Regarding SFN! Ganglionopathy and Tinnitus?
 

As some of you know I have Sjogrens Syndrome and was told last week by my neurologist that, in her opinion I have SFN and mild gangliopathy. I forgot to tell her about the latest symptom to join the party - a very high frequency tinnitus.

Can anyone explain how this ganglionopathy can be differentiated from a vestibular disease such as Menieres? I have wondered about this for a while, especially since reading this article: Autoimmune Inner Ear Disease | Vestibular Disorders Association

I am not sure how helpful this is but I have annoying high-frequency tinnitus in one ear with no vestibular signs.

This link (thanks to mrsD) provides good evidence that taking taurine as a supplement can help with tinnitus and many other things as well The Forgotten Longevity Benefits of Taurine - Life Extension.

I am about to give it a try.

Still don't know definitively what I "have", but what ever is attacking my small nerve fibers causes tensor typmani spasms, tinnitus, and vestibular symptoms. Its all those little nerves. All part of the "polyneuropathy".

Thanks Kiwi...you beat me to it! LOL ;)

Taurine has been in the body building community for quite a while now.

I raised my taurine to 1000mg each moring from my old dose of 500mg daily.

It was at the 1000mg that my loud tinnitus responded. That link says 1.5gr to 3 gr daily.

I have some vertigo in my left ear, which comes and goes.
In the 70's I had some neurological testing for my left ear and the verdict was that the nerve was damaged either from measles(in childhood) or from a blow to the head in the past.

I am using Puritan's pride, as that is quite inexpensive. 1000mg tablets, which I sometimes break in half. I am moving up to 1500 mg every other day to see if I can get the last little bit of tinnitus which is quite minor now.

Since antiseizure drugs are sometimes used for chronic pain management, the taurine is worth a try for PN IMO.

The Life Extension article also suggests improvements in glucose utilization, which is also a plus for PNers.

Here is another discussion about taurine from our Trigeminal neuralgia forum:
http://www.neurotalk.org/trigeminal-...hlight=taurine

Thank you for bringing this to my attention. I intend to try it. I'll start with 500 mg of the Pure Encapsulations brand, which has no fillers. It seems affordable. I will take it in the morning, perhaps with my B12 an hour before breakfast or with breakfast itself.

David, let us know how things go.

Will do, MrsD. Do you have a recommended regimen? I believe you said morning. Should I take it with the B12, which I take in the morning on an empty stomach or with breakfast? How do you take it? Thanks.

During the onset of my full body neuropathy, I suffered from an onset of tinnitus and disequilibrium. A few months into my illness, I experienced hyperacusis, which luckily only lasted a few day. By the time I saw my first neurologist, but eyes were not tracking properly.

My tinnitus went away about 1 year into my medical problem, but my disequilibrium remains. I'm working with a vestibular rehab PT who does both neurology and balance work. Even though my ENG testing was negative, the PT thinks my ear was damaged since I get wet/warm/hot sensations in my left ear canal.

My PT says that in these neurological diseases, it is common to develop strange ear and balance issues that are not understood very well.

David, and others, I take my taurine in the morning. If I forget it, then around lunch time. I have no side effects, or problems with it.

This link seems to suggest at maximum of 3 grams a day.
It also goes into more detail about the studies of taurine supplementation.

Taurine - Scientific Review on Usage, Dosage, Side Effects | Examine.com

I didn't get obvious results on my tinnitus at 500mg a day.
I used that dose in monthly pulses daily when I had gall bladder symptoms. But at 1000mg a day, within a week there was a marked reduction in tinnitus.

I do think you need to take it everyday, or risk sliding back to what you had before the taurine.

I am not finding definitive advice about taking it with food.
Since it doesn't seem to bother me I do take it on an empty stomach or a light meal.

Thanks very much for this Kiwi (and of course to MrsD) - I'm going to order some too. The tinnitus is the last straw for me! Fingers crossed that it works magically for both of us.