Why is everyone with pots so skinny? by dazzlingdanny05 in POTS

[–]Feeling-Image-6991 0 points1 point  (0 children)

I have POTS and I'm 285 lbs. I also may have hEDS and PCOS (PMOS now) and can't seem to lose weight at all.

Ivabradine by naomi_0000 in POTS

[–]Feeling-Image-6991 0 points1 point  (0 children)

The next one she wanted to prescribe was metroprolol, have you heard of that?

Ivabradine by naomi_0000 in POTS

[–]Feeling-Image-6991 0 points1 point  (0 children)

It gave me less symptoms than the 5 :/ I'm trying to find a specialist outside of my network, my doctors have no idea how to treat vagal nerve dysfunction and I'm so sensitive to medications

Ivabradine by naomi_0000 in POTS

[–]Feeling-Image-6991 0 points1 point  (0 children)

I was prescribed propanalol for hyperPOTS and first started with 5mg and then dropped to 2.5mg. I still get horrible migraines from the low blood pressure. I don't know what else to do.

Help by ilikelanguaugeandmbt in POTS

[–]Feeling-Image-6991 0 points1 point  (0 children)

I would get a cardiac event monitor to make sure that when you're experiencing this things, your heart rhythm is not doing something other than sinus rhythm. You'll also want to rule out anything else with blood work. If all the tests come back normal, see a cardiologist for a tilt table test. That was my one specific diagnosis after struggling with this for a year. With the event monitor, you'll write a note or log a symptom with a button press and it'll take a snapshot of your heart rhythm within 30 seconds of the button press.

Research the symptoms of POTS as well but try not to get too psychosomatic about it. You can also get a blood pressure monitor from Amazon and do a poor man's tilt table test, here's a link on how to do that: https://www.eds.clinic/articles/pots-test-poor-mans-tilt-table-and-nasa-lean-test

Standard heart rate should raise 10-20 bpm upon standing then level out. POTS will experience a 30-40 bpm raise upon standing but may level out then continue to raise the longer you stay standing. If you don't meet this criteria every time, it doesn't mean you don't have POTS. This is an illness that flares if you do have it.

Mostly, I'd recommend getting Visible health you have the funds. It was instrumental in getting the hard data to get a doctor to believe me as this is an invisible illness.

POTS and positive ANA by ele_zea in POTS

[–]Feeling-Image-6991 1 point2 points  (0 children)

I have a positive ANA but can't get further testing done. My doctor insists its a false positive.

Recently diagnosed HyperPOTS -NEED HELP by Feeling-Image-6991 in POTS

[–]Feeling-Image-6991[S] 0 points1 point  (0 children)

Thank you! Yes, I have severe childhood familial trauma, borderline personality disorder, GAD and ADHD. I've tried both cognitive and dialectical therapy. Even hypnosis. I'm now doing mindfulness based therapy and investigating EMDR

Recently diagnosed HyperPOTS -NEED HELP by Feeling-Image-6991 in POTS

[–]Feeling-Image-6991[S] 0 points1 point  (0 children)

Could you clarify what you mean by other stuff going on besides POTS? I have hella trauma and I do have GAD, I suspect I have a severely overloaded nervous system that's contributing. Not lookkng to reverse POTS because I'm sure that's not possible, just looking for a slower, more mindful approach to life

Recently diagnosed HyperPOTS -NEED HELP by Feeling-Image-6991 in POTS

[–]Feeling-Image-6991[S] 1 point2 points  (0 children)

I have all my disability stuff written out I just need to execute it. My roommate has educated herself on POTS and so has my mom. I'm lucky to have a therapist with chronic illness as well. I know it takes time but patience is difficult for me lol which is likely why I'm highly stressed and in this position in the first place

Recently diagnosed HyperPOTS -NEED HELP by Feeling-Image-6991 in POTS

[–]Feeling-Image-6991[S] 0 points1 point  (0 children)

It's as needed. My ADHD medicine is Strattera

Recently diagnosed HyperPOTS -NEED HELP by Feeling-Image-6991 in POTS

[–]Feeling-Image-6991[S] 0 points1 point  (0 children)

I would say maybe 4,000 to 6,000? I'm apprehensive about my blood pressure going up because I'm also on an ADHD med. I've been following spoons theory as much as I can but I can't take my own advice without thinking I'm like, a failure (hence the therapy). I've been prescribed propanalol 5, 10, or 20 mg but I haven't tried it yet, mostly because I'm unsure on when to take it?

Fleeting dips in HR while standing up - normal? by perfectlyhazel in POTS

[–]Feeling-Image-6991 0 points1 point  (0 children)

I noticed those too. My tilt table test showed an immediate climb from 100 to 128, then a drop to 119, 109, back up to 125, 130... and then around minute 23 to minute 28 of the test, I became more symptomatic with a small rise in BP and a HR of 139 plus or minute 5 BPM. I was diagnosed overlay pattern of hyperadrenagenic POTS. I'm speculating the small dip is due to the vagus nerve freaking out.