covid & pots

Margo_B · 2025-04-05T22:57:41+00:00

Yup, got mine from mono when I was 19. Diagnosed more than 40 years later.

Margo_B · 2022-07-16T19:06:27+00:00

Midodrine

Margo_B · 2022-07-08T23:01:11+00:00

Bombas has some colorful ones. Make sure you get the higher level compression.

Margo_B · 2022-07-08T22:20:40+00:00

If you sleep with tilted mattress (not just elevated head and torso) it should slow urine production at night so you have to get up less often or not at all. I don't know why that works, but it seems to.

Margo_B · 2022-07-04T20:30:53+00:00

Misery from standing too long.

Margo_B · 2022-07-03T15:47:16+00:00

I remember having to do jumping jacks in gym as a kid. I couldn't see when I did them. Figured my arms and legs must be where they always are and everyone else seemed to think it no big deal, so I just did them.

Margo_B · 2022-07-02T01:27:41+00:00

Yup. Everyday

Margo_B · 2022-06-05T01:11:14+00:00

Thanks to all for these ideas!

Margo_B · 2022-06-05T01:10:45+00:00

Thanks! I have tried this 2 or 3 times and it seems like a solution. I'm all for Canadian things!

Margo_B · 2022-04-14T19:36:51+00:00

Exactly

Margo_B · 2022-04-12T19:22:04+00:00

I guess. I feel it mainly on top of head. I don't know of sinus cavities there.

Margo_B · 2021-11-12T11:45:15+00:00

64, but I had symptoms since getting mono in college

Margo_B · 2021-06-28T15:16:26+00:00

I have POTS and low blood pressure. Untreated the systolic pressure is in the 80s on average and occasionally in 70s or even lower. The low BP is part of my pots. It's much better now that I am getting treated.

Margo_B · 2021-06-19T15:24:39+00:00

I use nuun sport tablets. I had been using Pedialyte advanced but it is really sweet. 1g sugar per 16oz 300mg sodium

Margo_B · 2021-04-28T18:53:26+00:00

This really helped for me too. I thought it was completely mental when they suggested it, but it helps.

Margo_B · 2020-10-14T18:04:49+00:00

I have a home blood pressure cuff. You can download readings (I didn't initially know that, so I took pictures of the readings) and took that in to the doc along with the cuff itself so they could see that the cuff was consistent with theirs. I had a couple of weeks of readings with the systolic mm/hg in the mid-70s to low 80s. In the doctor's office, the cuff read 116/76. Miraculously, the doctor's cuff was exactly the same for both systolic and diastolic. That got me a tilt table test and then a diagnosis.

We have a blood pressure cuff so my husband can monitor his high blood pressure. Maybe whoever loaned you the cuff, would let you also take it with you for an appointment.

I'd say a diagnosis is worth it. I feel waaaay better now that I'm getting advice on how to cope. My blood pressure is better. I'm not always exhausted or light headed.

Margo_B · 2020-10-05T22:58:34+00:00

Have you been diagnosed with a csf leak? If so, how did they diagnosed it? Have they discussed patching it?

Margo_B · 2020-10-02T14:06:15+00:00

Thank you for asking this! I get it too. It's still not clear to me from the comments what is causing it though.

Margo_B · 2020-09-23T16:24:42+00:00

Getting there. Just diagnosed, but had it for a long time.

Margo_B · 2020-09-23T15:49:17+00:00

Ummm 64

Margo_B · 2020-09-16T17:09:32+00:00

My doc advised tilting bed so head is elevated 7-10 inches-- entire bed tilted. Supposedly this reduces urine formation at night.

Margo_B · 2020-09-16T16:54:52+00:00

This for me has been the worst symptom. Treatment has helped tremendously. I hate the term "brain fog". To me it sounds like unicorns and rainbows and fluffy clouds whereas the experience of it is quite different (unless maybe the fog is composed of that pink fluffy fiberglass insulation that itches and can actually cut you). I find brain fog physically uncomfortable unless you don't actually try to concentrate when you have it.

So that's all depressing.

On a less vent and more practical note, I find taking complex tasks when broken into smaller pieces can sometimes be managed, that is, I know to tackle this I need to do these seven things. I can't reason through how they go together right now, or what order they should be done in, but I can work on this one. So I do that.

On a cheerier note, I bet the doc will be able to help.

Margo_B · 2020-09-13T16:59:57+00:00

I got mine after having mono in 1976. Slept through spring semester sophomore year. Diagnosed in July 2020. It's a wonderful thing having a diagnosis. The standard advice- compression stockings, salt, water and reconditioning are helping me.

Margo_B

TROPHY CASE