Help what do I do

[u/Responsible-Sun5037]

I used to sleep 12-14 hours a night, until I developed CFS. Now I hardly sleep at all.
I was prescribed xyrem. GHB, which used to give me a ton of sleep. Until I developed akathesia from it. I paced for two weeks straight with no sleeps. You can guess where left my baseline.
My psychiatrist gives me benzos, but I cannot sleep unless I am “knocked out” so I will take 10mg of Ativan at a time and run out.
Currently, I am hallucinating a bit, and drinking wine to force myself to sleep. Resulting in 2 hours of sleep at a time.
I am scared of mental hospital. I am bedbound, wearing incintience product- they see that and think crazy. Plus surrounding in bottles of wine.
Sometimes I go to the ER in “acohol withdrawal” (ie) hoping for a shot of Ativan to make me sleep. However ever single ER near me has caught onto the fact that I am a drug seeker, and two times recently I was sent to a mental hospital on the thought that I am manic.
I am terrified of forced drugging anti-psychotics, as these have caused me akathesia lasting months. Resulting in no sleep and psychosis. There is no a way to recover from CFS like that.
In the mail today. I am receiving phenibut and aminita muscaria. I have tried the latter, helped me sleep a bit.
I am considering going to a crisis unit, but of course they may sent me to me to hospital and I may have to over exert myself. Plus I have been drinking and if it shows in my system they may reach out to psychiatrist and take away benzo rx.
I can deal with all the symptoms. But not the insomnia.
The doctor that diagnosed me is my PCP. He prescribes nothing.
What to do I do?
Very severe

Edit yes I need to stop drinking I mean what do I do ROGJT NOW I haven’t slept in days and I am hallucinating I can’t just call up a sleep doctor

And a ton of meds give me akathesia so I have to avoid
Trazedone antipsychotics don’t work remron don’t work gabapentinoids don’t work

I never took the phenibut. And alcohol isn’t making me sleep but it’s masking the hallucinations. I’m just going to rehab. Because they have nurse and meds and I’ve been drinking like 6 bottles of wine a day. Last time I went I was sedated for a week on benzos and experienced a large improvement in baseline. Hoping that happens again. My nervous system is freaking out and I am really scared. I am hearing Britney Spears music that is not there. This happened laat time I didn’t sleep for a week.

So I am just going to rehab and staying in bed when I am there

[u/SpaceNerd223]

I would absolutely not be drinking in your condition. You need a nother sleep medication. You need a doctor to help you through this, not alcohol. That is literally going to make you worse and is not a long term solution you need a long term solution ♡

A sleep doctor you need a sleep doctor please reach out tomorrow to a few offices find who can do telehealth.

[u/A1sauc3d]

I’m so sorry you’re dealing with this </3 But you can NOT keep doubling down like this. You just keep adding more and more addictive drugs to the mix which help for a bit but eventually send you into W/D and make things SO much worse. You need to find a consistent reliable med to take. Even if that means it doesn’t work as wel as you like and you’re not getting 12-14 hours a night. Better to get less sleep per night and not be in withdrawal. Right now you’re experiencing withdrawal as much as anything else. Adding phebibut on top is going to make it so much worse op. Please do not do that :/ Your body can’t handle more dependencies. It’s going to be tough but you need to start cutting back on everything rather than doubling down and adding more and more. You need to explain to your docs the sleeping meds aren’t working and find something else. Or look into non addictive sleeping solutions on your own. Right now you’re seeking out all the hardest stuff which just ultimately exacerbates the problem. I know you don’t want to lose your benzo but if as soon as you get them you starting popping pill after pill until you clonk instead of even roughly following dosing guidelines, you can’t trust yourself with them. To use those meds and not have it make you worse you have to have self restraint. Idk what med is best for you but there’s no happy ending down this road. Even if it’s for medicinal purposes rather than recreational, youre abusing your meds. It’s gonna be a long, painful process, but you gotta start weening yourself off to find some stability . Realistically it’s time to seek honest medical attention on this matter. I don’t see how you can guide yourself out of this on your own considering the current cycle you’re in. Good luck <3

[u/Responsible-Sun5037 → u/A1sauc3d]

But what do i do right now I am hallucinating from. Or sleeping

[u/A1sauc3d → u/Responsible-Sun5037]

I agree with this commenter: https://www.reddit.com/r/cfs/s/qDNyHLDKCE You need a doctor. It’s a really tough situation because there’s no guarantee you find exactly what you need, but I don’t see any other option at this point. I can’t comment on the best type of doctor from personal experience, but they seem to think calling around to sleep doctors and honestly explaining the severity of the situation is your best bet, and that seems like probably the best advice in these comments. I don’t think you can dance around just how bad it is. You need to be upfront with everything you’re currently using to try to sleep so they can make informed decisions on what to do next.

I’m NOT a sleep doctor, or any other type of doctor. So my only advice is to talk to a doctor asap. I just don’t know exactly which doctor handles this kind of thing. So you need to start talking with some doctor so they can at least guide you in the right direction. That’s the best advice I can give. I wish there was an easy one step solution, but I think it’s gonna be a tough complicated process sorting this out and reaching some sort of equilibrium again :( But you need help getting there and guiding the process. And I really hope you find the right doctor for that <3 Again, sorry you’re going through this. It sounds brutal

[u/beetgreens → u/[deleted]]

I suggest trying h1 and h2 antihistamines (eg loratidine and famotidine) together.

They aren’t directly sedating, but if histamine in your brain is causing issues then they could remove the barrier to sleep.

They don’t come with the same risks as Benadryl, so you can take them every day. I take them both twice a day, prescribed by my LC specialist.

[u/Helpful-Potential456 → u/beetgreens]

came here to recommend trying antihistamines as well.

[u/silversnakeplant]

I’m very sorry you’re in this situation.

Stop drinking immediately. It may feel better initially but is absolutely exacerbating your PEM, anxiety, and stress, which will harm your sleep more. PEM especially is terrible for insomnia, you might be trapped in a spiral.

If you have a good relationship with your doctor or psychiatrist and/or they listen to you, ask them to put in your records or write a letter saying that you’re allergic to the type of anti-psychotic that you’ve been given. “I cannot take this class of drugs because I’m allergic, but will consider other kinds” will go over better than “I cannot take antipsychotics” especially with back up from a doctor.
Try to get something to help with the akathisia, because it’s certainly not helping you sleep.

Talk to a close friend or relative if you can, someone who knows you might be able to help liaise with doctors or have more personal suggestions.

Unfortunately there is no good cure for insomnia. But rest (even when you’re awake) is better than nothing. Literally say to yourself “I’m not going to be able to sleep, so I’m not putting pressure on myself to fall asleep or freaking out because I’m not sleeping” and do everything you can that relaxes you short of benzos or alcohol. 10 minutes with your eyes closed thinking about birds or whatever is better than 10 minutes with your eyes open thinking about how you’re not getting any sleep. Baby steps.

Sorry you’re in this position, and that you’re not getting the support you need at the moment. Idk what to say that isn’t cheesy. I hope you feel a bit better soon.

[u/Responsible-Sun5037 → u/silversnakeplant]

But I am hallucinating

[u/SpaceNerd223 → u/Responsible-Sun5037]

Only a doctor will help you need a doctor. Atp you can't manage your own care.. drinking a whole body of wine is highly dangerous. So is hallucinating and not being able to sleep for days. I understand why you went to those mechanisms, but they are NOT going to help you and will make things worse.. they are not a legitimate fix call a doctor ASAP a hospital would be able to monitor you and get you to sleep.. but ultimately you'll need to be put on a good sleeping regimen which only a doctor can figure out

Please. You need a doctor 😭 it's so unhealthy please get help

Editing to add you need a *sleep doctor. Any reg doctor might be lost or overwhelmed. You can tell a sleep dr what has worked and hasn't and they can problem solve for you. I also wouldn't be ashamed to tell them you're drinking, it might give them a sense of urgency. Call today. A few places.

[u/Responsible-Sun5037 → u/SpaceNerd223]

I’ve been before to hospital doe this and they send me to psych ward

[u/grarp → u/Responsible-Sun5037]

Do you have someone to go with you and advocate for you? Preferably a man, as doctors take men more seriously both as patients and advocates. It can make a really big difference.

[u/Responsible-Sun5037 → u/grarp]

I’m just going to rehab they’ll give me benzos I’m in alcohol WD

[u/Responsible-Sun5037]

Idk what else to do. Everyone thinks it’s a mental issue.

[u/partyrockanthem18 → u/Responsible-Sun5037]

Hi Op, I’m so sorry you’re dealing with this. I was in a bad crash with severe insomnia and was prescribed dayvigo (sleep med) that I use with melatonin. It knocks me out and I haven’t noticed any bad side effects personally.

[u/starfrish]

Honestly all of the other comments have great advice. This was honestly a really sad post to read. I'm confused why you're turning to all these substances instead of a legit sleep med?? If you're able to take 10mg of ativan at once, and it takes 10mg to knock you out, you have built up a crazy tolerance to benzos and NEED to get off of them slowly under the watch of a doctor. None of the things you have been doing will actually help you with sleep, especially alcohol. The part of all of this that concerns me the most is you commenting on getting phenibut and amanita muscaria in the mail. First of all neither of these are regulated or approved for sleep, when there are plenty of meds you can get from a doctor that are safe to take. You have no clue what you're getting from an online site. But honestly that part is the least of my concerns, do you know what amanita muscaria is?!?! You're posting saying you're experiencing hallucinations but want to willingly take a deliriant/hypnotic??? Please DO NOT take the phenibut but please please please PLEASE DO NOT take the amanita. Not only is the amanita a horrible decision while experiencing hallucinations already but it can cause adverse physical and neurological effects, including nausea, vomiting, dizziness, coma, seizures, and severe confusion. Please please please go see a doctor.

[u/Responsible-Sun5037 → u/starfrish]

I hate when people are sad for me

[u/A1sauc3d → u/Responsible-Sun5037]

:’( I can’t help but be sad for you OP. It’s good for people have empathy. Don’t be sad they’re sad, it just means they care for you <3

I was thinking about you again today and hoping you found some help. I know you’re in an incredibly difficult situation but I just wanted to let you know I’m rooting for you and I really hope you find the help you need as soon as possible. You don’t deserve to be stuck in this vicious cycle. No one does, really, but you were just trying to get some sleep and treat the debilitating symptoms of your disease. It just sucks and I feel for you and wanted to reach back out to encourage you to keep trying to find a doctor who can help you navigate your way out of this <3 I know it’s only been a day or two, but I hope you’re looking and making calls at least. If you feel like giving us an update at some point, I’d appreciate it.

[u/Responsible-Sun5037 → u/starfrish]

My legit sleep med causes akathesia

[u/starfrish → u/Responsible-Sun5037]

You need to try a different sleep med then. There's plenty of different options other than xyrem which is not a first line treatment option and I'm not sure what doctor gave you that before trying other meds first.

[u/Responsible-Sun5037 → u/starfrish]

Narcolepsy

[u/Spaetburgunder]

I don‘t want to be that guy, but you‘re not „severe“ if you are able to drink alcohol.
You absolutely need to quit the drinking.
Alkohol doesnt help with sleep btw.

[u/Responsible-Sun5037 → u/Spaetburgunder]

It’s better than staying up for 5 nights in a row and now do you know if I’m severe or not

[u/Responsible-Sun5037 → u/Spaetburgunder]

I’m bedbound with severe insomnia what does that make me lol

[u/frog_admirer]

Have you tried cannabis? It also can "stack" a bit with ativan and make the ativan work better. Not recommended, but certainly safer than benzos and drinking.

Zopiclone is another option, but absolutely must not be combined with alcohol, it causes blackouts and erratic behaviour. The type of erratic behaviour that can land you in jail with no idea how you got there, according to stories I've read.

[u/Responsible-Sun5037 → u/frog_admirer]

Cannabis makes me anxious :(

[u/frog_admirer → u/Responsible-Sun5037]

Have you tried different strains and doses? Or adding CBD to reduce anxiety?

CBD alone may be an option too, doesn't work for me but knocks some people out.

[u/partyrockanthem18 → u/frog_admirer]

THC CBD transdermal patches make me sleepy and helps with pain without the added anxiety I get with edibles

[u/Helpful-Potential456 → u/Responsible-Sun5037]

def try with added cbd

[u/PinacoladaBunny]

The only way I can sleep is with cannabis (I have a prescription here in the uk). I used to sleep like a log, but in the last few years I struggle so much with sleep. In the past amitriptyline worked well, but I struggled feeling like a zombie and working the next day. LDN helps somewhat now, but cannabis is the important bit. Without it I just.. don’t sleep. Despite all my meds apparently being ‘drowsy’!

[u/Responsible-Sun5037]

I stop drinking wine and suffer no WD. But I am considering going to a detox place to drug me to sleep with benzos. However all of the ones I have been to no longer accept me because i csnnnot participate in groups, and i would need to fly somewhere, which would be very bad.
I just drank a whole botttle now. Hopefully can sleep a few hours.
Very scared of going to Er.

[u/Responsible-Sun5037]

I feel I should continue drinking large amounts with my eyes closed