westernmass

Thinking of you and sending positive vibes...

I've gained about 15 pounds... I assume from inactivity but not sure bc I also eat much less now but bloat a lot... I've been continuing an exercise plan and hope to lose it. I was 114 when I got POTS and was 129 at last dr visit... I think I've dropped a couple but its hard to tell, I look skinny in the morning but pregnant after lunch

Could it be all the sugar in the Gatorade? I don't know if g2 is different from Gatorade, I avoid all that stuff because of the sugar and/or aspartame, plus the dyes.

I get a sensation like the room is moving, almost like I'm about to fall down, while sitting (pretty much specifically while reading...) and a sensation like the bed is moving, almost like being on a boat and almost like the drunk "spins", while laying and trying to fall asleep. It's new for me, probably started noticing a month or so ago. In the beginning my dr was very specific to differentiate between presyncope dizzy and vertigo dizzy, so it's strange that now I have both... Oh, pots...

I've been experiencing it while trying to fall asleep and also while reading recently. Not sure what causes it but I wonder if I've been drinking less...?

THANK YOU all. This is why this forum is so wonderful. Thank you thank you thank you. I guess in those situations I just sort of mentally check out- I've heard it before and am already figuring i won't be seeing this person again. I am lucky to have a great primary doc who is willing to experiment, test for things as they come up, etc. He doesn't have a lot of experience with pots, but he has three of us in the past year. Thanks to all for the support

I have a list of known food intolerances, including gluten. I feel better within a week when I am strict on this diet, and my complexion is so much better! However it is a tough diet to follow and I keep repeating this basic pattern: two weeks on, on week off, three weeks on two weeks off, and so on... Especially this time of year I keep falling off the diet. Am currently getting back on it, so I find this post motivational to stick with it! Fwiw- I have tested negative for celiacs.

...I swear I'm gonna faint!! (LOL) My new cardiologist was a huge disappointment. How can they say there's no point to trying medication!? I've only really tried a bb, midodrine and one week on florinef... I'd like to maybe try florinef again and/or mestinon. He literally said "POTS is a pain in the a$s"-- which sure, is true, but made me feel more like he was saying it was a hassle to deal with us potsies. Also, any doctor recommending French fries is suspect to me. There are healthy way to get salt. UGH. Back to the drawing board. This was a follow up from my trip to Boston for autonomic testing... Where I was told pots is a "hormonal young woman" thing, "no one over 40 has this" and to, yes, of course... Drink water eat salt and exercise! As if I couldn't have found that for free in the Internet... I wonder how many people I've PAID to have tell me that...

I have done some traveling in South America (costa rica and Peru) and although I don't remember getting sick at the time (except actually in Peru) every once in a while I wonder if I picked up whatever is causing my pots there. How did you know you'd been infected- what were your symptoms? Did you get very ill?

Hi Jennij-- sorry I have no advice and haven't heard of him, but live near nh and am hoping you get some answers as I am also interested.

Thanks everyone, I really appreciate the support and stories. I think the thing I struggle with the most with pots is the uncertainty of the future- some people recover completely, some get better, some stay the same and some get worse. Science is lagging as far as finding underlying causes and treating accordingly. I struggle with this because I hate not knowing whether to accept I'm sick or fight or not knowing if I will be better for a month or a day or forever! Anyway, once again I do appreciate the support. I don't want to let pots win or to let it make me bitter. You all are wonderful and I wish you all some good days-- actually I wish you all good health in general!

I've had three or four good days in a row now. This is unusual for me. Although I don't have some of the really extreme versions of symptoms like others of you, it is rare I ever feel "good". So I should be loving these past few days and feeling happy and grateful....right??? I'm finding myself feeling kind of down about them! Almost resentful! Like I'm used to living with the pain and fatigue and nausea and dizzyness... What am I supposed to do with good days? LOL. Part of me gets all anxious like "is the pots gone finally!?" But whenever this has happened in the past I've ended up overdoing it (by day having a coffee or a drink or doing too much at the gym) and crashing. So I've been taking it easy. I feel scared I won't have these days and angry that I don't have them all the time like I did pre-pots. I get scared tomorrow will be doubly worse to make up for today being good. And I even get scared that if I didn't have pots anymore... I'd be even more lost because the dx as difficult as it is still gives a name to feeling so terrible. It's these days where I question my sanity ("am I really sick?") even though I KNOW I am and have had all the tests, etc to show for it. And then I get so frustrated with the lack of answers, lack of a game plan to get better (other than h20, salt And grade exercise) and I get upset that my doctors don't have much of a plan and BLAH!! Geez I'm sulky today! I believe this is my first rant here. I apologize if I sound ungrateful- normally I'd kill for "good" days. Can anyone relate or am I just sullen and sulky and need to snap out of it?

How do you get tested for autoimmune dysautonomia? I have a hunch something autoimmune is at the root of my issues.

Well, geez! None of my doctors are writing about me being attractive. Time to break out the mascara I guess...(lol/jk)

I feel this way, actually for the past couple months. I keep feeling like a cold is coming on, sore throat runny nose some sneezing or coughing- ill be saying "oh crap I'm finally sick now" and then it'll be gone the next morning or afternoon. Never has actually developed into a cold. Not sure what the deal with this is?

I do. I don't eat gluten, eggs, dairy, nuts, garlic/onions or apples/pears. I got allergy tested, and these things popped up as bad delayed allergies (ie not anaphylactic but my body doesn't tolerate them). The test is fairly controversial as far as how effective it is, but I have seen significant improvement in my digestive issues. If I fall off the diet (which is easy to do) not only will my skin be worse, but ill have stomach issues/nausea etc for the next couple days. Been on this diet for about a month- tbh I hate it- but definitely feel better when I follow it.

I was on midodrine for a few months. I liked that it gave me more energy but didn't do much for my other symptoms and I eventually got sick of the side effects (itchy scalp, crawling skin, goosebumps all over and afternoon headaches) and figured I'd rather deal with the fatigue than those. Good luck though!

LOL I like the banana story. Thanks for the info!

Thank you! I'm planning to supplement with those few borderline vit issues. Do you know what the MPV and the EOS numbers would mean for me? Like if you were explaining it to an eighth grader... How might this play into my pots?

Hello, I'm looking through some reports of labs I had done back in August. I have some questions I hope some of our medically-inclined people can help translate. There is a list under "test name" and it starts with "CBC". Under that test there are a bunch of things, WBC, RBC, MCH etc and one, "MPV" is indicated as a high level (11.5)-- does anyone know what this means?? Question two. Blood test under the title "diff auto", my "EOS" level is high at 6%. Translation? Question 3, my folate level was high at 21.4 ng/ml, vitamin d and b12 were borderline low-- any idea what that indicates? My TSH was also back up to 2.5 which is subclinical hypothyroid- I have a positive ANA as well. Anyway, most of this (all of it except the thyroid and ANA stuff) I have no idea what it means or indicates and if anyone can help I'd really appreciate it!

Hmm.. Well after reading that I'm not sure that's the test I had-- at the very least, it didn't last more than a few minutes. It seems that maybe it's just another sign of autonomic dysfunction? Or would this be neuropathy (I'm not too familiar with what this means to be honest)? Does anyone know if the "sudomotor reflex was absent in the lower extremities" offers any further clues to my POTS-puzzle?

Ok guys, another question from m autonomic work up at Beth Israel. All I can figure out is that it has to do with the sweat test- they had the little electrode thingies attached to hands and feet... Is not having a sudomotor reflex in the lower extremities relevant to anything? What does it mean?

Title pretty much says it. There was no talking during my first and talking throughout my second. Wondering what effect that may have?

LOL this made me chuckle! I totally get how you feel. And sorry you aren't feeling well. I usually say I feel "sick" but my favorite description is "seizurey". I hate feeling seizurey

I tried doing it much looser (actually had to sort of hold it on with my other hand) and it wasn't "painful" but my lower arm did start to get red and I could see the vessels swelling. I tried it on my right arm, too, with milder results but same basic thing. Puppy and purple- interesting idea about circulation, I guess that makes sense. To be honest I don't really understand the blood pooling situation, but I guess if it pools in your legs or abdomen depending on position, it could as well in the arms especialyl since you arent moving. I know during my second TTT I had something on my finger (maybe an oxometer or whatever) and my finger turned deep purple and hurt SO bad... lol.