This is weird...but then..what isn't with this disease?

Discussion in 'Your Living Room' started by msprygada, Mar 6, 2014.

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  1. msprygada

    msprygada New Member

    I am on day 15 of my AV’s and I have been taking lemon bioflavonoids and Vinpocetine along with it. Every day I wake up as soon as I open my eyes I evaluate my condition. Are the pills working? How bad is the tinnitus? How bad is the fullness? Do I feel lightheaded? Seems like the last week or so I wake up feeling great where on a 1 to 10 scale my tinnitus is like a 1, my pressure is like a 1 or zero, and lightheadedness is 1 or zero but ramps up as the day progresses to say 5's or so.

    So today I wake up and I open my eyes and I would say my tinnitus is at a 1, barely can hear it. Pressure is zero as is lightheadedness. Since the house is quiet I don’t notice any sound sensitivity. I am thinking that today is the day that the AV’s and other stuff is working. I get up eat breakfast and I am having a great morning. I can actually say I almost feel normal. Then after eating breakfast (20 minutes) I go and shave and as I am shaving and as my vertical strokes are moving from the center of my face out towards my bad ear, the tinnitus and pressure increase with each stroke that is getting closer to my bad ear. I am thinking this is because I hear the noise of the razor dragging on the skin and cutting whiskers in my ear? When I am done shaving my tinnitus and pressure is now about a 2. I drove to work which is about 20 minutes in a noisy car and I now I would say both are a 3. Not bad, but not as joyful as when I woke up. It seems to stay like this until the next day.

    I find this weird. It is almost like if I stayed in a really quiet environment that the tinnitus and pressure would stay nonexistent.

    Anyone ever heard of this? I feel like Sherlock Homes these days. Looking for clues to answers.......I have the urge to get a pipe....... ;D

    Hope you all are having a great day.
     
  2. hastone

    hastone New Member

    I go through just about the same thing. My symptoms are least noticeable when I first wake up, but usually start to increase within a couple hours. By lunch time it is interfering with my ability to hear speech. Sounds like a busted speaker. Most days I get some cardio exercise at lunch. That helps settle things down for a couple hours, but by the time I leave work at 5 things have usually flared back up. Go home eat supper, and things generally calm down some before bed. To be clear, the symptoms I am referring to are tinnitus, fullness, and distortion.

    Maybe it has to do with fluid buildup in the body... I have tried diuretics, but still go through the same experience when on them. Anyone figured this out yet?

    Currently taking Valacyclovir 3G/day, and full JOH regimen.

    God bless,
    Hal
     
  3. msprygada

    msprygada New Member

    Yup....mine sounds the same but never any vertigo. How long have you been on your AV's?
     
  4. Vicki615

    Vicki615 New Member

    Or it may be noise induced. Noise was a big factor for me and my MM and still is pertaining to my tinnitus.
     
  5. bubbagump

    bubbagump New Member

    what the medical community really should do is STOP calling this stupid thing Meniere's, especially since nobody knows how to define Meniere's. If we have vertigo just say vertigo, hearing loss just call it hearing loss. Tinnitus? 10's of millions of people have it, no big deal. Or just call it allergies of the inner ears, because that's probably what it is anyway. Because we are diagnosed this terrible disease called "Meniere's", there's constant anxiety and emotional pressure and stress, and that makes everything even MUCH worse.
     
  6. Intrepid

    Intrepid New Member

    My T is the loudest when I open my eyes first thing in the morning. It's screaming loud then it adjusts as the day goes by or maybe drowned out by other noises.
     
  7. yanksgirl

    yanksgirl New Member

    Well, I emailed Dr. Gacek and he emailed me back--telling me evidently I was a 'non-responder' to AV's! I had told him for 2 weeks now on them I am so much more dizzy and hearing is distorted and tinnitus (which I hardly had before the AV's) is worse. I asked him if I should continue the AV's and told him my doctor would not prescribe them again if when they are gone I'm not better. He said that I was either, as I said above--a 'non responder' or my dizziness was not caused by a virus. Now I'm a bit confused! I emailed him back saying I'd been tested for everything else--and that many here have also taken awhile to get past the side affects. So--I told him I'm going to continue the AV's until they are gone, just so I can say I gave it my best shot. I asked him if something other than 'a virus' can cause this? Like it's always said, it's 'auto-immune' type of thing and in many cases inherited--my Mother had it! Just wanted to share this here--hope several see it and can comment. I do hope I hear back from him. He has helped so many folks and I know he will continue to. A truly caring doctor. :)
     
  8. hastone

    hastone New Member

    Started 11/1/13. Took a good 8 weeks of 3g/day before noticeable relief, which was about the end of December. Went for 36 consecutive days with little to no symptoms, then I developed a sinus infection and they slowly came back. I had gone down to two 2G/day during the good period, so I jumped back up to 3G and been there ever since, which was 1/31/14. Some relief again starting 2/21/14, but I'm still pounding it with 3g/day. Still going through the scenario I described earlier, just not as severe.

    I have had vertigo a dizziness in the past, but no episodes since starting the AV.

    If your doc will prescribe them for you give it a shot.

    God bless,
    Hal
     
  9. Vicki615

    Vicki615 New Member

    Meneire's is defined, afaik, the cure isn't, since Meniere's and it's symptoms can be caused by a number of things. Vertigo is a symptom not a disease and many things other than Meniere's can cause vertigo.

    It's kind of like allergies. Allergies is a broad term and people have different symptoms from allergies and different causes of allergies.
     
  10. msprygada

    msprygada New Member

    I am on AV's now...but my ENT only prescribed to scripts for 63 pills. 21 days of 3/day. 21 days of 2/day. And 21 days of 1/day. I have an appointment to see him in 3 months but that leaves me without AV's for 31 days. If the AV's are working at the end of the second script, I will either go to the family doctor and get if I can a script or start taking Lysine. Not even sure if the ENT will give me more AV's even if I tell him they are working. Will see how this all plays out.
     
  11. GLA

    GLA New Member

    I know that bringing up his name seems to stir controversy around here, but you might think about contacting Stephen Spring. I'm probably going to start AVs soon, and if they don't do the trick, he'll probably be my next call. I believe his theory is more geared toward MM being auto-immune.

    My family and I believe my grandfather had MM (had balance issues and hearing loss), although he was never diagnosed. His GP told him he thought he picked up a parasite while in the Pacific during WWII. So it wouldn't surprise me in the least if my MM is a result of a genetic auto-immune problem.
     
  12. msprygada

    msprygada New Member

    The more I think about this the more this has got me wondering as well. Is it possible that I only have a bad case of tinnitus and have symptoms of distorted sound, fullness in the ears, and lightheadedness, but never have vertigo? Is it possible to really diagnosed with MD and never have vertigo?

    Inquiring minds want to know....
     
  13. GLA

    GLA New Member

    FWIW, my ENT/Neurotologist diagnosed me as bilateral 12-13 years ago, and I've never had vertigo while my left ear (2nd ear diagnosed) is flared up. Only hearing fluctuations, tinnitus, fullness, etc.
     
  14. Vicki615

    Vicki615 New Member

    This a taken from a post on the forums by angrychicken I think it was. I saved it in a notepad, it had a lot of valuable information about his visit with Dr. Gacek.

    This is how Dr. Gacek explains it:

    • The different forms of the disease depend on which end of the nerve they are active on - if the virus is active on the “brain end” you suffer from the vertigo without the hearing loss. If it is active on the other end you suffer from the hearing loss / fullness etc. without the vertigo. If it is active on both ends, you suffer from all of the symptoms.
     
  15. yanksgirl

    yanksgirl New Member

    That makes sense--so does Dr. Gacek believe it is ever just the auto-immune system gone array? Or does he think it is always due to a 'virus'? Please read my posts on some of the others as I emailed him and got a reply telling me I was either a 'non responder' to AV's (due to being on my 13th day of them and being more dizzy and having nausea and head pressure). He said something else may be causing my dizziness--not sure if he meant other than the Meniere's or ??? Still, as I said, when I lie down or even recline the dizziness eases--and the head pressure. I don't have vertigo--since my shunt surgery anymore. So, wondered if he does think that it can be 'auto-immune'? I emailed him asking him that, and am anxious to hear back. But thought you might know his thinking on that line? thanks
     
  16. CarolineJ.

    CarolineJ. New Member

    Never, to my knowledge, has anyone ever said that a virus (probably Herpes) is always the cause of Meniere's like symptoms. I don't think anyone reading this forum should think that. There are many things, known and unknown, that can cause these symptoms.

    Having said that, AV's are a great thing to try to see if they help with your symptoms. You can't argue with the fact that many have reported improvement with them. Either they are going to help or they are not. It's that simple. If they help ... Great! If not, it's time to move on and try the next thing on your list.

    My NeuroT explains it like this. For me, I have a known Superior Canal Dehiscence (SCD) but am atypical to all the symptoms of the syndrome. He has also diagnosed me with Recurrent Vestibulopathy of unknown cause ( http://www.ncbi.nlm.nih.gov/pubmed/6969834). I have all the symptoms that many here have but have never recorded a hearing deficit on an audiogram. He says that at about the 7 year mark of symptoms it is clearer to see where people will fall in diagnosis. Some cases resolve themselves, others move on to Meniere's, BPPV, etc.. He doesn't prescribe antivirals.

    Autoimmune is a developing area of probability for Meniere's symptoms. From where I stand it makes a lot of sense and I am hopeful that some help will come from this area of research. Stephen Spring's protocol is being used now by people and it will only be a matter of time before we know how this group did with the treatment. From what I know, it is very promising but we'll wait for the protocol users to give us their evaluation when the time is right :)

    While I am sure that Dr. Gacek is a good Doctor, I think it is in all our best interests to not put all our eggs in one basket.
     
  17. msprygada

    msprygada New Member

    This would explain why the diagnosis of this disease is all over the place. You three possible outcomes with just this one variable plus all the minor things in between. Throw in food and other allergy issues and you have one big mess.

    Geesh...feel like a dog chasing its tail.

    So, if I don't have vertigo, is my ear still getting destroyed? Or is it the other end that hearing gets destroyed? Or maybe it gets destroyed if you have it on either end?????

    Ultimate fix would be a prosthetic ear that has hearing and balance. Where is the Bionic Woman's doctor when you need her..... LOL!
     
  18. Vicki615

    Vicki615 New Member

    I agree Caroline, HSV or a virus is not the cause for all MD. I think he was referring to people whose MM is caused by the HSV.
     
  19. GLA

    GLA New Member

    A vestibular prosthesis has already been implanted in human patients in the US and Europe (Switzerland and the Netherlands). I don't know how far away they are from FDA approval, but they're coming. Couple that with the advancements that are being made with cochlear implants, and you'll have your wish one day.
     
  20. Vicki615

    Vicki615 New Member

    @yanksgirl. I know Dr Gacek has around a 90% success rate with AV's in his practice, what he thinks is the cause of the other 10% or so I have no idea, I am sorry I can't give you an answer to that.

    You can look into migraines, allergies, food intolerances, fungal infections, autoimmune etc as a possible cause as well. There are many posts about each on the forums that might help.
     

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