Hello from the not so sunny UK. So I've had Hydrops for about 9 months but only recently diagnosed, my version = Fluctuating hearing loss, Fluctuating distortion, Fluctuating tinnitus, occasional fullness and finally occasional dizzies. The worst of which is the distortion! Isn't this illness the business!
To me it is the one you did not list. Vertigo. I hate it and just when I think it is gone its back. The hearing part and tinnitus is really tough too, but I have managed to make peace with the 24/7 tinnitus and worked around the hearing loss. As a matter of fact, the tinnitus stopped once for a minute and I started to freak out. It has become part of me. Dizziness is awful too. I just had a vertigo episode last night. The first one in a long time. Unpredictable, infuriating and scary. I always wonder, will it go away forever like it did 10 years ago or will it be back yet again? Soon or down the road? This web site is inspirational, educational and supportive. Good luck.
I guess all my symptoms are 'workable' whereas Vertigo.... well, i'm thankful I don't have this and worry every time I become dizzy. The worst part of this whole thing is the unpredictability, for example last week my hearing was in the 'Moderate' range with no distortion, tinnitus was only just noticeable then I wake up on Friday with screaming tinnitus and hearing in the 'Severe' range with full-on distortion. One odd feature of this crap is when I wake up in the morning my 'bad' ear doesn't work for about half an hour or so, it's almost as if I have fluid that needs to be drained before i can work - everyday I have this. Had anyone else had this symptom? I keep a daily record and there seems to be no real trigger for me. I've just started the JOH and antivirals regime so here's hoping....
Steve, your symptoms sound just like mine. And boy do i hear you on the distortion thing! So i am going to cut to the chase and tell you what worked for me. Antivirals, first. Antivirals got rid of the majority distortion and tinnitus. Allergy shots second. They seemed to come around and clean up what the antivirals left. Low sodium, diuretics and other standard treatments did nothing at all for me, in fact they tended to make it worse. I used acyclovir first prescribed by my family doctor (the specialists had told me there was no more they could do). I got what i thought was about 65% improvement but was still plagued with some fluctuations. Then i contacted Dr Derebery at House Ear Clinic in LA. She prescribed famvir and did allergy testing and shots. She said the allergies were not thought to be the cause of menieres or in our case, cochlear hydrops, but they exacerbated the symptoms. I am not a person you would typically think had allergies with sneezing etc. Anyway, i now have hearing consistently in th normal range after having had significant loss in the low frequencies, no tinnitus, NO DISTORTION, bascially none of my former symptoms. My hydrops arrived in June of 2007, i started antivirals and allergy shots mid 2008. It will take a few months to get the improvement and years to max stability if you are like me but the distortion was greatly relieved within weeks. Give it a try.
Thanks June. I've read a lot of the posts on here and have to admit that your symptoms are strikingly similar to mine, of course we're all unique and the 'one-size-fits-all' approach probably wont work. That being said, I'm hopeful and refuse to give up on that hope I've always had moderate loss in my left ear and a normal right ear which started to deteriorate a few years ago which was apparently due to ETD, yeah right! Fast forward to early this year I noticed things were distorting a little, then a lot then total. The ENT docs claim my sensorineural hearing loss is permanent which I simply do not buy into due to the fluctuating nature, for example last week I gained 30 db in 250, 500, 1k frequencies in one day! I have fluctuations like this all the time. The doctors have no explanation for this, nor any reasonable method of prevention. I'm currently using 2400mg 'Aciclovir' per day which I'm told is a generic form of acyclovir, I've not seen any noticeable results so far but I'm patient...
I always used generic. How long have you been using it? Do you spread the acyclovir throughout the day? That is very important with acyclovir. In the beginning, i thought i had etd and i think i did have some degree but my hearing loss was also sensorineural. And now it is gone. The interesting thing for me was that the inner ear type symptoms and the middle ear type symptoms came and went together. Somehow they were part and parcel of the same thing. I do not know how but they were. Hang in there. I think you will find improvement.
June, I'm taking 800 mg antivirals 3 times per day at roughly 6am, 12pm then 7pm. I'm coming to the end of the first week. Interestingly the improvements I mentioned earlier dropped like a stone the day after I started the antivirals, but this being what it is I don't link the two occurrences.
Oh, only a week. The first hint of improvement (distortion cutting in and out) didnt come til the 4rth and 5th days. And it wasnt for a month that i thought i was improved about 65%. The last 35% came gradually with the famvir and the allergy treatment over many months. But it was sooo worth it. Keep going!
June...Did you discuss with Dr. Derebery Famvir being superior to Valacyclovir? My Oto offered either. I took the Valacylovir since it seemed to have best recognition and reputation for those with CH or Meniere's. Just curious about which of these might be better for our condition. How much Famvir are you taking?
Dr Derebery told me in the beginning that she chose famvir to work with because it was reputed to be the best at crossing the blood brain barrier. I believe once she did say if i wanted to take acyclovir because of it being cheaper she was ok with that. I have always taken generics and famvir was affordable to me so that i what i went with. All the scripts she wrote for me were for famvir.
Morning June, I'm off to see my ENT in three weeks time and If I see no improvements would you recommend I try a different approach i.e. Famvir or Valacyclovir. At that point I'll have been on the acyclovir for 4 weeks. Thanks
What i was told was most people see some improvement in the first 4-6 weeks, not the first week. So i would say what my dr said, if you see any improvement in the first month, continue. As for the difference between the efficacy of the drugs i dont know. I got improvement with both acyclovir and famvir. Some here think valtrex works best but others cant tolerate valtrex because of side effects. My dr uses famvir but famvir may be more expensive. Some people's problems are not viral related and do not respond. For now kick back and relax and try to reduce any other source of stress in your body and see what happens between now and then. It is too soon to be thinking it is not working.
Hi Steve Its good that you have found your way to this forum. I'm also from the UK in Liverpool. I was never able to get hold of antivirals from the doctor or specialist. Is that were you obtained them or was it online. Too late for my hearing in one ear, well and truly gone but I'm very well and just look in here to keep updated and see if I can help anyone. Best of luck Frank
Hi Frank, I bought them from an online pharmacist which were then dispensed by a pharmacist in London. Surprisingly easy really. I haven't yet mentioned this to my ENT doctor, I will if I see an improvement to gauge her response. You mention one ear has gone, how long did it take for this to happen? Did you have massive fluctuations with progressively worse hearing after?
Hi Steve Hearing in my left ear disappeared over about 3 months which coincided with numerous extremely bad vertigo and vomiting attacks. Which I think makes sense as I believe with every attack you lose more hearing as more receptors are flattened in the inner ear. It went from good hearing to you could play heavy metal music in that ear and I wouldn't hear it, all within three months. I first noticed it when I was struggling on the phone. I am happy to settle for what I've got as the vertigo is one the worst things that are not life threatening to suffer from.
Frank, that's really rapid, were you diagnosed with MM or AIED type thing? I've gone from normal-severe (but fluctuates to moderate) in 6 months or so, and what a ride that has been.