Dry Mouth And Eyes

[Foggy01]

Hey,

I've had a really dry mouth and eyes the last while. I also have POTS. I was wondering what the connection between these two is? Is it necessarily something like sjorgens? (I think RichGotPots found out he had this and SFN and that was causing his POTS). Maybe I should get tested for Sjorgens too. I've been trying to get SFN testing for a while.

Any experiences or thoughts about these issues yourselves?

[E Soskis]

well....one of the problems associated with dysautonomia is dry mouth - I usually keep a bottle of water close at hand - by the end of the day, I feel like I have a wad of cotton in my mouth it is so dry - my eyes occasionally feel very dry but, nothing like my dry mouth.....

[gjensen]

I have dry mouth and eyes. I tested negative for Sjogrens. Doesn't mean a whole lot, I do not think.

It would not hurt to have both investigated. I did. Positive for SFN and negative for Sjogrens.

As Soskis said, it seams that it can come with what we know already.

[bellgirl]

Lip biopsy is really the only fairly accurate test for sjogrens, because I tested negative, as well, and I've had major corneal issues (Edema, ulcers, etc) and severe chronic dry eye, and a dry mouth is a constant symptom for me, as well. Biotene is supposed to help your mouth, and I use the Refresh ointment at night, and preservative free eye drops during the day when I remember to do so.

[Foggy01]

Lip biopsy is really the only fairly accurate test for sjogrens, because I tested negative, as well, and I've had major corneal issues (Edema, ulcers, etc) and severe chronic dry eye, and a dry mouth is a constant symptom for me, as well. Biotene is supposed to help your mouth, and I use the Refresh ointment at night, and preservative free eye drops during the day when I remember to do so.

Did the lip biopsy end up showing you had sjorgens? Sounds terrible what you've had to endure with the edema and ulcers. :/

[bellgirl]

I never had it done...I get tired of all the doctor's appointments. I feel I should get tested for EDS next time I make an appointment. I'm always trying to find out why?! Yes, I had to go to a corneal specialist, since my eye sight was failing! I thought I had an ocular aneurysm, but the neuro opthamologist couldn't see through my cornea to see my retina for examination, but with my MRI he said he didn't see any aneurysms. My dad had a cerebral one, so that was a relief for me.

[RichGotsPots]

Yes I have Sjogren's and autonomic neuropathy. I know 70 people with Sjogren's and POTS. I run a group of 550 members who have autoimmune disease that causes dysautonomia. Any autoimmune disease can be associated with it. New research published this months shows that not only can POTS be caused by autoimmune disease but POTS might be an autoimmune category in Itself and the other autoimmune disease might just be comorbid.

[corina]

New research published this months shows that not only can POTS be caused by autoimmune disease but POTS might be an autoimmune category in Itself and the other autoimmune disease might just be comorbid.

That's really interesting!

[E Soskis]

There is so much about autoimmune diseases that are still undiscovered - I am sure that over time, autoimmune diseases will be linked to a number of other conditions that we currently know nothing about. With all the chemicals, additives, and preservatives added into our diet and surrounding us in our environment, it is no wonder that autoimmune diseases are so numerous. Now, if we could just catch-up identifying and treating them as well as we create new substances and chemicals, then we might get somewhere.......

[Freaked]

I get very bad dry eyes since POTS but don't seem to have Sjorgens either. But I do think POTS effects it.

[Foggy01]

Thanks guys for the input.

[kitt]

I also have extreme issues with dry eyes and mouth. My dental hygienist pointed out that my tongue had changed considerably in the last year. Instead of being smooth she pointed out that it's not smooth and has lumps/bumps. She had to show me with a hand mirror and it wasn't until she showed me her tongue that I could see the difference.

My eyes are so dry I began awakening with my eyelashes 'glued together', I literally had to pull the upper and lower lashes apart each morning.

I went to a an opthomolist, (didn't mention dysautonomia to her, figured that would be too confusing) and after a through exam, she prescribed an expensive eye drop called Zylet. (50.00 with very good insurance)

She said it was NOT an infection, but Zylet contains a corticosteroid. I've found it to be exceptionally helpful, but am concerned that this is ongoing. Here's a link about Zylet...http://www.drugs.com/zylet.html

As I said it's been a lifesaver but I don't want to be dependent on it.

I also have small fiber neuropathy, pots, neurocardiogenic syndrome (NCS) and am also extremely hyperadrenergic.

So not quite sure how it all ties together with the dry eyes and mouth.

Also, Bellgirl, can you share more about the lip biopsy please? I have small very dark discoloration in the corners of my lower lip. My neighbor is a surgeon and standing out in the sun one day chatting he made the comment that my lip was discolored and could be a sign of gastrointestional disease. At the time I thought, "I have enough on my plate!" and have not pursued it, but am now wondering.

On a positive note I recently had a through workup at Mayo MN and went through 7 days of testing. I didn't mention dry eyes, mouth or discolored lip but they discovered the NCS and small fiber neuropathy!

Hope others might be helped with the information about Zylet. Also, if you feel you have 'dry mouth' ask your dental hygienist or dentist for their opinion.

Best,

K

[bellgirl]

Kitt, I take Pataday drops for my eyes when I have trouble with allergies. I used to take Alrex, which also has cortisone in it. I wouldn't want to take any eye drop with a corticosteroid in it for too long either. I use Refresh drops, which are like regular tears, but do use the ointment at night, because otherwise my lids stick to my eye balls literally!! Yes, you read that correctly. I have a Cpap which is blowing air all night, so that doesn't help. I should probably being using Restasis, and the corneal specialist suggested that, but I told her I was already on too many medications. She wanted to keep me as a patient, and since I have to drive 2 hours for 3 other doctors, I told her that I would make an appointment with her if I needed to.

As far as the lip biopsy goes, I've heard it is very painful, and I already have enough of that, pain, that is, and there is not a whole lot that can be done for Sjogren's, anyway, other than take care of your teeth and eyes, anyway. I did loose a tooth, btw, when I was very deficient in vitamin D3.

If you are concerned with gastrointestinal issues, the next time you have a colonoscopy, they also can check for celiac disease by getting a biopsy then. Do you have GERD, dark stools, IBS, or constipation? If so, you may consider going to a gastroenterologist, anyway. I've never heard of the dark pigmentation meaning GI disease, though, but I'm not a doctor.

Actually, to be honest, I think all of us have small fiber neuropathy, eventually, and fibromyalgia, too. Check with your doctor, but from what I have read, Alpha Lipoic Acid can actually help with nerve healing, so I take that regularly. Most Neurologists that treat MS have their patients on it. It also is supposed to help with Parkinson's, as well. I was very tremulous early on, and concerned about this issue, but with all my treatment, not so much anymore.

Wish all of you the best.

[kayjay]

I'm going to plus one on Kim's comments. I'm struggling with terrible dry eye. I have 2 humidifiers running in my bedroom all night. I use ointment at night and drops during the day. They must be free of perservatives or my eyes will actually get worse.

I'm probably not going to tests for Sjogrens just because I don't care about anything that doesn't have a specific treatment.