Annaliese

I dropped gluten, dairy and soy out of my diet a year ago.....thanks for the suggestion though, was a good one

Thanks Julie. Yeah i take magnesium but im not sure what the max dose is i can take. How much do you take?

Jangle, can you post on the other ways you find?

Good point jangle and doolzygirl. Thanks! Schorobi, do you mind me asking what your diagnosis and symptoms were?

Thanks for th warning mully, i have to say, i am a bit scared of it. Ive got a scrip for it but never tried it since my p is now low.

Issie when you say i dont use it all the time either - because you can get addicted to it and it will stop working..... Do yoh mean clonidine or tramadol?

Btw, i use valium, but it no longer has much if an effect on me anymore.

I almost certainly have excessive symp activity. My eyes hurt with too much light, i cant stand noise and smells. I have terrible anxiety (not cognitively induced). Initially i had high standing bp but now its low (im about to be tested for adrenal fatigue as it was over a year that my standing bp was high). Since i now have low BP, its a bad idea to use clonidine on its own. My Qs are 1. Has anyone ever been prescribed clonidine WITH florinef to address the excessive symp activity but to avoid very low blood pressure? 2. What other sympatholytics have people been prescribed other than clonidine? Ive tried the SSRI lexapro and had a very bad reaction to it (terrible anxiety and diarrhea). Ive tried AVANZA and this did nothing for my anxiety. Thanks guys

http://www.geronova.com/content/r-dihydrolipoic-acid

http://store.geronova.com/geronova-products-c1.aspx

Yep, had a sympathectomy at 21 to stop my palms sweating. Worst decision i ever made. Now i cant thermoregulate and i also have compensatory sweating on my trunk and thighs which is worse than th original problem.

I believe the dopamine and opiod systems are linked and that increasing opiod activity might lead to an increase in dopamine actiivity. Google to check on the correctness of that info. What i do know for sure is that LDN increases opiod activity on average over a 24 hr period.

Discovered you can get it in Australia but its expensive.

Issie do you mean the article you posted a few weeks ago?

http://www.tinnitusformula.com/qtimes/2009/04/askbarry.aspx "Interestingly, the FDA has banned aldosterone as a bio-identical hormone. This is very unusual as the FDA does not generally interfere with bio-identical hormone therapy except in extreme cases. Since aldosterone is a natural hormone and exists in everyone's body, it defies logic to ban a bio-identical product. Perhaps the answer lies in the fact there is a commercially sold synthetic analog of aldosterone called fludrocortisone. This synthetic drug is manufactured by Barr Laboratories and distributed under the brand name Florinef. There are many side effects of Florinef that do not occur with aldosterone and it has not been studied for its effect on SSHL. Aldosterone can be purchased from Canadian compounding pharmacies with a US doctor's prescription. I suggest you have a hormone test for aldosterone; you may find you have a low level. You can get hormone tests from a compounding pharmacy in the US. If you do have a low level, you can ask for a prescription from your doctor."

http://www.tinnitusformula.com/infocenter/articles/treatments/aldosterone.aspx "Bio-identical aldosterone is very difficult to obtain in the US so Dr. Wright enlisted the aid of a Canadian compounding pharmacy to supply it. He put Tom on two 125 microgram capsules daily. To monitor the safety of the therapy, Dr. Wright checked Tom’s serum electrolyte levels (potassium, sodium and chloride) monthly. He began taking aldosterone and nystatin as he tapered off the prednisone."

bioidentical aldosterone has got to be better than taking florinef- what do people think? Anyone take it?

Doesnt low aldosterone affect the ear?

Thanks everyone for your help. I went to the gp today and she suggested seeing an optometrist first because its cheaper than seeing an opthalmologist. So anyway i'm going to do that. Julie, just checked my eyes and they dont seem bloodshot. They dont feel gritty either but i could have less fuild than usual because i certainly have less saliva. Potsgirl, no i dont have a headache, its just my eyeballs. I dont think its a glassses problem as ive been shortsighted for twenty years and not bothred about wearing glassss except for driving. The sore eyes started exctly when the dys did.

I am having a lot of trouble with eye pain. My pupils react to light (i tried shining a torch in my eye) but i think overall my pupils are too big and thats why they hurt. Does anyone else have this problem and if so what do they do about it? Ive tried sunlassses but it doesnt help that much. Mostly i lie down and close my eyes and that reduces the pain a bit but i cant keep my eyes closed all day. I am going to see someone about it but i guess it will take some time to get an appointment. My vision doesnt seem any more blurry than usual and i dont have double vision so i dont imagine its to do with the vergence/ accommodation system but maybe i am wrong.

I just bought some neuropathy suport formula online which has heaps of lipoic acid in it. Havent received it yet though. Research seems to support its efficacy in treating neuropathy.

Are you sure is was mestinon you took ; ). Tried mestinon. Gave me massive diarrhea so i stopped it. Also gave me weird tingling on my legs. Scared me. I only lasted two days on it. My dys friend swears by it though and says you have to take it for a few weeks before things calm down.

Thats a good point issie.

Rama, perhaps if you got a giant tape worm your immune system would get distracted from AS and POTS. LOL. I know they have used intestinal worms to suppress serious bowel autoimmune diseases. Does anyone know if theyve ever tried to use them to suppress non bowel autoimmune diseases? I guess theoretically if your immune system is struggling then maybe worms would tip us in the direction of getting worse, not bettter. Who knows. Ive been looking at the worm eggs you can buy on the internet and thought, nahhhhhh, too risky. The last thing we all need is dys plus an itchy butt!

TNF inhibitors seem to have dodgy side effects. I think controlling excessive sympathetic activity is the key to reducing the inflammatory response. There is well documented evidence on the roll of stress/symp activity on the inflammatory/immune response. This is why ive chosen to start LDN. LDN calms the symp nervous system activity. Ive noticed on some of your other posts that you sometimes feel agitated/ anxious. Is this correct? Do you think that means you might have excess symp activity? Do your symptoms get worse with stress?