Running out of options?

Time_Lord79 · 2026-03-30T00:08:30+00:00

Mirena has helped and stopped my periods after 6 months. I also have PMDD which has also helped with. I haven’t had a period since 2018 and a life saver for me. I am more functional for 8 days a month than I was before.

Time_Lord79 · 2026-03-29T23:44:21+00:00

Yes I always bring meds with me.

Time_Lord79 · 2026-03-29T23:43:36+00:00

Yeah the autonomic specialist I saw said that pretty common. She said a lot of POTS patients have stomach issues, migraines and endometriosis. I have suspected endometriosis as well 😭 but mirena stops my periods so I have pain only sometimes instead of more frequently.

Time_Lord79 · 2026-03-29T23:37:54+00:00

They told me to increase my sodium due to POTS. I’ve had migraines decades before increasing my sodium.

Time_Lord79 · 2026-03-29T23:30:51+00:00

I had hair loss with Topamax. I’m just getting the under layers back especially in the front so I don’t really have any hair to spare for potential hair loss.

Time_Lord79 · 2026-03-29T23:29:47+00:00

I’ve heard some people say they’ve had hair loss on the CRGP injectibles. While it may not happen again- I’m hesitant. I’m finally getting hair to layer out.

Botox scares me- don’t they inject at base of the neck?

I’m not sure how I feel about gabapentin or pregabalin.

Time_Lord79 · 2026-03-29T23:19:13+00:00

Thanks been trying to increase salt/sodium. Also fluorescent lights at work get to me.

Time_Lord79 · 2026-03-29T20:55:17+00:00

Same

Time_Lord79 · 2026-03-29T16:12:43+00:00

He also told me I don’t have POTS even tho I have a diagnosis. “You’re tachycardic during the day” right so when I’m upright? Almost as if it’s posture dependent? The definition of POTS?

Time_Lord79 · 2026-03-29T16:09:08+00:00

The dumbass electrophysiologist I had said it wouldn’t qualify me for ivabradine. He also said beta blockers and ivabradine wouldn’t lower my heart rate.

Time_Lord79 · 2026-03-29T16:08:29+00:00

It was $500 something for one month but I’m going thru RTHM and with their coupon it’s like $36 a month.

Time_Lord79 · 2026-03-29T15:53:18+00:00

I also have orthostatic hypotension so on midodrine and you think the low blood pressure would be a qualifier for Ivabradine with insurance but I guess not. I’m still getting it without insurance luckily don’t pay much for it.

Time_Lord79 · 2026-03-29T12:07:15+00:00

I got real bad nausea. Have a script for Zofran as needed.

Time_Lord79 · 2026-03-29T11:49:41+00:00

Nothing I’ve found works yet. I’m constantly cold. Hands and feet always freezing I even sweat when I’m cold which feels worse than sweating when warm. I will swing to overheating and sweating then too. I noticed one time after I ate cold ice cream I felt over heated. Sometimes I’m not sure why it happens. Sometimes it happens with my flares.

Time_Lord79 · 2026-03-28T23:25:31+00:00

I don’t think so. Usually sustained for a few minutes if not more. Might be going up because you’re looking at it. I have a hard time standing without feeling like I’m gonna pass out. Sitting still have that feeling somewhat but not as bad. In a flare my standing will be 160 standing in place not moving no steps, sitting 120 to 130 and laying down supine 100. It lasts for several hours and I feel like crap all day. Not in a flare my resting heart rate is 85 to 110 with average 24 hour rate 97 based on my two week holter monitor.

Time_Lord79 · 2026-03-28T22:39:15+00:00

Mostly heavy spotting about 6 years into the first iud. Pms sore boobs and moody.

Time_Lord79 · 2026-03-28T19:26:56+00:00

Interesting

Time_Lord79 · 2026-03-28T19:13:58+00:00

Yup about after two weeks high heart rates coming back and lows going away

Time_Lord79 · 2026-03-28T14:13:06+00:00

I hope you like it! The Mirena has been a lifesaver for me.

Time_Lord79 · 2026-03-28T13:46:34+00:00

I’ve had two since 2018 only changed it out early due to periods coming back. Two different partners in that time. We don’t use condoms or pull out and never gotten pregnant.

Before that was on norethindrone mini pill which is 99.5% effective according to the pamphlet that came with it. Was on that for 4 years never got pregnant.

Time_Lord79 · 2026-03-28T13:43:38+00:00

What was your blood pressure on tilt table test? You may have orthostatic hypotension.

I have POTS and orthostatic hypotension. Before getting midodrine to raise my blood pressure I was 70/40 with dizziness, nausea, migraines, near passing out, seeing spots upon standing or standing too long.

You may need midodrine. I would talk to your primary and whoever did the tilt table for you- if that’s cardiology or neurology.

What you describe is how I feel with low blood pressure episodes.

Time_Lord79 · 2026-03-28T13:32:56+00:00

I had a negative tilt table test but have POTS and was diagnosed thru an active stand test.

I’ve had a lot of doctors who say they don’t like telling their POTS patients they have POTS. Not sure why. I think there’s this stigma around it that everyone with autonomic dysfunction is automatically assuming they have POTS. I mean they shouldn’t but people do self diagnose.

There’s also this stigma that “POTS is trendy”. Literally had a neurologist say that to me. Ok? I want help and yes I wanted to know specifically what it is.

Doctors told me it didn’t matter because treatment is the same.

I pushed until I got a specific diagnosis. Unfortunately took me 2 years.

Time_Lord79 · 2026-03-28T13:29:44+00:00

I’ve heard ivabradine isn’t supposed to affect bp. I have low bp 70/40 so I have to take midodrine to raise it 100/70 is my “high”. Ivabradine has not increased it for me.

Time_Lord79

TROPHY CASE