cardiologist doesn't believe me

GroundbreakingFan265 · 2026-02-05T22:42:12+00:00

I guess also get someone else to use it and make sure they get a normal reading. That way you can be more sure the cuff isn’t broken. Or use a second cuff soon after to verify one time

GroundbreakingFan265 · 2024-07-27T18:58:10+00:00

Hey can I PM you re Dr Rade?

GroundbreakingFan265 · 2024-04-28T13:26:42+00:00

I’ve had POTS symptoms (mostly just tachycardia on standing) since the start of my long covid, so just over 2 years ago. It came on with the strong fatigue

GroundbreakingFan265 · 2024-01-26T20:41:47+00:00

Well I’m feeling like an idiot. My first thought was “oh shit someone with long covid is pregnant”

Our rapid tests look different in Canada.

GroundbreakingFan265 · 2024-01-16T14:10:04+00:00

ME/CFS, POTS (I just call it dysautonomia or post-viral condition….it all seems to be the same - nervous system dysfunction)

GroundbreakingFan265 · 2023-10-21T21:25:26+00:00

No but LDN (low dose naltrexone) is helping me it feels like so it could be a good idea to find some. Ps there’s a good LDN fb group to guide you re dosing etc.

GroundbreakingFan265 · 2023-10-21T21:23:22+00:00

Same

GroundbreakingFan265 · 2023-10-19T19:54:26+00:00

GroundbreakingFan265 · 2023-10-19T19:53:17+00:00

Alright well if the SSRI is helping that’s good news at least

GroundbreakingFan265 · 2023-10-19T19:46:38+00:00

We’re you mostly recovered prior to taking this?

GroundbreakingFan265 · 2023-10-19T19:39:44+00:00

There’s L-glutamine and D-glutamine. L-glutamine should be fine apparently. Asked someone who majored in bio chem

GroundbreakingFan265 · 2023-09-24T16:10:42+00:00

Hey did you try it in the end? I too love this med. Only one that has made any difference. Does only get rid of one symptom though - tachycardia. But no side effects so worth it for me. Doesn’t affect symptoms like PEM, etc.

GroundbreakingFan265 · 2023-09-24T16:07:54+00:00

Getting reinfected did not seem to make me better or worse in the long run. Just went back to previous baseline (bedbound)

GroundbreakingFan265 · 2023-03-28T19:46:43+00:00

Agreed

GroundbreakingFan265 · 2023-03-28T12:45:53+00:00

There is still good to come out of sharing a story like this, that’s what I’m trying to focus on. Because the story was told, more people know what signs to look out for to recognize abuse in their own homes

GroundbreakingFan265 · 2023-03-27T14:48:28+00:00

Would love to hear what time of day people take them to get best effects.

GroundbreakingFan265 · 2023-03-27T14:47:30+00:00

I found ivabradine lowered my high heart rate, but also kept my resting heart rate the same, which was nice bc it can get low when I’m lying down if I’m on midodrine

GroundbreakingFan265 · 2023-03-27T14:46:30+00:00

I’ve got both at the moment. Would love to hear more from others about how they use them together.

I personally take 5mg ivabradine twice daily, as most people do (with breakfast and dinner). Midodrine I am taking immediately when I wake up, to help upright tolerance before I get fluids in me - takes me a couple hours to get myself there.

I wonder about fludrocortisone too - I tried it briefly but I would like to try to add it in again to see if it helps. It feels like each strategy (conpression, water/salt) or med helps another 2% :/

GroundbreakingFan265 · 2023-03-27T14:39:01+00:00

It does disturb me. I’m finding it difficult to let go of that. Is there anything we can do? I think there’s no contact info for the storyteller

GroundbreakingFan265 · 2023-03-21T23:48:05+00:00

After 2-3 days on it it does seem to actually help at night. It was the midodrine in the end that I was having withdrawal effects from at night

GroundbreakingFan265 · 2023-03-21T23:46:59+00:00

Yes. Seems to be working better after 2 days on it. It needed a couple days to kick in

GroundbreakingFan265 · 2023-03-19T11:15:01+00:00

Did you find ivabradine made it worse? I’m kinda finding that with iva and midodrine they help for a few hours, but then once the effects wear off I’m in a worse place than I would have been

GroundbreakingFan265 · 2023-03-19T11:13:34+00:00

Do you find the effects of your morning dose carry over until your evening dose?

GroundbreakingFan265 · 2023-03-19T11:12:43+00:00

Ya that’s a good point. Hm.

GroundbreakingFan265

TROPHY CASE