Tell me your Insomnia cures

[JuiceBox52]

I agree with all the above (except for robbing banks and NZ of course lol)
I also thought about you getting court's involved, but I was sure that would be a huge stress then on you and more of a pain then anything...

I'm surprised you can't have a team of doctors speak to your insurance company on your behalf. Cause this is life saving stuff. You need it...
I understand and don't understand why they won't cover most of these things... Your insurance company seems useless...

How is your donations going?
I really wish I could provide something for you monetarily, but I can’t atm... I'm so sorry.

My doctors ARE speaking to them on my behalf

 

[AdoraBelle Dearheart]

We’ve now most likely discovered the cause of the brain swelling. It seems it’s been there all along, an autoimmune encephalitis. PANDAS. Hopefully taking some streptococcinum pills will bring it down. This explains a lot of symptoms from years ago until now!

Are those pills not bringing it down? Or has it turned out to be a different illness? Have they given a definite diagnosis?

Still not sleeping a ton. The ambien is helping a little though. I spend some time this morning in v-fib, my heart is really starting to make me frustrated. Cardiologist is a little worried

Not 100% official yet but my medical team highly suspects I’m in stage 4 heart failure. No wonder I can’t sleep

Isn't stage 4 heart failure like, the final stage? With a prognosis of 6 months - a year?? How can they not be treating that in a young woman? That isn't a rare of expensive treatment, heart problems are so insanely common, and cardiologists are in every hospital, how can any insurance company refuse to treat heart failure in a young woman?

Figured I’d update. Dictating this message with assistance as I’m too weak to type

It is brain swelling, we now know that it’s my immune system creating antibodies it shouldn’t, thinking my brain and spinal cord is a foreign infection, and trying to kill it.
So immune system is attacking my brain, specifically the areas which control emotions, movement, and sleep

It caused the 8 days of insomnia, the extreme autonomic dysfunction with my heart, the hallucinations, psychosis, everything

It was either triggered by a virus, or toxic mold exposure (my apartment is dealing with some extreme mold issues)

What's the name of this illness/diagnosis??

It is causing seizures every few minutes, and tic attacks that are causing severe joint dislocations.

And they've sent you home?? How can they not admit someone whose brain is so swollen it's causing constant seizures, psychosis and severe joint dislocations??

If I can get IVig treatment it could settle down, but my neuro said there’s permanent brain damage.

And IVig would cost me about $40-90,000/per month

Nothing is guaranteed in an insurance plan. Specialty treatments/meds/procedures are at the discretion of the insurance company.


We don’t know if the heart failure is caused by the encephalitis or if it’s coincidental

If they're not sure what's causing both conditions, but both conditions are so severe, how can insurance be refusing to cover treatment for anything? They're putting you on palliative only care when you're like, 20, and in stage four heart failure??

 

[10 Tanks]

I have gotten only 10-12 hours of sleep, in 2 hour increments since Wednesday night (140 hours+ at the time of posting)

Please help. I can’t do another night of no sleep. I’m hallucinating from sleep deprivation. Don’t know who else to ask, so What works for you?

I can’t take sleeping meds or melatonin

Hello. Juice. You poor Gal. I hear you. I experience the same thing from time to time. I'm much older, so my situation is more expected. I'm getting from four to maybe five hours of sleep a night. There's an all natural supplement called "303" that may help. Remember, anything natural is going to take quite a while to work. Hope you're better soon. If you find something else that works, by all means let me know.

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[MuddyWaters]

I didn't read through all the posts, so some of this may be redundant.

I did see someone mentioned cherries already.

I use a drink called "Sleep". I'm 300 lbs and I can't drink the whole thing without sleeping all the next day, so it works well for me.

Also chelated magnesium works for a lot of folks. It has to be 100% chelated.

HOpe you find sleep- I know if I don't get 7-8 hours, I'm useless, so I cannot imagine how hard it is to function on the little you've had.

 

[JuiceBox52]

I didn't read through all the posts, so some of this may be redundant.

I did see someone mentioned cherries already.

I use a drink called "Sleep". I'm 300 lbs and I can't drink the whole thing without sleeping all the next day, so it works well for me.

Also chelated magnesium works for a lot of folks. It has to be 100% chelated.

HOpe you find sleep- I know if I don't get 7-8 hours, I'm useless, so I cannot imagine how hard it is to function on the little you've had.

Thank you. We learned it’s caused by encephalitis. I was able to get a little more sleep once I passed the “insomnia” stage and reached the “catatonic and fatigue” stage. I’m in the hospital currently.

 

[MuddyWaters]

Thank you. We learned it’s caused by encephalitis. I was able to get a little more sleep once I passed the “insomnia” stage and reached the “catatonic and fatigue” stage. I’m in the hospital currently.

OMG. Praying for you- sending good vibes your way!

 

[10 Tanks]

I didn't read through all the posts, so some of this may be redundant.

I did see someone mentioned cherries already.

I use a drink called "Sleep". I'm 300 lbs and I can't drink the whole thing without sleeping all the next day, so it works well for me.

Also chelated magnesium works for a lot of folks. It has to be 100% chelated.

HOpe you find sleep- I know if I don't get 7-8 hours, I'm useless, so I cannot imagine how hard it is to function on the little you've had.

Hello Muddy. Haven't heard of the "Sleep" drink. Thanks! It's available on Amazon. I'm not a big person. 5 ft 8 inches and 165 pounds on my best day. But, I'm an older guy and have sleeping problems every so often, no clue why. Thanks again!

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[JuiceBox52]

After being discharged from the hospital last night with a diagnosis of “somatic disorder” (that’s them saying it’s all in my head) despite my neurologist having diagnosed me with AE, and me having crashed multiple times in the hospital, I finally received the call to schedule my first IVig infusion! Praying it makes a difference. Some people have a difference immediately, some people take multiple infusions over multiple weeks to start improving.

 

[10 Tanks]

Hello Juice. I've been having some near sleepless nights lately. I've tried quite a few things and decided to go to the local CBD store for some "Full Spectrum" CBD and CBG oil. First, it's made from the Hemp plant, but absolutely won't get you high. It's nothing like that. Please, do some research into this natural remedy for insomnia, restlessness and inflamation. It has natural relaxants and is really good for your mental stability. It has so many benefits. It's not cheap, but at this point all you want to do is feel better.

10

 

[JuiceBox52]

Hello Juice. I've been having some near sleepless nights lately. I've tried quite a few things and decided to go to the local CBD store for some "Full Spectrum" CBD and CGG oil. First, it's made from the Hemp plant, but absolutely won't get you high. It's nothing like that. Please, do some research into this natural remedy for insomnia, restlessness and inflamation. It has atural relaxants and is really good for your mental stability. It has so many benefits. It's not cheap, but at this point all you want to do is feel better.

10

Thank you. I am on sleeping pills right now as needed. Right now the problem is sleeping too much. I have a brain disease we found out

 

[AdoraBelle Dearheart]

Thank you. I am on sleeping pills right now as needed. Right now the problem is sleeping too much. I have a brain disease we found out

Oh no, what brain disease?

 

[Tacocat]

I finally received the call to schedule my first IVig infusion!

Tentative yay! Does that mean that you’re back to the hospital for monitoring or are they going to send you home in a rack?
Also did you win the fight with the insurance? Hopefully theyll approve other treatments as well

 

[10 Tanks]

Hello Juice. Good to know you're resting. I rested last night. First time in several days. The CBD oil worked!!! I slept 9 hours last night. I can't remember when I slept that many in one night. It's been years. I'm going back to the store and tell the owner what a good product he sells. I'm cautiously optimistic that this oil will continue to work. My problem is apparently age. I'm 70, so some things don't work as well as they used to. I try to keep fit and take my supplements. But, in spite of my efforts, some things just don't respond as well as quickly as I'd like. I'm getting back to my normal self and am hoping the CBD oil will work long term. You're in my thoughts. Though I don't consider myself a religious person, I will say a prayer for your complete recovery!

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[JuiceBox52]

Tuesday afternoon we learned that I am internally decapitated. My skull is detached (dislocated) from my cervical spine. Im currently in a cervical collar, possibly moving up to a halo vest very soon while we await surgery to realign and fuse my skull back onto my spine.

However, due to my genetic connective tissue disease, I cannot see just any neurosurgeon. There are very few surgeons who regularly do this surgery as it is, and many will not take EDS patients.

After much research done by both my neurologist and ourselves, there are three surgeons who we feel safe and comfortable trusting with this very dangerous procedure, one in Maryland, one in New York, and one in Barcelona, Spain.

All of them have significant waitlists. Spain is looking the most promising, he’s the most highly recommended and people fly worldwide to see him, but it would be an out of pocket cost, not covered by insurance.

This is also (obviously) delaying my much needed abdominal and hip repair surgery In Philadelphia, which sucks as I am in a lot of pain without abdominal muscles attached

Anyway, there’s a lot happening, some very scary things. Prayers are appreciated in making this decision and we hope that doors will open to make it possible to get this repaired as quickly as possible.

It’s a miracle I’m alive and functioning at all, yes I do have some SEVERE symptoms and complications, but the survival rate is low and even lower to maintain functionality, so I’m very grateful I’m still here, and grateful for my amazing neurologist who has never given up on me, even when all the other doctors told me I was crazy, and that nothing was wrong.

this was most likely contributing to some of my symptoms mentioned earlier in the thread

 

[CaptainBarnicles]

Just when I think it couldn't get any worse ...it does. Good grief gal!