u/Flashybigbum

I can’t sleep, so I’ll write these down now.

5 months into supplementation

I’m getting what I believe are adrenaline dumps when I’m falling asleep or while I’m asleep. This seems to coincide with me taking melatonin over the last two nights, alongside extreme crashing and a really uncomfortable itch on my upper back that apparently has a neurological origin 🤷‍♀️

Also, something really strange, but positive. Today I managed to do something I could never do, even before getting COVID and falling into this horrible, debilitating illness.

I managed to tidy without feeling the need to deep clean everything.

I used to think this was just a personal issue, but I saw someone talking about how neurodivergent people often perceive cleaning and tidying as the same task, which makes it overwhelming, hence the mess, the exhaustion, and the procrastination.

Now, this might not last. Maybe tomorrow I won’t be able to do it again, or ever again. But even though I felt tired, foggy, and like I was coming down from a horrible crash, it felt natural to tidy, sort things, put them away, and decide what to do with them.

Obviously, I didn’t sort out my entire place after two years of this, but I’ll take it, even if it was just for one da

Anyone else has had this as a wake up symptom? Did you find relief?

I’m unsure if this is what I have as I also have some large spots not a rash , they look like acne spots?

Yesterday I mixed one hydroxocobalamin 1500 shot with a methylcobalamin 500 and had it IM, I was already crashing and fighting serious self harming intrusive thoughts during the day, then during the afternoon I took my Iron-c pill that I take EOD this time I took it alongside a copper pill. Was this a mistake?

Could this particularly trying crash be a "wake up symptom" of sorts? I remember when I just started taking iron and a high dose homocysteine support supplement, months before injections I had a similarly scary one.

For context I havent been doing well lately, at the beginning of march after EOD shots since ~December I felt I was on track after only a couple of days taking oral B1 I had a massive crash with obvious symptoms of depleted electrolytes and that I started to go really bad and crashing frequently after minimal exertion, not very linear with some good days and some interesting improvement after adding methycobalamin shots to my hydroxo ones, upping de folinic acid dose and one particular IV session with a B complex and vitamin C.

Now, I’ve been crashing since Friday. While the crashes are still severe, they’re somehow less disabling. Before treatment, they would leave me so incapacitated that I couldn’t even move, think or understand anything. Resting wasn’t optional; I didn’t even have to think about it; it would knock me down severely.

Now, I feel I have more buffering, so I can still push myself for a little longer until my tinnitus becomes extremely loud and my hands start to shake. However, I’m still not working (I’m a freelancer, so this is really bad). The downside is that I feel incredibly anxious and suicidal during crashes, and I’ve already ended up in hospital for an attempted suicide after a particularly difficult week. (Seeking help in the UK feels like a crime, and the treatment I’ve been receiving is appalling.)

I’d like to know what’s the highest you injected EOD and what type? Also what were your symptoms to prompt you to inject EOD? I don't have a formal diagnosis but I think I have and extremely disabling dysautonomia from Long Covid and I'm trying to figure out if I could tolerate or even if it'd be beneficial a really high dose, like 5000 mcgs EOD instead of the 1500 hydroxo and 500 methyl I'm currently injecting.

Did it work? Did you tolerate it well?

I've been feeling weak and on the verge of another PEM crash for the last few days, I was in London so I thought I'd take potassium pills rather than the liquid form that seems to work really well for me. I didn't take enough and I started to feel severely depressed, today I used two Cystopurin sachets (3 grams of Potassium citrate each) and I travel back home fine. I mean, I am not "cured" but not crashing either.

Also I made a meme:

https://preview.redd.it/ug0vwyddpjzg1.png?width=455&format=png&auto=webp&s=972b46c8449cc6aba8eb3664679d35a0c733351d

I noticed since starting treatment that apart from some episodes of polyuria related to the treatment itself I don’t need to constantly wee. I wee normally I don’t need to wee that much anymore. I remember avoiding drinking water before bed or before leaving the house bc I’d need to wee almost immediately.

I have severe energy crashes that come with extreme psychological distress, so far what has been helping with that and mood has been a high dose of folinic acid (~2000 mcg) and energy wise methylcobalamin shots.

Plus of course potassium, mg, sodium and other cofactors, iron etc.

But I’m finding myself a lot more worked up and less tolerant to BS.

I’m finding it hard to find a balance

They did not like that.

https://i.redd.it/yuutyhb16rxg1.gif