Angel1234

I have been bouncing around with so many "theoretical" causes for my POTS. I have been told MCAD, spontaneous after pregnancy, and many times been told it is autoimmune related and to just relax and maybe I will find out years from now I have MS or lupus etc. . . Tired of waiting around and having symptoms affect my daily life. Thinking its time to see someone who is good at diagnosing root causes. Any suggestions? I am in Florida. Thanks!

Has anyone seen Dr. Santa Maria in south Florida? If so what was your experience like?

I believe I had POTS since childhood but was never diagnosed. And honestly symptoms were not bad or pronounced so didn't pay much attention to it. However, my symptoms really came into play a month after stopping the pill. I had been on it since 17- was 28 at that time. Two years since problems started and diagnosis and symptoms are still pronounced. They get worse mid cycle and stay bad until period ends. I am thinking of caving and trying the pill for more symptom stability. Any experiences to share? Thanks

What does a biofeedback hand thermometer do?

I tried florinef for about 2 months and it did help alot. My BP actually would be over 110. But I gained weight and decided I didn't want to band aid problem anymore. Symptoms got better with exercise and starting GF diet (found out I have celiac). Relapsed so decided to try midodrine. Didn't like the way it made me feel so stopped after 2 days. That was over thanksgiving. Been on no meds and have good and bad days on weekly basis. Still have heart palps and low BP but quality of life not hindered. So far- I am happy with my choice.

I am in your shoes right now! My family all has had just a common cold. They all got over it in a couple days. For me today is day 5. I can actually breath this AM so maybe it's getting better? But the last 2 days I have had an increase in lightheadedness, tire very very easily, feel anxious, feel like my heart is racing even though I check it and its not. Just all over feel like I have had a pretty bad flare up! This is my 3rd sickness with this condition and this has happened every time. It always sets me back. Hope you feel better soon!

Hi Lynnie! I know you said naturopath isn't covered in your state, it's not covered by my insurance in FL either, but have to say if all else fails you may want to consider looking into it. Of course everyone's condition is different but I got diagnosed in August with dysautonomia, granted my condition is on the milder side, but I see improvement already. I think alot of it has to do with the nutritional deficients we discovered. I got this testing done at a wellness center. I have been taking vitamin supplements for those and adrenal supports herbs. The latter is because I also had hormone testing done that showed extreme adrenal fatigue. Anyways just wanted to share. ☺

Oh sorry- for now just gluten. I am going to see an allergist next week I used years ago and see about any other possible sensitivities.

Hi Rachel! I have been gluten free for almost a week now and honestly have felt bad. Just so you know I have had a cold though so I am sure it's been a combination. However speaking with my neuro and my sis in law who is a hollistic practitioner- they both say my body will detox and I most likely will feel worst before I feel better. I found that link that someone posted earlier on this thread about the gluten summit so interesting! And last night I ordered the book the brain grain. I feel very strongly that my dysautonomia is linked to celiac and have done alot of research and found studies that definitely find a correlation. A suggestion about meals gluten free. There is a website called emeals where you choose your meal plan and every week they send you a grocery list and 7 recipes for the week. I did this last year for their clean eating plan and loved it! I am about to subscribe to their gluten free plan and try it. Might make things easier?! FYI- I have seen alot of groupons for their service.

Antibodies* I hate autocorrect lol

Sorry- I am just trying to educate myself as this is all so new. Or do you mean a test for autobodies just in general that can attack nervous system without specifically for a certain disease/disorder?

Thanks katybug. Do you mean a panel that would test for additional or underlying autoimmune diseases like Sjögren's, lupus, celiac etc. . .i had all those done. I am just wondering if my team at cleveland misses something they should've checked for. . .i did find out I have celiac.

Hello everyone! I am new to the forum. Can anyone explain what neurological autoimmunity is and what tests are done for it? I am being treated at cleveland clinic and have never heard these terms used by them.

Hi Angelina! Yes. I was put on a more potent multivitamin, a b complex, and zinc supplement. I need a vitamin D! Thanks for reminding me. Lol I also just learned about the GF seal. Gosh- this is all so overwhelming. As if having pots wasn't enough! HA hope this becomes easier as I get use to it. On a side note- were you diagnosed with celiac? If so how did GF diet do for you?

Hi pink! Thanks for the response. That's good to hear about the endoscopy! Hoping he gives me a choice next week. . .but I did talk to someone else on here who said it was the only way that they found an ulcer she had. So idk. . .we will see! I have to say only a few days being off gluten and I have been feeling terrible. I guess my body is in shock from gluten withdrawal! Nonetheless, I see rainbow at the end of the tunnel.