I saw Dr. Lange 2011, who found evidence of vestibular damage on the R on physical exam, but who wouldn't make recommendations until my vestib testing was done, which took until 2013, when I was quite stable and all was normal (besides the hearing loss). Now I'm having vertigo attacks again, changes in my tinnitus, and feeling off balance even between vertigos. Normal brain MRI x 2 back then. It's going to be 9 months before I can see her again. So, I'm trying to decide whether to push my Family Doc to try antivirals like Famvir, or wait and see, or get aggressive and try to go to the US. If there is a treatment, is it important to get it ASAP to help maintain my hearing and balance? Or are the vertigo attacks just miserable but not necessarily causing damage? Open to your advice and opinions! Thanks!
One answer, from Dynamed: "recurrent attacks can lead to persistent and worsening hearing loss, and eventually severe sensorineural hearing loss affecting all frequencies"
I got most of my hearing restored with antivirals and allergy treatment. I didnt try them til 9 months into the disorder. I have long thought if I had tried antivirals right ith my first symptoms I might have been truly cured. Of course, I don't know for sure.
June, Did you have any particular symptoms/hints that made you or your doctor suspect allergy or viral involvement? For allergy treatment, did you just take medications (which, if any?), or did you treat with elimination diety?
I do think it matters to try to get this thing fixed ASAP. I do a hearing test everyday and track it. When my MD symptoms were at a minimum in the spring of 2013, my low frequency hearing was at a reasonable level, let's say "14" on my test (Great would be 17 but even my good ear was 15 or 16). Then I had a summer of vertigo attacks and bad, fluctuation symptoms. Now, spring of 2014, my symptoms are minimal, but the hearing has only recovered to a 12, so far. I am pretty sure that long lasting damage was done by the attacks. I read your other thread AnneT and I would recommend being your own doctor or getting yourself down to House. I would not wait another day for the pokey Canadian health care system. Feel free to email me.
Re allergy, I had allergy testing and have taken shots for 6 years now. As for antivirals, I had had a bad case of cmv mono the year before. All mono is from herpes viruses. My oto had told me there was nothing more he could do to help me and I was losing my hearing in my only hearing ear. I had read on this forum that a half a dozen people on this forum thought they had been cured by antivirals. I told this to my family dr. She had long suspected that a virus was involved because as she told me, 'if a mother has cmv, the baby can be born deaf ..'. I was afraid to try antivirals but she saw little risk so I tried them and they eliminated the distortion I had suffered from. My symptoms flared up again in allergy season so I went to Dr Derebery at House Ear in LA who I had read about here as well. She took it the rest of the way.
Thanks Donamo and June. Miracle of miracles, I'm seeing Dr. Lange at the Vertigo Clinic this Thursday!! Maybe it scared them that I've got pulsatile tinnitus right now. I also know now to get Dr. Lange's letter to my family doc - much better communication on paper in person. I'll give it a chance, but it is reassuring to know there is the House Clinic as backup.
the only answer I am getting from my Doctors are to go to Vestibular Rehab.... I had to beg them for anti vertigo meds.
LOL - Do I feel silly!! After trashing the Canadian socialist health care system and telling you to be your own doctor, I find out you are one!! Anyway, my advice stands!
Donamo, no worries! I didn't even think about it - I am definitely here as a patient! And I agree with your advice. Can I ask, what recommendations/diagnosis did House Clinic give you? I saw Dr. L today. Hearing (r) is much worse She gave me some names of meds to consider for preventing the migraine component, and a super-antinauseant for the vertigo attacks. She doesn't have much hope of my hearing improving or even stabilizing. She did ask about recent viral illnesses (none) or autoimmune disorders (history of hypothyroid), but she didn't offer antivirals or prednisone. Just more vestib testing, oh yay. She was dismissive of my efforts to get off caffeine ("If it worked, everyone would do it.") Sigh.
Since you are a doctor (right?), could you make a trip to House to see Dr Derebery once or twice on your own dime? I have a feeling you might learn what you need to know and would have access to the treatments once you got home. Nothing exotic really going on I dont think. Dr D has had a good deal of experience with antivirals in treatment of MM and I think her description of her clinical experience and trials might be more encouraging to you than the way the abstracts read. It is surprisingly easy and quick to get an apt with her. I sent a 1 page letter outlining my history and enclosed copies of audiograms, mri, other tests etc. She called me a few weeks later and a month after that I was in LA. She answers questions freely though she doesnt chit chat a lot. Why not? LA can be interesting place to visit too, something that surprised me every bit as much as the med success I found there.
June: Wow, six years on allergy shots? What is your doc's explanation? I have always heard that they either work or they don't within 3-4 years, and you stop them. I've been on them 3 years and my doc insists that they're helping, but I still have allergic sinus flareups. Bless all, Ron
In examining the many dozens of accounts from users of my treatment regimen that I've received (emailings and postings)(http://www.zoominternet.net/~kcshop/JOH.pdf), it is very clear that the sooner treatment for MM symptoms begins, the better the chances for success. Those who begin treatments --- of all forms, not just mine --- soon after symptoms appear, have a much, much greater chance of successfully suppressing them. Those who initiate treatments many years after symptoms appear, are less likely to gain relief. --John of Ohio
They did work for me, Ron. I would say I started to see improvement within the first year and it continued to get better for another year. From that point on I have had undistorted hearing and an audiogram in the normal range though not as pristine as before hydrops. The allergist told me she would like to see me get 5-7 years of shots and since she was a miracle worker for me, I go with her recommendation. I have read several accounts of people who took shots for months and then discontinued and had symptoms return.
I agree with JOH from posts I have read too, but I need to add I have MM for 48 years and on the 47th year started acyclovir and been vertigo free ever since and very few if any dizzy spells, but I do not have hearing loss due to MM but if I did I am so not sure if that could have helped hearing loss after all those years.