Possible Medications for Meniers?

Ears, nose and throat
1

Hi, I was diagnosed with Menieres about seven years ago. I spend many hours in bed or on the floor suffering from something that no one has a clear answer too. I also have the

associated ringing in my left ear. It was so loud at time I thought death was preferable.

I spent time with several doctors because I wanted another opinion. I found that most doctors know as much about Meniers as the internet. I felt totally alone and as most people here can agree, nobody can understand this unless they have experienced it first hand! 

        In the beginning I had vertigo that put me down literally for hours up to a full day. Then after about six months the ringing started, for me. So, after ready hours of articles trying to find an answer. I came across a study that was done on the assumption that Menieres might be caused by a virus, that causes the inner ear to swell. Now keep in mind this was a few years ago and I don't remember the exact words. It was a university study maybe John Hopkins? not sure sorry. But anyway, they used an antiviral and it did show promise but was not entirely conclusive. So, I asked my new doctor if I could try an antiviral for my Menieres. He looked and found the same article and said sure why not. Lets see what happens, he said he didn't see a risk for me. So he prescribed me Acyclovir 600 MG four times a day. To him that did seem quite high but we felt that to achieve a result under the circumstances we should see an improvement within three to six months. But I had to see him monthly for check ups.

   After three months I started noticing the pressure on my left side of my head had decreased, or less noticeable. I was gaining my weight back, from throwing up.

After six months there was no more vertigo episodes and the ringing in my left ear has gone from a ten to a one, barely noticeable.

   I would like to also add that my doctor prescribed me Paxil 20MG once a day to

calm my brain, helped with any anxiety which helped trigger attacks of vertigo.

My doctor also put me on a maintenance dose of Acyclovir. So I went from 2400 MG per day to 600MG per day.

   It's been around six years and no Vertigo and the ringing is sometimes non existent.

I'm not saying this is my cure or anyone else's. I'm saying this might be worth someone somewhere doing a study on. If this helps one person with Menieres it's worth it!

Thanks,  Ray

2

Thanks for sharing. Wish people would research this more. Hopefully someone will see your post and do just that. I'd gladly be a volunteer for research. 

Interesting you should say it's potentially caused by a virus. I actually wondered if the fact that I'd had Botox treatment 2 weeks before my initial outbreak was connected. Although Botox is obviously bacteria and not viral 

3

Dear Ray,

I'm so glad you've had such lasting relief from the Acyclovir!!  The first year I had MD, I read about the Acyclovir Protocol and  begged my ENT to put me on it.  He agreed to one month, but after one month, I had no results.  Ultimately, he referred me to a physician who believed in intratympanic steroids, and that has done the trick for me.  From what I understand, it often takes more than a month for Acyclovir to work and I have always wondered if I would have found relief if he'd agreed to let me stay on it for awhile. 

I agree that it's worthy of a significant study!

Thanks for sharing your success story!

Take good care,

J-

4

Thank you, I would also like to say that I was referred to a surgeon that could potentially help me. I had no idea what was coming, in his idea of a fix! Now I'm not saying this is word for word but here goes.

" I've done this hundreds of times. You will eventually return to me because you have given up all other remedies. I will basically start by cutting the balance nerve. There is a 50/50 chance that will do it. If not then I will essentially have to gut your ear and you will be deaf in that ear. But, there is an 80% chance that will do it. Unless its in both ears."

 I left his office and I really cried tears for a few minutes. Then I just said to myself. I was NOT born with this! SOMETHING is causing this! It has to be environmental, bacterial, viral, something I'm eating?

So I started trying anything EXCEPT the stuff they sell on the internet that says Menieres or Tinnitus Cure! I ran across the Acyclovir study and I believe that it has helped me personally. But it may not be the magic bullet, I don't know for sure.

    I really do understand the struggle and I appreciate your comment.  Ray

5

Thanks J, hopefully someone will finally come up with a cure. Anyone with MD knows the struggle!

Thanks again.  Ray

6

Same here. Aciclovir works for me. Ents and gps still hard to convince

7

so glad to hear you are symptom free. I have read so much on MD trying to find some help. just wondering for people who have had successful treatment with antiviral medication, do you maintain a low sodium diet also?