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.

Thanks so much MrsD. Can you tell me if taking Taurine would conflict with any other medications? My present list is: Levothyroxine 125mcg, Losartan 50mg, Lansoperazole (would happily dump this again if the Taurine works!) and Senna plus for constipation, AdCal D3 and B12 (Jarrow, Methyl) and Acidophilus plus. I'm always concerned about supplementing as I already do with B12 and Acidophilus - without telling my doctors.

But this sounds so great and I hate the tinitus so much that I'm willing to give Taurine a go without bothering to ask a doctor first. I'd be really grateful for your advice on the conflicting medications issue though. My worst symptoms, apart from the SFN and ganglionopathy, are a foul taste that is constant and nothing yet has dimmed. Should I take it and the Acidophilus (Holland & Barrett ultra maximum 20 billion plus - friendly bacteria) or could these conflict/ do harm?

Taurine Effectiveness, How It Works, and Drug Interactions on eMedicineHealth - Are there any interactions with medications?

This link suggests that taurine may lower blood pressure in those with hypertension. When this happens your BP drugs may become too strong for you. (I have this result from magnesium supplements). I have seen one link that suggests in some people taurine may increase stomach acid.

Taurine is a nutrient and not a drug. It normalizes processes that use it for keeping the body working well.

I doubt that many mainstream doctors know anything about it.

Stay under the 3 grams a day dose, daily. I'd start at 500mg a day and perhaps raise to 1 gram later on. You may find that fixing a deficiency leads you to no longer need the drugs you already take or that you could get by with lowered doses. This is not an interaction per se, but a situation where your original conditions are being fixed. So you should monitor your blood pressure, and thyroid functions to see if they change.

Taking a nutrient like this does not work quickly like potent drugs do. It took me about a week to notice my tinnitus was down considerably--about 80%. There are times during the day it bounces back some, usually at night. So I am adding in 500mg more during the late afternoon now.

There is alot more information available now on the net about taurine compared to what was there only 5 yrs ago. So keep your eyes on the net about it. Medical information is very fluid and changeable...about everything!

My diagnosis is small fiber neuropathy/ganglionopathy and I have periodic tinnitus but no vestibular symptoms. It started shortly after starting gabapentin so I thought it may have been that medication because I read that gabapentin causes ear infections (otitis media) which I had for the first time. Even in childhood I never had ear infections. Thought the infection and tinnitus may be related but maybe not. Gabapentin is really doing a number on my brain now, I have been on it for 2 years. I was just recently diagnosed with osteoporosis as well. There seems to be a controversy about gabapentin causing bone loss so I am starting to do research in this area.

Thanks very much MrsD. I started it today at 500mg. Fingers tightly crossed!

I only lasted three weeks on Gaberpentin - I thought it was a very scary drug for me. I will never try any more of these nerve pain drugs. At least I know that my tinnitus is defintely not a drug side effect. I'm giving Taurine a try as MrsD suggests. Nothing to lose - everything to gain.

I have been taking taurine (1 g/day) for about 10 days and have noticed a moderate improvement in my tinnitus.

So far, so good :).

Good for you, Kiwi!

That was a quick response.

I've used taurine for years for my gall bladder issues.
But only in lower doses.

I was very surprised when I increased to 1000mg a day based on that post about nerve pain, on our TN forum. The roaring in my ears was getting very distracting and tiring. I've noticed that the higher dose is also working better on my gall bladder too. ;)

Luckily it is not an expensive solution as well.

Well I'm onto my 9th day of 500mg. No difference yet with tinnitus or nerve pain but I'll persevere. The best effect though so far seems to be that it's completely sorted out my longstanding constipation - and I'm truly delighted about this! Many thanks for the tip off I'm aiming for 1000 next to see about the wretched tinnitus!

Mat, I'd up to 1000mg now. If you go up beyond 1000mg a day eventually, do that in divided doses. Sometimes nutrients have absorption ceilings, like carnitine does. I don't know if Taurine is similar, but amino acids do compete for absorption.

You did stop that painreliever too? that might be a factor, as many pain reliever drugs can
be constipating for some people.

Thanks mrsD - I agree that it is early days so will see if there are further improvements.

It will be interesting to see what effect taurine has on my blood pressure - some of your links suggest that it can lower it.

I have primary hypertension which is fairly well-managed by a calcium channel blocker. I check my BP regularly so will see if taurine lowers it more over the next few months.

If so, I will have a chat to my GP about lowering my drug dose. He is not stupid (I chose him with some care) and is receptive to evidence.

I also have tinnitus and balance issues and light headedness that started a few months ago. I have whole body SFN. Nobody knows what is wrong, but I did find out I am prediabetic. Not sure if that is the cause or not!

This link might be of interest to you then:
The Fire Within

I am guessing that being prediabetic makes this new research particularly relevant to you? I'm not prediabetic but, having had father, uncle and grandfather all died prematurely from diabetes related problems, I'm ever on my guard. I'm hypothyroid and my endocrinologist says that my confirmed Sjogrens would account for this and all my neuro symptoms. My late father had all the same symptoms for decades - and they started well before his diabetes was discovered.

Thanks Mat

Great article.