Hi, Well, I saw my Neuro-ent yesterday and he was 'thrilled' as I am, that I've had 'no vertigo' since 2012 when I had endolymphatic surgery on one ear. I told him that is really 'great'----BUT, why am I still so very dizzy on a daily basis? He said this is a 'wicked' condition--and some people are more affected with it than others. I told him I am learning to 'deal with it'--meaning I 'go on' with life, but that on a scale of 1-10, I fall into the 4 to 7 category most days and once in awhile a bit lower, but more often even higher and the only thing to do is lie down awhile. I am 'dizzy free' when I lie down or recline in my recliner. Sometimes I'm so wiped out from the dizziness, I fall asleep. Then within 30 mins. of being 'upright' I'm dizzy again. Not just dizzy, but head pressure and ear fullness and tinnitus--though the tinnitus has not gone back to the mind blowing kind I had at the onset of all this. I see him in a year, and he said he wishes he had more to offer and if anything does 'come along' to aid in these symptoms, he'll certainly share them with me. He doesn't believe in the effectiveness of anti-virals, so I contacted Dr. Gacek--tried them for awhile--no results at all! So, for me, it's a daily 'up and down' symptom variety thing. Nausea comes and that is the main thing that can really dampen my 'keeping on' but when it passes, I just deal with the dizziness--like everyone else here. So glad many of you have good luck with anti-virals, and other types of treatments--maybe one day the real 'answer/treatment/etc.' will come along. Until there--hang in there--
In regard to the antivirals, how long was "for a while...?" It can sometimes take several months before these are able to suppress viral activity and allow inner ear tissues to begin to heal and function normally. Same is true with l-lysine. --John of Ohio
I have asked this before but no reply. How does one know that one particular AV isn't working and lobby to change to an alternative AV vs AV's not working period? Any guildline based upon experience John?
To both--I took them for 3 weeks--and Dr. Gacek told me to discontinue taking them. He said if I didn't have vertigo, evidently the anti-virals were not helping my dizziness. Anyway, so glad they help so many. It's like any other medications though--some help folks, others hurt them, and others do absolutely nothing.
That's so great that you've been vertigo-free that long, but that dizziness does sound wearing. Have you tried the sea bands yet? Not really a cure, but when I'm dizzy and nauseous they really help take the edge off for me.
I wonder why Dr Gacek thinks 3 weeks is long enough? Since the side effects are minimal and so many people have not gotten good results until 4-6 months, why stop taking them? And, so many have said that even after they have found relief of some kind they still take a maintenance dose.
Yanksgirl - Your first post on this topic resonated with me. I can identify about retreating to the recliner and being wiped out. However, I'm not dealing well with all this as it has been an extremely limiting malady that has changed my life, and not for the better.
These: http://www.sea-band.com/ Wonderful little things! And they look sporty, too. I think they are sold at drug stores. We got ours a long time ago for carsickness.
Tried the seabands--didn't work! I have heard they help some folks though--which just goes back to what I mentioned. Some things help some folks, when the same things either don't work at all or actually make some worse! I guess that just means we are all 'individual' in our 'Gene pool' and invironment, etc.
The quality of life limitations are the hardest to adjust to. I've gone the circle a few times of getting really depressed (tried various anti-dep.) and now just take low dose Xanax to help over the really rough spots. Finally, I know that if it's not going to change--then I have to 'change' how I let it affect me. Not easy and don't think I'm 'there yet'! But I'm trying, Marion. That's all we can do--is look for the good and focus on that and deal with this as it comes and pray for strength to deal with it the best we can.
First day home after endolemphatic shunt surgery , I'm in quite a bit of pain even while taking meds 30 min early.ear feels a little full and the weather doesn't feel like its helping! Applying ice packs now, is there any thing I can do for the pain and fullness? Vertigo and headaches are gone! :-X
Well, I know this isn't much comfort, but I had virtually 'no pain', just a very 'shut off' feeling for days. I did, however, have vertigo--mild--but there the next week or so. That was 2 years ago--nearly 3 now. No vertigo, sometimes a sense of my head giving a 'quick spin' inside the cranial area--but it passes. I do however have this ongoing dizziness I posted here and that is my big problem now. Tinnitus is there but not mind blowing like in the past. And the best is--no vertigo! I do hope your pain eases and your vertigo is 'gone' and that you don't have the ongoing dizziness. Keep us posted.