Hi Friends,
I met w/ two Neurotologists and both say I have (had) BPPV with Meniere like symptoms. Has anyone ever heard of this diagnosis? To recap I have had 2 episodes of positional vertigo (April '04 and May '05) both were relieved doing the Cawthorne exercises. First time it took 2 months for the vertigo to pass and the second episode took 1 week to pass. However, both times I have been left for 5-6 months after the vertigo with severe brain fog, cognitive issues, general dizziness, difficulties in low light environments, jumping vision and difficulty watching anything that moves! This most recent episode also gave me the gifts of tinnitis and on and off ear pressure which I did not have on the first go round. I have been improving over the last 2 weeks with all but the tinnitus and ear pressure. I will be starting VRT today (wish I could have done that sooner but had to wait months to see the nuero oto's.)
I was wondering if ANYONE out there has ever had tinnitus and ear pressure assoicated with their BPPV? Seems like any BPPV research I have found does not include these as symptoms but the Dr. said it is not "uncommon." Naturally I see this as a progression of symptoms and I find myself just waiting for the full blown MM. The Dr. said that BPPV does not always progress into MM but of course I am expecting the worst. Anyone out there have any insight or a similar situation?
Thanks!

adrienne.

Hi Adrienne
I have had BPPV and it actually began with a pulsitile tinnitis about two weeks ago before I woke up spinning. I thought perhaps I had a minor middle ear infection, and maybe I did and that pushed things around in my inner ear. But more likely the BPPV was a result of my labyrinthitis episode nearly 2 years previously to the BPPV. I have been almost 4 years now since the onset of my labs and 15 months since the BPPV and I am pretty much at 100% now.
For me the ENT was of no help and my best friend's husband who is a doctor did some research for me and showed me how to do the modified Epeley maneuver at home by myself. The second time I did it I had no vertigo and haven't had any since, but the brain fog and other crap was brutal for the next 9 months and in the past 5 months have continually felt better and better.
The tinnitis was bad for about 4 months total. I began taking Ginko Biloba about two and a half months into the tinnitis and within two weeks it was gone. I can't tell you how wonderful it was to just wake up and realize I couldn't hear it anymore. At first it was episodal, I would hear it going to bed and it would be gone in the morning or visa versa, but soon was gone for good and never came back! I have only had minor and brief epsisodes of ear fullness.
There are lots of success stories out there and I would like to think everyone can recover...I don't know if the Ginko did it or it was going to go away on its own. BUt I still take it and probably will continue for some time until I am several months at 100% with no recurrences or set-backs.
Hope this helps,. good luck with the healing etc..

Hey Firechick,
Thanks for your response. I'm a little relieved to see that you had some form of tinnitis with your episode. It makes me feel somewhat better that maybe all I have is BPPV and not early Menieres. My tinnitis didn't actually start until a few weeks after the vertigo stopped. Seems like when it comes to the inner ear everyone experiences most of the symptoms they just very often experience them differently.

I agree with you about the ENT being of NO help. Both times he just kept telling me to go and wait it out. When I first complained about the brain fog and stuff he told me "that's neurological...you'll have to see a neurologist." He just dismissed me. I really had to find my own way and locate the neurotologists with the help of people like yourself. Thank God for the internet!! I also believe that if he (the ENT) referred me to have the Epley maneuver done when this first started that maybe just maybe I wouldn't have done further damage but letting those "rocks" dissolve on their own. Again, that's just my own theory.

With regard to Ginkgo...I have actaully been taking it pretty regularly since my first episode last year. I started using it when I read it might help with the brain fog. My acupuncturist just started me on a super strong herb which she hopes will help eliminate it. Please keep your fingers crossed.

One final question...do you do anything preventively at this point to avoid triggering the BPPV? The neuro's suggested a low salt diet and diuretics. I used to be a salt freak but I now try to watch it in terms of what I eat and have refrained from putting any extra salt on. It's quite a challenge! I'm avoiding using the diuretic. I'm not a big fan of prescription meds and I'd rather see if my body can do it on it's own by cleaning up my diet and consciously eating healthier etc.

Again, many thanks and do stay in touch!

adrienne.

Hi There
As far as prevention I try to stay healthy, avoid colds etc...but that is more for the labyrinthitis as a flu bug is what started it all for me.
I continue to take the Ginko and an herb called Rhodiola which I really think has helped me get back into shape faster than on my own.
I also still sleep on my left side as it is a good idea to keep the affected ear up for the first while. I think it is now more pyschological for me but I still don't feel right lying on my right side, even though I don't get the vertigo, it just makes me feel "off" somehow.
Low salt is a good idea, one member on this board is convinced his BPPV is related to the potasium levels in his blood, and watches his diet accordingly. Low salt is a good idea anyway and perhaps staying hydrated which goes hand in hand. My father-in-law has Menieres and he follows a low salt diet. Since he started drinking 2 litres of water a day he hasn't had another episode in about 3 years which is a record for him.
Hope this helps, and hope you are doing well...
As far as the ENT goes, as unhelpful as they can be with this, he is right in that it does take time to heal. My best advice is to keep yourself moving, and do as much stuff as you can to keep your life as normal as you can.
FC