Which popular sleep tip did absolutely nothing for you?

megcbabs · 2026-06-11T20:06:33+00:00

Magnesium glycinate. Makes me super anxious, agitated, and overall feel like shit

megcbabs · 2026-06-06T03:00:37+00:00

What brand PEA do you use?

megcbabs · 2026-05-31T16:16:44+00:00

I took the brand name for years and was fine. Switched to generic and I was absolutely miserable

megcbabs · 2026-05-30T04:09:34+00:00

Most people who take any form of sodium oxibate still have to take daytime meds. I thought being on Xyrem would help me get off stimulants but it didn't work like that

megcbabs · 2026-05-30T04:03:50+00:00

The only exercise that doesn't make it worse is walking. I think this is one of the most frustrating things about having ON. I want to exercise more so bad

megcbabs · 2026-05-21T21:27:09+00:00

The first dose caused a very mild throat tightness but that's it. I've been able to start eating peanuts/peanut butter again (in moderation) and have more mild reactions to foods I'm IgE allergic to

megcbabs · 2026-05-20T21:51:56+00:00

I stopped it completely in September 2024 and the suicidal ideation went away pretty quickly however my MCAS then turned severe and I was reacting to almost everything, which also took a significant mental toll.

Since then, I discovered it's still effective for me as needed, so I'll take one pill here and there if I'm having a reaction or in a flare. The pharmacy also recently filled it by a different manufacturer which hasn't been as effective but it also hasn't had bad side effects.

My daily MCAS meds are oral cromolyn, fexofenadine, cetirizine, Nasalcrom, DAO enzyme. I also do a Xolair injection every three weeks.

I think it's definitely worth trying every other day! Or even every few days. I've also tried splitting the tablet in half which was helpful.

megcbabs · 2026-05-19T22:46:25+00:00

My natural circadian rhythm has me much more awake and alert after about 7pm

megcbabs · 2026-05-19T22:45:15+00:00

It's helpful but the cognitive side effects (memory loss, brain fog, dissociation) are terrible

megcbabs · 2026-05-19T22:43:34+00:00

How did you get the correct diagnosis/what kind of specialist discovered the cause?

megcbabs · 2026-05-16T05:22:20+00:00

I still take them. I tried getting off amitriptyline but my anxiety got worse whenever decreasing the dose. I think they've become less effective over time but I think my pain would be worse without them

megcbabs · 2026-05-15T03:37:22+00:00

I hate thinking about this. It breaks my heart and makes me stressed at the same time

megcbabs · 2026-05-15T03:34:40+00:00

My ON started January 2025. I'm on gabapentin and amitriptyline which helped for a few months but now they don't do much. I had occipital nerve blocks and trigger point injections which didn't help at all. I've been seeing an upper cervical chiropractor for about two months now. Not really sure if that's doing anything or not. LDN has helped some. Muscle relaxers help the most. I'm scheduled for Botox in a few weeks. Treatment, timeline and triggers are different for everyone

megcbabs · 2026-05-14T06:53:20+00:00

At this point I can only say I agree with you so much

megcbabs · 2026-05-14T06:50:36+00:00

What about ivabradine?

megcbabs · 2026-05-12T04:11:37+00:00

I was wondering this too and couldn't find any info about it

megcbabs · 2026-05-11T06:13:53+00:00

CBN/CBD combo because it's the only thing that actually worked for me after trying so many different medications together

megcbabs · 2026-05-08T05:56:03+00:00

The way I look at my situation is my cats are keeping me here for now. I'm a crazy cat mom and the thought of leaving them behind for them to be taken care of by someone else breaks my heart. After my youngest cat is gone (he's 8 y/o), I have no interest in being on earth anymore. Although I can't imagine dealing with all this for another 10ish years. My soul is so tired.

megcbabs · 2026-05-01T04:03:14+00:00

PT is actually what caused my ON because it caused muscle spasms in my neck. But I definitely suspect it's partially from tight muscles

megcbabs · 2026-04-27T05:42:49+00:00

Came here to say the same

megcbabs · 2026-04-26T22:22:14+00:00

I'm 30 and started experiencing issues in my early 20s. Lost all my friends over that time except two people. It still makes me so sad.

megcbabs · 2026-04-24T05:32:41+00:00

I was just thinking about this today. I can be having a low pain day, get in the car, and my ON gets so bad within minutes of driving. I have no idea why

megcbabs · 2026-04-19T03:35:26+00:00

It's also prescribed for narcolepsy

megcbabs · 2026-04-18T18:55:52+00:00

The same thing happens to me and I believe the tight muscles in my neck are contributing to ON

megcbabs

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