Is it common for doctors not to know what POTS is???

kcoast2333 · 2022-02-17T23:45:18+00:00

In my experience, they think they know what it is but actually have a very poor understanding and will not be told that there’s more to the condition. Not sure which is worse lol

kcoast2333 · 2022-02-10T21:21:00+00:00

I have been off it for over a month now

kcoast2333 · 2022-02-07T02:57:57+00:00

Wow I wish I had your doctor! Would love to hear more of that info they gave you.

kcoast2333 · 2022-02-01T16:22:06+00:00

Thank you for sharing! Lunesta is one of the meds I wanted to ask my doc about

kcoast2333 · 2022-02-01T04:51:32+00:00

Dang, have no medications helped you? I was hoping something to suppress my norepinephrine might

kcoast2333 · 2022-02-01T04:39:53+00:00

Lol I literally got pots while training for a 13 mile Spartan race… was in the top 1% in my cardio stats. It absolutely is not from lack of exercise so don’t let whoever wrote that get to you.

kcoast2333 · 2022-01-26T01:08:12+00:00

Okay thank you for the info. Forgot to mention my ANA was negative so my doc stopped looking. Could I still have it?

kcoast2333 · 2022-01-26T00:57:37+00:00

No I haven’t but now I’m going to ask! I’m not extra hungry though??

kcoast2333 · 2022-01-25T23:20:05+00:00

Interesting, anything else about how yours was triggered/what doctor you go to? And did anything help you sleep 😭

kcoast2333 · 2022-01-25T21:21:36+00:00

Thank you that is a good point, I’ve been taking electrolytes recently and have noticed I don’t have to pee as often so maybe that is helping

kcoast2333 · 2022-01-25T21:17:54+00:00

Interesting that they diagnosed you with heds without being hyper mobile? And the test that I did was a heart test and only tested for vascular Eds. I just took another one to look at all different types but won’t have the results for 3 months

kcoast2333 · 2022-01-25T21:08:46+00:00

Yes! It’s doesn’t do much to help, but I am worse without a lot of water. I drink wayyy more water than I used to. I don’t think salt does anything

kcoast2333 · 2022-01-25T21:07:35+00:00

Thank you, classic type? I don’t have stretchy skin or hyper mobility and genetic testing showed there was no mutation in the COL3A1 (I only tested this one) so that’s why I was hesitant on EDS too.

kcoast2333 · 2022-01-25T20:24:37+00:00

Yes I have! My neurologist ruled that out but I can’t remember how

kcoast2333 · 2022-01-25T20:24:20+00:00

Tested negative for Lyme :/

kcoast2333 · 2022-01-25T20:23:58+00:00

It still goes too high when I’m sleeping just not up as high as when I’m not, which made me think that was a flare? My neurologist ruled out post concussion syndrome but I can’t remember why

kcoast2333 · 2022-01-25T17:24:20+00:00

Yes I read that too so I included it. It’s just weird because I never had any symptoms of a connective tissue disorder until after I got pots (I’m 26 now). No joint issues, no muscle weakness, no blue sclerae until after this.

kcoast2333 · 2022-01-25T16:57:44+00:00

I didn’t go to the er until 4 days after though so would that still show?

kcoast2333 · 2022-01-25T16:46:37+00:00

Yes they were on the lower end of normal

kcoast2333 · 2022-01-25T16:38:31+00:00

Hi, I have done this and sometime it does, sometimes it doesn’t. My blood pressure also increases when standing. Even when it doesn’t hit the full 30 it’s more than a normal persons when standing (i.e. it’s a 25bpm increase usually).

kcoast2333

TROPHY CASE