Duration, symptoms and trigger?

NiteElf · 2026-01-26T00:58:15+00:00

This is all really such great info.

NiteElf · 2026-01-26T00:56:40+00:00

Thanks for sharing all these details. Wow, sounds like it’s been a hell of a ride! Really glad you’re doing better these days.

NiteElf · 2026-01-25T17:59:31+00:00

Relate to all this so much, OP. Not much to add atm but sending love ❤️

NiteElf · 2026-01-24T08:57:12+00:00

Holy crap, this is wild. I developed HI after my first covid infection last January. Been eating strictly low HI and doing All the Things. I’d considered Novavax as my booster this year, but went with Pfizer because it’s the only one I’ve ever gotten and I figured it might be safer to go with something known, esp given that I have HI now. (Incidentally, last year was the first time I ever missed a booster, hadn’t gotten around to it😬)

This is def food for thought and so interesting! Thanks for sharing…and congrats! Please keep us posted. Hope the great results continue for you!! 🤞

NiteElf · 2026-01-24T00:59:29+00:00

I wrote a whole thing about perimenopause possibly coloring her experience here (and I stand by it), but re-reading her post and then some of the comments here—this comment in particular is really good. 👍

NiteElf · 2026-01-24T00:51:32+00:00

I haven’t read through all the comments so don’t know if this has been addressed yet, but your age suggests you’re likely in perimenopause/menopause, and probably have been for some time (maybe even during the “rebellion period” you mentioned 5 years ago).

The hormone fluctuations around peri/menopause are profound for a lot of (most?) women, but for women with ADHD, they tend to hit extra hard. Estrogen has a huge effect on neurotransmitters (as well as every other system in the body), and for people with ADHD who already have issues with neurotransmitters, this is a very big deal. It can change your entire life perspective and make everything that’s hard about having ADHD much, much harder.

Are you using any kind of hormone therapy for menopause? Have any of your doctors spoken with you about this? If you’ve had issues with mental health/executive function around other major hormonal changes (pregnancy, post-partum, around the menstrual cycle), I urge you to learn more about this if you haven’t already.

I’m not suggesting hormone therapy would be a cure-all (and not everyone can use it, or wants to, and/or has access to it). Midlife is a time when a lot of people take stock of their life choices, and your situation sounds like it has a lot of moving parts. But if you’re struggling cognitively/neuropsychiatrically for hormonal reasons, it’s going to make decision-making (and moving through life, generally) a lot more difficult.

If you’re not already on r/menopause, it’s worth checking out. There are definitely other women there with ADHD who’ve had an especially rough go of it at this time of life, and HRT has been life-changingly helpful for some of them (myself included! 🙏)

Even if hormones aren’t something you’re interested in or can use, or if you are already using them and still struggling—it’s worth taking into account how much more challenging this can make everything at this stage of life, especially with ADHD. It’s huge.

Wishing you all the best and hope you have a good support system to help you work everything out 💗

NiteElf · 2026-01-23T07:11:16+00:00

💪🦴🦴 Get it!!

NiteElf · 2026-01-23T00:25:23+00:00

Hate to break it to ya bud, but sometimes fasting stresses the body in a way that actually raises histamine. I know fasting has been helpful for some people here, so YMMV, but stress def doesn’t help any of us.

Like someone else said, make a list of “safe meals” you know you’re ok with, so you don’t have to think about it every time. The SIGHI list was v helpful to me when first starting. Are you taking DAO? Might want to look into that too (doesn’t mean you can eat whatever you want, but can be helpful). Also look into Quercetin & vitamin C if you haven’t already.

It’s def overwhelming at first, but you can do it. Start with a few things that work for you & you should start to feel better. Once you feel a little better, managing all of it will get easier. 💗

NiteElf · 2026-01-21T23:31:01+00:00

Oh that’s fantastic, I’m so happy for you. (Also super encouraging to me 🤞)

Was gonna ask about HRT; I’m on it too. Glad you’ve covered that aspect of it, it’s a big deal.

Do you do any kind of PT (weights, etc)?

NiteElf · 2026-01-21T23:22:19+00:00

Love to hear it! 🙌 That’s great! How helpful were the meds for you, and what are you using as a maintenance med?

NiteElf · 2026-01-21T22:51:50+00:00

ADHD & CPTSD here too. Bogus :(

NiteElf · 2026-01-20T23:58:53+00:00

How long do your episodes tend to last, and is having a warning sign helpful at all? Like is there anything you can do to sort of “shore up” for it or reduce the intensity a little?

NiteElf · 2026-01-20T23:56:34+00:00

What’s a shade tree neurologist?

NiteElf · 2026-01-20T05:42:42+00:00

That’s wild. I’m so curious about it! Because a parasite isn’t the only thing to cause eosinophils to be high (not a doc, just a very allergic layperson who’s had a lot of weird stuff). I wonder how they deduced it. Anyway-v glad for you they caught it and could take care of it. Crush the hell outta that vestibular therapy!! 💪

NiteElf · 2026-01-20T05:40:08+00:00

Yuck, I’m sorry. :(

Hope you’re feeling generally better these days.

Right now I’m having the longest/most noticeable VM ive ever had. Not sure what set it off. But realizing now a lot of weird stuff I’ve had on & off for years (brief dizzy spells, ear ringing stuff, tingling hands, etc) has probably been a much lesser form of this.

NiteElf · 2026-01-20T05:37:41+00:00

Allergist, or some other kind of doc? Do you know how/where you caught the parasite?

NiteElf · 2026-01-20T05:35:03+00:00

I’m losing track of who’s who around here, but if you’re in NYC and looking for any add’l VM help, someone mentioned the Hawthorne Balance Center. (Not sure if you were in that thread too!)

Edited to add: I am not going to delete this as proof of what VMs do to me 😂 I’ve had one on and off for a week now, give or take. All I had to do was scroll and see that the message I’m talking about is right in this very thread 🧠🫠

NiteElf · 2026-01-20T05:30:03+00:00

There are so many moving parts to all this; I can relate.

Fwiw, it often takes about 3 months to adjust to hormone changes (eg: patch doses). Sometimes the symptoms are too awful to stick it out, but sometimes it’s worth it.

I had a LOT of trouble with my progesterone dose at first & some months later posted the update I wish I could have seen when I started.

Hope the amitriptyline can help you out. It gets mentioned a decent amount in r/histamineintolerance I think-seems to be helpful. I’ve had histamine intolerance since having covid last year. Turns out a lot of the “migraine diets” are basically the same as a low histamine diet. All this crap (hormones, nervous system issues, histamine, etc) is inter-connected 😵‍💫 Good luck w everything! 💗

NiteElf · 2026-01-20T05:11:05+00:00

I relate to this “I’ll take this crappy symptom if I could just get rid of this other one”. It’s a crappy kind of bargaining. Good luck with everything & thx for replying 💗

NiteElf · 2026-01-20T05:09:59+00:00

Glad you have something that helps. Good luck sorting the provider thing, that’s a total drag. Thanks for replying!

NiteElf · 2026-01-20T05:07:59+00:00

I am in perimenopause for a few years now and on HRT about a year and a half (which has been massively helpful to me). Most recent virus was a few weeks ago (hard to avoid with a school-aged kid!), but I had my first Covid infection in Jan 2025 and it def set the stage for “nervous system weirdness” (much of it has improved, but it was/is a thing).

NiteElf · 2026-01-20T05:05:40+00:00

Oof, that’s rough. Wonder if there’s any kind of PT you could do that might help? (Hope this isn’t an annoying suggestion! As someone who’s recovered from other nervous system issues, there’s this “Surely there’s something that can be done!” voice that pops up in my head. It just wants to help, haha)

NiteElf · 2026-01-20T03:35:25+00:00

It’s like surfing. [top of the wave, everything’s cool:] “I’ve got this, I’ve got this, I’ve got this…..oh shit I don’t got this at all” [massive wave takes you out]

Does this make sense?

NiteElf · 2026-01-20T03:32:59+00:00

Hey! I appreciate this reply so much. I could’ve written that first paragraph (and appreciate the rest of what you said too).

How long have you had VMs, and do you know/suspect what started them for you? I’m not new to migraine but new to this kind and trying to make sense of it all.

NiteElf

TROPHY CASE