Update: Now Very Severe

crypt0cu1t

IG: @crypt0cu1t
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Hello everyone,
I'll try my best to make this post as coherent as possible given my extreme limitations;

I just wanted to update this forum as I haven't posted in while due to becoming extremely severe and failing to improve on IVIG, PLEX & Steroids.

I am at a loss of what to do honestly. I seem to be in a constant crash. EVERYTHING that I do is causing me extreme sensory overload. Simply sitting up, trying to look at TV screens, play video games, talking, looking at too much visual stimulus causes intense derealization/dissociation, confuision, psychosis, sleep attacks, burning head pains and the list goes on... I'm convinced I don't have much time left her eon this earth as I can't ind any doctors willing to do second line AE treatments on me like Rituxan, Cytoxan.

I seem to be sleeping more and more lately and its getting extreme demoralizing. I fall asleep around 11pm-1am every night and wake up around 2-3pm every day, Does anyone else have this? No matter how long I sleep, I wake up in this extreme foggy, confused, paranoid state with severe head pressure and derealization.

Even if i get 12-14 hours of sleep, I still am only to be awake for around an hour MAYBE two before my brian shuts down and I start feeling empty, confused, racing confusing thoughts and difficulty moving..

Anyways, I'm in the process of trying to find someone who will help me get further immune suppression as I now have new evidence of brain inflammation (High protein in CSF, High neopterin in CSF)

Sorry fi this post is a bit jumbled, im battling extreme confusion and trying my best to udate you all as best as possible because i have refeived so many messages from worried friends on this forum
 

hapl808

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Sorry you're dealing with that.

For me what 'helped' a bit (still pretty severe) is stopping a lot of that stuff. No more doctor's appointments, video games are absolutely too much (shame because I thought it would be a nice distraction), no in-person socializing, some minimal phone conversations are okay, some videos are okay. I didn't get 'better', but I stopped being in a constant state of crash.

It is a bit hard to comprehend that a video game or video chat or long phone call can lead to a days long crash, but after years of pushing myself I finally figured that out. I'm still exhausted, I still can't really work, just cooking simple food pushes me to my limit, I still crash easily. So it's not a solution, but at least my crashes now are usually tied to activity as opposed to feeling random and constant.

I think the harder you try to work to improve things, the worse it can get. I can't imagine trying to play a video game at the moment, let alone navigating doctor's appointments beyond occasional telehealth.
 

crypt0cu1t

IG: @crypt0cu1t
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Thank you for the reply! It’s just incredibly frustrating because most of the time I have no idea what causes my crashes.

I could rest and pace for weeks and still have crashes, almost as if it happens for no reason to be honest.
It’s insane to think simply watching tv or reading a book or looking at screens could do this to us.
 

hapl808

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I could rest and pace for weeks and still have crashes, almost as if it happens for no reason to be honest.
It’s insane to think simply watching tv or reading a book or looking at screens could do this to us.
Yep, it took me years to figure it out. I started keeping food journals because I assumed it must be diet related. Yet I'd eat the same things and some days crash and other days I wouldn't. Same with acid reflux.

Ironically, Covid helped me a bit since I was always at home with no visitors. I still crashed sometimes, but I started making the connection between my crashes and computer work, reading, research, etc. I still have trouble anticipating or connecting crashes that are on the verge because the reaction is delayed usually 24-48 hours.

I think everyone is different, but for me YouTube (especially rewatching stuff) is generally fine if it's not something I have to concentrate on. Same with Netflix - rewatching stuff is great. The less stimulating the better, which is kind of the opposite of what we're drawn to, but seems to work for me. Music crashes me, as do video games. Reading novels doesn't crash me when I'm doing okay, but does when I'm doing worse. Working on the computer is tough - mindless stuff is okay, challenging stuff or something really engrossing will crash me. Anything that gives me a 'flow state' feel tends to crash me.

I'm housebound all the time, but lately I'm rarely fully bedbound. I have some muscular issues as well, which could be ME/CFS or EDS or who knows, plus MCAS extreme sensitivity to various smells and allergens. That said, I'm semi-functional considering the level of severity. I can do a 10 minute phone call where I sound pretty good to people, but it takes a lot out of me.

All of this sounds nonsensical to anyone not experiencing it daily. I remind myself of that and mostly have stopped trying to explain to others, as I realize that if I weren't experiencing it, I would likely not believe it. Sad but true.
 

lenora

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Hi @crypt0cu1t. I do remember you and I'm sorry that you aren't doing very well at the moment.

I agree with Hap about most things. I would not play video games, limit my thinking and motion and then take on one thing at a time. Try soft piano music in the beginning, anything gentle that doesn't require thought or action. If that doesn't work, move onto what you think may help.

No, I don't sleep that long at all. I'm an insomniac and try to keep to a strict schedule. Are you sure that you aren't having some depression in the midst of all of this? (No, I'm not a doctor, I'm not trying to make light of your situation, but would ask that you honestly appraise your situation). Can you go outside at all....in a wheelchair even? Contact with nature is good for all of us....watch the birds, the cars....whatever scenery is provided.

How is your nutrition? It's incredibly important to have a healthy body, especially when you're ill. I have high everything...BP, cholesterol and I'm in no position to preach. I'm not, but do know that I can't expect to get better or even onto a higher plateau if I don't live by certain rules. Are you sure you aren't dehydrated?

OK....I'll wear you out more than the video games and I don't want that. I hope you'll feel better. It has been awhile, hasn't it? Yours, Lenora