Hi All-
I have been off and on this site for about a month. Have had VM for 4.5 years now as a young female, have tried various medicines, physical therapy, massage, the works. Been to so many doctors, gotten so many MRIs, you all know the drill.
Anyway, I didn’t have anxiety until I started getting dizziness (the off balance kind), which is my main issue with VM. But now my #1 anxiety producer is side effects from medicines. I was put on Xanax for at least 3 years, only 1 mg a day, but didn’t know how addictive it was, had a doctor who didn’t follow me on it, and went through the most horrible 25% taper from it back in October (even though it was helping my dizziness I was starting to get worse on it after 3 years and was advised by Johns Hopkins to get off of it). A new doctor, psychiatrist this time, has gotten me completely off Xanax this time and has me on 25 mg a day of Librium, plus 100 mg of Gabapentin at night. Not my drugs of choice, as neither are doing a thing to help the dizziness (as far as I know!) Back in October I saw a doctor at Johns Hopkins who recommended I start Amitriptyline. He didn’t know how sensitive I am to medicines, or the reason why I stopped taking Nortriptyline in the past (I couldn’t deal with the side effects, I forget what effects I had as it’s been at least 3-4 years). After my week long “benzo withdraw flu” I decided I didn’t want to take another medicine unless necessary for survival. But my migraines keep getting more worse and more frequent, or I get “better” for a few weeks (still having to hold on to things to walk) and then they come back even more crippling.
For those who have tried Amitriptyline, what were your first few weeks like? I’ve heard the first few weeks can be rough and know it can take at least a month to notice positive results. I am supposed to start on 2.5 mg for 4 days then try 5 mg for as long as I am comfortable. My doctor is being very nice and knows I am worried about side effects, as I know this is a VERY low dose. I am supposed to start it, but honestly I am TERRIFIED to wake up in the morning after taking it for the first time after everything I’ve read/heard about it.
Any stories, positive or negative, would be greatly appreciated.
Thank you all for reading this!
Hi Frank,
Well some people say “dizziness” and they mean that they feel lightheaded. I believe most of us on this forum don’t feel that, we feel more "off balance/unsteady and/or vertigo.
Ok, so you mean this feeling like being slightly drunk ? Not walking properly ? Or I like to describe it as like walking in the aisle of a moving airplane, train or coach that is experiencing some turbulance (or road bumps for that matter).
Well I don’t drink so I’ve never been drunk so I can’t say if that’s what it’s like. But, yes, not walking properly, feeling like walking in an airplane, feeling like you’re going to fall over (knock on wood I haven’t yet).
hi guys, Gabapentin is helpful with no side effects that I can discern except for sleepiness (I sleep so well at night, which is nice). During the day, I’m a little bit tired but not bad - I can work better than when I’m dizzy and sensitive to the computer screen and lights. So far I’m only on 100mg 3x a day for a week and will go higher probably to 200mg 3x a day to see if that helps more. I can’t say the dizziness is totally gone but I feel a lot less head pressure and less ear crackling and much more stillness (the best I’ve felt in a long time) - and less sensitive to lights definitely. By the end of the workday yesterday I was a bit wobbly because I had tons of fluorescent light exposure, but I was doing well and could drive at night no problem really (usually car lights really bother me at night). Nortriptyline did cause more side effects for me than Gabapentin, but it was effective - perhaps nort’s cousin, amtriptyline will work for you, Frank - I mentioned to Jess that both drugs are related to one another. I much prefer my mental state on Gabapentin over topamax. Hope you guys have a good day, Liv
Well, amitryptiline is an anti depressant after all, so it certainly has effects on the mental state and I’m quite scared about that.
You know how it is - the doctors keep on telling you that it’s all just psychosomatic and try to shove those pills down your throat. I once gave in to that and took a benzo before I went to bed (bromazepam). The next day my vertigo was worse than ever. I was wobbling around and had to hold on to walls or anything else I could grab. However I perfectly didn’t care. You could have done literally anything to me and I would have just smiled it off, I was like a ghost. Whoa … no thanks, never again.
So, I would love to hear first hand experience what the side effects on the mental state are.
I would be willing to take the risk of possible side effects such as diarrhea, sleepiness, skin rashes or things like that, but any kind of mental state side effects really scare me.
So, Gabapentin helps against vertigo, but doesn’t have any mental side effects ?
Hi Liv,
Glad the Gabapentin is helping you, that’s encouraging. You’re ahead of me now, I’ve only been taking 100 mg once a day since the end of October. But I think I will be increasing it soon, very slowly. I don’t want to get on too high of a dose, I heard it can be hard to get off of and I’m done with that.
Just sent Jess a message - definitely try to take Gabapentin at 3 daily doses, I think. I’m staying at 300mg (100mg 3x a day spaced out in 7-8 hr intervals) for another week before seeing if I want to go up to 200mg 3x a day. My neurologist told me to go slow but let him know if a level really helped. Gabapentin apparently can be tolerated at very high doses but I want to stay as low as possible and get enough help from it.
The half life of Gaba (unlike amitriptyline and nortriptyline) is just too short for you to get it stable in your system at 1 nightly dose at 100mg. You need to keep it a constant level in your bloodstream I think to have it dampen the nerve-firing that is the central reason for this bouncing sensation with MAV (I think!) - it’s just that the nerves are too sensitive or something (permanent migraine state)
Frank, regarding your question about mental state effects - yeah that was a huge reason I could not do some drugs (Topamax), but nortriptyline you should not worry about I don’t think (or amitriptyline, it’s cousin). The anti-depressant and sedating effects are actually nice with those two drugs w/ MAV - it helps calm you down! However, I was one of those unlucky people who had a racing heartbeat on it. That said - the first week I felt a bit more nervous on it but then it started to work for me - but then I found out my heart was going to fast. However, again everyone is different and I cannot say what you will experience. Just try to stay calm and remember these drugs can help you!! that’s the main thing. You are taking a step towards recovery in trailing any drugs at all. You have to see what works best for you. Some people luck out with finding their drug right away, for me it took three attempts and I’m still just crossing my fingers that Gaba will work out.
I don’t know what migraine doctors don’t prescribe Gaba 1st though - maybe because it requires more daily doses. It’s super cheap (I take the generic) and has no mental side effects that I can tell - just a little bit sleepier than usual but totally functional at this dose and relaxed. I just feel back to my more normal self because I am less dizzy and less sensitive to all typical triggers that would set off my vertigo/rocking sensations - mostly fluorescents. It’s almost so side effect free right now that it feels like I’m eating sugar pills. haha
Good luck with the med trials - but again remember everyone metabolizes drugs differently so it may take a while to find out which drug works! Keep me posted about what works for you guys! Liv