New To Site

Hello, I am new to this site. I have been on another site since July but my wife gave me this one.

I have MAV. I am pretty confident with this diagnosis. It took seven months to get it. In short in April I started to have morning sickness every day…my wife said I was pregnant :slight_smile: At first my GP thought it was due to congestion (I have bad allergies and they have been bad since I was 3). then he thought it was Acid Reflux (which I do have). They did a ton of tests on my gastrointestinal area to confirm that nothing was wrong down there. In May I was at a busy restaurant and I thought I was going to be sick. I had had something like this four years ago and the ENT told me to take Meclazine and it would eventually go away…which it did in about six weeks. However it was not every day and mostly in busy places like the Mall or busy restaurants. Anyway I emailed my GastroInterolgist (who is a friend) and asked if it could be Vestibular…he said maybe and I tried Meclazine and sure enough felt a lot better. I saw a ENT in July who told me keep doing what I was doing and see him in August if things were not clear. When I went in August he was very different and much more serious (he is also a friend) he sent me to the Dizzy clinic and I started Vestibular Rehab in late August. Meanwhile I was getting better, I was able to get off Meclazine in late August and was recovering pretty well when I got a flu, then a sinus infection then a viral infection in October which set me back to August symptoms. So I called my ENT and set up an appt. He called the day before and had me meet with his Neuro Otologist partner. I met with him and within five minutes of starting my story he told me “I know what you have…would you like to get better…?” I almost hit him. Anyway he put me on Nortryptilyne (first week 10mg, 2nd week 20mg. now at 50 mg for last two weeks). I actually feel a lot better than before I started the drug so I am hopeful, but know that it takes 6-8 weeks on the therapeutic dose to tell so I am waiting. My symptoms now are mostly bad acid and gas (I belch a lot…which I know is gross but it makes me feel so much better), when it was really bad the pain in my stomach was intolerable and I had a spacey and tired feeling…like being seasick or carsick. It is every day. I used to wake up with a stomach ache every day but for the last two weeks that is gone (knock on wood). In July I could not watch TV or even read…by August I could do both again (tough since I am a lawyer). I continue on the Vestibular Rehab since the doctor and others have said it will help. I actually find after doing my exercises my symptoms are better.

A few other tidbits from reading the threads. I had been taking allergy shots (I had been taking them since I was 10…I am now 48) they caused my symptoms to be significantly worse and my allergy doctor and I agreed they were a trigger for my symptoms, so we agreed I would stop and just take an antihistimine which seems to work…although I still will get a headache from too much of whatever I am allergic to. For example a few weeks ago I was outside fixing our mailbox (we live in the country) and it was fall and lots of allergens in the air…I came in with a bad headache and congestion. My brother-in-law is a neurologist and he told me he tends to agree with the Neuro Otologists diagnosis given my symptoms and history and thinks the Nortriptilyne is the right drug. He also suggested I continue with the Vestibular Rehab since he has had good success with that with MAV sufferers.

I have many bad days which are getting better and better but they still depress me. I was very depressed yesterday since I never thought this would last until Thanksgiving. I feel better today and have decided to treat this as something that I will have to live with until gone, like my allergies and asthma.

I hope others can learn from my story. I never go to see a doctor without doing a lot of research now. I question them about any concerns I have and ask “stupid” questions if I have them. I push to understand the science since I want to be a part of my recovery. I find my Physical Therapist for Vestibular Rehab great…she is sympathetic and very knowledgeable.

I hope to be recovered soon, but have no idea when “soon” will be. I have been changed by this illness in many ways, the most telling is that I am much more sensitive to other people suffering than I used to be and kinder. I also admit that this illness has had some good things…I lost 30 pounds (I had wanted to lose 10 but got 30)…I eat very healthy now, exercise everyday, I got over a fear of flying that had haunted me for almost 30 years, my blood pressure and cholesterol are excellent…but to be honest I would give it all up to have avoided this.


Thank you for your post.

It is a very frustrating disease and when it hits all of sudden in our lives it changes us in many ways.

I like you have decided it is something I will have to live with but find a way to manage. Six months ago I would have never thought I would still be trying to determine what this was and how to “make it better” or go away.

From all I have read I do not think it will ever go away but can only be managed by trial and error. I look forward to the day my life can be somewhat “normal” again and I hope it is sooner than later.

I too have had the weight loss because I have changed my diet , (about 30 pounds)almost back to my school girl figure …lol. Although that is a positive but the disease is so bad at times I would love to just be normal and pudgy. :lol: