Dr Gacek and Cochlear Hydrops

Happy to report that it has now been since Saturday that my MM symptoms and headaches have fallen into the background of life. Still aware of the tinnitus and fluctuating hearing but overall much better whilst pushing the envelope too (Giants mania continues with a parade tomorrow). So good to have my energy back!!!! Wahoo!!!!

I decided to continue with the 2400 Mg of Acyclovir to see what another week does. I have been taking that divided into 4 doses a day. I just sent my MD a good news update, about my decision to continue the higher dosage and suggested that if my hearing hasn't improved, we give Gacek's favorite Valacyclovir a try and see if that flips the switch. See what happens….

I can now imagine a future I want to live

 

Great news! If when you do decrease and symptoms come back, go back up to 2400 mg for another 2 weeks or so then try again. Sometimes it takes longer before we can decrease w/o symptoms returning. It took me many months before I can get from 1200 mg to 800 mg maintenance dose. ( I chose to go from 1600 mg to 1200 mg instead of right to 800 mg) I just felt my MM was not ready to do such a drastic reduction. But I have been on 800 mg for about 1 year now.

 

Wonderful news, Holly! Yay!!

 

Wonderful Holly! Remember, there may/will be setbacks but keep forging ahead.

 

I had an interesting thing happen to me today that has my hopes up. I have been dealing with MM for 25 years - 10 years undiagnosed, 15 years diagnosed. And at least in the 15 years since I was diagnosed I have never been able to "pop" my bad ear when landing in an airplane. I always "valsalva" when coming down to relieve the pressure but only my good ear has ever popped. I am a fairly frequent flyer so I estimate landing in a plane over 200 times in the last 15 years. My right ear has never popped. So today when the plane began coming down in altitude I felt the familiar pain in my ears and I started to think about doing the valsalva when all of the sudden my bad ear let out a prolonged, squeaky, glorious pop. I did not even have to valsalva. The only change in my treatment is that I began taking 2400 mg daily of acyclovir 6 days ago. All because of this fantastic forum. I know I am not cured but for the first time in a very long time I feel hopeful. Thank you everyone and especially Solari.

 

Teesdale, that is so wonderful. Yay!!!

Santa, sorry about the wobbles today. It does seem like you are having more good days than you used to. I hope that is true and that it continues.

 

Focus on yourself getting better and you won't have time for the nervousness.

 

Hi Everyone!

WOW! I had a rather 'regular' weeklong run! Feeling good with very little MM symptoms at all! Been on JOH Regimen 100% for 8 weeks, acyclovir full dose for 4 weeks then switched to valacyclovir now for two weeks. Get a hearing test in a week to see what kind of hearing recovery I have. For sure, it is better since switching to the valacyclovir and I am not favoring my good ear all the time. I am soooo grateful for this site to get me on a good track of self empowerment!

I have had some other weird things show up since taking the valacyclovir but it might not be related at all. I can say one thing for sure is that any of it I would trade to avoid the malaise, tinnitus, fullness and hearing loss of MM.

I even hired a career coach to get me back in the marketplace. I think by early next year I will be stable enough to take on some responsibility other than my own damage controlled life!

Many Blessings!

 

Wonderful Holly! Good luck with embarking on a new career!

 

Thanks Vicki!

 

HollyFlo - that is great news. Isn't it amazing how we get to that point to appreciate such little things that we used to take for granted? I am happy that the a/v switched helped you. Good luck on your new career development.

 

enjoy!

 

Santa, have you tried allergy meds? I started taking them (Claritin) a couple weeks before JOH and it did seem to help with the fullness but not the tinnitus, distortions or hearing. I'm sorry because it is SO annoying.