sue1234

So glad to hear everything is advancing into the right direction, even if it might be a slow road to healing!

Yes, long time no "see"! Good luck on this journey. I guess as long as you have a doctor you see occasionally, eating low carb will be the way to lose the weight. That is the ONLY way I can lose weight.

I had all those tests for my chronic bloating, although I don't have any heartburn. I had a 24-hour total of 77 episodes of reflux. My score was 7.7.

Count me in. I've been "flushing" for a few years. It also is worse in the evening, as many of you have said. Mine starts around my upper abdomen then travels up and down my hands. My hands swell and turn red. It all lasts about 5 minutes in normal weather, or if I'm in a warm/hot environment, it won't go away until I go to a cooler environment. I have wrinkles on my fingers because the skin has stretched and shrunken due to the swelling so often. I also have not worried about a formal diagnosis for it, as I know it is just part and par for the POTS course. Trev425, I'm just curious if your neuro mentions what virus specifically he thinks might be linked to POTS?

I don't know anything about mito disorders, but I'm just guessing that to get a diagnosis, a biopsy would probably be needed. The only thing I've read recently is there are actually sometimes root issues that can cause mito disorders to be a secondary problem. I am assuming if the root problem can be fixed, then the mito issues improve. Good luck!

A couple of years ago I went low carb, and over the year lost about 45 lbs. I needed to lose it badly, and felt much better without having to "drag" that extra weight around, because I am so deconditioned, I just don't have the energy! I did find, however, that I spent that whole time with way less energy. I have since added some carbs back in and I felt more energetic right away. I gained back about 5-7 lbs. and just yoyo back and forth. It does really help in weight loss, though, to go low carb. When you think about it, I lost 45 lbs. only through diet, because I sure couldn't do any physical activity. It would have been amazing to see how much I could have lost and how fit I could've been if I could have exercised!

Tuesday, this may be over-simplicated, but have you had your calcium levels checked on various occasions? High calcium caused by hyperparathyroid can cause big problems with GERD, among other things. I see on Micheller's signature that she lists anxiety and depression, which can also occur with it. If there is any suspicion of it, make sure that along with calcium, they check ionized calcium and PTH.

Thanks. I have been telling my doctors for the last few years regarding my sitting up or bending forward for more than a second, it feels "like my circulation is being cut off". In those exact words. That's why I'm really curious how your mom describes what she felt. Heck, even when I'm extremely bloated in my stomach area, it feels like my circulation is getting compressed and cut off. I end up pacing the room, hoping things will move away from the exact area they're at because it causes anxiety/lightheadedness.

Katybug, I'm curious what your mom felt like with it pressing on her aorta? The reason I ask is when I sit up in a regular chair, I feel like my stomach is pushing up through my diaphragm, giving me a pressure feeling from that point up through my chest and head. Then, if I don't recline or change position, I start getting a pulsating feeling in the lower chest area and then I begin feeling anxious and lightheaded at the same time. It really gets bad. That's why I haven't been able to sit up in normal chairs for a few years. I have been diagnosed for a decade with a "small" hiatal hernia.

Most of the things I feel are somehow connected to my head. When POTS hit, I was lightheaded and had off/on head pressure. My bad feelings are not all related to being upright. I can have days where my head feels pressurized, and it affects my vision, my ability to really interact with others, my perception of feeling bad, etc. I don't know if that made sense, but I can get up one day and feel fine in my head(normal for my POTSy self) and the next day get up and feel "off" in my head, unrelated to posture. I do know one thing...posture in uncomfortable positions makes it all worse. I feel like I am cutting off my circulation and the pressure builds above that until it reaches my head. Everywhere I go I have to make sure I am in a perfect sitting situation or I feel really bad.

What kind of doctor is working with you on the methyl injections? Is it a mainstream doctor or a holistic-type MD?

Does this happen to you when you try to sleep sitting/propped up? I was thinking about possible Chiari or something similar that maybe your skull/brain shifts when lying down.

For me, my Mayo Jax endocrinologist referred me for the autonomic reflex screen. The doctor associated with the autonomic lab report is a Dr. Eidelman, even though I never saw him, just the tech that did all the testing. They had told me not to eat for 2 hours before the testing, but I reminded them that I was at Mayo for hypoglycemia, so I could NOT skip meals/snacks. I remember going ahead and skipping my snack near the test time, but I did take 2 glucose tablets before the test to make sure my glucose was up in the normal range. They had never mentioned salt, fluids, etc.

That's good that you are moving forward with it. Yes, do remind us when it is time!

Congratulations on your accomplishment! You're right...every little positive thing adds up, so enjoy them!

Interesting about the methyl shots. I had asked one of my doctors a few years ago about anything besides cyanocobalamin, and they said there wasn't anything else available. Now it seems they were just trying to not look any further. I take the c. shots, but now may ask to switch to methyl. I am heterozygous for MTHFR.

Maybe pooling is on a spectrum, and we're on the severe end. I have noticed in the last year my youngest daughter, who is healthy and in college, has that mottled blue/red look to her legs below her knees when she stands. She has a life, and does whatever she wants. Me, on the other hand, need to elevate my blue/red legs to get my blood back to my heart and calm down my adrenaline flow.

Yogini and Blue, about 2 years ago I went to an allergist about being tested for MCAS, but she was not familiar with it and didn't want to. I asked if it seemed okay for me to try various meds used for it and she said she couldn't see any reason not to. Then I tried various H1s and H2s on my own, and I have always felt awful on them. Then I decided, in my opinion, that having a diagnosis of MCAS didn't mean that much to me, as it was just another symptom of the whole POTS(another symptom) complex. This really bad susceptibility to heat began last year, and I can see this year it is already going to be worse. The reaction I get to heat is the ONLY symptom with the whole POTS entourage that seems almost "life-threatening" to me. Everything else is just "life-altering". Katybug, that same person that said somewhere it showed that 57% of people do well after one dose also said that it was recently cleared by the FDA for chronic urticaria. I don't know if anything this person says has validity behind it. I was thinking Xolair would be a last resort for me to possibly use in the warmer weather months.

I can't take it as I had read a few places it lowers blood sugar, and I already fight low blood sugar. I initially was going to try it for my ear ringing.

I was reading this article and thinking this is very similar to what I feel like. http://abcnews.go.com/Health/ohio-soccer-player-dangerously-allergic-sweat/story?id=23367577&singlePage=true I am wondering if it is really an allergy to sweat? I get this kind of thing, but not to the extent of my throat/tongue swelling, but I don't stay in the heat long enough to see what happens if I continue in the heat. My point is I barely am able to sweat, only a moistness and only in a few areas. I just do this when I hit above my comfort zone, which can be just 80-82F. It is not hot enough for sweating, but I start swelling and itching intensely. I just wrote a post about this a week or more ago. I have seriously wondered if I would go into "shock" if I cannot correct my overheating! I will save this article and possibly bring it to my doctor. I see there is an injection that can counter this reaction, and someone was saying in the comment section that, on occasion, only one injection was needed to put this reaction into remission. However, I feel like I still need to get to the bottom of WHY this is happening!

Thanks for all the tips. Bigskyfam, all I can say is good luck. In the beginning of my POTS for the first few years, I didn't seem to have a problem with the heat. Now it is intolerable.

Yea, Katy, I understand that point about cooling down. Being in a warm/hot environment is my WORST problem with POTS. Everything else I can moderate. If I am ever in a situation where I cannot cool down, I think I will be in a serious situation.

I had iced water with me, but it only does so much. And I actually own a cooling vest, but it never seemed to help in the past, so I don't use it anymore. To me, the cooling vest doesn't touch the skin tight enough to feel the coolness. I feel like a hopeless case with the heat. I'm noticing it is worse than last year. It seems to be progressively getting worse.

Yesterday we traveled to another city for a few hours. Here in the south it was around 78-80 degrees and somewhat humid. Everytime we stopped at a store for my husband to run in to get us some things(some groceries, etc.), I sat with the windows open. No sun, just cloudy. Everytime, after about 10 minutes, my hands start swelling and every vein is engorged on my hands AND fingers. My eyes get blurry and feel strained. My heart was picking up. I feel like every vessel is just opening up to help me cool down, but I don't sweat. I didn't have a blood pressure cuff with me, but could guess that my blood pressure was dropping with all the vasodilation. Doesn't this scenario fall into a "shock"-like scenario?? You may ask why I didn't start the engine and a/c. Our car has been having some kind of funny idleing issue when the a/c is running, so I didn't want to run it(I'm afraid I'll ruin something and the car won't start at all!). Anyway, anyone know if there is something a doctor can do to help me not vasodilate so much in the heat so I don't feel like I'm going to pass out?

Looneymom, no they didn't check IgM. Thanks for the link, it sounds like everything is so complicated yet pertinent. Katybug, thanks for the encouragement! xRobin, lejones1, TCP and Chaos, thanks for all your stories and information. I am finding some of the same stuff as y'all have found, that some researchers don't worry too much about elevated levels. But, I also found quite a bit of Pubmed papers mentioning various viruses(EBV and the other herpes-related viruses) that reactivate and are sometimes linked to CFS, sometimes to various forms of neuropathy, and finally actually to dysautonomia. Because there weren't a lot of articles on the subject of dys., I didn't know if that happening was very rare or what. BUT, it has happened. I had this test done as part of other testing done after my first visit with a Functional Medicine doctor. I saw her PA for the first visit for an in-depth history and initial labs. I will see the doctor next week. I can't wait to see what her "interpretation" is of this. I've been telling my husband for years, that besides having the signs and symptoms of the POTS, I have also felt like I had the flu, just without any signs or symptoms! This might explain why.