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.

Sorry, Rachel! I have nothing to add as per ideas. I am new to this myself. However your son will be in my prayers and everything that I have read the younger someone is when this hits the better, so there is definitely a reason to be VERY optimistic. I have learned a lot in the few days since I joined the forum. I am sure someone will reach out soon with some ideas for you. Take care.

Thanks for replying! I was told that it is genetic. I plan on asking the GI doc more about that next week. Funny thing is my sister has some issues as well, but neither my parents ever have foods phase them. Maybe it stays dormant in some carriers? Idk. Interesting. . .my neuro ran several tests and sent me to a rheumatologist to make sure there was no underlying autoimmune issue since she knew about the "wheal" episodes years ago. I was tested for lupus (extensively), sjorgrens, Lyme, and some others. . Gliadated IgA test came back positive which indicates a gluten sensitivity or intolerance. So they decided to look further and test my TGG-IgA. It came back positive. With this test, all negatives still have to have further testing because you can still be celiac and have negative outcome. But you cannot have positive outcome and not be celiac. . .make sense? I haven't had biopsy and as of right now do not plan on letting them do one. I don't see it changing what I have to do about the disease and getting anesthesia with POTS scares me.

I also have some days when I feel completely "wired but tired" like I am fatigued but my adrenaline is surging. I brought up hyperadrenergic POTS to my neuro, but she thinks that I should be worse off with my symptoms if that was the case. She tells me my autonomic system is working at 90% compared to normal person with 100%. And I don't have blood pressure has ever been actually high or low. When it does fluctuate it is border lines. I have been told to stop searching for answers because she thinks my anxiety is starting to play a role in all this as well. I know she is right!

Thanks for responding! Going on for about 7-8 years have had stomach pain after eating certain foods such as spicy, fried, sweets, etc. indigestion, constipation, belching, heartburn. . .thought the last year these symptoms have been more prominent. It's now on a daily a basis. 6 years ago had "wheals" which are hives that appear under the skin not raised on top, on bottom of feet only on and off for about a year or two. Since then, have only had about 5 wheals randomly appear same area and at different times over the last four years. Last May started having tachycardia episodes, lightheadedness (this is what brought me to a doctor), floaters in eye, flashing light in peripheral vision whenever I lay down at night, brain fog, extreme fatigue, exercise intolerance, shortness of breath. These are all my symptoms we believe are related to dysautonomia; however, I just completed pulmonary testing because one of the specialists suspects asthma which would make sense because I have ALWAYS had intolerance when running and so forth. (Heart has been checked out several times- echo, numerous EKGs, 24 Hoosier monitor, and 2 week instantaneous recording device, chest X-ray. They found episodes of tachycardia, of course!, but everything is normal with heart besides. Nutritional deficiencies- ALL b vitamins are low, zinc, and vitamin d. We now believe this is because of the undiagnosed celiac. I was on florinef, but insisted on trying to go without it and I am no better no worse not taking it. Plus it made me gain 12 pounds after one month! Been off about a week now. Just now starting to go gluten free, am on herbs for adrenal support and soon gut support, dr. Ohirras probiotic, multivitamin, b complex, zinc, add pink Himalayan salt to a lot of my food, and drink Himalayan salt solution every morning. Plus every day have a greens and pea protein smoothie. My neuro is also in touch with Dr. Levine to get his exercise protocol for pots patients. As last week I was feeling so great I decided to do 30 minute power walking cardio 3 days in a row and on the 4th day was so lightheaded couldn't barely function. That was a wake up call that I can no longer be an overachiever in certain things and need to slow down.

Thanks, Lyla! Wish you the best as well.

Hello everyone! I am new to the forum. Symptoms started back in May 2013. Told by several docs that I had a severe generalized anxiety disorder. Have an MEd in counseling, but started to think that I did too! Finally went to Cleveland clinic in south florida where an AMAZING neuro who specializes in the disorder sent me for autonomic testing. TTT, QSART, and Val. Maneuver all positive. She feels my condition is most resembling POTS although is hesitant to put me in that category because she says my condition is mild- even though it feels severe when it's happening you know? Anyways, she wanted to find an underlying cause especially since 6 years ago I had urticaria that was unexplained on and off for 2 years. Went through more testing- yesterday found out I have celiac disease. I feel foolish because the signs for this disease have been there on and off for YEARS. . .maybe like 7-8. I also have many, many nutritional deficiencies and now know why. Has anyone else been diagnosed with celiac as well? She is hopeful that addressing my celiac will improve my dysautonomia. Any luck with gluten free diet for anyone else? How long before you saw improvement? I have a toddler and hope to regain my energy and ability to stand for longer periods soon. . . Toddler doesn't understand and it makes it so hard. By the way, anyone in south florida thinking they have this please go to cleveland clinic! I went through 2 ER visits and several doctors before going there and have been SO happy with my experience. My neuro is very knowledgeable.