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Topic: Methysergide/Sansert - Some Opinions? (Read 391 times) |
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clarence
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Methysergide/Sansert - Some Opinions?
« on: Sep 1st, 2004, 5:11am » |
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I have read some of the posts on the site using the search feature regarding methysergide, and it seems that opinions are mixed. Some have had really bad side effects, some have had good success. The doc wants me to start taking it, beginning with 1mg/day working up to 6-9 mg/day. I am a bit nervous about the side effects though.
I told the doc I would rather try Verapamil again, as I don't think that my dose previously was high enough (I think it was around 240mg/day or something). Problem is that the Neuro recommended the methysergide, and she would rather go with what he recommended. She did, however, say she would try to get me back in to the neuro before my next scheduled appointment at the end of October. (I do really like my GP).
So, for the question: What are your experiecnes with the methysergide? I lean toward wanting to try other tings first, as the side effects look discouraging. I have tried in the past gabapentin (Neurontin), beta blockers, and the Verapamil. Gabapentin worked well for me, but neuro said I couldn't take it constantly. It was hard when I accidently missed a dose, and after about 2 years on it I had a difficult time coming off of it.
Your experiences and advice I appreciate very much.
Thanks,
Casey
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Bob_Johnson
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Re: Methysergide/Sansert - Some Opinions?
« Reply #1 on: Sep 1st, 2004, 8:37am » |
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The dose of Verap. was about 1/3 of what many folks require to be effective. Sounds like your doctors are not well versed in treating cluster.
Educate yourself first, then take some of the material you find to your next appointment. If possible, use medical sources of information for they carry greater weight with M.D.s. Suggest you look at two sites and buy one book:
WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
--- www.headachedrugs.com
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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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Methysergide does not have a very good track record with cluster although some folks like it. Like many of the meds we use, inconsistent response is not uncommon and so we often have to just try and see. Side effects are generally well known and so are the warning signs. Knowing the potentials and being watchful is something you want to do with any med--but I'd being looking for a med which has a record of being more effective before being too concerned about side effects.
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Bob Johnson
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Re: Methysergide/Sansert - Some Opinions?
« Reply #2 on: Sep 1st, 2004, 8:45am » |
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I've used methysergide before. Once just not too long ago. I've never experienced any bad effects from it. Unfortunately, it didn't help with the headaches either.
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Lizzie2
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Re: Methysergide/Sansert - Some Opinions?
« Reply #3 on: Sep 1st, 2004, 9:40am » |
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I took methergine for a year (with a break for a month at the 6 month point). Methergine is related to methysergide. A couple times, I did get severe cramping in my shins, but this was usually relieved by lidoderm patches and occasionally taking a pain reliever. That only happened a couple times, though. Other than that, I didn't have any side effects from it that I recall! Can't say it helped me, unfortunately.. What I usually tell people regarding side effects is just be aware. Not every person gets every side effect. Just because it is a listed side effect doesn't mean you are going to get it. You can always stop the med if the side effects get too extreme. I always feel like it is worth it to give the med a shot at least. Can always come off it if it is ineffective or the side effects get bad. With methysergide, you do have to take a break from it after 6 months to lessen the risk of fibrosis. I also took verapamil at the same time as methergine, so if your doc decided to try the verap...you could always try them together if needed.
Good luck!
Lizzie 
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k9lover4
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Re: Methysergide/Sansert - Some Opinions?
« Reply #4 on: Sep 17th, 2004, 7:54pm » |
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Years ago I tried sansert and had a horrible reaction to it immediatly. My hands and feet went numb. Got right off it
I have had success with methergine. The only problem was when I increased to 3 pills 4x a day 24 mg a day. I developed chest pain and tightness and had to lower the dose.
Good luck
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Racer1_NC
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Re: Methysergide/Sansert - Some Opinions?
« Reply #5 on: Sep 18th, 2004, 12:49am » |
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I took Sansert for over 3 months...I started when the verap would no longer control the CH. I ramped up to 6mg a day. It worked well. I started having side effects at the end of the second month. I ramped down....slowly. Currently I am 99% PF and taking verap again. Did it break a cycle? I dunno.....but it dang sure stopped CH dead in it's tracks.
Your mileage may vary.
Bill
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pubgirl
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Re: Methysergide/Sansert - Some Opinions?
« Reply #6 on: Sep 18th, 2004, 3:21am » |
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Casey
Methysergide is usually prescribed as a second/ third choice after Verapimil as it has to be very closely monitored and also the results are more patchy.
Your Verapimil dosage was the starting dose, which only works for a small proportion of CH sufferers. If you are based in the UK, we have found that most GP's get not only the dosage wrong, but also the frequency of taking it and the type of Verapimil wrong. What this adds up to is a lot of people saying Verap didn't work for them, when it may have done if it was dosed right.
Unfortunately the BNF doesn't specify the detail of the dosing, but I have a regime sheet from the London Institute of Neurology I can let you have if you wnat it which tends to be taken notoce of by UK GP's more than other Internet info.
Let me know if you want it (message me your email, don't put it here)
Wendy
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Brew
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Re: Methysergide/Sansert - Some Opinions?
« Reply #7 on: Sep 19th, 2004, 8:48pm » |
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I had great results with Sansert. However, since you can't get it in the US any more, I've settled into a Verapamil/Lithium cocktail that has kept the beast away for 11 months so far.
It's the first couple of doses of Sansert that will freak you out a little. Then you become accustomed to it and don't even notice it after awhile. The physical side effects prevent many from using it, but if they are not a concern for you (and you have a good Canadian pharmaceutical connection), I say go for it.
Bill
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