I was just wondering. I have been having some strange hearing issues lately. The vertigo, dizziness, nausea, sudden loss of hearing in one ear, etc.
Hi Cat:
I asked this same question to my ENT a few years ago because I have severe Sjs and my mother has bi-lateral Meniere's and as a result she's become deaf in both ears. She still gets bad vertigo attacks and vomiting as a result of the vertigo and she's had the disease for about 40 years now.
The response from my ENT was that there is no connection between the two diseases.
I would suggest that you get your hearing issues checked out by a good ENT if you're concerned though. It is possible that you could develop Meniere's or be having some impact of the Sjs in your ears.
Best of luck,
Daisy
Hi Cat,
Under the thread "dysautonomia?" I posted some info on the autonomic nervous system and how an inability to break down dietary proteins can lead to dysautonomia. You would not be able to release essential amino acids that regulate the autonomic nervous system, nor would you be able to release B12, which is only found in dietary proteins. I posted a study that links B12 to Sjogrens. B12 is also necessary to keep an amino acid called homocysteine in check. Homocysteine is 40 times more predictive of heart disease than cholesterol. In fact, the most accurate test for a B12 deficiency is elevated levels of homocysteine. Here is a link to a study that shows elevated homocysteine is a factor in Meniere's disease.
http://www.thefreelibrary.com/Hyperhomocysteinemia+and+left+internal+jugular+vein+thrombosis+with+...-a0111111836
Hi Cat,
Sjogrens can affect the cranial nerves and those symptoms you are having can occur when the 8th cranial nerve is being attacked by sjs, or is being compressed by inflammation. Its just something to keep in mind when trying to figure out what it could be. I've just started developing cranial nerve issues, I know it isn't fun! I have 8th nerve issues and I also 5th; I lose feeling on parts of my face at times.
Kerrikins
So true Kerrikins. This could very well be a factor. This study states: "The results suggest that vitamin B12 deficiency causes autonomic dysfunction with similar hemodynamic consequences and patterns of autonomic failure as seen in DIABETIC AUTONOMIC NEUROPATHY.
http://www.ncbi.nlm.nih.gov/pubmed/12036186
Vitamin B12 is responsible for maintaining the myelin sheath (which surrounds nerve cells). In addition, according to the National Institutes of Health, subacute combined degeneration of the spinal cord is caused by a B12 deficiency.
Nat, I can't even pretend to understand what that means, lol.
Are you saying that B12 can also help cranial nerve problems? I'm willing to try anything, I haven't had feeling in my left cheek for a few days and last week I was almost deaf for a day :( I'm in the middle of the worst flare ever. I'm expecting a call from the Dr this week about test results and I'm going to ask what I can do about this then. Maybe I could ask for B12.
B12 deficieny can cause a lot of nerve problems,, I was looking at how they can diagnosis it and of course is the blood test for it, Japan considers lower then 500 to be a problem, I think here its like 200, may be worng on that one,, but it cant hurt to take a B12 supplement,, it wont hurt you and its something you need for nerve problems,,
I have some issues with cranial nerves too,, it is sort of insidious on how it sneaks up on you,, I think my seventh nerve is affected, I get numbness in the cheek and lip area,, sometimes its there all the time and other times it feels like it cuts in and out,, I know a facial nerve runs through teh Parotoid gland,, if terhes a problem there,, it may affect that nerve,, so many things that go wrong with us and so few people that can figure it out,, look on the internet for cranial nerve function,, it will give you a good idea what they all do,, regardless it all sucks
You know, I would not be surprised if my parotid were compressing a cranial nerve right now. My left parotid has been acting up lately and its the left edge of my face that is numb. Fun stuff, for sure!
You're right really? B12 is so important & can't hurt to take extra.
What I've also learned is that a blood test can show your B12 amounts in your blood but not how your body uses in your cells & therefore the higher your B12 the better.
I take B12 (methyl from a compounding pharmacy) shots every 3 days and after few weeks I stopped having the burning pain & tingling in my feet & legs from neuropathy. By using shots over oral supplements it bypasses our stomachs & is used better.
I was tested for menieres when I had my extreme vertigo but I do not have it & 95% of my dizziness went away when I went gluten free. The other small amount I still have is various forms of dysautonomia I have.
Carie
Yes, a deficiency of vitamin B12 can lead to the deterioration of the myelin sheath. The myelin sheath protects the spinal cord. ( Think of the protective cord around electrical wires.) If it becomes frayed or worn, you will start to see symptoms such as numbness and tingling, sudden electric-like shocks going down the spine, burning sensations and many other neurological complications. Under the "dysautonomia " thread, I posted a study that links B12 deficiency to SjS.
So, a B12 deficiency can cause neurological deterioration in a variety of ways. First, one of the neurotransmitters that controls the autonomic nervous system is acetylcholine. Acetylcholine is derived from choline. Choline is derived from B12 and folate. If you were not able to produce acetylcholine, this would lead to dysautonomia. In the previous study, it was concluded that this autonomic nervous system dysfunction leads to the same type of neuropathy as seen in diabetes. There is some good information that other members have posted on dysautonomia under the thread "dysautonomia".
Also, the National Institutes of Health has concluded that subacute combined degeneration of the spinal cord is caused in and of itself by a B12 deficiency. So this of course would lead to many neurological symptoms.
The final way is the elevated levels of homocysteine. Homocysteine is a nerve and blood vessel toxin. As I stated before, the most accurate test for a B12 deficiency is elevated levels of homocysteine.
Really- That is really great info on the levels of B12 needed to prevent these neurological symptoms. The U.S. defines a deficiency at 200 pg/mL. This level is vastly lower than that of other countries like Japan and some European countries. At 200 pg/mL you will see the most severe manifestation of the disease, which is pernicious anemia. At 500 to 550 pg/mL you will see neurological symptoms such as pins and needles, shaking, memory loss and dementia.
The problem though is in the metabolism of B12. If you are unable to properly break down proteins, you will not be able to release B12 so it can be taken to the lower intestine, which is the only place it can be properly absorbed into your cells. A high serum level is often not indicative of cellular level. Studies have shown that supplemental B12 and folic acid can actually lead to an increased risk of disease. Here is some information on this.
http://www.reuters.com/article/2009/11/17/us-cancer-folicacid-idUSTRE5AG5NU20091117
There is also something called bilateral autoimmune-modulated vestibulopathy, which I have (along with the Sjogren's); it is a variant of Cogan's syndrome. It affects the balance, and can affect both hearing and vision.
Take care,
Genko
I know I am losing hearing in my right ear. I am always asking my husband to turn the tv up or something to do with a clearer tone I need.
susanep :)
Cogan's syndrome and Bechets are both associated with large vessel vasculitis. The following study shows that elevated homocysteine is involved in vasculitis. Homocysteine destroys the endothelial cells that line the blood vessel walls, from the smallest capillary to the largest blood vessels.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1771158/