sue1234

I have to say I have NO heat tolerance! So summer is bad for me. This past winter was the first with her that I couldn't handle any cold weather. I am only good between 74-79F. Of course, caffeine alters that for an hour or so.

For me, it has been a very annoying problem. I have always drank iced tea for the caffeine to get my sluggish bowels going in the morning AND to help me wake my brain up. I literally take all morning to "wake" up, as I watch morning tv. Anyway, taking in caffeine is a fine line of good and bad. Like the last couple of mornings, I get cold after I drink it and that causes me to feel funny-headed. At the same time my fingers turn white from I guess Raynaud's. Even though my thermometer in the living room says it is 77F, I have to turn the heater on to make the vessels let up. There is NO middle ground! Without caffeine, I can't get my brain functioning and I normally just vasodilate, so I need some tightening from it, just not overboard.

Ophelia, I just saw this new release on Pubmed, and wow, how timely for you! It is talking about 2 people with syrinxes(?) and dysautonomia issues! http://www.ncbi.nlm.nih.gov/pubmed/24847769

Yea, I've read up on syrinxes(plural??) in the past in relation to chiari and tethered cords. Would be interesting to see how much it has been affecting you, as in all the POTS stuff. Be sure and keep us updated!

Yay! Good for you! And the next appt. isn't too far away!

Totally agree, Raisin!!

That first article is very detailed with good information. The second article is interesting, and I hope Tyler gets benefit soon with his IVIG to clear it up. Reading all those signs/symptoms in the first article make me so sad. I think of the "psych" patients that get incompetent medical diagnoses. They receive meds that make them less of a nuisance, but look at all the autoimmune disorders listed in that article that produce psych issues! Those psych patients cannot cognitively research like we do for possible causes, so they will most definitely slip through the medical cracks for possibly the rest of their lives. I'm sure there might be a rare doctor that recognizes the changes and thoroughly tests them, but I'm sure it is rare. I have some of those symptoms, and some I have never had. It still makes me wish I could be tested for MANY different autoimmune markers.

Science Girl, I cannot sit straight up, as I feel abdominal contents are being pushed into my chest. I know that is exaggerating, but it feels too "tight". I always sit somewhat reclined and cannot drive because I can't sit straight up enough. So, are you saying you have Nutcracker? BTW, I have a stuffy nose, too. Never had that all my life, but do have it with POTS. I never thought about why.

I have that feeling when I lie on my back. I start out okay, but after about 5-10 minutes, I feel like my chest is "caving" in and I don't feel like my breath is making it to my lungs. I used to love sleeping on my back, but now I can't. I can sleep on my left side, but very uncomfortable. It comes down to being like the Princess and the Pea...I can't get comfortable!

Can I ask what labs showed up as positive? Each adrenal has a small nodule on it, but my 17-OH? or whatever it is that was tested was normal. However, I started having worsening issues with facial/body hair in my late 40s(I'm 54 now), so always wondered. My testosterone is always normal, but I've never had my free T tested. I do know that about 15 years ago a holistic MD put me on a low dose of Cortef(5 mg.), and I felt wonderful...awake and alive! Back then I didn't really understand cortisol, etc. I quit it under a year later. In the last few years I've read a TON on adrenal issues, and realized that adrenal hyperplasia people usually take a small dose like I was on. I then wondered if that was why I had felt so good...that I had this, and that Cortef was the missing piece. Did the cortisone help you?

I cannot plan anything, mostly because I can't do anything most of the time. On those few times I feel I can walk into a store for 5 minutes, I spontaneously do it---no planning to do it. I definitely can never host a family get-together, other than my kids. All of my extended family get togethers are at my sister's house or elsewhere. I just show up, most of the time. I would have enjoyed taking one of those online free college level courses, but I'll have a week or two where I am at my normal, and then a week or a month where I just cannot think. So, I don't even start things like that. I don't drive, so I am used to not doing things(not that I like it that way).

Katie, this is my story regarding my thyroid: Removed in 2008 due to compression when lying down. When the surgeon took it out, he said it had swelled and shrunk so many times due to Hashimoto's, that it had "shrinkwrapped" around my trachea! Glad it's gone. So, I had to wait 2 weeks to begin meds and then started on a usual replacement dose. Around week 2 and 3, I felt like a zombie. Then the meds got into my system and I begin to get my thinking back and some energy. I also have had POTS by then for 2 years, so not sure what "normal" feels like anymore, but I go on with life. My labs for a few years show normal. 2 years ago this spring, my TSH decided to plummet. It stayed around 0.002-0.02 everytime labs were checked. MOST of the time, my accompanying FT4 and 3 were in the normal range, so my endo said don't worry about it. Well, I had to get a new endo last August and she wanted me to go down in dosage from 100 to 88 mcgs. After 4 weeks my abdomen blew up like a balloon as it seems my intestines were moving like a sloth (Milk of Magnesia produced results, just not nearly enough(sorry TMI)). I then asked to try Armour and she started me on a baby dose. I felt great the first week, and then by week 2 was a sloth again. I'm thinking the added hormone to what was already in my system showed I could actually use more hormone I asked if I could bump up and the nurse said emphatically NO, that I had to do this for 6 weeks. So I got back on my old 100 dose and quit that doctor, My new doctor has me trying Armour again, but beginning at the equivalent dose to my T4-only meds. I have felt good, but know I can feel better. So, that's what I'm hoping caused my cognitive issues. I go next week to see if I can bump up in dosage, and wait for that "I finally feel really good" feeling. I hope anyway. The worst thing about changing up anything with thyroid meds, whether dosage or brands, is it takes so darn long for the effects to kick in! Sorry this was a book! I would like to add, I've tried Armour here and there over the past 15ish years, and I have NEVER tolerated the T3 component, until now. I seem to be handling it just fine.

I'm really getting worried about my memory in the last few months. When I dog sit for my son, whenever I let the dog out to do its business, I have to always set my timer for 5 minutes so I don't forget her outside(in the country). Since last fall I've been changing both my dosage and brand of my thyroid meds, and I'm hoping that is the problem. When my grown kids come by to visit, I've been repeating stories to them. And I can see the "look" they get, like they are thinking I'm getting dementia! I have got to get my health figured out or I feel I will keep slipping downhill.

Yea, that Mayo study done under Dr. Vernino was for the AAG, and one of their findings was that people that were found to have those antibodies had orthostatic hypOtension. I think the new research of the alpha-1 receptor autoantibodies is showing up as orthostatic hypERtension. It seems we all seem to fall into a few different presenting categories under the POTS umbrella. The people under Vernino, from what I understand, have the option of IVIG or plasmapheresis treatment. That's what I'm waiting for, for this study to get to that point so there is an actual option of treatment instead of symptom management(which hasn't worked for me anyway).

All I know is the research body that did this study(Oklahoma(?) and Vanderbilt) is in the process of having funds raised so that they can do this testing on a widespread basis, so that they have a large group to test this theory on. I am really excited about what they find out, and this is the FIRST thing in POTS research I have been really excited about since following various research organizations for the last 8 years. I don't know if I have these autoantibodies, but this does make sense with how I presented with the disease 8 years ago, and how my symptoms have progressed.

I agree! And that is hard to find, for sure!

Kjay, I'm sorry, I wasn't implying that you had a pheo, just that POTS can cause some to have such high catecholamines. Sorry if my wording wasn't clear!

Kjay, I remember you mentioning that before. It's amazing that you and maybe some other POTSies can have such high catecholamines to equal a pheo patient, and yet the pheo patient is able to remedy theirs through surgery. We, on the other hand, have to continue to have it wreak havoc in our bodies. Yes, I'm sure some are on alpha/beta blockers for it, but it is an unending issue none the less.

I understand that part, Andy. But, every time I get up to walk, theoretically, my blood begins to slowly pool until (I'm guessing here) I don't have enough cerebral blood flow. At that point, my adrenals release catecholamines to vasoconstrict. Because the antibodies block those receptors, the adrenals put out even more cats., until I reach that point where I feel like I need to sit...NOW. I guess my point is, I seem to aggravate my whole situation the more I have my body doing the fight-or-flight situation. The only way to avoid it is to do less upright stimulation. Once again, I understand needing some kind of movement for muscle health, but I just can't reconcile this. I've had hypoglycemia longer than POTS, but worse since I have POTS. It is a very similar situation with that. IF I accidentally don't eat in time and my glucose goes low, my adrenals spit out the catecholamines to help get my glucose up. It is an awful feeling. Even taking gluose and then eating right away, it takes me roughly half a day to begin to go back to my normal POTSy self. I hate losing 1/2 days to that.

I have the same issue. I haven't found a fix for it either.

In light of the new research about some POTS people having autoantibodies to the alpha 1 receptors, how would exercise, based on Levine's study, even begin to help? Don't get me wrong, I think exercise of some kind is important for muscular and cardio health. I just think that if you have autoantibodies that block the receptors to tighten your vessels up when upright, exercise is not going to "fix" that issue. I can see where moving around would help move the blood flow back upwards more than standing in one spot, but it won't fix the issue. (Once again, calf muscles helping work the vein flow back up is helpful). I keep repeating myself because I don't want anyone to think I am just saying that exercise won't help. When I have a better day, I can now walk up to 20 minutes(can't be hot outside). On my not-good days, 3 minutes might be my limit. The natural vasodilation of heat trumps anything, and I cannot function at all during that time.

I saw it! Yes, it was Dr. Perlmutter(not positive on the spelling). I had read his book "The Grain Brain", which talks all about wheat and its gluten effects on the body. It was amazing the before and after with the patients. I hope more people(in general, that have mysterious health issues) go on a trial of gluten free to see if there ailments are helped. I've been GF for about 1.5 years. Forgot to say, yes, it would be a good thing to try with Tyler! Sounds like some of his patients saw positive results within a week or so!

I had been taking magnesium for the last couple of years. Initially I believe it helped my POTS. In the last year I had been having a problem with muscle "seizures". I call them that because my muscle groups in the core of my body seemed to seize up and stay that way for the most part for days/weeks on end. Even though it wasn't painful, and this sounds crazy, the seized internal abdominal muscles seemed to lock up my intestines, causing me to horrendously bloat. I finally quit magnesium and the seizing has definitely lessened and at times completely gone away. When that happens, my intestines seem happy and MOVE the gas through, which is wonderful(for me anyway!). I admit I am weird and always seem to have a paradoxical reaction to things.

I've had that happen off/on for a couple of years. I've noticed it, but never actually wondered why it happens. Thought it was just ANOTHER one of my quirky issues. Let me know if you find out what causes it!

Whatever happened, Maia?? Did you ever get it sorted out as the kidney being the 100% problem causing your POTS? Did they move forward to fix it?