Mytwogirlsrox

Dakota, is it possible your daughter has EDs? I just read what another poster said about PE being common with EDS

Dr Google lol

Yes on occasion..

Fast HR, flush-like sensation, heavy arms or legs, shakey hands, sweaty, shortness of breath, doesn't resolve with laying down

Kinda like derealization

How's your blood pressure?

3 times

Jknh9--- you and I share similar thought. I too believe in the power of excercise. Maybe not a cure, but symptom. A agreement. I also can't do yoga, but I'm pretty unrestricted exercise wise. My HR also stays elevated long after I've ceased exercising, my POTS is exaggerated afterwards too. I believe the pain will be worth the gain:)

I oscillate sometimes mornings are good, nights are bad, and vice versa. I definitely pool more in the evening, but HR tends to be slower

Nope, I can only assume pregnancy, surgery or virus caused mine?!?!?

Have you had an MRI?

Maybe just mention to your Dr you having episodes where your legs collapse?? Omit the pool part? See if that piques their interest?

Subjects with OH had lower serum 25(OH)D compared to controls (mean difference = 20.6 nmol/l, P = 0.0002). Lower vitamin D status was associated with an increased risk of OH

vitamin D may play a role in the aetiology of OH.

I thought it said a vitamin defiency could be the cause of OH

Why is POTS so different for us all?

I don't feel the typical fatigue, brain fog etc.. I just don't get it!

I could be totally wrong, but I look at POTS as a compensatory response, low blood flow somewhere signals tachycardia which maintains BP and perfusion? Why then would cerebral perfusion be affected after the compensatory reaction, unless you have OH? Or vasoconstriction in the wrong spots (ie raynauds) maybe on paper or texts it's doesn't make a whole lot of sense to Drs?

I haven't read up on cerebral hypo perfusion so I could be totally waaaay off

It's interesting since most have a diurnal variation in symptoms.

http://www.ncbi.nlm.nih.gov/pubmed/22790517

Vestibular-evoked myogenic potential tests in orthostatic dizziness.

Interesting ... Kinda different scenario, but orthostatic dizziness = changes in the ear for some

http://www.ncbi.nlm.nih.gov/pubmed/22791300

So how do I get this??

ALA also helps with neuropathy

http://www.ncbi.nlm.nih.gov/pubmed/8958163

I read in one study 500mg was a the optimal dose to help with diabetic neuropathy. Although in not diabetic, if I do have neuropathy causing my pots I hope ALA helps me.

I use to have this sensation a lot before I started working out. I describe it as part of my Pre-syncopal feeling.. Like right before you pass out your hearing fades out.. I would get it bad after I worked out, then drove home, I would get out of the car and stand up.. It would be really bad.. Almost to the point of hearing loss for a few seconds. Now I don't get this sensation

Bahahahah!!!! That is hilarious!! Sorry you passed out, but that's so funny thanks for sharing!

She just ran 1/2 marathon? Like right before this happened? There is a lot of information regarding hypotension in runners after marathon running. Maybe she is really dehydrated? Too much running? I hope it's transient... I really hope that this is not genetic, I don't want my babies to have POtS however my dad has self diagnosed himself with CFS so who knows!?!?

Hello all, I'm feeling cheery and wanted to share a few of my silly pots stories

First, POTS ain't all that bad SINCE last week I decided to do this funny leg press machine at the gym.. Stood up too fast HR went bananas, got a little lightheaded.. Kneeled down .. And to my utter surprise and sheer embarrassment a hottie mcHotsie trainer from the gym came to my rescue---yikes!!! Wish I was single!! This woulda been the perfect opportunity to meet a strong, oh so yummy! Trainer instead I almost died of embarrassment!! For some reason, I keep bumping into this guy over and over again since this happened hahahaha

And, I've given my 3 year a complex! I shouldn't laugh, as I'm sure this will bite me in the bum one day. But she has a gnarly cold this week and she keeps asking me to check her heart, it's going "boom boom boom when I run" best part is that she grabs her rib cage, near her lower flank. Ahhhhhhh!!!!! I'm creating a little hypochondriac lol. (no worries she doesn't have any tachycardia ---- I checked! She just copies me right now, she always wants to wear my pulse ox and drink salt lol)

Anyway, just a few things about POTS that made me giggle this week!

Anyone else have some funnies to share??

Thanks everyone for the support. My "episode" passed after about an hour. I still feel a little bit on edge this morning, almost like really excitable like I drank a redbull (I didn't lol)

I'm trying to think of triggers, since yesterday was so much more intense than any of my symptoms thus far. The only thing I can think of is that my 3 year old had a 103 fever all weekend that I was probably stressing about. I've acquired some health anxiety through all this. This syndrome makes me feel like a nut case !! It's emotional, but truly physical ...

I'm so lucky, my dad runs the emergency room out here. So I know that if I went to the ER yesterday I would have been given the royal treatment. BUT I talked my dad into leaving work to come be my home health nurse and he just sighed and told me that I have been worked up for everything under the sun, that I'm not having any arrhythmias, my BP is good, and that as uncomfortable as this feeling is, I might just have to learn to live through it. I know it *****, but I can do it.. I just wish I could understand it.

Does anyone else have te pre-syncopal feelings, anxiety, shakey etc with normal vitals? It was like a flushing, panic attack feeling ? But I keep having them even laying down wih a normal pulse and BP. It makes no sense!!! Obviously it's chemical b/c 30 or so minutes after a Xanax my body slowed down.

You know what's frustrating and weird is that I've had such a normal life.. I'm sure everyone goes through this, but what the heck just changed one day? It's sooo bizarre. I'm sick of it!

Anyway, thanks for letting me vent and again thanks for all the support