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Wondering if I have MAV?


#1

Hi, I’m new here and wondering if I have MAV. As some of you are aware there are similarities between Meniere’s and MAV. I have been diagnosed with Meniere’s but the doctors mostly ENT’s don’t agree with that.

My main symptoms are:
-Walking feels like I’m walking on a trampoline it’s constant.
-When I brush my teeth the bouncing up and down feeling gets faster and worse
-Moving my arms up and down also trigger the trampoline/bouncing feeling
-Sitting at the computer looks like the room is tilting left and right slightly, as if on a boat
-I’ve got ringing in my ears, louder in the right side
-My neck and shoulder gets tight from trying to keep stable especially at the computer
-Sometimes my hearing goes down a lot for 5 seconds and comes back in full
-This has been a gradual process leading to worse but seems to be stagnant at this crappy level, not sure
-When I lie down I feel like as if the bed is rocking
-I don’t get headaches

Some questions as well.
Does this all sound familiar too you? If so which one of the symptoms above?

Taking Betahistine or Serc for Meniere’s made me feel worse, if you have MAV and tried this, did it make you feel worse too?

Does increased salty foods also make MAV worse?

Thanks a lot!


#2

Yup it’s MAV in my opinion. I have had many of your symptoms identically. We all have slight variations on it. You’re lucky if you get this diagnosis early as you’ll recover sooner! I had to wait three years to figure out the right mix of meds and supplements that work for me, but I don’t know if you may improve on something else. Go talk to a neurologist who knows about atypical migraine and find out what they recommend. I suggest starting very low on anything and see how you respond to the lowest dose first before pushing too high too fast. The regime I’m on is 200mg CoQ10, 400mg magnesium glycinate and 100mg of gabapentin 3x a day. Gabapentin is not as often prescribed for MAV but it was the only drug that I could tolerate that also made the biggest difference for my symptoms. So its a process of trial and error for this stuff. Took me several months of trailing meds. Use the search function on this forum to find out about others experiences with any med to get advice…but remember we’re all different. Don’t get scared off by one person’s bad review of a medicine, just try to stay away from addictive benzos or stuff like that… don’t just suppress anxiety try to get a medicine that is going to calm down your nerves like an anti epileptic like gaba or topamax or valproic acid (but the latter two have more sx I think but maybe they’ll be your golden ticket) . or you can try anti-depressants that will change the way your body responds to the nerve over-firing and mute that. I think nortriptyline is the most common one in that category prescribed for this, but there s also zoloft commonly used. I am so glad to have found my combo that allows me to function and I will have to soon sign out of the forum to get on with life to some degree… work has piled up for me… but you will DEFINITELY get better if you give it the time to find the right medicine and supplements to work for you. Don’t let doctors push you off supplements. I definitely think its also a good idea to supplement with D, B12 and C.

Good luck!! Find a good neuro first you like. I liked mine because he told me to stay on the lowest dose and that did work for me. Im not perfect and I still have some weird sensations but they are bearable and I can work at my computer again intensively.

I also didn’t get actual headaches until I was several years into MAV and I guess my nerves got more and more aggravated… by stimuli like fluorescent lights, screens etc…it would build up over the day and I’d get a terrible headache. Anyway for the first few years it was siilent. The med and supplements I’m on halt that progressive worsening of head pressure though.

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#3

Hi liv,

Thanks so much for your detailed post! My neurologist never has expected that this is MAV but I did tell him about it and he prescribed topamax which I didn’t like because of side effects. The reason they thought it was Meniere’s was because the Audiologist found slightly above normal ear pressure on my right ear and from that concluded that I got Meniere’s. But meniere’s are characterized by vertigo attacks as said by ENT’s which I don’t have but I did get BPPV a year ago which resolved and never got it since, I did the epley maneuvre to resolve it and cut back on salt/msg foods.

I also had a ton of stress and anxiety before all this started, and I was working out. Luckily I don’t have anxiety with even the condition I’m in now, due to experience and a therapist.

Does salt intake affect MAV as well like Meniere’s does?
Did you ever have a test by an audiologist where they found excess pressure in your ear?
Have you had the hearing go down for 5 seconds and come back in full symptom?


#4

Dear Liv,

How long did it take you to see response or improvement on Gaba? I just started with Pregabalin 3 weeks ago and am on 50mg 2 times a day at present going up to 3x50 next week. It does help me sleep which is a big plus but apart from that I do feel a bit “damped”. Thanks for your input… Best J


#5

Hey Mr. Molar!
I had solid improvement pretty much immediately but I have to avoid certain triggers, mainly too many nuts and other high tyramine foods like yogurt or else the benefits are somewhat canceled out. Weather and barometric pressure also affects me–when its stormy I feel worse and more dizzy.

I am taking only 100mg three times a day because otherwise I get too groggy and kind of so relaxed I don’t really care about doing my work. It does calm me and help with sleep though. I am taking 400mg of magnesium glycinate, 400mg of CoQ10 (a good type called kaneka or something), and 400mg of vitamin B2 per day. I also take a claritin because the area I live in has lots of plants that cause allergies (loraditine is the generic name). I heard that some people on the forum were helped by claritin, so I don’t know if it’s actually also helping MAV.

All of this seems to help a lot and I am glad because it seems to be working synergistically to make me feel virtually normal again. I can go out to restaurants and stuff and not feel dizzy, drive without a problem and horseback ride without any dizziness. Fluorescent lights and CFL (compact ones that are twirly) are still somewhat of an issue for me depending on how long I am under them, but screens don’t bother me anymore.

The main thing is to keep your blood vessels dilated with magnesium & other things that help dilate (avoid coffee and other things that constrict the vessels…including your inner ear blood vessels responsible for balance)… and the nerves calmed down with something like gabapentin. I cannot go higher than 200mg 3x a day though (me personally…) because I get weirdly dizzy in another way, a non-MAV way.

Best of luck and keep me posted! Preglabin I think is very closely related to gabapentin but you need a lower dose since it’s better metabolized or something. Not sure! I’m sticking with gabapentin for now… I have virtually no side effects with it other than some sedation which I like since I feel calm and chill despite everything that’s happened with this illness! At least I feel 90% most of the time now. I did bang my head on something today and that made my head a bit more dizzy than usual, but I hope that if I sleep on it, I’ll go back to normal.

Liv


#6

PS You may want to give gabapentin a try if you feel that pregalabin makes you too tired. I think gabapentin you can start very low (like the dose I’m on still) and see how you feel at smaller increments. It doesn’t hit you as hard…you can go slowly up or stop where you feel like the pro/cons of the med is right.


#7

Hi Liv,

Thanks a lot for your reply, I actually replied back but the forum “temporarily” hid my post which has yet to be shown.
I shared some links I think that’s why.

I’m wondering does your hearing go down a lot for 5 seconds and come back at times?
Did you ever take Serc and how did you do with that?
Also do salty foods affect you if you have too much? I’m not talking about junk or msg containing foods, just straight table salt.

Also what are the brands of the supplements you take?

Thanks


#8

I’ve started on nort as of last night, feeling a bit dizzier is this t ypical?


#9

Yes I felt dizzier for a week on nort but then magically it started to kick in the second week even at 10mg and REALLY help. That said, I personally couldn’t take it due to heart sx (rapid heart beat) and I got bloated. I’m very med sensitive.

My hearing sometimes would get muffled if the nerves in my ears were going ballistic. When the MAV gets bad for me, I hear a clicking or popping sound in my ears a lot. Actually the crackling is always there a little bit but I don’t notice as much now that I have the symptoms better with gabapentin and Mag Glycinate and CoQ10…

Hope you feel better!!


#10

Hi Liv, that’s very good to know, I’m on 4th day on it so far hoping that it will magically kick in sometime in the second week.

Interesting re hearing, I get the popping sounds too time to time, it sounds like a little soap bubble popping. Let’s see how this goes, it sounds like I’m on the right track with Nort as it helped you aside from side effects. Only thing I’ve noticed is having to get up to pee middle of the night but that maybe because I’m eating later in the night to take the med with it.

Thanks!!


#11

Hey Zeal,

Hope you feel better!

I’m not on any meds right now and doing well on these supplements:

CoQ10, 400mg
magnesium glycinate, 500-800mg/day
claritin reditab (not sure if this is needed but I’m hesitant to change my regime that is working!)
B2 400mg
Also now(this seems to have really helped): St. John’s Wort (GAIA brand) 3 pills per day

Definitely don’t take St Johns Wort if you are on an anti-depressant though without consulting your doctor because it can have strong interactions with any meds that are like tricyclics or SSRIs that influence serotonin though.

I take it now that I’m weeks off nortritpyline.

and I take these also pretty regularly:
vitamin d3
vitamin b12
vitamin c

Irony upon ironies is that now that my MAV is fully controlled pretty much (lights are not bugging me on this combo!!!) I have now pulled out my back. haha Hope that it calms down soon. Take care!

xx