My meniere story

Just wanted to provide an update and hopefully get people’s opinion.

Recap:
I am 31 and had probable Meniere’s disease since 7 years ago. I was mostly symptom free with two major relapses but was in remission for 6 years… until August of this year. I say probable Meniere’s because my hearing loss is high frequency.

This relapse, I started on valacyclovir, JoH and betahistine. Received 5 steroid injections. I was hopeful that I would be in remission again by this time. Howecer, my symptoms are persisting. Aural fullness, fluctuating hearing loss, vertigo attacks and daily imbalance even when I am not having attacks. My hearing loss and imbalance got slightly better since August but still affects me. Vertigo attacks are maybe 1 in 2-3 weeks but lately became a bit more frequent.

Compared to last two relapses, there are a few things that are different this time. My vertigo attacks are not as spinny as before. More often it is more severe dizziness but very little rotation. Also, I feel I am severely affected by the barometric pressure this time. In addition, it keeps bothering me that I went to an amusement park a week before the onset where I could have gotten barotrauma. I had ear pain for a week after the amusement park before all the symptoms of Meniere came back. Could it be perilymphatic fistula?

I am currently lost in terms of what I need to do further. I can’t keep my job if my symptoms dont get better. My neurotologist says I can get more steroid shots but is not offering anything more. He says it is too early for gentamicin or surgery.

My dose of valacylovir is currently 1000mg a day. I was on 3000 mg for 3 weeks then 2000 mg for 3 weeks. I was thinking if I should’ve been on 3000 mg this whole time.

Aside from barometric pressure and stress, I don’t have other definite triggers….

Any help or suggestions would be greatly appreciated.

 

Thanks for the reply. Yeah I barely eat any nuts although I don’t actively keep track of which food are high in arginine. I will try to do so now.

It is difficult to ask to go back to 3000mg as the doctor prescribed valacyclovir based on Dr. Gracek’s paper…. Maybe I will ask though.

Well I rode the usual roller coasters, fast drops and flume rides. There was no specific accident or injury that happened, but I started developing ear pain the day after going to the amusement park followed by Meniere’s symptoms a week after.

I do have GI issues as well, mainly IBS with diarrhea. I have been living with it for the most of my life.

No lung issues though.