (the last three days), I was in the hospital for the DHE treatments which, unfortunaltly, didnt seem to help like I was hoping that it would. However, while in the hospital they did take me off of the vicodin and are helping me to wean off of the valium (havent taken any since yesterday morning). I am not sure where this is going to lead as they have me on verapamil (tried twice before) and celebrex for the pain -seems unusual to me. They also still have me on the thorazine (which they told me about the long term effects) with benedryl, melatonin or dramamine.
 
I have an appointment on the nineth with my doctor and we are going to have a serious talk with her about where we stand and all. I am concerned as is everyone here and it is very frusterating to me right now because the pain is getting to me, obviously.  
 
I guess that that is all for now - it is hard to say what is next or where I or others in my case can turn when nothing else works - it is all very confusing.  
 
Thanks for everything guys...
 
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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