Mytwogirlsrox

I had the flu shot, I was fine

Could be low potassium. When I get dehydrated, I get muscle spasms.

Very interesting. Diabetes insipidus causes a large volume of urine. There are salt wasting disorders. Hopefully this is the key to helping solve your pots puzzle.

Yogini that's interesting, so I wonder about peeps with NCS and POTS. I was diagnosed with both

I thought the whole thing with MS and heat, is that their neurological problems get worse. Like they have true weakness, foot drop, etc.. Not necessarily that they are heat intolerant. I have always-- since I was a little kid been heat intolerant. I always feel nasty after a hot shower, and hot tubs are so yucky. But I don't get neuro issues -- I think the blacking out feeling after a hot bath is from vasodialating. The vision being blurry is interesting though. I thought for a long time that I truly had MS, that the Drs missed it. But there are a lot of differences between PoTS and MS too. I see what you are saying though, in your original post. We could very well be traveling down an unforeseen parallellism... But I have faith in modern medicine, there has been a lot of decent research which has yet to find an insidious disease wreaking havoc on us. I emotionally don't want to go that route, speculating--- it makes me so anxious

Genetics Achr auto antibodies Net deficiency Multiple sclerosis Fixing an aorta problem Pelvic vein congestion?!? Pregnancy Surgery Trauma Beta adernergic sensitivity parasites

Hi Sue, I was obsessed with having MS when I was first diagnosed with POTS. I have read and re-read, numerous times, the other studies about POTS and MS. I didn't read this whole one, honestly, i don't want to send myself into a health anxiety dither again. But I believe that people with MS, can also have lesions that cause autonomic dysfunction. I don't really think that this article is saying that MS is a causation of POTS, just that its a co-morbidity or symptom.. which makes sense. I think if there are lesions on the brain or spinal cord that controls the autonomic nerves, then there would be a dysfunction. So there is a higher frequency of POTS in MS people than in a normal non-MS population. Makes sense? right? I guess an analogy would be that there is a higher frequency of people with EDS and POTS, than in the non-EDS population.. right? It totally freaks me out to see POTS put up next to MS. But i have to remind myself that POTS is a collection of symptoms; therefore, there are other diseases that will share the same/ similar symptoms

Have you been investigated for myasthenia gravis? I read it causes issues with breathing. Might be worth investigating you for the achr antibodies? Not to freak you out

Hi, Im so sorry you're suffering! You are not alone! I too believe my pots was trauma and/ or pregnancy induced. I became symptomatic after I weaned my daughter. I'm sure your doctor advised you to drink a lot of fluids and salt load, especially if your nursing. I remember being so thirsty while breast feeding. hopefully with time your body will recover from the massive event you went through. It's hard enough on your body to have a baby (for normal people) throw in the complications and pots/eds.. It's rough! Just to reassure you, I had my daughter 12/10 and I was diagnosed 02/12 (quit nursing her 01/12), I was undiagnosed recently (I no longer fit the criteria of pots-- just mild orthostatic hypotension) I believe my body needed to heal from two hideous back to back pregnancies.. I have hypermoble joints, but I don't want to peruse it --to be honest, I'm too scared. Anyway, hang in there! Have you thought about trying the usual pots medications?

How do you get a break down of what your vitals are? My Dr went over my results with me (I was stupid and didn't get a copy) but my EP said pretty much I "have pots b/c x, y and z" honestly no one ever said dysautonomia. But anyways, I would try and get a real copy of your test and maybe take the results to a pots dr??!

For those educated on the Achr auto-antibodies, how is this different than / similar to myasthenia gravis?

Well I had it pre-pots diagnosis and I had 2 Caesarian sections in the past 4 years and I healed just fine (if you don't count pots lol)

Wouldn't it be indicative of venous pooling? Less fblood refilling the heart? Just wondering

Have you checked your BP during?

I think those values are really normal. I believe a 20+ drop in systolic BP is considered orthostatic hypotension

I've heard that dehydration can cause the vertigo while laying down

Could there be a correlation between the inactivity of OI and pulmonary emboli OR ans dysfunction people take birth control? Or atrial fib/ rhythm issues & PE?

My baby coded in the carseat, while I was driving. I had to perfor CPR ... Symptoms started shortly thereafter with a migraine.

I had inverted t-waves also. My Dr suggested that it was the lead placement was wrong on my small frame. I've never had one inverted t-waves since that EKG. Now I'm curious, would that show on a holter monitor? I've had numerous holters

Wow! That is awesome!! Good for you

Hey sounds like its a great combo for you, that's great news! I took Celexa for about 5 months and it took around 2 months to finally kick in, it definitely helped slow my SNS down and stabilize it. My HR went from 150s to 120 then gradually kept going down with diet, exercise etc. it also helped stabilize my BP I was always 90/60 or less with lots of pre-syncopal episodes. It kept it around 110/70. I thought, for me, the SSRI helped tremendously to get me back up and "running". I also gained 20lbs ha ha ha but I needed it. Florinef on the other hand, wasn't my friend. I had such bad anxiety with it, I had to stop. I w as started on .2 twice a day, and that is a lot so it seems... I feel like it cause me to have generalized anxiety disorder. But that resided with the SSRI. Anyways, for the insomnia have you tried any magnesium? It really helps me sleep and helps with the PvCs too. I take it right before bedtime and I'm OuT

Western--- I know exactly how you feel. Even though I have, by far, more good than bad days now.. Im still anxious about the future. One thing to keep in mind is that we can only worry about this right now, the future is so uncertain--- I'm really hoping that this is the start of a new phase of POTS for you. I know for me, I started to have a few good days, then a few more till now I'm 99% good days! It just took a lot of time to get to that point and accept that a good day didn't mean a bad week Good Luck & Take Care

Great job!

I think there is a correlation between the filling of the heart. Think of it like when you stand your heart isnt getting a good rerun of blood, then when you lay down it gets filled up ... Maybe causing a few odd sensations lie PVC or pacs?

I think you have to breathe into that thinner did you do that?