This site is such a wealth of information, so I thought instead of reading I’d just reach out! I get really depressed talking about this, so I’ll keep it brief. I’ve had non-stop MAV for 5+ years now (going into my 6th year). My biggest complaints are severe vertigo, can only lie on one side of my body, and head pressure along with visual disturbances and sensitivity to light and sound. I have seen 20+ doctors and have had tons of tests done (MRIs, CT, spinal tap, on and on); everything says I’m healthy.
Finally I’ve accepted that this must just simply be MAV, not something rare and weird.
I am trying the different drugs for controlling this, in hope that I get some sort of life back because I want to die every day right now.
I am trying amitriptyline. I am titrating up, 1/4 of a 25 mg pill for 8 days at a time. I am taking 3/4 of a 25 mg pill, and I am to the point where I can’t walk more then a few feet without my symptoms increasing 10 fold. This will make about 3 weeks I’ve been taking it. It really just seems to be making it worse.
THE QUESTION IS: how long should I realistically give this, guys? I cannot keep missing work, and I can’t be trapped in a life where I have trouble walking more then I already do, especially in a job where I have to walk some of the day. How many weeks before I can give up on it? I tried Verapamil and it made me insanely sick after 1 pill, so I really wanted to give this a good try, but it is making me miserable after being able to tolerate it at the smallest dose (1/4 of a pill).
All feedback is appreciated… thanks.
Sorry to hear you have been suffering from MAV for so long.
I don’t really know how to answer your question about how long to try a medication for. I think there’s a difference between a minor side effect (that will likely settle down within a few days or weeks) and something that’s actually making you feel a lot worse. I used pizotifen and propranolol very successfully, with hardly any side effects. But I must admit I couldn’t tolerate ami at all, which is quite unusual for me, as usually I don’t suffer much side-effect-wise from drugs. I actually found it seriously increased my headaches. At 10mg it was just about tolerable, but at 20 mg it was unbearable and I just couldn’t cope any more. I think I lasted just over 3 weeks (the first two at the lower dose).
On the other hand, you might hear from others who have sat things out for longer and had an improvement in the long run. (Can anyone chip in here?)
Although you have only tried two things, so there are plenty of more options for you, so maybe you shouldn’t have to keep suffering, as you might find something else that suits you better.
Just curious, what else have you tried other than the verapamil?
You sound a lot like me, it’s only been a year of misery so far for me, but like you can only sleep on one side, it’s awful!
When you say vertigo, do you spin or just off balance type of feeling?
I believe 10mg of Ami is the lowest you can get, and therefore, you can take half of that, which is where I started with AMi. It could be you just have to start lower, and go slower. Not unusual with migraine. I do believe, personally, that the right med doesn’t cause a severe setback. My experience has been when something works, it’s not too hard to deal with…maybe a little increase in dizziness, but for example, Effexor made me worse both with anxiety and dizziness…but Cymbalta helped despite having a “little” extra dizziness, so I stuck with it.
Hope that wasn’t confusing…basically I think you may need to go slower and if things get worse and worse, it could just be the wrong fit for you.
Great advice already,maybe it isn’t the drug for you.It does take some time for some things to work.You have to keep in mind how long you have been feeling lousy,I don’t think there are too many overnight cures out there.
My neuro said most people don’t take a high enough dose to see results.But after reading what others here experienced I too was apprehensive about taking it so I started slow.Felt lousy and said what the hell and took the full 50 mg dose after a few days.I am a big man,6’2’’ 200. so that needs to be taken into account I guess.
He told me when you get the dry mouth side effect you are taking enough! (Which went away for me)
It has worked really well for me,when I went off it my symptoms started to come back so I went back on it and am now only on 25 mg.I hope to stop that one day soon.
Also I am taking Verpamil as well.But it alone did not help me completely.
I wish you luck with this.
Thank you ALL for responding… I knew this was going to be a really helpful place. I am just getting sicker each day I’m on this, and I’ve been taking it about 3 weeks, so I’m unfortunately going to have to give this one the boot. Going to give my body and mind a few weeks to recover before I try again. I like to only try one thing at a time, since I’m hyper sensitive to medications (9 out of 10 will make my condition worse).
Again, Thank you all. Will come back to this forum with more questions I’m sure next round. Any suggestions for next med to try? I’ve already tried:
Zyrtec, Allegra, Claratin
Can’t tolerate anything but the valium which I only take as needed as the body will become tolerant uber quickly of it, and it makes my condition worse if I take it for a few days in a row. I seem to get withdrawl with anything I take for more then 1 day, even asprin I get a rebound effect with. I’m SO SCARED of medications it isn’t funny.
And to the person whoasked how my vertigo was: it reaally varies, there is spinning, feeling of me moving, feeling of other objects moving, it changes alot.
I didn’t see a beta-blocker on your list - have you tried one of them?
Not yet. My doctor seemed hesitant to try them, but he basically just lets me find things to try then prescribes them.
Ive been on Propranolol for about one wk…not long enough to really tell if its working. But i have NOT had any major migraines since then…also NO major dizzy spells,although i do get that Spacey feeling when i put my head in an akward position.
Im only on 20mg a day b/c my BP is usually on the lower side. good luck to you…i know how awful it is trying new meds.
— Begin quote from “Danielle H”
I seem to get withdrawl with anything I take for more then 1 day, even asprin I get a rebound effect with.
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You certainly are very sensitive!