nantynannie

Vegan after POTS diagnosis, definitely helps. And avoiding all of the chemicals, preservatives and hormones in all foods, not just animal products, is a big plus.

Hi Everyone, I was wondering if anyone knows how high is high for plasma histamine? On my lab test the normal range is less than 1.5 ng/mL and my results were 2.4 ng/mL. It's flagged as high, but I'm not sure if that is significantly high or not. Thank you! Ann

Hi Ricky, Have you looked into MCAD on this board? Just curious, because I am taking a Zyrtec every morning and it has helped significantly. It is something simple she could take one morning and see what happens, you don't need to wait a week to see if it works. I noticed a huge difference the first day I took it. Good luck! Ann

I didn't get the injection. I asked afterward and was told they wouldn't give it because of my reaction (which was probably about the same as other reactions on this board).

I haven't been sick in 6 years (right about the time I got POTS and allergies). My doc thinks mine is overactive. Maybe it depends on the type of POTS or cause?

Hi Gary, Not sure if this helps at this point, but cutting down on Tramadol (even slowly) definately causes withdrawal symptoms, anxiety being one of them. It can also cause shaking and sweating as well as nausea and trapdoor. Even after I stopped all together after slowly taking the dose down, I had anxiety for a few weeks as my body got used to not having the drug. Good luck. Ann

Rama, I also have sciatica, but it's coming from the AS (SI joints). Ann

Mcaimless, I knew when I posted that note about fibro, I would probably hear about it. I am not saying fibro isn't "real" I'm saying I think it can often times be a misdiagnosis. I hated my fibro diagnosis because it carries such a stygma and it's not "provable". It sounds like we had similiar experiences. I also had a mixed connective tissue disease rx for a while. When I was diagnosed with fibro, I too had all of the classic symptoms and high CRP, and high IL4 & IL12 (all inflammatory), otherwise absolutely normal on the classic connective tissue disease blood tests. Then they found the synovitis in my hands so they decided it was RA (sero negative). It took a long time for someone to xray my SI joints and test for HLA B-27. Turns out that every one of my fibro symptoms were actually caused by the AS and the Dysautonomia. If you look at the symptoms list, they are all overlapping. Do you have symptoms of fibro that are not on the dysautonomia list? I wonder now because so many fibro/cfs patients are being found to have dysautonomia and I am thinking the others have AS My aunt is also diagnosed with fibro, though she shows the classic POTS symptoms. Morgan, "I always thought Jake got his POTS symproms from me, but I guess it's a coincidence, or he just had no chance between his dad's gene's and mine. We have a cesspool, not a gene pool..good grief." Thanks for the laugh! Rama, Do you get deep ridges in your fingernails? I also have horrible floaters that came on suddenly. Ann

I was initially diagnosed with Fibro and RA, it took them a long time to find the AS...I am female, and some doctors won't even look at AS for females. None of the rheumys I went to would even acknowledge the POTS. They said I was deconditioned even though I ran a marathon the same year I was dx'd. Personally, I think Fibro is diagnosed when they can't figure out what you really have. I think many Fibros have dysautonomia and/or a connective tissue disease that does not fit into the doc box. I had cortizone shots, which were very helpful, tried ALL of the rheumy meds, nothing worked. Refused the TNF blockers. Tumor Necrosis Factor is what helps kill cancer cells, so when they block TNF, you have a higher chance of leukemia and other blood borne cancers. If you listen to the commercials, you will hear the disclaimer. I know some people don't have much of a choice, but in my case it just wasn't bad enough for me to do it. The AS gets bad, and then seems like it's gone for a while. Not sure if that is what happens to you? I got POTS and AS at the same time and the POTS doesn't go away. I have high catacholamines (800+) sitting, but I also have some blood pooling and some kind of small capillary leakage. My legs get very hot and red and I get flushing/intense heat with the shaking and sweating. What is your story? Until I read your article, I've never had a doc even entertain the possibility they were related. Ann

Hello, I also have AS with POTS/Dysautonomia. Thanks for the info. Ann

Hi Gary, Does the watch have a continuous readout as long as you keep your fingers on it? Thank you. Ann

Hi Everyone, I just wanted to let you guys know that for the last week I have been taking a Zyrtec 10mg in the morning and Claritan/Benadryl at night, and I CANNOT BELIEVE how much I've been able to stand. Before this medication, I was able to stand for 3-5 minutes tops before I'd get very hot and sweaty and shakey. Everywhere I go I carry my cane seat or I'm looking around like a nervous rat for a place to sit. This week I've been able to stand more than I have in 5 years. I even got through a short run to COSTCO. It is unbelievable! My husband was off on vacation this week so we were running around a lot. I think it was more of a relief to him than it was to me. He is always looking around for a place for me to sit. I know this won't work for everyone, and might not work for me forever, but it is certainly worth a try for those of us who have H-POTS. BTW, interestingly enough, my heartrate is still getting high, but my reaction to the high heartrate is diminished. So I have a high heartrate, but no intense heat with the sweats and shakes and the need to sit asap. Please let me know if antihistamines work for anyone else. (I am taking old meds Provigil 100, Welbuterin 300 and the new med Zyrtec every morning, maybe it is the combo that is helping?) Ann

Hi Susan, I have had RLS for a long time, not related to any medication. I just got it at 3:30pm, which is very early for me, but I took an Endurolytes and it worked! I still can't believe they work and I hope they work for you too. I haven't seen my GI doctor since he took my gallbladder out. I used to see many different doctors, but now just one who can manage the Dysautonomia. Please let me know if the Endurolytes work for you. hammernutrition.com Ann

ZOFRAN is a lifesaver for me. And I found a great remedy for RLS. I used to take 500mg of Depakote, now I use Edurolytes by Hammer Nutrition. Look at their website and read the testimonials. I was very doubtful about it, but it definately works for me. And it's better than that nasty Depakote. Good luck! Ann

Hello Everyone, I have been thinking about the MCAD thing, and I was wondering if anyone else gets the feeling like a brick is sliding down your throat during an allergy attack? I get it when I eat certain foods. I recently took a Benadryl during an episode and it worked! I've been taking Zrytec 10mg for the last couple of days and it seems to help the POTS symptoms. Thank you for all of you who posted on the MCAD topic, I don't think I ever would have tried an antihistamine for the POTS if it weren't for you guys. Ann