roxie

I'm starting to go high too. I'm not sure if its ALL the meds I'm on to raise it or if its happening on its own? My dr said "you're trading one disease for another." That's a frustrating thing, I couldn't function well with meds now we have to figure out why this has changed and I'll function even less wihtou them

Chaos, that's really interesting about the QSART. I think I sweat a lot during it. The dr asked me "do you always sweat this much?" Sometimes! I've been trying to look if excessive sweating on the qsart indicates anything but I habe found anything.

Thanks Issie. It's like we live on a pendulum. At the dr last week he said we may try to take down the florinef and see what happens. I did a 24 hr bp monitor mon/tues. (you should see those bruises!) and I go see him next week to get the results and see what he wants to do. Im glad your feet are showing some improvement. I have to wear shoes all the time too Bc my feet are so flat and because the tile floors and my house is on concrete. I habe these sketchers sandals. They're ugly but they work!

That does make some sense. I didn't get a lot of time with my dr last yer after all my tests but on the my patient portal thingy it has me listed as having idiopathic peripheral autonomic neuropathy. Plus a million other things, I don't know if that was for a diagnostic code of that I do have some form of nueropathy, its possible.

Is combo pots considered a viable diagnosis? I know I saw it on that blog but I didn't know if dr's accepted it. If so, I probably have combo pots and am currently swinging towards hyper. Whenever I read Pots articles i feel like i fit all the subtypes too, so yeah. I've been having pretty high bp and that's prompted me retook into hyperPOTS again. But it may also be because i started clonidine, its known for its synergy and with everything I do & take to raise my bp, it figures clonindine would double it. Sad Bc clonidine has taken my hr down more than anything. I'll have to see what my dr says next week

Let us know Joy. I've wondered about emailing but have always been to afraid

My ttt last year showed both POTS & NCS. From what I understand not everybody has both, I wonder if I have hyperPOTS, at least sometimes. Can you have hyperPOTS with NCS?

There's a section on Dysautonomia! This is a massively long book

Thank you!!!! Een if we don't have CFS we are chronically fatigued maybe some will help. Going to download it now

I have a LifeSource one but its on its way out, just got a Welby wrist one. It was on sale. Does anyone know about welby monitors?

Naomi, I don't believe you have to be short to have mito. I had an old friend who has MELAS, she and her mother who carries the gene are very tall. Around 6 ft. Don't know of this site would offer any help http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7929671/k.BDF0/Home.htm

Awesome! I've never had my breaths per minute checked. Is there a way to do I yourself?

Have you checked the mitoaction site to see if they have a forum?

I've never been to NYU but the dr tht did my autonomic testing last year did his residency there. He says they get a lot of pots patients from Philly and around PA. So they do know about pots

I got the shot, was a little woozy for a day or two and then was alright. I've been getting the shot since I've had POTS and sometimes I have a tiny reaction but nothing like the year I did get the flu. I had my flu shot in oct & I'm still terrified of getting the flu, the news gives me the heeby jeeby's.

I had to work my way up to the dose, I think it helps me feel more "level". I take other meds along with it too.

My dr told me 40 mg is a pots dose.

Thanks everyone. Katybug, I draw a little but am not good at it and I also know how to knit but my arms have been hurting too much the past few months to knit. Thanks for talking about needed interaction in your 20s. My mom is introverted like I am and the older she gets the less she wants friends so she's always like "I don't need friends" and it makes me feel guilty for wanting friends. I keep trying to tell myself when she was younger she wanted to be around people her age, she had to have wanted that. Thanks miss traci, washing hair is hard for me too. You aren't alone in that! Pushing through is a double edged sword. Pushing through you do things but loose all enjoyment. Not doing anything you miss out and long for things, I don't know where balance comes in and works seamlessly its always a rollecoaster *sigh*

Inderal and propranolol ARE the same thing. It's like the medical & lay person name or something. For example, midodrine and proamtine are the same thing. I've been on inderal/propranalol at night since this summer. I haven't had much problem with it once I adjusted to it. It's a short acting med. I don't know why people go off of it but the rebound tachycardia may be from not tapering? Or like when we get side effects from starting you may have affects going off. The hard/scary with new meds is you never know till you try. Sometimes it pays off sometimes it doesn't

Anna, that's really interesting. I'm going to have to read more about it. What color lenses? I spent two years as a teenager doing vision therapy because my eyes didn't align, track, or cross properly. I still do the exercises today. If I don't my eyes bother me all day and my headaches are worse Thanks guys, it feels very hard to remember I'm not alone. At time it's very hard to see the positives and fullness of what's available if I rest in the Lord. I've been down latily. I've had a cold and that threw my pots everywhere. I feel like the little progress I had made and am now fighting to get it back. Ha. The delusional unicorn. I didn't come up with that. I saw a sign that said "my friend said I was delusional" I added dr, it seemed fitting. I giggle over a lot of things but I'm not clever in quiet in real life so people don't see a lot of personality, it's hard because my brother is very boisterous and people think he's very fun. I've always felt in his shadow. Holidays tend to bring the feeling of living in his shadow out. Add to the fact that he just got married and some of the weirdest moments have made me emotional because I feel so passed over in everything like when will I ever get a chance? I'm like Tula in my big fat Greek wedding who sits on the couch at night watching tv with her parents....and hating it. I am hoping that after the holidays (and possibly flu season) I can find a church group or something with ppl my age. Even my parents have had a hard time finding a church they feel comfortable at since we moved. I do like to write, that's one of my interest I try to keep up with. I've written a book and actually recently entered a contest. My feedback wasn't too bad. However writing is a tough career path. Like is said I keep with if even if it's only 100 words a day.

I'm sorry puppy love,mthats really hard. I've had a lot of pelvic pain and talked to my dr about pelvic congestion last summer. He said its pretty rare in those that haven't been pregnant and that pelvic congestion and interventional radiology isn't a traditional, proven method of medicine. For me, he said it'd be better to find a good obgyn and have a full work up (if you haven't yet) and he made me stand, motionless for 5-10 mins and then check my stomach to see if it was visible purple (like our hands and feet get) along with our lady parts. If there is a visible color change it does point to pelvic congestion. He didnt feel there was enough color change in my case. I went to an obgyn and she did tons of tests and stuff and felt I was more describing endometriosis than pelvic congestion. The only true way to know endo is through surgery. She hasn't wanted to jump into that with POTS. In endo before surgery they normally try birth control pills and stopping your period to see if it reduces pain. I started on bcp, generess fe and am starting to see some pain reduction it's not perfect yet at my last appointment she realistically I won't be pain free but the goal is to get to wear my periods aren't debilitating and don't hold me back which IS possible through trial and error. There s any different formulations and dosage of birth control to try. Have you looked into endometriosis? One of the things I've been noticing is lessening of the numbness and shock like pains I get in my pelvis and upper legs. The numbness is a sign of endo, do you have any of that?

Do you feel like pots has taken away or changed your personality? I've been sick and disabled by it since I was 12 and find myself thinking about what I really would be like without it. Sometimes it's simple things like looking through and clothes or hairstyles wondering what it'd be like if I has the energy to do my hair or wear makeup. But it's always a trade off, if I want to go somewhere I have to same my energy. Then when I'm around people I probably seem aloof or withdrawn. I dont laugh as much as I naturally would because there's so much to process it leaves me not feeling well. My head swirls, heart pounds, and im nauseas. It's like theres all this going on around me but some sort of screen between me and it because I'm just trying to survive. It's been making me really sad. I've been this way since I was 12 and am 27. I haven't had much of a life. My parents thought they were helping by making things "easier" on me like keeping it quiet and dimly lit and calm. Which does help keep me steady but I have no interaction and when I get around it. Like the holidays with my brothers and his wife the lights, noise, and commotion are so much to handle that I never really talk. I keep wondering if theres a way to adjust to it so i can get more involved on things and not feel so left out but I don't know if it's something that can be overcome or if it has to be pushed through? I've been feeling really lonely and trapped lately. It's just me and my parents. I want my own life and to be a twentysomething with friends and interests and maybe even sometime find a man. But I don't know how to go about that. Just existing is hard. Do I have no choice but to push through? is it possible to find rest so i don't feel like I'm always about to collapse? maybe try church small groups or different things. I moved a year ago and so I really don't have anyone, makes the whole thing worse. Is scary to just show up someplace and get involved. Let alone being shy and add pots/eds on top of it. I feel really trapped like I'm in the movie Tangled and I dream of finding a way out. I don't know if I make sense, I know I want/need a change but am lost on how to go about it. I feel like pots has made me a different person than i could have been.

I hate going on social media and seeing people complain about having a cold or some other sickness and how hard it is for them. And the ones that are complaining how much its ruining their Christmas & they're missing out on this or that whether it be a get together or food that makes them nauseas.....yeah, we fight it all year round and multiple Christmas to any special event.

I get sick easily. And like others have become a totally germ-a-phobe. It's been a real battle for me hearing about the flu this year as well as the stomach virus going around. I feel this panic everytime I hear about it and then I start praying that no one in my family will get sick this year. We all got the flu shot but I know it'snot fool proof. Hearing that it's supposed to be a worse season I really contemplate whether I should stay in more. I don't go out a lot but do I need to be evn more careful, like only for must have reasons?

I'm trying right now. I'm on my second pack of generess fe. My first period on it was a little easier. Coming up to my second I'm feeling somewhat pms-y but still not as bad without them