Does what I have sound like MAV?

Olivia,

Really happy for you. Stay with what works, don’t rock it :).

No updates from me.

Best,
Asli

Thanks so much, Asli! It’s a relief to find something that works that also allows me to feel like myself.

Anotherstar- yes Gabapentin is the best drug I’ve tried so far, but I can’t go higher than 200mg 3x per day it seems without having too much sedation and another type of dizziness that’s different from MAV.

I’m just a little tired for a bit after I take the pills but I’m fine at this dose in doing everything I like to do, even horseback riding. The only issue is that I do get some of the MAV sensations back (not at all as severe though) when I’m exposed to lots of computer screens, media screens, fluorescents, etc. still. CFL lights etc. I much prefer incandescent light bulbs and natural light.

People have a lot of problems that are worse than MAV and I’m just going to try to take care of myself and enjoy life and try to push on with this. Gabapentin makes my symptoms manageable. Hope you guys feel better soon. I’ve realized I may never be 100% but I think that I feel well enough to function on Gabapentin! Liv

Not sure where to go from here. It’s been over a week since I touched anything (propranolol) and I’m still way worse than when I started those stupid pills. It’s like the prop awakened the MAV beast and now it refuses to go back to baseline dizzy that I had before (irritating and no fun but livable!)

Last year my MAV burned out around March and completely vanished in April. Part of me wants to hold out till then but it’s so hard lately. I’ve been waking up dizzy and when I turn over in bed I get stomach drops now which I never had before. This disease is so unbearable, especially at 25. I can’t help but feel like life is somehow over for me.

@anotherstar: I really feel for you. I’m quite a bit older than you, but still far away from retirement. And I perfectly know this feeling of desparation that there is nothing you can do and that life is over.

4 weeks ago I tried “Flunarizine” which is also a calcium channel blocker like Verapamil. It did help to some extent, but after 5 days I got heavy mental side effects. I don’t know how to describe it, it was partly a depression and partly a feeling I’m going to lose control completely. It was some sort of a feeling that I was only a passenger in my own life, that I just wasn’t myself anymore, don’t know how to describe it better.

Things that relialby help me to a certain degree and have no (or just minor) side effects are:

  • Vitamine C in high doses which is like 1.000mg per day and more
  • Vitamine B complex (B1, B2, B6, B12)
  • Magnesia
  • Zinc
  • Calcium

For all those things mentioned above I have to use very high doses, typical 10-20 times higher than the RDA. Those plain vanilla multi vitamine capsules from the drug store don’t do anything for me.
Possible side effect is a bit of diarrhea, but not too bad.

  • Migravent: very helpful, unfortunately relatively expensive.

  • Cetirizine: an old OTC anti histamine. Might contribute to a bit of weigt gain. Others have it also reported, but this is not confirmed. Might as well be that if you feel better and enjoy life better, then you also might enjoy eating more. But anyway it’s for sure not that you pop up like pizza dough …

  • Dimenhydrinate: is used in travel gums against motion sickness. Main purpose is to fight nausea and vomiting from motion sickness but helps me against vertigo/dizziness. Takes about 2 hours to show an effect. Can cause a bit of sleepiness as a side effect but not too bad. In the US branded as “Dramamine”

  • Diet: staying away from known triggers, in my case coffee and alcohol, particular wine and champagne. I also try to eat low carb and stay away from any kind of preprocessed food but rather go with fresh salad, veggies and a bit of meat/fish/eggs

If you haven’t tried those things yet I recommend to do it. But DON’T combine Cetirizine and dimenhy. with any “hard” drugs, such as Verapamil or Gabapentin as they might take influence on each other.

With those things I am in this state as you describe it “no fun but livable”. Hope that helps …

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Hey guys,

Gabapentin is a drug I recommended to another star before, but unfortunately after being on it for more than a few weeks, I have noticed that it is bloating and very sedating. It did work at 100-200mg 3x a day extremely well for my MAV symptoms though. But I am too tired and have absolutely no motivation to do anything when I am on it.

I am giving good old topamax another try because it does seem to cut my MAV symptoms but it is more energizing and the weight gain is not an issue. It is also supposed to be very regard on this forum for MAV-ers if they can stick out the first few months of it. If I can’t deal with the side effects of topa, maybe I can figure out some other plan…

Best wishes to you guys too. These meds aren’t fun but I think topamax might be the best bet perhaps, at a low dose hopefully for me…The part that is stressful is the birth defect issue with topamax, so I have no idea what I’m going to do in terms of planning for the future (I’m a relatively young female) but I’ll take things one step at a time. xx

You can do it, @liv85!! I started Topamax in mid-December and already am at 125mg (I live in NYC and am desperate to gain control of the subway system again - subways and dizziness do not go together). I suffer from both chronic traditional and vestibular migraines - Topamax already has helped with much of my traditional migraine pain (reducing pain from a steady 8 to a manageable 5) and almost eliminated my daily morning migraine aura. It has yet to make a dent on severe photosensitivity or motion-sensitivity (enter my new little friend Baclofen, which has put an end to subway platform throw-up sessions - they’re trialling it up here for vestibular patients and it seems to be working).

Now, if anyone can share tips on how to reduce what I like to call the ceaseless leg pins & needles…

Thanks so much for the encouragement, primer!! I have taken b2 and magnesium (oxide) tonight (both at 400mg doses) as recommended on some headache websites as a last ditch effort to feel better naturally but I don’t hold out too much hope that it’ll do much.

I just have so much trouble with side effects, and being young it’s hard to imagine being on a drug for a very long time (and if I want to have kids…that’s a concern…) but honestly I have to live my life and keep my job, so I’ll go back topamax after the next 2 days if I don’t feel a big difference with b2 and mag.

I’ll let people on this forum know if that magically has any positive effect. Doubt it though.

Don’t worry - I’m young, too. Two of my best friends are on Topamax and they both have beautiful, healthy children. You just have to stop taking it whilst pregnant. The side effects are tough but they’re far less severe than the condition it’s treating (at least for me it is). The first few weeks are the hardest part - download some good books on audible (or your public library), make a big batch of rice pudding and you can power through it! Oh, and add some butterbur and fish oil to your vitamin mix and then you’ll have a nice brain-healthy cocktail. Cheers!

Hi primer! Thank you!! We’ll see how tomorrow goes… I am pretty sure I’m jumping back on the topamax bandwagon depending on how I feel now that I’ve stopped gabapentin, which was way too sedating for me to function at work. There are millions on the med, so I don’t know why I am so afraid of it. :slight_smile: I agree that the illness itself is far worse than any side effects when it gets bad under fluorescents and other stimuli. Thanks again for your comments and encouragement. It’s hugely appreciated. xx

You can do it! Topamax is a difficult drug but listen: we have it easy compared to those who it’s truly intended for. Traditional Topamax patients can go up to 400mgs - so what we have is small potatoes! It’s like what my vestibular therapist says: take it one day at a time, always look for the positive. Even if it’s a shit day, you always can find something positive - even if it’s a warm bath, successfully doing your Bs or cozy cup of tea.

Thank you, Primer!! :slight_smile: That is true. I try to stay positive that at least this isn’t full blown epilepsy, that would be very scary indeed. xx