sue1234

Wow, LouLou, it will be interesting to see if giving them up helps you!

I have had that for probably the last 6 years. I finally have found something that contributes to it. When I eat nuts, seeds, chocolate, I notice it is way, way worse for a few days. I have given them up. It has lessened my flushes by about 75%. I'm not sure if it is the magnesium or copper in them that are affecting me. And, I think clamminess in the hands/feet are related to adrenaline.

I am in my mid50s. I was born with a congenital hip dysplasia, and I had to wear a brace as an infant to correct the hip growth. Everything went as normal as I was a toddler. At 6, I began having odd bone growth, but nothing major. One finger and both big toes were curving as they grew. At 12, I was diagnosed with scoliosis. By then, my records were sent to Johns Hopkins, and I was diagnosed with Multiple Epiphyseal Dysplasia. I only mention this, as it is a genetic connective tissue disorder, but to me, kind of the opposite of EDS. For the rest of my life, it really hasn't had any effect except for hip arthritis now. So, into my 20s and 30s, my normal blood pressure is always 90/60. I never feel lightheaded with this low blood pressure, and actually have a ton of energy up until around 40. I have NEVER been able to run, as about 1/8 of a mile in, I was always extremely out of breath, even though not anemic. I gave my childhood/early adult history to point out that, even though I had this genetic thing, it did not affect me having any sign of POTS. Fast forward to 10 years ago this summer. I live where it is 95 and high humidity. That summer 10 years ago, I had constant goosebumps even though I did not feel cold(how could you with that heat!!). 6 months later I suddenly was lightheaded, and it stayed for the next 8 years. That whole first year, I kept feeling like I had a bug crawling on the top of my head(sounds weird, but I will explain!). I had my husband look constantly in my hair for anything. I began seeing doctors for my lightheadedness, but no answers were found. Anyway, about 1 year into it, I was suspecting POTS and reading all I could on it. I read that one of the meds, for some, was Midodrine. I read the side effects of it were goose bumps and top-of-the-head itching. I was like, I don't take this med, but I had those side effects!! So, after that long story, my point is, I wonder if I got a virus that summer prePOTS that attacked the receptors that Midodrine normally acts upon. Like, I'm thinking it's the alpha receptors, and maybe I'm one of those that have the autoantibodies to them. I had to edit this, as I asked if anyone knew of antibodies to alpha receptors, and then it dawned on me, that's what the new research in POTS is checking for. I don't think straight in the mornings! So, I'm patiently waiting for that study's results so I can be tested. I would like to lastly say, I cannot now "make" goosebumps. It is like the receptors are now blocked. When I get cold, my skin just does this odd, slight wrinkle.

That is great news! Can't wait to hear your experiences with it over the next few months.

I know that high IgG on any of the viruses means you had it at some point, so those they disregard. But, I don't think they understand the "reactivated" part of EBV, and I'm sure it can be causing issues.

I began taking an antiviral also (can't remember the name), and I took mine for about 3 months. I didn't notice any difference, so I quit. I was really hoping to notice any kind of improvement, but I didn't. It's possible I didn't give it long enough.

Kris, did Mayo find your high EBV levels? I have them also, but they were found by a more 'alternative' doctor(even though she is an MD). I wasn't sure what mainstream medicine thinks of high EBV levels that are the more chronic elevated levels(not the new, active ones).

I cannot tolerate our southern heat all summer either. I am hyperPOTS, too. The way I see it, heat makes my vessels vasodilate to try and cool the body down. When that happens, my blood volume "sinks" to the extremities even more than it would under normal conditions. Then, being that I am hyperPOTS, that circulating adrenaline load just exacerbates the body being hot. I noticed I quit sweating since I've had POTS, so I cannot cool down. I have tried cooling vests, rags, etc., and nothing works for me.

Nothing helps me in that kind of heat! I bought a cooling vest years ago, and it just did not do the trick. I drink and carry iced bottles to run on my skin, but nothing works. I just vasodilate in response to being hot, and then that compounds POTS in general. Then my heart starts racing, my vision goes blurry and my brain slows down. I don't even attempt anything over about 82F. I hope you can tolerate some of it, as being stuck indoors all summer is for the birds!

Regarding sugar, what exactly are the hours like after you eat something sweet? I have low blood sugar issues and feel horrid if I eat too much of a sugary thing due to the whacky insulin levels, then a crash into hypoglycemia. Also regarding sugar in general...if anyone has a tendency at all to get somewhat elevated glucose levels after eating(even not in the full diabetic range), remember that the body compensates for that by trying to dilute it in the bloodstream and eliminate it through the kidneys. So, for us hypovolemia, this may exacerbate our low volume by losing even more fluids.

I drink ALL day long! I am always thirsty. I drink iced tea in the morning, but water the rest of the day. I eat my salt all day, and get potassium from my fruits. I pee ALL day long also. My urine is slightly yellow, which surprises me. I would think with all that I drink, it should be clear. I have had my Vasopressin tested twice about 7 years ago, and both times it was low, so maybe that's why I am always thirsty.

Ok, I finally had to zoom in on the area for the cursor to let the info pop up. So, then that pops up, and I get the "rs" numbers. I type them into my 23andme SNP box, and it won't show anything for them. So, my hopefully last question is, how do you find your A or G data to compare to the data at the purple boxes? I forgot to mention that I first looked up the location #s, such as 664052(example) instead of SNPs against the X chromosome list I had listed with all the intergenic SNPs. Nothing from the purple dots match any of the numbers, so I couldn't match them up that way.

How irritating...I got all the way to the screen like you put a picture of, and when I have my cursor hover over the purple areas, nothing pops up. When I bring my cursor to anything outside of the red-lined area, it does show pop-ups. But, bring it back in where all the purple boxes are, and nothing happens. Even clicking on them, nothing happens. I was so close!

MightyMouse, I looked up the SHOX gene in my 23andme data, and it just tells me I have "Your data includes 0(zero) SNPs on this gene, located on the x chromosome". What did you type in in the gene box to look at your SNPs? I typed in SHOX.

Mine happens if I get out in the heat. I don't get a visible rash, just as I get hotter, I get itchier. I have quit sweating for the most part, so I am picturing things going on around the sweat glands to cause this. Maybe trapped/built up toxins, etc. Just my little theory and probably wrong. Oh, and when I do begin to itch, it happens mostly on my torso.

Glad it went well!! I've been through a couple of upper and lower scopes with POTS, and had no issues whatsoever. My only concern before each one was the fasting part, because I tend to get low blood sugar. The doctor gave me an IV that had some dextrose(?) in it for the sake of prevention,

I am extremely sensitive to smells, too. I get lightheaded around smells such as perfume and exhaust, amongst other things.

I just had a cardiologist start me on Zoloft, as he mentioned something about it resetting my brain in relation to POTS. I specifically asked if it would make me hot, and he said no(I was thinking about it increasing serotonin, and I was thinking high serotonin causes heat(serotonin syndrome)). I started it at a baby dose, and sure enough, a few days in I began being hot. When that happens, I just vasodilate. So, I know it is not a tricyclic, but I never do well on any antidepressants.

I have become a nose breather at some point back before or after POTS started. I didn't pay attention to notice exactly when it started. If I breathe through my mouth, it feels like I am either not getting enough air or too much(hard to explain!). I almost get lightheaded mouth breathing. I have a "skinny" nose, and feel a resistance when I breathe through my nose. It is almost like I need that resistance.

I was diagnosed as adrenergic POTS. I can't remember what my resting b/p was before the TTT, but my usual would have been around 115/72. During my TTT, my b/p went up to 170/110. That's how I got the label.

I saw a new cardiologist and he wants me to try Zoloft, "not for the antidepressant effect, but for the effect it has on neurotransmitters" (in his words). I have never tolerated antidepressants prePOTS, and not expecting to tolerate them now. I was reading the literature that came with it, and it said, "Tell your doctor if you are dehydrated, have low blood volume or have low sodium". That sounds like they are referring to someone with Addison's disease, BUT, I'm concerned about the fact that I think I am chronically dehydrated to a point(as many of us seem to be), along with the low blood volume, which has been shown in research in patients like us. So, my question is, did anyone here take it and have awful effects that may be related to the fluid issue? Or, does anyone have any thoughts on this? I don't know what fluid status and Zoloft have to do with each other.

That's great! I can imagine breathing issues can be scary, so getting that sorted out must feel wonderful! So you think the Florinef is what helped?

Pre-POTS by about 10 years, I remember helping my son with some reading in the evenings before bed. I was trying to get him interested in why he should read, so we started a book that was interesting to him and I did most of the reading. After a couple of nights I had to quit the reading. I found after maybe 10 minutes I was out of breath. Fastforward to POTS, I quit doing a lot of social talking. Besides running out of breath, it just aggravates how I feel. I won't "visit" with anyone one-on-one other than my grown kids. I CANNOT be forced to carry a conversation, as when I hit my limit, I need to quit talking. Luckily, my husband LOVES to talk, so he easily picks up where I can kind of sit back and be quiet(I was always a more introvert anyway). Kind of related...I noticed when I roll over in bed, which is a huge, whole-body process as my muscles are weak, that I kind of do a Valsalva maneuver at the time due to the straining. As soon as I settle back down, I get a flush. Does anyone know what a Valsalva and flushing/vasodilation means??

I don't think I've ever had that test(or lactic acid). Just curious what the test was drawn for? What is your doctor looking for in relation to POTS?

Awww, sorry for your loss. What a rough time for you. Just post here if you need to "talk", as there are lots of listeners here.