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Title: Imitrex & Verapamil - Working 4 me... Post by fjleonard on Nov 29th, 2003, 9:22pm Looking for feedback - pos or neg.... History: CH x 21 years. 3yrs chronic back in 86-89. At the time was on Prednisone (2 yrs up to 80mg!!) and Lithium. (HATED it...). Tried all the usual stuff...cafergot, ergot, and many others I cannot even remember. Finally decided the meds were even worse than the pain as the pred had wasted my joints and immune system so I stopped all meds, said goodbye to my doctor and immediately went into remission!!!!...thought (wishful thinking!!) maybe they were leavin for good. For the last ten plus years, I have settled into a (normal??) cycle of PF for 6 to 9 months and then a cycle on one side for either 3 or 6 weeks, then the other side for 3 or 6 wks, then back to normal life. The pain cycles peak during the middle of each side where I can get 4 to 6 a night at Kip 7-9 with a few 10s at the very peak. I found my way to this site and have lurked for the last couple of years (THANK YOU ALL!!!). I finally heard enough to give another specialist a try again. I posted a question a few weeks ago regarding recent updates on psilcybin treatment, and have been very encouraged by much of what I have read in response. I posted that question (as you might guess) shortly after the start of my current CH cycle. About that same time, since I had visited with a specialist over the summer while pain free and we had agreed on a course of action, (and since shrooms will take a while for me to aquire!!) I went ahead with our prescribed plan of attack. About 4-5 days into this session I began taking 250mg of Verapamil SR daily and got my first Imitrex injectors ($$$WOW$$$). I used the imitrex the first time after an evening dinner with a glass of wine (I know better...). The imitrex was completely effective in 10 minutes....WOW!!! I then got another CH about 4 hours later and I toughed it out because I was trying to figure out how I was going to make 6 lousy shots last.....Sooo....for about 4 days I did this.....1 shot for the first CH of the evening and then toughed out up to 3 or 4 more through the night. Finally....I started doubling my verapamil (to 480mg per day) and started taking 1/2 shots of the imitrex......INSTANT IMPROVEMENT!!!!!! since that point I have not had any more after taking a shot (1/2 shot) of imitrex for at least a day or more. In fact now, with each CH and subsequent 1/2 shot (3 mg) of imitrex I go longer and longer before the next CH. I am now sitting at 4 1/2 days since getting one (and taking the subsequent 3mg imitrex shot.)!!! WOW!!!! So now..questions???? 1) Is this unusual, or have others had similar (spectacular) success with Verapamil and Imitrex? 2) any clues on whether the CH reduction (virtual elimination) can be attributed to the verapamil....or the 1/2 shots of imitrex??? I ask about the imitrex because if I understand much of what I have read, imitrex is actually very close to the same molecular structure as Psilocybin....so if Psilcybin can end a cycle, why not imitrex (just asking???) 3) Have others had similar success, only to get slammed by the beast later.....in other words, is this just a tease???? (you all understand the fear!!!) 4) I have always found that I could manipulate "when" i get my CHs with coffee, although if I overdo it, I can definitely make things worse. Over the years this has allowed me to "push" them off until nighttime so I could at least "try" to work during the day....has anybody else found this to work for them as well? I don't think it is "just" the caffeine, as other caffinated drinks, pills, etc have never seemed to work as well.... 5) Are there any serious side effects that are not generally advertised about either Verapamil or Imitrex? For example, if you read the "Pill sites" about Prednisone, they typically don't tell you a thing about destroying your joint cartilage or immune system..... Sorry for the LOOOONNNGG post......just looking for feedback.....and after 20+ years, wondering in complete amazement at my current success!!! Regards...and wishing you all PF success!!! JL |
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Title: Re: Imitrex & Verapamil - Working 4 me... Post by BlueMeanie on Nov 30th, 2003, 1:00am Don't know about the Verapamil but I'm sure someone will answer that question for you. Imitrex does NOT break a cycle. I think you may have just got lucky. Coffee does seem to delay my CH. (NOT VERY LONG THOUGH). I can get through work most of the time. Fortunately for me, may CH come at 10 AM & 2:30 AM about everyday. I work the afternoon shift so I have a pretty good workday. (Just Shadows). Imitrex gets the old heart pumping for me. I get a little worried, but the CH goes away. I try not to take more than 1/2 shot a day. I read on the site that Melatonin helps some Clusterheads get through the night with sleep. Just got some today to see if it works. Also Amerge is kinda new I think. I've got some ordered for Monday. Some people also said it works for them. I guess yu just gotta keep mixin-it-up. Sending vibes for PFDAN. |
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Title: Re: Imitrex & Verapamil - Working 4 me... Post by 5-string on Nov 30th, 2003, 2:43am Hey there JL, This was my first year with any kind of proper treatment for clusters. Once I was"officially"diagnosed with these things by a neuro. I was put on Verapimil,Imetrex and oxygen. Man, I would never consider going through this without those three ever again. Imitrex/oxygen stopped the attack(most of the time) Verapamil did pulled me out of cycle. I made the mistake of stopping once I was out and I got slammed with no warning. I went back on Verapamil and now I'm fine again,with the exception of these damn shadows. People here have different experiences and this is just one of them. Take it easy, ...Mark. |
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Title: Re: Imitrex & Verapamil - Working 4 me... Post by ClusterChuck on Nov 30th, 2003, 3:01am Verapamil is a miracal drug for many of us. I don't want to bumm you out, but it USED to work for me too, but doesn't anymore. But, I did go many years PF on verapamil. I hope it continues to work for you. You may want to try O2 (oxygen) as a preventative instead of the Imitrex. O2 does not have the side effects of imitrex, and you can take it several times a day. In the past few months, I have had over 12 CH hits a day, and I sucked on O2 for everyone of them. But, in order for it to work, you MUST take it properly. Read the "OXYGEN INFO" button on the left, and follow those instructions. The nose canula (that most doctors try to give you) will not work. Also, you have to have a regulator on the tank that will deliver up to 15 LPM (liters per minute). You may be able to set it at less, but you need the ability of the higher setting. I usually have success with 10 LPM. Most of us use it between 8 to 15 LPM. Good luck, and I hope the verapamil has broken the cycle for you! Chuck |
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