I don't want to keep dragging this out but the above from sjw has me thinking that perhaps different stages (or progressions) of the disease require different treatments. When I started on JOH in January, 2009 I had the 4 symptoms of "classic" Menieres: Vertigo, Fullness, Tinnitus, and hearing loss. Starting on 17 March 2009 JOH took care of everything but the tinnitus and I was happy! Now, after gradually falling off the JOH regimen over the last couple of years, everything is back except the Vertigo which has been replaced with dizziness or chronic disequilibrium. I've been back full fledged on JOH since 15 September so if I follow a similar path that I did the first time I tried JOH I should start feeling better any time now. Today, feeling better just seems like it is a long way off. To my point: Suppressing the virus, thus preventing the hydrops from forming, relieves you of the symptoms. But, if you had the symptoms for years (26 in my case) and suffered hundreds of episodes, is it possible that the balance nerve is damaged and even if you suppress the virus and hydrops it will continue to send faulty signals to the brain perhaps only leaving you with Gent or VNS as an avenue of relief? I believe I have read on this site that you can have the balance nerve "tested" and that they can even tell you what % of degradation you have. Any help is greatly appreciated.
teasdale....lots in your message. yes and no with some things. a few comments. Most important is to be under the good care of a proactive care provider who specializes in your illness. Also remember that there is no such thing a damaged balance nerve (or hearing nerve which term is often used incorrectly) unless there is a tumor on it or has had trauma of some sort. What is damaged are the receptor endings or cells that float in a suspended state inside a liquid filled chamber. This is true of both balance (semi circular canals) and hearing (the snail looking part....cochlear). So they are really fragile teenie parts. But its where analog is changed over to digital. So if for whatever reason....after years of any therapy....you continue to have spells or chronic dizziness then most likely its coming from damaged cells and until the vestibular misinformation is stopped you will continue to be dizzy. Once damaged they can't get better...unlike birds who regenerate these cells. So in a sense you are correct that anything you do to prevent damage and its no longer working....maybe....perhaps....no longer applicable or good therapy for you. But that is for you and your doc to decide. Well how do you stop the signal....thats usually starts will killing it off....gent, strep, often first in very low doses. The higher doses if needed to destroy the signal fully. Often a patient can keep hearing with this treatment. if that does not work then of course you can absoluately get it to stop with a laby. If there is no misinformation to the brain then you can't have a spin. But by far best to have a good other ear on that. Plus you lose your hearing in the surgical ear. Some try to save the cochlear for future implantation but usually does not work as the surgical site fills with bone mass over time. So other docs don't try to save it for that reason. Always remembering how tiny this space is they are working. All under microscope....size of a pea. On testing the gold standard is rotary chair but that does not identify the offending ear....but balance overall. Clinical evaluation with headshake and vibration tell a lot. and of course ice water caloric. You will know real fast what you have with that. Sometimes people test out with a pretty dead vestibular funciton using clinical critieria. If that is the case then plus your hearing is shot then nothing to lose to kill it off. so again its a doc thing. Nuff rambling. I will leave you be. Sorry for the long reply and no spell check. . Peace s
sjw, no need to apologize for the long reply. Once again you have been extremely helpful. I stopped seeing the oto at Jefferson Hospital in Philly a few years ago and have been going to an ENT but I think she cannot help beyond the steroid injections she has already given me. I just heard a good endorsement for a specialist at University of Pennsylvania so I think I will make an appointment to see him. But my mail order "improved" valacyclovir is on its way so I will give that a chance before exploring any destructive methods.
This seems to be the thread that dizziness itself is discussed. So just adding this morsel. I always struggle to describe (to myself and others) what it is that I'm actually feeling with my daily dizziness. If you say "dizzy" people wonder why you don't act/seem dizzy. So if they ask further, I'll say "I'm dizzy in my head." Which seems about right. Anyway, I came across this list from the Cleveland Clinic, and noticed the word "woozy". And they even added a parenthesis to it, that reflected what I said above. I've always been reluctant to use the word "woozy". For the same reason most guys don't call their stomach their tummy. It sounds like something little girls say. But dammit, I just might start saying I'm woozy. But really, as can be seen from the defs below, for our purposes woozy is just another word for dizzy. Woozy: Oxford: Unsteady, dizzy, or dazed. Webster's: affected with dizziness, mild nausea, or weakness Dictionary.com: physically out of sorts, as with dizziness, faintness, or slight nausea: P.S. MedicineNet: Dizziness is a medically indistinct term which laypersons use to describe a variety of conditions ranging from lightheadedness, unsteadiness to vertigo. funny
This exactly right. Dizziness is somewhat easy to contain. With vertigo,you have no control. Everything spins and you are rendered helpless. Most people can't understand this. They think vertigo is something that can be dealt with like dizziness or pain. Not true. I believe pain and dizziness are just mild annoyances next to vertigo.
For sure. There is dizzy and there is spinning. Personally I wish the word vertigo was never invented, because regular people don't relate to the word. And regular people matter most. Because they are 90% of society. Everyone knows what spinning means. Vertigo is like some fancy French word that just confuses people. Spin! Everyone gets the meaning. We freaking SPIN sometimes. What the f*** is vertigo????? Seriously I don't know why we need such a pretentious term for spinning. It's like hors d'oeuvres. Just a needlessly effortful, pretentious term for snacks! I am feisty tonight!
The way I describe it to people is that when I'm dizzy I can still walk, albeit very slowly and not necessarily in a straight line. When I have vertigo, if I'm not holding on to something I can't take more than three steps without falling down.
Its all semantics really, I get the same responses when I tell someone about my issues. "Oh yeah, I get dizzy too," is an all too common response. I just smile and nod my head, it's useless to try to explain to them what the difference is and why this is so much more serious. I mean, I get "dizzy" too, and the dizziness is often a precursor to vertigo, but the vertigo is what disables me.
I had vertigo--really intense and often until I had the vestibular 'shunt' surgery in 2012. No more vertigo after about 2 weeks post op. Dr. assured me the vertigo would 'not' come back. It's Dec. 2018 and so far he has been right! The bad news is I've gotten steadily intense lightheadness that is present when I'm 'upright'! I can be milder at times but for the most it's daily and intense. When I approached my Ent/neuro doctor, about it getting 'clogged' and maybe I was going to get vertigo again--he assured me that wasn't going to happen--however, followed with 'you don't want it to clog'! Making me think--why would he say that if someone he knew of or one of his patient's had maybe had that happen. He said I'd have really intense vertigo--and that's not happened--so far. He told me to take 1/2 Valium at bedtime and nothing else--and all it did was help me sleep a bit better but caused awful dreams--nightmares, really. So, had to stop that. I feel like I need to just 'sleep' this problem gets so bad at times. I keep on keeping on--but it's sure a real problem that doctor's 'lump' into either meds, one's anxiety, depression or just say it's part of Meniere's. No way to address it really. I get busy and try to not let it keep me from doing things but somedays are more difficult than others. Hoping I'm not heading for 'vertigo'. That's in the back of my mind when it's really intense. Things are moving--just my head feeling like it weighs a ton and I have to move it and myself slowly when walking. I can drive--because you're not trying to balance doint that--it's when you are actually moving around walking--etc. that it's harder to deal with. No fun for sure. Yanksgirl
“Dizzy” is a general term, not specific. “Lightheaded” is that feeling of getting up too quickly, or out of a hot tub - usually associated with low blood pressure or low blood perfusion to the brain. Lots of causes - anemia, bleeding, heart problems, not eating or drinking enough, hot day etc. “Vertigo” is the sensation that either we or our surroundings are actually spinning. Usual cause - inner ear, vestibular nerve or balance centres in the brain being wonky for some reason.