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Topic: Deseril/Methysergide Loopyness (Read 1313 times) |
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ouchykitty
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Deseril/Methysergide Loopyness
« on: Jan 7th, 2003, 7:05pm » |
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Hi!
I'm taking Deseril, which is Methysergide....and I'm having hullucinations! If it's not the CH's that are making me take sick days, its the medication I'm using for it! So far it's seems to have sucessfuly stopped me getting any more attacks, but I'm sure everyone thinks I'm taking LSD on the sly.....
Damn the ergots!
Anyone else had a similer experience?
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pinksharkmark
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Re: Deseril/Methysergide Loopyness
« Reply #2 on: Jan 8th, 2003, 12:46am » |
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Yep. Lots of people report that from methysergide. Sandoz originally developed it as a "non-hallucinogenic" form of LSD, trying to get the effectiveness of LSD in treating migraines without any of the "trippy" side-effects.
They partially succeeded in each category: methysergide is less hallucinogenic, but it is also less effective. However, as you have discovered, it is still far from being NON-hallucinogenic. I tried it a few years back and had to abandon it -- the stuff just made me STOOPID. In my case it also had zero effect on my cluster headaches.
On the other hand, there have been several reports on this message board from people who have had it work wonders. It seems like you are one more. Good for you! My neurologist says that after some weeks of daily dosing, the "trippy" side effects will dwindle and eventually vanish.
Because of some potential very scary side effects after longterm use, methysergide must not be used for more than six months at a stretch.
pinky
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Bob P
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Re: Deseril/Methysergide Loopyness
« Reply #3 on: Jan 8th, 2003, 8:55am » |
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I took it for one day.
Made me feel like I was on the down elevator all day so I quit taking it.
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ouchykitty
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Re: Deseril/Methysergide Loopyness
« Reply #4 on: Jan 8th, 2003, 6:46pm » |
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Oh thanks guys! So I feel a little more normal now, knowing that other people have had the same reaction to it. I rang my Doc last night and she suggested we step the dose down from 3 a day to 1 until I stop hearing the trains in my head...hee...
Pinky- Thanks for letting me know some of the background on the development of the drug. It's interesting that LSD is effective in stopping migraines. Maybe I'll get some for my mum...hee....
Cheers,
Kitty Not So Ouchy
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ComputerGeek
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Re: Deseril/Methysergide Loopyness
« Reply #5 on: Jan 8th, 2003, 6:50pm » |
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I have been taking Sansert (Deseril) for 3 years and no hullucinations yet. Wasn't even warned that it was a possibility. The reason I am posting is to save someone else in my postion some time. I just found out 10 days ago that Novartis has stopped production of Sansert in the U.S. (Thank-you Novartis for the oh-so generous warning. NOT!) When I found out I went into melt down because Sansert has allowed me to lead a fairly normal life, CH free. I pulled my self together and started making phone calls and searching the net for alternatives. I found a reference on this board to Deseril (thank-you) and started looking for it in the States. No one had heard of it, not my doctor, not my pharmacist. Apperantly if its not in the doctor's pdr nor in the pharmacists little black book it doesn't exist. As I have learned in the last 10 years, don't accept what the medical profession says as final. I called Novartis in the US to find out about Deseril but they were of zero help. I then called Novartis in the UK and they told me that the manufacturing rights for Deseril was given to Alliance Pharmaceutics in the UK. I called Alliance and they said that they have no plans of stopping production of Deseril. YES! I then went about finding a supplier and low and behold I found mastersmarketing.com on the net. Just fill out the form, provide a supervising doctor's name and address, provide a payment method and in a few weeks you will have Deseril at your door. Now I am in the middle of trying to get my insurance to pay for medication from a foreign source. This battle should really give me a headache. 
ComputerGeek
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pinksharkmark
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Re: Deseril/Methysergide Loopyness
« Reply #6 on: Jan 15th, 2003, 2:19am » |
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Quote:| I have been taking Sansert (Deseril) for 3 years and no hullucinations yet. Wasn't even warned that it was a possibility. |
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Were you warned of the other side effects of continuous daily use for more than six months? Methysergide is supposed to be prescribed for no more than six months of daily use at a time, with a two or three month break in between the continuous stretches. Failure to take these periodic breaks can result in fibrosis of the kidneys and (I believe, but not sure) the lungs as well. We have one regular contributor in the General Posts forum -- Sailpappy -- who has had firsthand experience with this side-effect.
If you are only taking it in cycle for a few months at a time, disregard the above. It's just that it is unclear to me whether you were taking it every day for the last 3 years or just periodically.
pinky
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Brew
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Re: Deseril/Methysergide Loopyness
« Reply #7 on: Jan 15th, 2003, 2:44pm » |
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pinksharkmark wrote: ". . .fibrosis of the kidneys and (I believe, but not sure) the lungs as well."
I was also told that fibrosis of the heart valves can occur without the drug holiday. Yuk. 
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ComputerGeek
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Re: Deseril/Methysergide Loopyness
« Reply #8 on: Jan 22nd, 2003, 7:41pm » |
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Hi Pinky,
Thank-you for adding the warning about sansert. I should of said that I have been taking it on and off for 3 years. I am very aware of the side effects of continuous use. I had to lay off of sansert for 3 weeks in October which was really, REALLY bad. I had one headache the first day and then 4 to 6 each day after for 3 weeks. I am now back on it and I get blood drawn every three months to check kidney functions. After reading this thread and some others I think I am going to get a more extensive test done ( my nuro mentioned it a few weeks ago). I have also been trying to take it less and less. Right now I can go about three days CH free before I get the "one hour afterI go to bed" CH.
Pat
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tbp38
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Re: Deseril/Methysergide Loopyness
« Reply #9 on: Jan 23rd, 2003, 11:29pm » |
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 i have been taking sansert for over 15 years without any side effects, have been checked for fibosis and am ok. just found out today that it is no longer avaliable!! it is the only thing that has ever worked for me, i have tried almost everything else over the yearsand sansert is the best, i suffer from chronic clusters, meaning that i get them EVERY night of my life. the sansert lessins the severity and frequency of the headaches. HOW CAN THE MANUFACTORER JUST STOP MAKING THEM? WHAT ABOUT ME, DOES ANYONE UNDERSTAND WHAT AN IMPACT THIS WILL HAVE ON MY LIFE?? DO I HAVE TO WALK AROUND WITH A CYLINDER OF OXYGEN STRAPPED TO MY BACK FOR THE REST OF MY LIFE OR WHAT? I KNOW THAT SANSERT IS NOT VERY HELPFUL TO MOST OF YOU BUT IT MEANS SO MUCH TO ME TO HAVE IT, AS IT WORKS FOR ME. I'M SO MAD THAT I JUST DON'T KNOW WHAT THE HELL TO DO, MY WHOLE LIFE AND EVERYDAY ACCTIVITIES ARE NOW UNCERTAIN. sorry for shouting, just had to vent to someone who understood, thanks
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ComputerGeek
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Re: Deseril/Methysergide Loopyness
« Reply #10 on: Jan 24th, 2003, 3:01pm » |
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Hi tbp38,
Sansert is what I take that works for my CHs. When I found out that Sansert was discontinued in the US I did a lot research and made a lot of phones calls. Sansert (Methysergide maleate) is sold under the trade name "Deseril" in the UK. Do a web search for Deseril and you will probably finda place to buy it from. If you don't, email me and I will point you in the right direction ( I beleive my email is public here). I also know that as of 2 weeks ago Sansert was still availble from Canadian pharmacies. When I get a chance I am going to call Novartis( who makes sansert) in Canada and see if they are also discontiuing sansert like the US branch of Novartis is.
Pat
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ComputerGeek
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Re: Deseril/Methysergide Loopyness
« Reply #11 on: Jan 24th, 2003, 3:12pm » |
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Me again,
I must be losing my mind. I already posted info about my dealings with Sansert in fact I was royaly flamed in the General posts when I re-posted my findings there. Please disregard my last post as it is redundant Further, I apoligize to all and their families, as well as friends and future friends for any harm or inconvienence my postings may have caused
Pat
P.S. jonny-if you read this, I really am not pushing anything, just knowledge...and of course you are the king (though Elvis might not agree)
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