I'm on the initial dose (3 grams/day) of valacyclovir, a few days past 3 weeks. I have a hearing test scheduled Tuesday. My ENT gave me the okay to keep going past the 3 weeks with the 3 grams/day so we could capture what has happened on this dosage at the hearing test. My hearing has certainly improved over the pre-anti-viral days and since my last hearing test. But I am worrying because today my ear is more stuffed and my tinnitus is louder than it has been for a couple weeks. I don't know why. Maybe allergies. Maybe I'm fighting off the cold my son had. I am so nervous about this hearing test. It feels very important that the test goes well so that the doctor will keep prescribing, and I will be able to keep getting the AVs at an affordable price. I'm afraid that this stuffy ear and increased tinnitus is a precursor to a dip in hearing. Obviously, I can't control any of this. I just wish the test had been last week. It's funny though--if I had reduced the dosage, I'd think this increase in symptoms was due to the reduced dosage. Not particularly looking for any advice, just more relating this to people who might understand.
Hi by the Bay. I can appreciate what your going through. I had a hearing test recently and will get a hearing aid in a few weeks. Tinnitus has been constantly loud, and my ears very full. I've also been trying to figure out what has triggered vestibular symptoms I haven't had in a few years. Chronic migraine has been my ongoing problem. Then, a few weeks ago I started to have vestibular migraines, along with chronic dizziness, and the increase in tinnitus. I thought I was finished with all that. I had forgotten how disruptive these symptoms are to one's life. I don't know anyone else going through this to talk to. My friends and family are supportive and empathetic, but it is helpful to communicate with other people who know.
Thanks, Laney. It is so disruptive. I don't think others who are not going through this can really grasp that. In case it helps, I want to ask: Have you tried the anti-virals yet? They help a lot of us. They are certainly helping me with hearing, tinnitus, and fullness. With the vertigo, I found for me it was not from Meniere's, but from Migraine-Associated-Vertigo triggered by eyestrain (new glasses and computer glasses helped tremendously, but you'd have to figure out what your triggers are) and also from BPPV--the Epley maneuver took care of that. I'm amazed how much I've figured out--with a lot of help.
Hi Laney and bytheBay, I can so relate to your concerns. Since starting the JOH regimen (3 weeks in) and 10 days on Acyclovir, I am having consistently bad ear days. I think I recall reading that this can happen and not to expect quick results nor linear ones. The fullness, roaring/racket and hearing loss are unbearable at times and the worst they've ever been :-( I feel caught between this setback and the impulse to now request anti fungal drugs for my itchy ear too but fear my MD will gawk and not be so cooperative as she's been. Not sure where esle I could look for the allergy and fungal investigation-treatments. Any suggstions from others? Holding you in love.
For sure when I am fighting a cold or my allergy-like symptoms it can impact my ear. If you are still feeling bad I would ask that the test be rescheduled for a week because you are not feeling well. Give your ear time to settle. Good luck. Also, know that Dr Gacek told me that improvement in hearing for testing he believes is directly related to how quickly the a/v are started versus if the loss has been in place for a while.
If I noticed my hearing loss 15 months ago, which was recovered 100% after the first round of prendisone, then my MM was diagnosed recently with hearing no recovering much, was might that mean nicmger? What does 'awile' mean? Do you have any sense of this?
bytheBay, Funny you should ask if I've ever tried anti-virals. This past summer I've been on them a few times for shingles outbreaks. So I do have some left and also 2 refills remaining. I'll try this since I don't see the doctor for a few weeks. I'll be curious to see what effect it has on my symptoms. I also have had difficulties with eyesight, and focusing my eyes. Reading has been a struggle. I thought maybe it was due to migraines. Had an eye exam. Eyesight had not changed much. Eyes were healthy. Got new glasses & contacts. But even so, I've been struggling with reading. Eyes watering, vision blurry, constantly having to focus. BUT, this doesn't happen all the time. Crazy. It's driving me crazy!
Laney, back in April I had a 3-4 week period where I was always off balance, my eyes were constantly shifting back/forth (which made me sick to my stomach) - Meclizine worked for me to settle that part down. And Meclizine is available over the counter. Also, my eyes in general are very sensitive. If they get dry my vision becomes very blurry; exposed to too much smoke/dust, etc they are watery/itchy. Eye drops (not visine) help.
I don't know the specifics of time most likely it varies by the extent of the destruction. But can tell you that my hearing was bad for over 2 yrs with only one tone remaining in perfect hearing range. Then before I started the a/v even that one tone had been impacted. 2 months after starting the a/v the one tone was back to perfect range and the other lower registers had improved slightly as well. Not perfect but I'll take it!
Holly, remember that it sometimes takes months to see any real improvement.,do not get discouraged. I love to read and like to spend time on the computer. I had noticed that a lot of reading would affect my vision. Also my cognitive abilities. There should be a comprehensive post on cognitive a billies affected in the database. Now that I think about it, someone may have reposted it on the new board. All you have to do is search it out.
I'm not feeling as bad anymore, and I'm pretty sure my hearing is better than when I took the last test. (I'd say I'm sure, but with this disease--who knows), so I think unless things get bad tomorrow I'll keep it, but it is good to remember that I could cancel. Also, could you (or someone else) say that last bit about what Dr. Gacek said about hearing another way? I've read it a bunch of times, and I am just not getting it. I am very curious! Thanks for chiming in, everyone.
I think you mean what is said in Gacek's summary, correct? The key impressions I got revolve around "not known" ??? Maybe someone else gets a different read. Could be my mood.
Well, I woke up feeling stuffy again, even in my "good" ear. I equivocated some, but decided to go. It is such a long wait to get audiology appointments, and I was pretty sure I was better than at the last test...so I went, and I am so glad I did. I do now have a documented hearing improvement. My speech recognition in my left ("bad") ear was 92%!! That was up from 56-68% in July. All the numbers were better. One number--at 4000 Hz, was even touching the normal zone. Feeling relieved and hopeful!!