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Title: I've tried almost every med out there Post by ltltnt on Apr 20th, 2002, 9:04pm If I had to list every medication I have been on for my cluster headaches I would be hard pressed to do it, when I went to Diamond Headache Clinic I know out of over 200 medications I had been on 185 at least ,finally out of desperation my neurologist and primary care doctor decided to take some drastic measures and they put me on a low dose sustained release of morphine which is helping but I seem to have gotten moody I mean >:( one minute and then ;D the next does anyone have any expereince with this if so please let me know. I am also still taking Lithium and Verpamil |
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Title: Re: I've tried almost every med out there Post by Marc on Apr 23rd, 2002, 6:43pm Sorry to hear you are having such a bad time! I'm not qualified to respond about Morphine, but I am curious about your dosages of Verapamil and Lithium - and how long you have been taking them. I'm assuming you are chronic based on your comment about 185 meds, how long have you had CH's? Marc |
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Title: Re: I've tried almost every med out there Post by Greg_A on Apr 23rd, 2002, 7:45pm ltltnt-- have you tried o2? I just started it last week and have had nothing but GOOD results. Marc-- i am taking Verap (regular) @ 720mg and Lithium @450mg. I used to take verap (Sustained Release (SR)). I asked my doc to switch it to the regular kind, not SR. It seems to have worked. Between that and the o2 i have been pain free for a week now (only had two minor k4 HA). This after 7 yrs of straight chronic CH trying alot of different meds with no relief. lata |
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Title: Re: I've tried almost every med out there Post by ltltnt on Jun 18th, 2002, 10:57am In reply to your questions I have been on Verapamil ER and Verapamil regular for about 2 years. I have tried the O2 sometimes it works and sometimes it does not. It seems to me that I get immune to the medications and the doctors just up the doses. I have now been on 20mg Morphine for about 3 months and even that has stopped working. My husband will drive 10 hours to take me to a neurologist in New Mexico who specializes in headaches and old head injuries. I am hoping that he will know what to do as the doctors here in Phoenix have all pretty much made comments to the effect that I am way beyond their scope and they do not know what else to do with me since I have been on most medications. The next route that was offered to me was a pain management clinic. ??? |
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Title: Re: I've tried almost every med out there Post by NotH20 on Jun 18th, 2002, 3:35pm You may want to check out the referred docs on the OUCH site - there may be a doc in your area or at least closer than 10 hours away. I'm sorry that you have having such a rough time right now - but remember that this MB contains so much help. Research your heart out. Good luck to you, NotH20 |
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Title: Re: I've tried almost every med out there Post by tommyD on Jun 18th, 2002, 4:52pm There may be a drug you haven't tried...I'm sure no doctor has prescribed it, but many of us here have found it to be extremely effective as a long-tern preventative. Psilocybin, found in "magic mushrooms" or "shrooms," can break a cycle with just a few doses, and they don't have to be strong doses -- a half or a quarter of the recreational dose is enough for many. This is not a hoax or a joke or a pipe dream. But neither is it to be taken lightly. There is much to know before you try it. Particularly important -- certain medications can interfere with or enhance psilocybin. And it's illegal in most countries. Here are some links to information: http://www.a-dzign.com/shrooms/ http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1013709016 There had been a collection of message board posts relating experiences with shroom therapy, but I can't seem to find the link right now. Do a search of this site for: shrooms, magic mushrooms, psilocybin, hallucinogens, or othern such terms, or any posts from Flash or Pinksharkmark, our resident gurus on this therapy. Anything you want to know, just ask. Except where to buy psilocybin mushrooms. You may want to grow your own, however (the spores are legal except in Florida and California). |
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Title: Re: I've tried almost every med out there Post by rick on Jun 18th, 2002, 5:51pm Here's another useful link relating to shroom therapy: http://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtml |
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Title: Re: I've tried almost every med out there Post by ltltnt on Jun 18th, 2002, 10:30pm Thank you all for the information I too I am sure I have not tried everything at this point I would be willing to try anything, however my husband will not support the alternative treatments mentioned above. For those who asked I am on 720mgs of Verapamil ER and 1200mgs of Lithium we stopped the Depakote because it did not help at all... Again thanks for the suggestions and the support ;D |
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Title: Re: I've tried almost every med out there Post by rick on Jun 18th, 2002, 11:51pm tnt- With all due respect, and I apologize because I do not know you, but with all you have suffered through, it's your head, and I would do anything I could to get myself better (as I did). And if someone truly understands where you are at, they would want you to get out of that pain at all costs. I myself do not drink alcohol, smoke, or even use caffeine anymore. I take care of my body. I do not use this medication, as I now call it, recreationally. My girlfriend has her concerns about the legalities of this treatment, particularly since we live together, but has seen such a change in me that she is just grateful that I am better, no matter what. Nothing worked for me either, until I gave this a chance. I also thought that it sounded pretty extreme when I first heard about it, I and didn't believe it would actually work. Until I sat down and read and read and read. In these archives, as well as in the links I found relating to the topic. All I would ask you to do is read, keep an open mind, and share the information with your husband. For yourself. I want to see others get out of the whole I was in. Life throws some weird curveballs at you sometimes, but this one has for me been a miracle so far. God Bless, -Rick |
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Title: Re: I've tried almost every med out there Post by erik on Jun 19th, 2002, 8:02am tnt I have tried the morphine pills and they did not work for me . dont be discouraged about seeing a pain management docter, a lot of people think that they only prescribe narcotics. I see a pain management doc myself nothing seemed to help for me anymore he put me on a fentanyl patch, yes it is like morphine, but a lot cleaner and with much better results and less side affects.dont think that ones you start using these kind of drugs that you are going to be a drug addict or are going to get hooked on it . remember that you will work together with a docter to control pain as well as your overall health and wellbeing. I dont take this to get high i use it to control my pain and it does not make me high. it just suppresses the beast .dont think that this will turn you into a drug dependent yunky . talk to your neuro about the fentanyl if you havent tried it before . it might bring relief without a lot of the side effect of morphine. I am praying for you to find a solution to your pain. ERIK. |
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Title: Re: I've tried almost every med out there Post by tommyD on Jun 19th, 2002, 3:24pm Just a thought, not meant as criticism of anyone: There is nothing immoral about using whatever drug works to ease the intense pain we feel. What is immoral is using irrelevant standards and mores to deny people relief from such pain. Cone to think of it, this is a criticism...but only of John Ashcroft. And a few facts to consider, again not criticism of anyone on this board... Psilocybin is NOT addictive, and as far as I know, no one has ever died from taking it... |
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Title: Re: I've tried almost every med out there Post by SteveY on Jun 19th, 2002, 4:47pm Just a note of personal experience. I was on verapamil ER, prescribed by my neuro. Went to see Manjit at Queen Square in London (Proff Goadsby's team)and he put me on standard verapamil. Result no CH unless I have alcohol. Worth mentioning to your neuro. Good Luck SteveY |
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Title: Re: I've tried almost every med out there Post by johnrudd on Jun 19th, 2002, 7:08pm This is judgemental. Before I found this site and before imitrex and before 02 and before dhe45, and before anyone other than a sufferer knew of CH I was newly married and living in Alaska, a two hours dirve to the nearest med facility when the only med I knew that worked was 150cc of Demerol. I began a cycle and asked my spouse to hide our 9mm S&W, because I'd been through this before. Unfortunately she wasn't familiar with CH or I hadn't explained the torture of an attack. As the cycle built and the HA's went to KIP 10 and we couldn't get to the med facility for a knock out of Demerol, I tore the house completely apart loking for that 9mm. Fortunately I didn't find it; but my spouse immediately understood the pain associated with CH and did everything possible to find the best treatment, regardless of the prescriber. My point is-don't let ANYONE sell you short on whatever medication might help you-regardless of the legality. It's your head and it does effect how you manage your family and life. I might not subscribe to Witch Doctors or Madam Cleo-but whatever relieves the pain. John |
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Title: Re: I've tried almost every med out there Post by eyes_afire on Jun 19th, 2002, 7:26pm >:( >:( :'( :'( Sorry, I'm a bit depressed and have to vent. It is a failure of the government when there is an inexpensive, easy-to-grow medication which is outlawed (for what? is it more dangerous than alcohol?)while pharmaceutical companies are able to feed us much more harmful medicines with worse side effects (to oneself and to other people) and charge us lots of money for it. I'm afraid this situation won't change anytime soon because the pharmaceutical companies don't want a simple fungus to cut into thier profits, therefore they will simply keep on paying off the governments which will effectively prevent any kind of research. Now, that is a moral outrage. |
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Title: Re: I've tried almost every med out there Post by rick on Jun 19th, 2002, 8:22pm tnt- We vent, sorry. I am in complete agreement with what my comrades have stated above about their feelings toward society's attitude toward hallucinogenic substances. However, I understand that social taboos have developed over time regarding hallucinogens. This doesn't by any means make you or your husband judgemental. You are simply being cautious, and I understand that completely. I was also, when I first read about this treatment. It sounds quite radical in the beginning. I myself had experimented with hallucinogens on a recreational level, but those days were years behind me. Martial arts and eating right seemed like better things to focus on in my post college years. I still believe that they are. The important difference for me now, is that using medicinal plants for health reasons is a world apart from using those same substances in a recreational setting. These plants have been used for medicinal purposes farther back into human history than we can recall, to what I understand. The past century, which gave us Timothy Leary and club culture, among other things, gave them a pretty bad rap in the eyes of many. What people have forgotten, is that when Albert Hoffman created LSD, he was developing a medication. Which he did. Hallucinogens seem to be the only thing that help a number of us, and that number seems to growing. It is nothing to jump into, it requires prepartion and research. But it has been the only thing that has actually had any real success for me so far in fighting this thing. Good luck to you, in whatever path you chose. But for your own sake, at least give yourself a chance and read into the subject. For your own sake, and your family's. You have nothing to lose but pain. Peace, -Rick |
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Title: Re: I've tried almost every med out there Post by kristi on Jun 20th, 2002, 9:48pm ltltnt: Sorry to hear you are having such a hard time - hope you find some relief very soon. Hate to be redundant, but it is so hard to stay quiet about the shrooms when they have been a miracle for so many. My hubby dosed mid-cycle and has completely aborted the cycle. The mentors of this treatment have found that dosing every 6 months or so has prevented them from having any cycles since. We intend that Scott will be next in line to prove that works!! We have worried over our families, our friends, our jobs, our child, the law, and everything else you can imagine. We decided, together, to hell with all of that and to hell with what everyone thinks - some things are more important - like him standing up for his right to enjoy his life and live it pain free. And because we want to help others, we have put his job, in particular, at risk, by posting everything, often, on this message board. ltltnt - you have to live to make yourself happy, whatever that is. And we will all be here to help you and offer support, whatever course of treatment you decide to follow. Together we are strong, remember? I only ask that you make that decision in your own best interests - remember that it is you who does the suffering. PFDAN! K. |
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Title: Re: I've tried almost every med out there Post by williamsmh on Jun 21st, 2002, 3:47pm I'm so sorry about your pain!! I agree with everyones comments about the outrage of not letting us have meds that work! (and at low cost). I am still debating the shroom thing.... I am a single parent with full custody of my kids... I'm afraid to do anything that will jeopardise that... I'm still looking for other treatments... but I'll tell you if the latest batch of drugs don't work - shrooms may be next! Mark |
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Title: Re: I've tried almost every med out there Post by Gddyupn on Jun 24th, 2002, 3:11pm I agree totally about not letting us have stuff that would work. Most of the stuff I take has terrible side effects, but no one seems to care. I have in my possession Stadol AND Demerol, both of which ARE addictive to varying degrees. But they're perfectly legal. And truthfully, insofar as stopping the pain, they don't really help. They just knock you out so much you wouldn't know how to spell pain, or your own name for that matter, if you were standing on Seasame Street. |
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Title: Re: I've tried almost every med out there Post by kristi on Jun 24th, 2002, 8:23pm Well said Gddyupn! PFDAN!! |
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Title: Re: I've tried almost every med out there Post by ltltnt on Jun 25th, 2002, 8:50am Thanks everyone who offered their advice and suggestions this reply however is to GGFNY sorry if I misspelled. Yes I too have the same drugs in my posession along with the morphine and I have to say you are 100% correct in your assesment of them deadning your perception of the pain but not the pain itself, I find now too with the Stadol NS it only lasts about 1 1/2 hours of my three hour headache. I am due to make a 10 hour drive back to NM with MRI films and EEG results so another neurologist who specializes in headaches but takes extra interest in CH can evaluate me. One week and counting.... as the Beast has decided to dance with a vengence. I wish all of you the best and PPP Sheryl |
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