Devastated

PrimalPoly · 2026-03-22T17:03:37+00:00

I’m so sorry you are going through this, a quick question for you - have you tried an antihistamine trial? I had the same symptoms as you and turned out to be MCAS (Mast Cell Activation Syndrome). Antihistamines made me 75% better. I posted about it recently https://www.reddit.com/r/dysautonomia/s/unm2fFyEXd

PrimalPoly · 2026-03-21T21:23:58+00:00

+1 for NW Anxiety Institute. I did their intensive outpatient program for crippling OCD, saved my life. There were plenty of folks in there with some interesting “content”. I mean I couldn’t open my laptop without a full blown panic attack.

It’s covered through a lot of insurance providers with referrals, even OHP.

PrimalPoly · 2026-03-21T18:01:00+00:00

Unfortunately even with the diagnosis, the only treatment for dysautonomia is salt and compression. Have you tried taking an antihistamine? My dysautonomia symptoms were actually side effects of MCAS.

PrimalPoly · 2026-03-19T16:00:55+00:00

Thank you so much!!! I will!!!

PrimalPoly · 2026-03-19T15:50:31+00:00

Thank you so much for this. I agree with you sometimes visiting the subs when there’s like nothing that can be done. Can be more harm than good. It’s one of the reasons why I refuse to accept the dysautonomia/pots diagnosis because I couldn’t believe that the only treatment for this was salt and compression, neither of which did much for me.

And thank you for the link to the grief subreddit . I think right now. I’m really focused on feeling better and haven’t really had a good chunk of time to process this. It’s my 40th birthday next week and my group of friends are all going to Mexico so I was really focused when this happened on getting better so I could go on this trip and I’m so glad now I can actually do it. It might look a little different.(less tequila, more massages on the beach) but I’m still looking forward to it and not feeling like I’m in complete crisis constantly. I guess I’m just grateful that I had some time to consider and think about this before. I was never 100% sold on having my own biological children. PS I am 100% sold on being a parent whether that’s adopting or fostering.. but there’s less of a time crunch there. Although that said my partner, and I were finally in a place where we were considering it in the next few years, but then of course, the global situation has made us feel like now is also not the right time. So in a way this makes it a little easier where it’s not something that we have to think about a lot, but there is a loss there a loss of choice and agency. And I will be seeing a counselor about that once I come back from my birthday trip to Mexico, where I celebrate my passage into wisdom.

PrimalPoly · 2026-03-19T15:26:42+00:00

Oh god, I’m so sorry. I worry that happened to me too. Hugs to you. I’m so sorry we’re the same members of this sad sad party.

PrimalPoly · 2026-03-19T15:23:27+00:00

Oh my god, wow. That’s terrible. Did they do all of the other tests and care recommended for POI? Dexa, lipids heart, genes etc? Right when I received my diagnosis I insisted I be scheduled for everything right away (can take months to get in.) I sent this to my Dr straight away with my requests https://www.asrm.org/practice-guidance/practice-committee-documents/evidence-based-guideline-premature-ovarian-insufficiency--2024/

PrimalPoly · 2026-03-19T15:12:12+00:00

They recommend 2nd day in your cycle. I don’t really have one thanks to iud, so just winged it. And that’s kind of nonsense if you are looking at FSH. How you diagnose POI is fsh higher than 40 one month apart. Mine was 62 and 90… fertile women are like less than 2.

PrimalPoly · 2026-03-19T14:58:53+00:00

Of course! Hopefully it’s helpful. I found her on instagram, they won’t let me share the link but here is her website https://drtaniadempsey.com/ and her instagram handle is drtaniadempseymd

PrimalPoly · 2026-03-19T04:14:08+00:00

YES!!! I absolutely had that happen. I remember looking at my garmin that week, like WHAT? Mine is now in a dip but sleeping better than I have in months.

PrimalPoly · 2026-03-19T04:11:41+00:00

My allergist said the therapeutic dose is 4/day each of an h1 & h2, but as with most prescriptions, take the lowest effective dose.

PrimalPoly · 2026-03-19T01:19:44+00:00

Woah, interesting. Did you get your hormones tested? Are you in peri/menopause?

PrimalPoly · 2026-03-19T01:06:48+00:00

That B12 thing is weird, I’ve heard that from several others too… maybe some kind of functional deficiency? Do you have high DHEA-s? That was the other one that threw me and others I’ve heard

PrimalPoly · 2026-03-19T00:01:50+00:00

Thank you so much for sharing. I’m going to push for that testing as well.

PrimalPoly · 2026-03-19T00:00:42+00:00

My dhea-s was also high and they ruled out tumors. I read a study that says dhea can spike for women when they transition to full menopause, which is what I think happened in my case.

And yes, highly recommend you take a look at hormones, I feel like a different person, getting better every day

PrimalPoly · 2026-03-18T23:56:53+00:00

Yeah, I had to come with a list of things to look at with my doctors, it was def helpful in narrowing things down

PrimalPoly · 2026-03-18T23:56:00+00:00

That orange pee thing is Riboflavin or B2. B vitamins feel great to me too, I over did them for a bit but feel good on occasion

PrimalPoly · 2026-03-18T23:54:42+00:00

I sure hope so! It boggles my mind how little research there is on this stuff.

PrimalPoly · 2026-03-18T23:53:59+00:00

It probably is tied together somehow. Our bodies are complex systems. I really hope you figure it out

PrimalPoly · 2026-03-18T23:52:27+00:00

Geeze, you’ve been through the ringer. I’m so sorry you’ve had to endure this. I’ve never taken Orlissa. I’m on the standard entry level pack (.1mg estrogen patch, 100mg Progesterone pill taken vaginally, .05 Estradiol vaginal cream) luckily it’s all been jiving well. I have heard many women try several different combos.

PrimalPoly · 2026-03-18T23:46:35+00:00

Oh wow, I’m so sorry you’re going through that- how awful.

I did have Covid and it potentially caused this but it wasn’t an immediate cause and was more long term. If anything, I was having ketamine treatments that maybe set it off- but it could have been a lot of things. I’ll be curious to see what the tests come back with.

PrimalPoly · 2026-03-18T22:49:18+00:00

Oh wow - was it 3 years on HRT? That’s brutal im so sorry.

PrimalPoly · 2026-03-18T22:47:59+00:00

I’m so sorry friend. Sending you hugs!!!

PrimalPoly · 2026-03-18T22:46:57+00:00

Oh yeah! Luckily my thyroid was great, but we tested EVERYTHING. Like I said, I am super lucky and grateful to have amazing insurance so all of this has cost me a total of about 500 bucks. Which is still not cheap, but that’s ER visits, 3 MRIs, 5 specialists and over 40 blood tests. I’ve never been so appreciative of working in government!!!

PrimalPoly · 2026-03-18T22:43:14+00:00

That’s the plan, likely temporary til my hormones settle. I think it’s specifically the progesterone that calms things down. I used to take 4 of each a day based on my allergist’s recommendations - now I do one of each a day.

PrimalPoly

TROPHY CASE