30 male, have been diagnosed with vestibular migraines. I basically get dizzy spells (not spinning) that last days along with facial numbness.
My doctor said I can trail with anyone of the following.
Anyone have any tips/ success with any of these ?
Hey there, I’m the same age as you but female. Yup vestibular migraines are a total nightmare…and seems permanent but can be much alleviated with meds. I also try to avoid coffee, MSG and gluten, all of which make my symptoms worse. It’s a bit of guessing game when it comes to diet though.
As for drugs, I haven’t tried the first two, but I’ve tried topamax and nortriptyline both work for people - do a search for both drugs on this site and you’ll get lots of different takes on the levels that people needed for the individual case they have, and because everyone responds differently with different side effects (sometimes none at all, sometimes people are more sensitive). I am sensitive to all meds and found nort. helped me at 10mg a great deal but made me worse higher than that. I had to wait a week for it to help though and initially it made me feel worse like more off balance and anxious. Then it was amazing. I recommend taking that drug 12 hours before you want to wake up so you are aren’t a zombie. Topamax takes a longer time to work. I think at least 50mg over a course of at least 2 month is supposed to help people but you need to titrate slowly. My neuro recommend I be on 25 mg for three weeks then go up to 50mg, but I needed faster results in my personal case (but I may go back on it eventually to see if it’s my magic pill).
In the meantime, I’m quite happy with a drug you didn’t list, and that seems less frequently prescribed for some reason (maybe it’s older?) called Gabapentin (generic name) - also called neurontin. 100mg 3x a day works very well to control the overexcitability of my nerves but I still have some issues if I’m under intense fluorescents or in front of a screen all day, but fort he most part I function 80% out of 100% under fluorescents and virtually 100% in natural light. I went up to 200mg 3x a day and that also helped but was somewhat sedating, so I’ve gone back down.
You might want to ask your doctor about trying gaba at this low dose three times a day and see what that does for you. It’s been the best one I’ve been on so far. Liv
P.S. I still get breakthrough headaches with gabapentin when I’m exposed to too many lights, even though it has given me back my sense of stillness on a daily basis. That’s why I’m always wondering if I should try topamax as that does stop my migraines almost fully , but that drug has a tendency to make me not sleep very well. It’s different for everyone. Some people find they get sleepier on topamax.
Really glad to hear gabapentin is helping you so much at such a small dose.
Are you on Nort. still as well?
I’ve a qn about gaba for you: Nort gives me insomnia instead of drowsiness, have you found that gaba helps you with sleep?
Ps:80% under fluorescent and 100% otherwise are EXCELLENT results, if I were you, I’d be very hesitant to rock that boat by trying other meds or getting off gaba. Hang in there and in some months, you might get better any way. Check these out to help under fluorescents. Didn’t try them but someone recommended them to me ( they have a feminine version if you search at Amazon) : Gamma Ray Flexlite reading glasses.
Hey Fussyfussy (and shogangp), Yes thank you! It’s kind of amazing with gabapentin. It makes me feel so much better even at a tiny dose, but whenever I go higher than 200mg 3x a day I get another type of dizziness and wooziness that cancels out the drug’s benefit. I have much less ear fullness and have regained a sense of stillness with the drug and ability to stare at my computer intensely for long periods of time (but I still can’t work very well at my computer if I’m also under intense lights). Mostly the issue are CFLs for me (the twisted fluorescents now in a ton of places for environmental reasons…but def not humanitarian reasons for someone like me (or, I suspect others with MAV, or epilepsy who are sensitive to flicker rates of lights). I will be up at 200mg 3x a day for the next few days to see if I can work through the drowsiness with a tiny bit of coffee added in, if I avoid MSG, cheese, nuts, bananas and gluten like the plague. I find those are triggers for some of the symptoms (I think). I do think that there is something to be said for the migraine diet.
As for something you asked about sleeping - that’s so interesting that nort makes you have trouble sleeping. For me, it was like I am comatose when I take it until I wake up! Gabapentin does help me sleep (I space it out taking it at 8am, 2pm, 10pm), and it does not interfere in any way I can tell, mostly because also I’m not that anxious at all on it - it has a calming effect for me since it’s mildly sedating and I feel less anxious when I am feeling better anyway. I go horseback riding regularly on it and that shows just how much it helps me. I can’t go riding unless I’m on it and that’s a big part of my life (my sport) so it has made a huge difference.
The key thing about gabapentin (and all drugs it seems for MAV) iis that some people are helped at a tiny dose and some people need much more apparently depending on how each person metabolizes a drug. I seem to be very sensitive and able to respond to low doses-but that also makes me prone to side effects at low doses. I’d recommend gabapentin to you , fussy fussy, because you said that you were very sensitive to drugs too. Gaba has a very low side effect profile as far as I can tell, but again, I have an issue with it any dose higher than 200mg 3x a day. I feel drunk when I go higher than that.
And thank you for the glasses suggestion!! I guess I just have to figure out how to limit my time under CFLs as much as possible although they do seem to be everywhere now.
A last note (and I won’t keep deluging this list!) is that gabapentin does seem to cause slight water retention for me in my legs but not the rest of my body, which is good. So I just need to follow a stricter low-salt diet I think. Again, everyone is different though, and this is a side effect I can deal with.
Hope you guys feel better!
Thanks, Liv - you are so kind.
I think I’ll ask for gabapentin at this point and add it to the Nort. Did you get off Nort?
Can you please answer the following for me?
- Aside from the tired feeling and slight water retention, have you noticed any other ongoing side effects with gaba? Weight gain/appetite increase, flu like sx etc?
- How long for the initial side effects to subside and what were they?
That’s it for now. Do check out the glasses. I found a pink pair ( I’m NOT a pink type, but beats the alternative) but didn’t buy it yet since Ive so many issues, the fluorescents arent my top priority now. I think less than $20. If I were where you are at, I’d give them a try.
Thanks again for gaba help
One more thing: why do you have to divide the doses? I noticed ppl do that with gaba. Why not once a day?
The divided doses are essential because the half-life of gaba is so short. That’s the problem with the drug that it needs to stay steady in your blood stream before it wears off. So the thing is that it’s not as convenient and you have to take it three times a day - I space it out with those times because they are convenient for me but I think if you divide 24/3 that would be idea (i.e. 8 hours apart). Your neurologist probably can better advise you then I can.
I am not on nortriptyline along with it because I get enough benefit from gabapentin I think - the main problem with nortriptyline and the reason I don’t use it even though it was very helpful for me at 10mg (tiny dose I know!) was that it causes facial bloating a bit for me - something that really bothers me - and also a rapid heartbeat. That is a rare listed side effect but it happens. Plus gaba and nort. together probably would have a majorly sedating effect for me. Nort made me sleepy.
Do try the gaba and see if it helps you at a low dose (it may since it sounds like we’re similar in terms of being sensitive to meds- i.e helped at a low dose by some, more unable to take others b/c we experience more of the side effects).
As for your 2 specific questions re sx: 1) I am mildly tired on gabapentin but I felt more tired in the morning on nort. and I can deal with 1 cup of coffee per day without crashing. I’m not losing or gaining weight because I’m conscious of the fact that gabapentin might make me a bit tired so more prone to eat to try to get energy (but I don’t feel more hungry)- I think it’s just will power at the end of the day. I also go to the gym now that I’m not as dizzy so that helps a bit - the elliptical. No flu symptoms, in fact, this drug has the least amount of physical and emotional symptoms I’ve had with any drug. I feel like myself if not a bit calmer, and that’s welcome!
- There were no initial side effects aside from feeling a bit sedated, but again I go to a full time job and function fine - interact with people and exercise without a problem. The main issue is that even at 200mg 3x a day I am still struggling with work conference type situations of fluorescent lights (such as places with big screens and powerpoint, and CFLs overhead) but that may be a symptom of MAV that no drug can fully suppress. I sometimes wonder if topamax might do it at a high dose, but at the same time, I know that I feel very irritable, anxious and have sleeping problems on topamax (aside from the other sx they warn you about esp at a high dose) so I just will stay with gaba and try to function as best I can in those situations. The glasses may help. I noticed Bono, Johnny Depp and other celebrities wear tinted glasses sometimes, which is interesting- maybe they too have some issue w/ lights!
Good luck w/ the Gabapentin and let me know if you end up getting it and feeling better on it. I recommend staying at the lowest dose at least for a week to see if it helps. You should see the benefit pretty quickly if it’s helping though - I felt better after the first dose of 100mg. Again, I can’t go higher than 200mg 3x a day or else I feel a different type of dizziness that isn’t MAV. Liv xx
Thanks a lot, Liv.
I tried FL-14 migraine glasses ( custom made in Utah and a bit pricey) and they didn’t help. Plus they were a strange color (very dark pink/brown).
The friend who recommended the glasses I told you about to me said her husband has very bad glaucoma and the computer/lights at work were intolerable for him and these helped. Interestingly, these glasses do NOT have a tint! They look like regular glasses. Totally indoor type.
So maybe you should try.
Thanks again and I’ll keep you posted. ( I don’t want to be negative but I’d be surprised if I tolerated gaba- I seem not to tolerate the tiniest of anything except Nort. ;( )
Sure thing! We all definitely need to help one another- this is a difficult problem someone without it cannot understand. I certainly couldn’t have imagined it until I started having it happen to me in 2013. I’ve made a lot of strides since then. MAV is always there but it is almost completely eliminated by gabapentin for me under most conditions- except for when I am in very intense stimuli settings, as I mentioned. Perhaps the man who started this thread wants to try topamax, as that does seem to eliminate some of the light sensivitiy at 50mg (I found that to be true). But it never gave me the sense of stillness I get with gaba. I have no side effects side from a tiny bit of water retention in my legs/lower body and a bit of sedation from gabapentin. Try to stay at a very low dose for a while - dosing three times a day. I really think it might be the drug for you since it sounds like we are similar with our sensitivity to meds. Keep me posted if you end up trying it! xx
Please do a search on this site (there is a serach icon) for all the meds you are listing to get the most information you can.
Personally, Nort. works very partially for me (not enough), Zoloft was way too strong and couldn;t tolerate it, the other two, I didn’t try.
Best to you.
I have a recollection that you live in the North East? If yes, the weather must have been pretty bad I suppose since I’m in NJ and we had huge variations in baro pressure in the last week. Going from 30.3 down yo 29.3, basically as much as it varies in just a couple of days. I’ve been doing horribly, did you feel an impact? Thanks.
Yeah I don’t know what I am going to try. I am on verapmil now. No side effects but isn’t helping much. I am dizzy most all the time, facial numbness on and off, but not much headache. The doctor I saw last in Pittsburgh PA, James Furman is supposed to be the best vestibular migraine doctor in the country. He said it’s trial and error with medication but his favorites were noro and zoloft. Zoloft is supposed to be real good for dizzyness. Topamax I won’t try yet too many people have bad side effects, noro I guess is in the middle but can cause weight gain. Neurontin, i took years ago for something else and had no side effects, but my current doc didn’t have it high on her list because it can cause dizzyness in allot of people.
They said the main thing is you have to try each one for a month or two because they can take that long to even work, if you don’t give a change then you an falsely cross off a medicine on your list that may have worked.
Ativan and clozipan are supposed to be real good for dizzyness too, but they just make me tired.
My doctor uses nortriptyline first. Have you been advised on diet and lifestyle changes? These are just as important.
Regarding gaba/neurontin- yep it definitely can cause a different time of wooziness/dizziness at a higher dose but for me at 100-200mg 3x a day is magic (I think I’m going back up to 200mg 3x a day even though I think it does cause a little bit of water retention and sedation…corresponding to dosage). I literally was euphoric and called my entire family when I found that 100mg 3x times a day (as you have to ensure it remains steady in your system due to short half-life) was working so well. I felt still for the first time in three years. No inner head/ear pressure and movement or dizziness. When I go to 300mg even for one dose, the benefits are canceled I am more dizzy. I think that is a drug sx rather that MAV though.
As for nort. yes that does tend to cause some weight gain, gaba is known to as well sometimes, but I am trying to deal with that as best as I can by following weight watchers points and going to the gym. I can’t take nort because of a rapid heart beat on it (rare sx) and it also causes facial bloating for me, also very weird. Gaba does not do that, which is nice. Topamax makes me very anxious mainly because it causes vision issues for me at night in particular (tracers, sparkling lights) and I can’t sleep well, but it does seem to work for some if you can ride out the initial rough patch. For some reason women seem to have a harder time with it maybe b/c it does something to hormones. I haven’t tried zoloft, but I’d want be sure I wasn’t taking anything that was addictive as that might add to the problems. Gabapentin lifts my mood anyway- I felt very aggressive on topamax too, which was weird. Anyway, I don’t want to scare you off anything, so good luck. I simply don’t think it’s right that doctors don’t try gabapentin out on their MAV patients at a very low dose as it has a very low side effect profile and it has worked the best (albeit it has its limitations when I am under intense fluorescents) out of all the drugs I have tried, hands down, with the least intrusive sx.
As for Asli’s question, gaba has helped with the sensitivity to all stimuli, including barometric pressure changes and humidity levels. I used to get very dizzy when a storm as coming in, when it started to rain, or when the humidity was heavy. That’s much better (almost not noticeable) when I’m on gaba, even at this low dose. A user called “muppo” on this forum attested to the benefits of gaba in her comments - but for some reason she had to go much higher than I did to get relief, and she could tolerate higher doses, whereas I definitely cannot go higher than 200mg per dose it seems.
Good luck guys. xx
P.S. Asli, I live in the South, so yeah barometric pressure /stormy weather is definitely an issue down here too! But gaba has helped so much. it’s got such a good tolerability profile, I think it’s a shame neurologists don’t try it first (but at a low dose)
I think they don’t try it because it’s very rare it helps people with dizziness. But for you it works perfectly! I think maybe at the lowest dose it causes just a mild unnoticeable sedation which eliminates the dizzy similar to like Ativan or clozipan. I may try it next. But I guess I have to try the other ones first.
Yep I did full diet, no help. I am pretty fit, on days that I feel good I run about 3 miles then do a intense weight workout. The weird thing is my symptoms go away allot of the times during exercise.
Also for nort or zoloft if anyone tries you can get a liquid version, so that way you can start nort as low as like 2.5mg, same for zoloft. I am very sensitive to medication but for the same reason that’s probably why I have mav. I had something like this year’s ago, it lasted 2 years went away for 3 now back !
Hey again, I also find exercise helps a lot with the symptoms perhaps by releasing some of the pent up tension or just distracting me. Interestingly before I was on meds (now that I’m on meds I don’t drink) a glass or wine or a beer would help distract me from MAV symptoms and helped too.
About gaba- it’s an anti-epilpetic/anti-seizure drug, which you might know already, so it has the affect of calming the nerves and having the electricity go in the right channels. The sedation effect is welcome too because honestly you know how this condition causes anxiety on top of it. It is very true that gaba can cause dizziness on its own (I think I’ve heard that about topamax too) and I don’t know whether that would go away after a few weeks of getting used to a new dose level, but I’m not really willing yet to experiment with higher doses because 1) I have to stay cognizant driving and at work (and when doing sports like horseback riding - I have a horse, so I have to exercise him and it’s dangerous if I’m dizzier on top of MAV!) 2) I suspect I’ll be on gabapentin long term to manage MAV so I want to keep my dose as low as possible to function (and if I want to have kids and stay on gabapentin I don’t want to be on a higher dose).
I realize these considerations aren’t really male-oriented, but this is why I have made the decision I have about my dose. It’s good enough, I get the benefits without the sx in large part, and if I get desperate for more relief in highly fluorescent lit settings maybe over a vacation I could try to titrate higher when i’m not responsible for anything to see if the wooziness at higher doses wears off.
That’s all for now! Liv