new to the forum - 1 year of Menieres - any advice?

Hi, I'm new in the forum. I would like to tell you my history to see if anyone can give some advice. I really appreciate I am not from USA and in my country there is not much help for this disease.

I've suffering from vertigo attacks for about a year. However, my hearing loss started in 2013, with tinnitus and aural pressure. Those have been always there since the beginning of 2015. I am now 25 years old.

I had two attacks in March 2015. For the first one, I had been drinking the night before and my tinnitus and aural pressure was through the roof. However, the attack came past midnight when I was sleeping, lasted about 40 minutes and I had to vomit. The second one was 6 days after that, in the middle of a lecture at 9:00 am. This time, I didn't drink anything during the week. That time lasted 30 minutes. After the second attack, I started to think that the vertigo might had been related to my hearing problems. I went to my ENT (that I was seen since 2013), and she said that it was probably nothing (yeah I know, an ENT should know better).

I was fine (no vertigo, but always with bad hearing) for about 4 months. I had one more attack (again after midnight). December, 2015 was my far my worst month. I had about 1 bad attack per week (sometimes two), and I usually ended up vomiting. Then, I changed ENT and by this time I was pretty sure I had Menieres. I told the new ENT all story (I even showed him in chronological orden all my audiograms), told him about the pressure, the tinnitus and the vertigo spells. He told me that I probably had menieres and sent me to an otoneurologist for further examination. The new ENT did a VNG test, confirming uni-lateral menieres in my left ear.

First, the ENT tried to manage my vertigo using only a low salt diet and no alcohol. I tried that but it didn't work, I kept having spells every week ( to be true, I didn't was all that strict with the low-salt diet, no alcohol however). Then, he decided to put me on Betahistamine 16 mg three times per day. First two weeks I still had vertigo spells, that when I decided to really watch my salt intake, and I started to had success ).

Now, I usually get dizzy once or twice a week (feeling like floating, and I can walk in a straight line only if I make a real effort). I had some vertigo spells, but really short (5 minutes tops) but even if they are short, I feel dizzy afterwards for about 30 minutes. For what is worth, I tried taking 2400 mg of acyclovir for two weeks (with serc) and it didn't have any effect (still got dizzy sometimes, no major vertigo spells but no different that taking only serc).

I had some questions for the people here with more experience that me in this:

- Have anyone had success getting rid of the aural pressure? I don't know if serc will help, I've been taking it for about three months and don't notice any improvement in my tinnitus, aural pressure (the one that bothers me the most) and hearing.

- Do you have permanent aural pressure? It seem that for some people here is temporal.

- Do you feel that there is a delay between the trigger and the vertigo spells? I am pretty sure that my triggers are loud sound (I had one spell right in my ENT office during a hearing test), salt, sleeping and stress. However, I only once had my vertigo spell happen intermediately after the trigger (the one in my ENT office). I can eat really salty food, and be OK. However, if I do it two or three days in a row I am pretty sure I will feel dizzy or have a vertigo spell the day after. The same with loud sounds.

- Do you feel that acyclovir or valacyclovir improved your hearing, aural pressure or tinnitus? As I said I tried acyclovir for two weeks and didn't do anything. I don't know if valacyclovir would be more effective. Luckily, I can buy most medicines without a prescription in my country, but antivirals are quite expensive (I get serc through my insurance).

I'm sorry for the wall text, I don't know anyone that can relate with this illness. I know my symptoms are not the worse and I feel truly sorry for those of you who experience more frequent spells than me. I also apologize for the grammar mistakes you may encounter, since English is not my first language. Hope you are having a dizzy free weekend.

 

Thanks Vicky. It seems I have many of the symptoms of MAV. I'll research more into it and talk to my current ENT.