Has any medication worked for you all

It seems like every time someone try’s something new they have such bad side effects sometimes it is worse than the disease itself.

I know we have probably covered this before but what medication has really worked for you all…

And how long did it take …and what ere the side effects along the way and how long til they went away.

I know we are all different but seems like some of the medications just cause such side effects, really wonder if they are worth the effort sometimes …maybe someday they will find something that will make us all well without all the side effects along the way…r

Timeless - great question. I always wonder that too. I really hope that there are people out there doing great on meds, but they are not posting. So far, I have only been able to tolerate Verapamil. I got all the way up to 480mg. I am very sensitive to meds, and my problems with this med is more aware of heart rate (not terrible) and very constipated, but finally I found miralax that is helping. I am able to tolerate this med well, but unfortunately it hasn’t helped me at all.

Hi Timeless

Here is my ancedotal evidence of people who have founds medications that have helped:

  • Neurontin worked quite well for me, but unfortunately I had to come off it because I started getting really depressed and angry which didn’t make sense because I was finally getting better! Once I came off it, the depression and anger went away but the MAV came back unfortunately.

  • Also, Propranolol eased my nausea quite considerably but didn’t help any other the other symptoms (how strange). I do know someone else who got significantly better and back to work on Propranolol.

  • I also know of people who have got better on:

  • an anti convulsant called Sodium Valproate/Depacon (its in the same family of drugs as Depakote).
  • Nortriptyline (it was the daughter of a member of this board, Kira)
  • Topamax

Sorry its mainly ‘friend of friend’ information, but hope it helps a little.

Becky

I have done well on Zoloft 100 mg’s combo with Verapamil 240 mg’s and .5 of Klonopin… Zoloft was rough as far as side effects and anxiety the first month or so. I am no way cured… There is no cure but the medication does help me manage the condition. I am like 90% to 95% most days. I still get triggered by weather changes… It is just a matter of triasl and error on meds we can handle to try and manage the condition until new methods come out…

— Begin quote from “MAVLisa”

Timeless - great question. I always wonder that too. I really hope that there are people out there doing great on meds, but they are not posting.

— End quote

There are definitely lots of such people, on many different forums.
I know of one woman who got almost cured (to the point of not really caring about the disease anymore) by verapamil in like 2 weeks. Her next post was three months or so later, saying “I’m still doing great”, and she hasn’t posted since… And that’s not exactly the only such story.
Heck, most people on forums like this one are the worst of the worst - the ones that have it easy get a med or two from their doc, and get back to life before they start thinking about online help.

— Begin quote from “howie1”

I have done well on Zoloft 100 mg’s combo with Verapamil 240 mg’s and .5 of Klonopin… Zoloft was rough as far as side effects and anxiety the first month or so. I am no way cured… There is no cure but the medication does help me manage the condition. I am like 90% to 95% most days. I still get triggered by weather changes… It is just a matter of triasl and error on meds we can handle to try and manage the condition until new methods come out…

— End quote

AMEN Howie! I am doing 90%-95% on Topamax alone at 50mg. I get triggered only by lack of sleep and stress. If I avoid those, and have a good time lol, I’m good to go. I’ve even started adding some foods (not garbage foods, but foods that just weren’t permitted on the MAV diet) back to my diet and they don’t trigger me. That may be a lesson in individuality. I wouldn’t recommend experimenting like that if you don’t have anything to cover you (a preventative that is working for you) but if you have a med that is keeping you reasonably covered from MAV, then I think it’s worth a bit of experimenting to figure out your own personal triggers as your preventative will allow you to bounce back a bit better. The condition does improve.

Rich

Howie and Rich and others, it is great to hear those stories. I know you have said the same thing a bunch of times but it really is comforting to know that there are several people on here (and probably in general) that have found the right combo. I think the key is (at least for me) to stick with one thing long enough. I bailed on Effexor after only 8 weeks - I was not better and it was making me very anxious and dizzier but a different dizzy. I felt like I gave it a good shot at the time but now that I am struggling on Nortriptyline, I am second guessing myself! Ben

Great to hear Rich…you were pretty bad…

ben yes u need to try your hardest to give these Meds a chance. I learned the hard way… I have this 6 years and the first 3 were med to med

Thanks Howie. yeah, it was HORRIBLE. I realize that I don’t have the amount of time that some have into this horrid condition, and only had my crash last January, but it was the crash from hell, and gave me no less than 15-20 24/7 symptoms that made it virtually IMPOSSIBLE to funtion. Some of the symptoms I experienced didn’t even make any sense for migraine, and had me fishing for other conditions. But the topamax killed them, making me now realize that MAV can cause a HUGE array of symptoms, even symptoms you can’t imagine in your worst nightmares. The valsalva induced attacks I used to have were the worst. If I had one, it meant laying down and not moving the rest of the day, as I was physically unable to stand from the extreme dizziness (on top of dizziness) that it caused. I was afraid to go far from my house because of them. I even had one while driving, and barely made it back to my house to drop to the floor. Couldn’t imagine being back there again. For those who haven’t found their med yet, give it time. It will happen. If I could come back from where I was, than anyone can. I have to believe that, because I was at the forefront of hell.

Rich

Rich - that is wonderful news. did the topamax cure you gradually or was it sudden. that is encouraging.

Timeless - I was pretty much hovering around in the mid to high 90% range for years on Cipramil although I never solved the headaches much on it. If I stayed away from triggers, I was pretty good. But I got so tired of the side effects (myalgia, libido issues and feeling robotic) that I went off of it last May and persued some “alternative” stuff like St John’s Wort, 5HTP, the Migraine Program etc. None of them worked very well of course or were weak at best.

In hindsight, I was extremely lucky to have stumbled onto Cipramil as the second med I tried for this. Nothing else has worked nearly as well. I could have been trashed for years and never graduated if it wasn’t for that drug.

Best … Scott 8)