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TracyS.
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Tell me what works, PLEASE!!
« on: Jul 5th, 2003, 5:43pm » |
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Hey all. Thougth I had the CH ahndled, wrong. Off steriods and in days right back to where I started. Don you where right! I spoke to my doc. last week trying new med. Frova, not good, back to imitrex and steriods until I can talk with my doc. on Monday. She said I might need to go on Maint. med to keep me out of CH cycle. I believe she is right. So all you folks out there who have been at this much longer then I please tell me what works and doesn't break the bank! I don't think Litium is where I want to start unless I have too, too many side effects and as of now I don't seem to be chroinc suffer, just most of the summer! Anyaon with hints or feedback would be great. I have learned between you all and the doc. I can kbnow most of what I need. For now anyway. Thanks!
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eyes_afire
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Re: Tell me what works, PLEASE!!
« Reply #1 on: Jul 5th, 2003, 6:20pm » |
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Hi Tracy. Sorry to hear you're having a bad time. The good news is that there are preventative meds that can be very effective. Unfortunately, there is no sure fire preventative med that will work for everyone, so you'll have to do some experimenting.
In my opinion, the best preventative to try first is verapamil. It is one of the most effective and has less side effects than many other meds. Don't be discouraged if it doesn't work right away. It may take up to a week to become fully effective, but is often effective sooner than that. You may need your doc to adjust the doses also. Most docs start out prescribing too low of a dose. If the verapamil doesn't help even after adjusting the doses, you may have to switch to a different form of verapamil. I think many clusterheads have better success with the instant release form, but it may simply depend on the individual (I've been doing good with SR... sustained release).
Probably the next thing I would try (it's next on my list if verapamil fails me) is lithium. I would much rather try lithium before trying depakote, topomax, etc because it sounds like it has less side effects and a better track record for CH. But if you take lithium you will need to have regular blood work done.
Then, if neither verapamil nor lithium work alone, then I would try various combinations of both. Several folks here have had great success with verapamil and lithium in combination.
From what I've heard here on the board, it seems that the anti-seizure meds (like depakote and topomax) have greater incidence of intolerable side effects. I can't speak from personal experience because I've never had to take them.... and I hope I never do. But some people have success with them and can tolerate the side effects.
I really hope you are seeing a good neurologist because most GPs are out of their league when prescribing these sorts of meds. A lot of times GPs simply don't know much about them and are reluctant to prescribe them.
Also, if you haven't already.... Try oxygen. It may lessen your reliance on the ridiculously expensive imitrex. But it's extremely important to get the correct set up. For more info on oxygen, go to the general board and read the Oxygen topic at the top of the page.
--- Steve, one of many...
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Cooked Brain
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Re: Tell me what works, PLEASE!!
« Reply #2 on: Jul 5th, 2003, 6:46pm » |
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Dear Tracy,
to bad to read that you're in pain again. My doctor has given me a medicine named Deseril as preventative (the note included sais it belongs to the group of the ergo-talkaloides, for whatever that is  ) but the majority of the sufferers here find good relief with verapamil.
As aborter he gave me Relpax (eletriptan, for what I understand more or less the same as Maxalt) and that WORKS!! Within 20 minutes the pain decreases dramatically. It doesn't work for everyone though, but you could give it a try...
hope you will do better very soon
PFD&N
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Ueli
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Re: Tell me what works, PLEASE!!
« Reply #3 on: Jul 5th, 2003, 8:11pm » |
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Tracy,
I agree with Steve, one of many, you should insist on the preventative with the least side effect, Verapamil, and the relatively inexpensive Oxygen as abortive. The steroids seldom end a cluster period, but are useful to give a holiday until other preventatives kick in.
Murazzio,
It is good to hear that Deseril helps you as a preventative. However, it's a bit in vain to recommend it, as Novartis has stopped the production of methysegide (trade names: Deseril, Sansert) in most countries and many can get it only from abroad. 
PFNADs
Ueli
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Cooked Brain
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Re: Tell me what works, PLEASE!!
« Reply #4 on: Jul 5th, 2003, 8:27pm » |
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Dear Ueli,
do you know why they have stopped??
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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Brew
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Re: Tell me what works, PLEASE!!
« Reply #5 on: Jul 5th, 2003, 8:39pm » |
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murrazio - I think there are only three reasons a drug company stops producing a med:
1. They are ordered by a court to do so.
2. They want to prevent the possibility of future lawsuits.
3. It is no longer profitable.
In Novartis' case, the first does not apply, the second seems unlikely, and the third, well, if the other two don't fit, follow the money (or lack thereof).
Best,
Bill
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Cooked Brain
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Re: Tell me what works, PLEASE!!
« Reply #6 on: Jul 5th, 2003, 8:51pm » |
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Hi there Bill!
so we meet again
I live in the Netherlands, only a very small market if you look at the population of 16 million. Even if you look at the EU it looks small compared to the US and/or Canada, so those big markets looks more profitable. On this site the majority of sufferers is from the US. Could it not be that some patients have had some bad experiences with these drugs? I am glad that it works for me (for now) but I do have some very weird side effects. Or is there some legislation which causes Novartis to make less profit?? It just seems so weird to me to exclude a drug that can be effective.
PFDAN
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TracyS.
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Re: Tell me what works, PLEASE!!
« Reply #7 on: Jul 5th, 2003, 9:02pm » |
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Thanks for all the help! My neuro. said last week when we talked about it over the phone( see I am suppossed to call her Mon. and let her know how the Frova is.) anyway she said the anti seizure that was the way she was headed. I wasn't jumping up and down when she said it, I have some concerns. Side effects? What are the common ones from that med? She also said anti depressants, things they use to treat Bi polar? I asked about Verapamil I think, but didn't know the name or what it was. Is this a calcuim channel blocker? My concern about lithium is yes I do have a good neuro. but she is 82 miles one way from me. My GP well let's just say he has washed his hands of this health problem because he is SO far out of his league. On the upside at least he knows it! Oh relpax, yes it works and I have some samples. But I have already figured out I can't afford to fill a script. My insurance prefers imitrex and relpax is 15. 80 a pill! At 2 a day it keeps me going , but my checking account would be drained! It goes back to too much pain and not enough money! I know that is understood by many on this site!
I'll keep checking back with you guys. At least this way on Monday I will have more of a clue when I talk with the doc. Thanks everyone!
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Cooked Brain
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Re: Tell me what works, PLEASE!!
« Reply #8 on: Jul 5th, 2003, 9:12pm » |
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15.80 a pill??? GLUMP!!! 
In Holland the insurance covers the 40mg pills, your helath-system really s*CKS! 
PFD&N 2 all...
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"We can NOT solve our problems with the same kind of thinking that got us IN to the problem in the first place" Albert Einstein
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TracyS.
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Re: Tell me what works, PLEASE!!
« Reply #9 on: Jul 5th, 2003, 9:24pm » |
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Yup! 15.80 a pill that's the 40mg pill. From what I understood from my pharmacy and insurance, no one seems to buy it. My pharmacy said they haven't filled it before, they don't have it on hand. After I found out how much it was I understood why!
Yes our health care system is in need of something, a good kick in the butt, at least! But imitrex is no cheap fix either as you all know! The drug compaines get you coming and going and if they don't insurance will! Oh well life you've got to have health coverage and God help you if you do and help you even more if you don't! I am thankful that I have coverage, it's better then not!
I just printed off a bunch off med. info from the site so I will do a bunch of reading about all the different drugs and effects. Thanks guys I don't know how I would have gotten this far without all of you to help, support and listen to me whine! Have a good night all, I've got to go tuck my child in bed. Thanks again. Here's hoping we can all be PF and stay that way! later...
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FrankF
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Re: Tell me what works, PLEASE!!
« Reply #10 on: Jul 5th, 2003, 9:47pm » |
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Verapamil 480mg/day costs about $2.50 if you don't have insurance.
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Bob_Johnson
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Re: Tell me what works, PLEASE!!
« Reply #11 on: Jul 6th, 2003, 7:41am » |
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Buy one of these books and get the advantages of some organization to a treatment plan.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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TracyS.
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Re: Tell me what works, PLEASE!!
« Reply #12 on: Jul 6th, 2003, 1:16pm » |
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Thanks for the reading info. I will look into it. Yes, info is what I need. That way I can maybe at least understand and get a handle on this for my sake and my families!
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MarkG
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Re: Tell me what works, PLEASE!!
« Reply #13 on: Jul 6th, 2003, 1:20pm » |
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Hi, What has worked for me over the last few years is a combination recommended by my neurologist in the UK and he says it works for 70% of sufferers. I take half a 250mg Lithium and 2 x 1mg methysergyde three times a day - no side effects and it really does help me - they don't go away and they're still VERY painful but they are bearable. I sometimes still pace a little but most of the time I can sit and wait for them to pass. I forgot one dose recently due to domestic problems and in a couple of hours I was back to the jibbering wreck in agony so I know this treatment really works. We're all different, what suits one doesn't suit another I just hope that if you can get your physician to prescribe this for you that it works for you - Mark
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KingOfPain
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Re: Tell me what works, PLEASE!!
« Reply #14 on: Jul 6th, 2003, 1:23pm » |
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O2,O2,O2.
KOP
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TracyS.
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Re: Tell me what works, PLEASE!!
« Reply #15 on: Jul 6th, 2003, 1:38pm » |
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Thanks King of Pain for the O2. When I saw the doc. for the first time we talked about how far to hospital or GP for O2. I am less the a block to either. But that was all we talked about. I have wondered why she hasn't written me a script for O2. I guess I need to ask that in the morning instead of wondering! Lord knows it would be less wear and tear on my body. I know the set-up has to be right, but beyond that is something about O2 that makes it not the best chioce. I know it isn't always a doable choice unless you carry it with you at all times. Does the O2 just treat the attack or can it break the cycle and keep it away? It can't can it. See I know nothing when it come sto O2.
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BobG
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Re: Tell me what works, PLEASE!!
« Reply #16 on: Jul 6th, 2003, 2:07pm » |
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The O2 is used to abort an indivdual attack. It will not prevent a future attack.
Go over to the General Post area of this site and click on the very top Subject to learn more about Oxygen.
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smfaison
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Re: Tell me what works, PLEASE!!
« Reply #17 on: Jul 6th, 2003, 3:04pm » |
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The most effective stuff I ever took was Sansert and Prednisone. And I had the Imitrex injection if all else failed. Now Sansert is no longer available in the US, so my neuro won't prescribe it. I am now taking Prednisone and Depakote and something called Bellaspas which is ergotamine and phenobarbital. I was PF for 4 days, but had started tapering off the Prednisone when I got slammed by a bad headache yesterday. It lasted 4 hours and I was trying to get a ride to the emergency room it was so bad. Hope this helps.
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Pinkfloyd
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Re: Tell me what works, PLEASE!!
« Reply #18 on: Jul 7th, 2003, 6:58am » |
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on Jul 5th, 2003, 9:47pm, FrankF wrote:| Verapamil 480mg/day costs about $2.50 if you don't have insurance. |
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YES, and...verapamil has about the same efficacy rate as any good placebo...don't believe me, check out the meds survey on this site or any published data on it's effectiveness for actually preventing clusters.
try checking out: www.clusterbusters.com
PF
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smfaison
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Re: Tell me what works, PLEASE!!
« Reply #19 on: Jul 8th, 2003, 6:51pm » |
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Tracy S,
The most effective stuff I ever took was Prednison, Sansert, and Imitrex if all else failed. Now Sansert is not distributed in the US, but still available in Canada. I am now on Prednisone, Verapamil, (which also helps my BPJ), Depakote, and Bellergal. I just got Stadol nasal spray for when I get a CH anyway, but haven't tried it yet. So far the Depakote, Bellergal, and Prednisone seem to be preventing the CH for the most part. My spells usually last 4 months, and I'm only 1 month into it.
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TracyS.
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Re: Tell me what works, PLEASE!!
« Reply #20 on: Jul 8th, 2003, 11:25pm » |
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Has anyone tried Botox before? I found out today my Neuro. will do injections every 12 weeks. She says they work great.(?) I guess it isn't cheap! But hey if it works?
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Pinkfloyd
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Re: Tell me what works, PLEASE!!
« Reply #21 on: Jul 8th, 2003, 11:57pm » |
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This is a report of a study by one of the first to try it for clusters, if not the first. He knows his stuff.....
THE most important thing is knowing where to give the shots. IF you end up going this way, I'd ask the person who would be giving the injections..."How many times have YOU done this and how is your aim?"
http://www.headachedrugs.com/archives/botulinum_toxin_typeb.html
PF
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"Nothing is so firmly believed as what we least know."
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[Michel de Montaigne
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TracyS.
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Re: Tell me what works, PLEASE!!
« Reply #22 on: Jul 9th, 2003, 9:19am » |
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AIM!!! Yeah right. Esp. since we are talking face by my eye! I asked the Neuro. staff about where she gives the shots yesterday and I was told it depends on where the headache settles. It sounds like the Neuro has been doing it for years! They say it really works and they have people who stay headache free for 11 weeks at a time. The big thing is the cost, they wouldn't give me a price but said that unless insurance covers it, not a choice! We'll see. Thanks for the link I will check it out! Have a good one!
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NewHeadPLZ
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Re: Tell me what works, PLEASE!!
« Reply #23 on: Jul 10th, 2003, 11:58am » |
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Funny as it may sound, Botox is showing a 55% success rate in treating Migranes compared to placebos. But, that's migranes, who knows what it'll do for clusters.
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TracyS.
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Re: Tell me what works, PLEASE!!
« Reply #24 on: Jul 10th, 2003, 4:52pm » |
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From what I read yesterday at that link not a lot of success for clusters, or at least not enough to cover the cost! Finally got doc today to give me verapamil and have started hoping that it will kick in before I'm done with steriods. We'll see this is all such a guessing game! Thanks for all the help folks you are all a God send in support!
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