New with so many questions (Long Post)

Sorry if this post is long. I’ve been reading a lot on this site and finally decided to post.

About 6 years ago I had fullness in my right ear for a few months that was follow up with vertigo and was diagnosed with Meniere’s even though I had no tinnitus or low level hearing loss. Since then it really wasn’t too much of an issue for me. Admittedly I didn’t follow the diet or take the meds. Since then I had one episode of vertigo a few years ago. Fast forward to February, two month after I had my daughter. I began having dizzy spells, not vertigo, just dizzy. I dismissed it to being tired, stressed, etc. Since I had no ear issues, I didn’t connect it to the Meniere’s. In March, I got vertigo out of the blue, not ear issues before hand which I thought was odd for Meniere’s which typically has ear fullness and tinnitus before attacks. So that came and went. Then at the end of April my left ear began to ring, again I didn’t connect it to the Meneire’s diagnosis because it was a high pitched right and it was in my left ear, the non effected ear. I saw and ENT who prescribed steriod nasal stray and oral steriods. Well thats when it all broke loose.

May and June were filled with days of random fullness in one or both ears and ringing in one or both ears. The constant seems to be high pitched ringing in the left and fullness in the right. Then the headaches began…almost daily I have a low grade headache. Also on about 4 occasions my arms have gone tingly/numb. This has lasted anywhere from 20mins to 3hrs. In July, the vertigo joined the party. I was on vacation and doing a lot of riding in a car…sometimes 4 hours a day, and incidently had my frist period since having the baby. By the end of the week I had vertigo. I got vertigo twice in August, before and after my period. This time there seemed to be a pattern to the symptoms. It got difficult to hear, not necessarily fullness in my ears, but more of a pressure in my head that pushes out. Then I had the numbness in my arms, followed by the worse headache yet, then the vertio…this happened over a period of about 3 days.

Through all of this I have seen three ENTs. The one who originally diganosed the Meneire’s and is sticking by it, one who studied under him and another ENT. They all hear fullness and ringing and say Meneire’s even though I have no low frequency hearing loss (only some high frequency hearing loss that I have had for at least 6 years) and my tinnitus is high pitched not low. They also dont want to hear about the headaches, numb arms, etc. I have tried every Meneiere’s med out there and a strict low sodium diet and it didn’t even put a dent in my symptoms. The next step is tubes in my ears and I just dont want to do that when I’m not confident in the diagnosis.

I read about MAV and thought it fit well. I have the childhood history of motion sickness. I also have a lot of the triggers. Hormones, lack of sleep, stress, and when I was on vacation I was doing a lot of riding in a car. So I went to see a neurologist who told me about MAV and told me about the connection between migraine and vertigo but he doesn’t seem to know a lot about the connection to the ear issues. He gave me Topamax, I started at a 1/2 a pill and now I’m at 25 mg.
I guess I’m just looking for some confirmation that yes this could be MAV and yes the ear issues could also be caused by MAV and it all may go away with successful treatment of MAV.

I’m waiting patiently to get up to a dose of Topamax that will work. My doctor has my max at 75 mg now. I have to say, I’m feeling pretty low about this whole thing. It’s been a long hard couple of months and I’d like to get back to being a new mom.

Thanks for any advice.


Reading your list of symptoms and triggers, it does sound like this is likely to be a case of MAV. I think the problem is that a lot of Doctors know about Menieres, and not so many know about MAV (although hopefully this is starting to change). Actually Menieres is much rarer than MAV, so really MAV is the more likely diagnosis in a lot of situations.

I know others on here get issues with their hearing during attacks of MAV, and even more have problems that include ear fullness and tinnitus, so having those kind of problems would definitely not rule out MAV as a diagnosis. Personally I don’t get them, apart form a bit of mild ear fullness, but I share a lot of the other symptoms you have described, like the motion sickness, and other migraine symptoms like tingling/numbness in my arm, and horrendous headaches.

Some of the people on here have had really good results with topamax, so I hope it will be the same for you :slight_smile:

Thanks for your reply. It gives me some hope. I feel like I’ve been in a non stop cycle for months now. I haven’t had one symptom free day. It’s just horrible.

It does sound like MAV. The first attack I got I had trouble hearing and any loud noise bothered me. I had low tone hearing loss and was diagnosed with Meniere’s. The Dr diagnosed me in like 5 minutes. Then I went to Mass Eye & Ear and received a diagnosis of MAV. I had another hearing test and my hearing came back 100%. I agree with Beechleaf, Meniere’s is much rarer than MAV and alot of Dr’s don’t know about MAV. I was being treated for Meniere’s and was on a low sodium diet and ate alot of bananas, nuts, citrus, etc and come to find out that everything I was eating to control my Meniere’s was a trigger for MAV. I then went on the MAV diet and started to feel better within a few weeks. Not sure if anyone has told you to read Heal Your Headache by David Buchholtz but its a great informative book and also tells you to follow the migraine diet and try to figure out what your triggers are. The Migraine Brain by Carolyn Bernstein is also a great book. This forum is the best. You can find loads of information on here about everything. I hope you start feeling better. Hang in there.

Thanks Kathy! I read the book last night and today. Very informative and I like you had been eating many of the non migraine friendly foods when trying to keep my sodium down. I’m going to start the diet ASAP.
I hope something works soon, it’s been way too long dealing with this!