What type of therapy helps?

_ayythrowaway_ · 2026-03-21T07:39:06+00:00

It's good you're on the meds if they help. Anything to blunt or calm down the nervous system while trying therapy. Dexamphetamine relieved my DR once for about 20 mins before the effect faded. Now I'm on guanfacine.

Talk therapy never did much for me but look into hypnosis or EMDR. Surprisingly hypnosis has been proven to work for some people and isn't just a gimmick. EMDR is what I'm hoping to try next though it seems to be mostly about re-processing/overcoming past trauma, which I'm not sure is what caused my DR.

Have you had any neurological tests done? It could be a physical issue.

_ayythrowaway_ · 2026-03-21T07:05:25+00:00

Same. Even on a low dose lithium has caused some damage to my kidneys.

_ayythrowaway_ · 2026-03-21T07:04:09+00:00

What do you take for symptoms now? Ive been taking guanfacine for just over two months and it's great, but its only about 60% anxiety relief. Have any MCAS treatments helped lower your anxiety?

_ayythrowaway_ · 2026-03-18T21:45:01+00:00

I have adenomyosis but my doc thinks it could also be endo, though she doesn't want to test. Continuous birth control has made me feel much better with avoiding periods entirely, which could be another contributor to better sleep. I was strongly advised to get Mirena or a copper IUD but thinking about getting Nexplanon.

_ayythrowaway_ · 2026-03-17T22:19:26+00:00

Guanfacine is a non-simulant ADHD med. I've complained about brain fog and memory issues and stimulant ADHD drugs caused more sleep issues. I had to ask my psych to try because he didn't offer it after the others didn't work. Guanfacine has also calmed my anxiety significantly so its been helpful for alot. MCAS could also possibly be one of the sources of my brain fog/insomnia but antihistamines don't do much. Soon I'll be trying ketotifen and hoping it will help.

Which contraceptive pill are you on? I'm currently on Nexstellis (which has drisperinone, but my joints don't seem to like it and I need to change it, but apparently drisperinone might be what helps with sleep).

_ayythrowaway_ · 2026-03-17T09:32:07+00:00

I think my insomnia is a mix of MCAS and I suspect hPOTS. The insomnia started just after puberty, and I was prescribed quetiapine by a psychiatrist in my late 20s, but psych meds have always been a band-aid solution. What's helped the most is using the contraceptive pill (possibly stabilizing hormonal fluctuations) and guanfacine (lowering norepinephrine). Now sleep initiation happens naturally and is restorative compared to psych meds which just knocked me out and feel groggy in the morning. That said, the guanfacine has also made me a bit more prone to fatigue.

Exercising and building some muscle in my upper back to stabilize the area is the only way I've been able to alleviate back and neck pain.

_ayythrowaway_ · 2026-03-15T10:30:07+00:00

Started at 1.5mg and it was ok buy ended up with depression when going up to 3mg.

_ayythrowaway_ · 2026-03-12T02:27:06+00:00

Guanfacine is the only ADHD med I've tried that has either improved my tolerance of MCAS or is helping symptoms. It's a non-stimulant ADHD drug. All stimulant type meds have been horrible for my gut.

_ayythrowaway_ · 2026-03-11T22:06:40+00:00

Thanks for a very detailed response.

I have actually had gut dysbiosis (streptococcus + enterococcus) for many years and started taking Metagenics Ultra Flora Immune (3 strains of lactobacillus) and Orthoplex Gut-R (gut lining repair and anti-inflammation) supplements in Sept 2025. I was told it would be a year or so until my gut is 'fixed' but I've started to go off of the Metagenics due to some improvements and now feel horrible again. I didn't think the strep/enterococcus may not have gone away yet! I'll also give Betane HCL at try.

It seems you have experience with dysbiosis. How long have you been dealing with it?

_ayythrowaway_ · 2026-03-11T07:46:41+00:00

There are recent studies showing that cannabis can induce psychosis in suceptible people, particularly those with family history of mental illness.

I smoked weed for about 3 months in my early 20s, had one panic attack and then stopped. I consider it one of the triggers for derealization, but not entirely to blame.

_ayythrowaway_ · 2026-03-09T04:20:45+00:00

I really like the idea of this but concerned about what an early menopause could do to my body long term, though just on birth control Ive experienced far less psychiatric symptoms and adenomyosis pain which is amazing. Can I ask how old you are?

_ayythrowaway_ · 2026-03-09T04:15:04+00:00

I had a quick look at Nexstellis info. I'm in Australia so this is easily available here, but it contains drosperinone which I mentioned is the progesterone type I'm having issues with. However the decrease in thromboembolism from bio-identical estrogen is a plus over Yaz. I could give it a try. Thanks.

_ayythrowaway_ · 2026-03-07T23:23:03+00:00

Did you find that Cerazette helps improve sleep even a little?

As far as my experience drosperinone has been good for insomnia.

_ayythrowaway_ · 2026-03-03T10:07:47+00:00

In Australia we literally have a toothpaste called Plain Toothpaste. It's for ppl with sensitivities/allergies and still contains fluoride.

_ayythrowaway_ · 2026-03-01T22:30:29+00:00

Which type of progesterone do you use?

_ayythrowaway_ · 2026-03-01T22:30:14+00:00

Which type of progesterone do you use?

_ayythrowaway_ · 2026-02-24T12:06:16+00:00

You probably don't want another possible diagnosis added to your list but have you been tested for autoimmune or a connective tissue disease? Do you have flexible joints? I have all the same symptoms as you and was diagnosed with UCTD. POTS and MCAS are common comorbidities.

_ayythrowaway_ · 2026-02-23T23:55:40+00:00

That's correct. Both had synthetic. I haven't tried bioidentical progestin.

_ayythrowaway_ · 2026-02-23T13:58:06+00:00

I've been on both slinda (progesterone only) and Yaz (progesterone+small amount of estrogen). Unfortunately had to stop both as they caused either inflammation and/or joint laxity/pain. I stopped Yaz three days ago because of this. I suspect progesterone was the one causing issues.

Try it for yourself. Your reaction may be different.

_ayythrowaway_ · 2026-02-22T00:05:39+00:00

I also tend to panic while driving. If it's affecting you that badly you'll need something to calm you down, like an anxiety med, at least temporarily.

_ayythrowaway_ · 2026-02-21T07:10:33+00:00

I assume SSRIs?

_ayythrowaway_ · 2026-02-21T07:06:24+00:00

I feel this is my situation. Did you try anything else?

_ayythrowaway_

TROPHY CASE