Continued symptoms, still no relief...

Discussion in 'Your Living Room' started by corkmt2003, Apr 25, 2014.

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  1. corkmt2003

    corkmt2003 New Member

    I’ve read many of your posts over the years which have helped me. However, I am still feeling horrible. So here’s the short of it:
    ~25yrs old, very slow onset of balance problems, spatial issues with complex visual places, aisles etc., progressively got worse and leveled off.
    Went to many ENT’s , Nuero-onto, etc. Everyone you could imagine which resulted in 1 finding, a right ear vestibular hypofunction.

    Did try one round of low dose gentamycin in my right ear which had a low vesitibular hypofunction (on ENG). I did have true “spinning” vertigo at day 7, and took about 6-8 months to get back to where I was before the shot, but got no better.

    My aunt, 10 yrs older, came to me last year and developed very similar symptoms out of the blue? Not sure if it’s resolved yet?
    Also have another aunt (her sister) that has vertigo issues for a long time maybe when she was 30-40 it started. I think she still has symptoms. Not sure if there is any genetics that could be causing this?

    So here’s my major issues:

    Constant daily off balance.
    Gets really bad almost immediately when I do heavy lifting, straining.
    Constant visual perception problems.
    Often have stiff neck.
    Standing and close my eyes, balance gets even worse.
    Never had true ”spinning” vertigo
    Never had headaches.
    No hearing loss, no tinnitus.
    No pressure in my ears, although once descending in plane, thought my ear was going to explode, hurt so badly.

    Things I’ve tried, 2 times VRT, diuretics, acupuncture, neck massages, supplements, prescriptions (klonopin, verapamil, topamax, noritryptoline, Effexor, maybe some more?

    So the things that help: klonpin did help a little. Placing my heads downward towards the floor which feels like blood is rushing into my head and everything visually/mentally feels clearer, crisp. Lying down makes it better. But that’s about it.

    Any ideas or things to try and figure out would be great. Please ask questions and I can answer them. Hopefully someone can think outside the box and maybe I can see if anything else helps.

  2. CarolineJ.

    CarolineJ. New Member

    Keith ... have an experienced NeurOTOlogist give you a VEMP test and a high resolution CT scan to rule out a Superior Canal Dehiscence. The heavy lifting and straining issue is a big indicator of this problem.

    I suffer from this.
  3. corkmt2003

    corkmt2003 New Member

    Funny I did come across that and was wondering if anybody would bring it up... I think they excluded that b/c they said I don't' have any hearing issues at all. They also asked if i get dizzy when i sneeze and i said no, but I am not one of those people who sneezes a bunch in a row.. do people with the bone issue possibly have no hearing issues>?
  4. CarolineJ.

    CarolineJ. New Member

    I don't have any hearing loss (I'm tested every 6 months) but I have a lot of trouble with sound. Loud noises and multiple sound sources are tough to tolerate because of the third opening caused by the Dehiscence. The hole can be so small it's barely readable on the CT and just a thinning of the bone can cause the same problems.

    The good news is that it is pretty easy to get the tests done to rule it out but you have to have an experienced Ear Doctor that is able to read the CT.
  5. CarolineJ.

    CarolineJ. New Member

    I also don't hear weird sounds from my body :D Which some with SCD hear.
  6. corkmt2003

    corkmt2003 New Member

    Ya no sounds from my inner self, that must be kind of weird.. Did you have any surgery to plug the window?
  7. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    It seems that Caroline had a good thought. Your symptoms are NOT those of Meniere's. Meniere's almost always includes hearing loss and bouts of severe vertigo.

    Looking at things like the heavy lifting which would cause a rise in blood pressure as well as the stiff neck issue almost points to a neck alignment issue, the name of which I can't remember, but there are chiropractic specialists (not necessarily your average chiropractor) who are trained to deal with this. Have you ever been in a car/motorcycle accident? Played football? Wrestled? High school sports injuries can come back to haunt. I still have knee issues 60 years after a lacrosse injury.

    My dad had issues for years associated with "dizzy spells" that were finally found out to be a neck problem which he managed with regular chiropractic treatment. I know there are many people, especially medical doctors, who have no regard for chiropractic treatments but they have saved my wife after years of lower back issues that were not resolved by other methods. Good luck with finding out what ever it is.
  8. upgrader

    upgrader New Member

    Could be

    Perilymphatic or labyrinthine fistula is a condition in which an abnormal communication is present between the perilymphatic space of the inner ear and the middle ear or mastoid. The manifestations of this disease vary in severity and complexity, commonly ranging from very mild to incapacitating. Perilymphatic fistulas (PLFs) may induce hearing loss, tinnitus, aural fullness, vertigo, disequilibrium, or a combination of these symptoms. The vagueness of symptoms caused by perilymphatic fistula (PLF) and the overlapping symptoms of other disease processes make the diagnoses elusive.
  9. bubbagump

    bubbagump New Member

    yeah I was going to say perilymph fistula and/or eustachian tube dysfunction.
  10. upgrader

    upgrader New Member

    With PLF symptoms would get worse with bending down or straining through lifting, something worth looking into
  11. CarolineJ.

    CarolineJ. New Member

    I'm in Canada and they are not rushing you to the surgical suite here the minute they find the Dehiscence. Because the worse of my vertigo is under control they and I prefer to wait. It is an option for me if my life is totally debilitated by vertigo. The surgery from what I have heard from others isn't a fix all.

    I have all the symptoms of Meniere's (fullness, vertigo and tinnitus) but not the hearing loss. I also have chronic dizziness/disequilibrium, fatigue, as well as the whole host of other symptoms that others report here. My Doc's believe there is something else going on along with the Dehiscence but we don't know what that is yet.

    This is why I am also very interested in the outcomes from the people doing the SS protocol. For me, his theory makes good sense when I apply it to my life. :)
  12. bubbagump

    bubbagump New Member

    to the OP - actually my doc also said fistula will give you intense vertigo right after the trauma. so you may consider "pressure-sensitive" meniere's.

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