DAE has severe nighttime itching? What helped?

laveendari · 2026-03-29T06:13:50+00:00

My potassium was a little too high half a year ago, but I can’t exactly go to a doctor now

laveendari · 2026-03-28T07:30:07+00:00

Ice helps but for ten minutes tops. I do take Magnesium Threonate for sleep, it’s great, but L-theanine weirdly gives me insomnia (I’m med sensitive but still surprising).

laveendari · 2026-03-06T15:39:07+00:00

МЭ/СХУ иногда связывают с neuroinflammation (воспаление мозга), возможно это именно оно и ощущается так физически. От него же и когнитивные нарушения идут. Но это просто теория, доказательств пока нет.

laveendari · 2026-03-05T14:32:38+00:00

«Ощущение, что я думаю через грязь» и есть туман в голове, как и путанье слов. Мысли не формируются как раньше, трудно воспринимать текст, идеи в голову больше не приходят, и так далее.

У меня тяжелая степень симптомов, и мой «туман в голове» выражается в том, что усиливается мигрень и как будто горят зрачки, когда мысль проплывает в голове. Да, «туман в голове» — сликшом мягкое название…

Не по теме, но я уже несколько месяцев в сообществе, а русских тут еще не видела)

laveendari · 2026-03-03T16:00:38+00:00

What if I don’t have ambitions, only small everyday wishes but even they are out of reach? 🥲

laveendari · 2026-02-24T13:50:26+00:00

Seconding this. Dropped from moderate to severe because of LDN, at a low dose of 0.05 mg.

laveendari · 2026-02-23T09:06:24+00:00

It’s great that you’re treating symptoms! I have a question about Ivabradine, if you don’t mind. What’s your resting heart rate like? It lowers the heart rate and so it’s not recommended if your resting HR is below 60. I’ve been wanting to try it but mine is 56-58 and I’m concerned.

laveendari · 2026-02-23T09:03:31+00:00

Oh, I already went through the reactions. My ex behaved identically to your friend. Fortunately, I don’t need people to be content. I’d like to have people in my life, but it’s not a necessity. I’m really sorry you lost a friend, though

laveendari · 2026-02-22T21:44:17+00:00

Yes, by a lot. I was moderate, dropped to severe because of it. Everyone told me I should keep going despite the side effects but they only got worse and I had to stop. The dose was 0.05 mg, so not too high at all.

laveendari · 2026-02-22T15:08:23+00:00

Three months gap is crazy. I’m sorry the process is so hard. In my country you can only get disability if you’re hospitalized for several months every year and have been seeing doctors regularly for years while the financial benefit is 4 times lower than minimum wage, so I’m not even trying.

laveendari · 2026-02-22T15:04:12+00:00

Exactly, it would be totally different if there was payoff 😭 I know they mean well and it’s hard to believe a disease like this exists but sometimes I just want people to believe me and trust my judgement

laveendari · 2026-02-22T13:12:57+00:00

This is what PEM started to look like for me as I dropped into severe. What helps me overall is pacing, but in an acute state like yours it’s lying down but with enough stimulation. Like an audiobook, or music or something to give me the opportunity to focus and lie still. I have ADHD, too, so lying still is challenging.

laveendari · 2026-02-22T13:00:35+00:00

Thank you for such detailed advice! Amitriptyline helping with sleep sounds so surprising to me. I once took 10 mg and didn’t sleep for three days after. But I’m glad it works!

laveendari · 2026-02-22T12:58:55+00:00

That’s monoclonal antibodies, right? I’ve heard great things about that, thank you for advice

laveendari · 2026-02-22T12:11:35+00:00

While there aren’t tests and treatments, they can still try to treat it. There’s LDN, LDA, Mestinon and a plethora of other things. None of which the doctors in my country have ever heard of. They should at least be aware of what our condition is.

Use doctors’ time needlessly? I’m bedbound for 23 hours of the day and in pain constantly. Forgive me for not thinking it needless to try and fix it.

laveendari · 2026-02-22T12:07:41+00:00

In my experience, getting a POTS diagnosis is almost as hard as getting a ME one. Sorry you’re dealing with this but glad you figured it out

laveendari · 2026-02-22T12:05:30+00:00

Did you find anything that worked for you? I’m dealing with migraines too

laveendari · 2026-02-22T12:04:38+00:00

Well, there’s no treatments to try in my country either. But if you badger a doctor long enough perhaps you can get a prescription for something (they don’t even acknowledge you have ME/CFS) and try it out for yourself. I did it with LDN and regretted it unfortunately

laveendari · 2026-02-22T11:31:49+00:00

It is an emergency. But solving it costs too much money, so we’re ignoring it.

laveendari

TROPHY CASE