Thank you for sharing your story. You are a strong and thoughtful woman who, no doubt, will inspire others and give them hope. Where can I find your blog?
I associate the fullness with distortion. The fuller my ear feels, the more distorted everything sounds. Do people have fullness without it affecting their hearing?
I don’t have distortion. Mine reminds me of the fullness you get from swimming and having water get in your ear. My fullness fluctuates. Some mornings when I wake up and sit on the edge of the bed, my ear feels normal, but not long after getting up it starts to get stuffy. I can lie down for awhile and the fullness seems to get better. Get back up and the cycle repeats. It’s just crazy!
Exactly which symptoms you have such as distortion, vertigo etc depends on exactly which part of the tiny inner ear the disease resides in. It can be more on the hearing part, more in the balance area or both. Distortion was my most hated symptom but i did not have full blown vertigo. I did have some balance issues.
June, forgive me as I know you have answered this before, but how long did it take you to have healing? I know you were on antivirals for awhile and took allergy shots. At what point did you or your doctor decide to stop the antivirals? I am still taking 2000mg of Valtrex in case it is hydrops that my ENT prescribed and 30mg of Nortriptyline that my Neurotologist prescribed for a migraine variant. I am also now taking allergy shots. It seems I am highly allergic to molds and some grasses and some trees. I even tested slightly allergic to sesame. I am beginning to really see improvement. Yesterday was a pretty good day, but today the fullness seems a little worse. I think rain is moving in. I have noticed weather plays a role, but it plays a role in the migraine variant as well. I wish I had definite diagnosis, but I am continuing to treat my fullness like I have hydrops by taking the antivirals and eating under 2g of sodium. I was just curious as to when and why you stopped the antivirals? Praying I have success like you did!
Weather was really a factor for me too. Honestly, this was 2008. My family doctor was just winging it based on what i had read here about success with acyclovir and her gut that i had a virus issue. She prescribed them for 6-8 weeks. I definitely knew they were working for me mostly with distortion and tinnitus. I read about dr derebery here and someone said she prescribed antivirals so that is why i went to CA to see her. She had had success especially with hearing with antivirals. She liked famvir so i switched to that maybe for three months more. My hearing was not completely fixed but much better. From then on i was mostly just taking the allergy shots which i took for 8 or 9 years. I would say it was about the 4 or 5 year mark when i felt cured although i dont like to use that word. Allergy treatment for me was very gradual but i think it was a big factor. I learned by accidnt that grasses (stable hay, golf courses, baking bread with whole wheat flour) were big triggers. Truthfully there was a lot of experimentation and hit or miss which my doctors readily admitted but were ok with as was i. It worked in the end. Good luck, if something seems to be working i would stick with it, especially the allergy shots. I do not know if my setbacks were corrected by a months dose of antivirals or if they would have corrected on their own. I do not know if i would have gotten better quicker if i hd taken antivirals nonstop for a year or not.
Thank you June! I had posted a reply but it timed out! Thank you for the encouragement and your faithfulness to this board.
Thank you. Without this board i would never have heard about antivirals, never have know allergy treatment might help and never would have heard of dr derebery. Since i have only one functional ear and it was going bad fast, i would have progressed to no useful hearing or balance and been cursed with 24/7 very loud tinnitus and distortions. So i owe a whole lot to Ray and the members of this board who gave me the tips that panned out in the end. I hope to repay that because needless suffering is just well, needless.
I have a similar experience. Many times I actually feel pretty good when I very first get up but then the pressure gets worse and worse as the day wears on. It tends to be the worst around dinner time. Then when I am finally done for the day and am able to sit down and rest, it gets better after a while. Before this latest flare, when I was feeling normal, I would go to the gym after dinner. I can't even think about doing that now.