Tell me your Insomnia cures

[JuiceBox52]

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

Legitimately
I should be dead. 70% of cases die instantly, another 15% die while in the hospital. For The remaining 15%, it’s very rare to remain functional, ie; ability to speak, walk, eat, see

While I am having SEVERE symptoms (due to my head not being attached) such as positional paralysis, blurry vision, pins and needles, uncontrolled movements of my hands and legs, frequent falls, etc etc
It is really amazing that I’m still doing this well, especially considering it’s almost certainly been this way for over a year!

 

[Tacocat]

So did the separation of the spine and skull not affect the brain stem or functions of the spinal cord enough to kill you? I truly wish you the best of luck and anti-death wishes because this is incredibly rough and nobody should be subjected to this much life altering disease on top of dealing with insurance BS. Does this all stack on top of the encephalitis and heart swelling or is it the root cause of some of them? Also I don't mean to pry but how could the possibly not have noticed your spine not being connected to the skull for a year? If you've been having so many hospital visits surely a routine head x-ray would have noticed it.

Anyway good luck I wish you best.

 

[CaptainBarnicles]

You're a walking (kind of) miracle! Honestly, you should be studied

All jokes aside Juice, I hope they get you back in one piece sooner rather than later, I think you've suffered enough

 

[JuiceBox52]

So did the separation of the spine and skull not affect the brain stem or functions of the spinal cord enough to kill you?

Correct! I’m not dead, but I’ve been warned that something like a sneeze or cough could kill me (which sucks cause I have a very sneezy head cold right now)

I truly wish you the best of luck and anti-death wishes because this is incredibly rough and nobody should be subjected to this much life altering disease on top of dealing with insurance BS. Does this all stack on top of the encephalitis and heart swelling or is it the root cause of some of them?

It seems to be the cause of the brain swelling, possibly in addition to autoimmune, possibly the autoimmune is not affecting my brain and is just affecting other things. It’s definitely played into the seizures, memory loss, vision problems and movement disorders! It is even potentially contributing to the heart worsening

Also I don't mean to pry but how could the possibly not have noticed your spine not being connected to the skull for a year? If you've been having so many hospital visits surely a routine head x-ray would have noticed it.

Anyway good luck I wish you best.

I honestly have NO freaking idea. From my research and what my neurologist has told me, it’s often not visible on imaging when lying down, as most CT and MRI are. And while I’ve had over a half dozen scans since then, only the most recent one was upright, my upright MRI, where this was discovered

 

[PheonixKingZ]

why can't you take certain plants?
a very small amount 30 minutes before bed might help you get a bit more sleep. just add some to some food and cook it, then eat.

but you need to chat with your doctor and get a different medication.

i don’t know if this is against forum rules (mods if it is just delete it) but @JuiceBox52 you could try some light form of cannabis, after speaking with your doctor first of course. depending on what state you live in, they might be able to prescribe you with some. if not, you can get some from a smoke shop, just make sure it’s legit stuff not cheap stuff.

(i say this from experience because i used to do it from time to time, sometimes 4-5 times a month. but im happy to say i’ve been weed and nicotine free for over 5 months now)


as far as “natural” remedies go just for me at least, i like white noise when i fall asleep. specifically fans, i have a desk fan by my head and then a tower fan, and those combined makes a good white noise. and if your bedroom has your tanks in it, the noise from the filter is also a good white noise.

i also listen to asmr every night when i fall asleep, i don’t care if some people find it weird or gross it really does help me calm down a lot and it helps me fall to sleep quickly and puts my mind to sleep fast. it’s worth a try, some people hate it, other people love it.

 

[PheonixKingZ]

"The record holder at the time was Robert McDonald, who went 453 hours 40 minutes (18 days 21 hours 40 minutes) without sleeping in 1986. Although we no longer monitor the record due to the inherent dangers associated with sleep deprivation, we can say that no one is known to have broken it since McDonald."

i don’t know if someone else already said this (i don’t have time to read all the comments) but sleep deprivation has (and probably still is) been used as a form of torture for years now. your body naturally needs sleep, and when it doesn’t, some weird things start happening. i think there might be some videos on youtube where people have tried staying up for days, but i know hallucinations happen a lot and they’re very realistic, i also know that people who are extremely deprived of sleep start hearing voices and it’s super creepy.

 

[JuiceBox52]

i don’t know if someone else already said this (i don’t have time to read all the comments) but sleep deprivation has (and probably still is) been used as a form of torture for years now. your body naturally needs sleep, and when it doesn’t, some weird things start happening. i think there might be some videos on youtube where people have tried staying up for days, but i know hallucinations happen a lot and they’re very realistic, i also know that people who are extremely deprived of sleep start hearing voices and it’s super creepy.

Yep. I was 8.5 days without sleep and was definitely hallucinating

 

[TwoTankAmin]

I wish I could tell you about what my fraternity initiation in 1972 involved. But if I did, then I would have to kill everyone on the site

Sorry about that, but I have not slept since last night

If you can do so legally and want to try using cannabis for sleep and have your doctor's OK, you cannot smoke it. It will make you cough sooner or later (sooner most likely). However, there are other ways you can take it.

There are edibles- candies, cookies gummies, drinks etc. These take some time to become effective like any swallowed med can. There are also sublingual tinctures which you can take. Sublingual means, "Placed under the tongue." These work pretty fast.

I live in a State in the US which has legalized marijuana use both medicinally and recreationally. My state shares a border with 5 other states. All have also legalized marijuana use. I am not aware of the what laws on marijuana use in the UK are. So you may not be able to use the above info or to obtain the products legally. I am not suggesting that you break the law if this is the case.

One last note if you can use pot legally and want to do so. There are two basically types of pot, Indica and Sativa. You would want the first type. Do a bit of research on the subject and you can learn all about this. Many strains are a hybrid mix of the two types.

 

[GaryE]

I also live where cannabis products are perfectly legal, and if I wanted to, I could buy it at a provincially run shop. As with any product with medicinal uses (that isn't snake oil), you have to learn about its interactions with the meds you are taking. Prescribing to yourself when you have as many issues as you do can be dangerous. You must have buckets of meds for all these issues. I would expect a rigid diet and not a lot of moving around are in the cards for you too. I wouldn't play with that.

A lot of people experience side effects from weed, with anxiety, paranoia and agitation not being uncommon (hey, I worked in a High School - I have seen surprising things. Edibles sometimes cause really loud vomiting which would not do your spine any good).

Do US hospitals actually send people with these conditions home? That seems so weird to me.

 

[JuiceBox52]

I also live where cannabis products are perfectly legal, and if I wanted to, I could buy it at a provincially run shop. As with any product with medicinal uses (that isn't snake oil), you have to learn about its interactions with the meds you are taking. Prescribing to yourself when you have as many issues as you do can be dangerous. You must have buckets of meds for all these issues. I would expect a rigid diet and not a lot of moving around are in the cards for you too. I wouldn't play with that.

Agreed. I’m not supposed to take pot as it can make my heart condition worse. And I would never take something without thorough research and my doctors thumbs up.

I do have a large amount of meds, more than I’d like. I only take what’s absolutely necessary, if it’s not, I don’t take it. Not worth the side effects. Also yes, rigid diet due to the stomach paralysis and extreme allergies.

A lot of people experience side effects from weed, with anxiety, paranoia and agitation not being uncommon (hey, I worked in a High School - I have seen surprising things. Edibles sometimes cause really loud vomiting which would not do your spine any good).

Definitely wouldn’t want to be throwing up!

Do US hospitals actually send people with these conditions home? That seems so weird to me.

Unfortunately yes they often do. I have soooo many stories lol.

Sent home from the emergency room (I was having seizures) with an ibuprofen (as if that’s going to do anything?) and told to come back if I stop breathing

Was unconscious with a blood pressure of 60/40 and heart rate of 130 and the doctor told my husband I “simply closed my eyes for attention” and sent me home as soon as I woke up

Was stroking with my neck dislocated and was told it was a migraine and to go home and take a Tylenol

My Rectus abdominis (the 6 pack muscles) were totally torn from my pelvis on both sides. I was prevented from taking any sort of pain relief, forced to run on a treadmill for a half hour and then on a bike for another half hour, would get in trouble if I flinched or slowed down, and then I was locked in a room, verbally abused, and told I WANT to be sick and that I’m crazy and need to try hypnosis because nothing is wrong and “it’s impossible to tear those muscles”
Two years later I flew to one of the top surgeons in the world and he was shocked at the severity of my tears and my abdomen was filled with scar tissue where my muscles should have been
(Pain rehab programs are incredibly abusive, there’s a group I’m part of trying to get them shut down, my experience was one of the mildest ones)

And those are just a few examples.

 

[Tacocat]

Sent home from the emergency room (I was having seizures) with an ibuprofen (as if that’s going to do anything?) and told to come back if I stop breathing

Was unconscious with a blood pressure of 60/40 and heart rate of 130 and the doctor told my husband I “simply closed my eyes for attention” and sent me home as soon as I woke up

And they told me to come back if my chest hurt for 6 hours or more... Holy cow.

 

[Naughts]

Agreed. I’m not supposed to take pot as it can make my heart condition worse. And I would never take something without thorough research and my doctors thumbs up.

I do have a large amount of meds, more than I’d like. I only take what’s absolutely necessary, if it’s not, I don’t take it. Not worth the side effects. Also yes, rigid diet due to the stomach paralysis and extreme allergies.

Definitely wouldn’t want to be throwing up!

Unfortunately yes they often do. I have soooo many stories lol.

Sent home from the emergency room (I was having seizures) with an ibuprofen (as if that’s going to do anything?) and told to come back if I stop breathing

Was unconscious with a blood pressure of 60/40 and heart rate of 130 and the doctor told my husband I “simply closed my eyes for attention” and sent me home as soon as I woke up

Was stroking with my neck dislocated and was told it was a migraine and to go home and take a Tylenol

My Rectus abdominis (the 6 pack muscles) were totally torn from my pelvis on both sides. I was prevented from taking any sort of pain relief, forced to run on a treadmill for a half hour and then on a bike for another half hour, would get in trouble if I flinched or slowed down, and then I was locked in a room, verbally abused, and told I WANT to be sick and that I’m crazy and need to try hypnosis because nothing is wrong and “it’s impossible to tear those muscles”
Two years later I flew to one of the top surgeons in the world and he was shocked at the severity of my tears and my abdomen was filled with scar tissue where my muscles should have been
(Pain rehab programs are incredibly abusive, there’s a group I’m part of trying to get them shut down, my experience was one of the mildest ones)

That is so alarming.
In the UK we have a taxpayer funded National Health system which is severely overstretched, and I could possibly see some dismissal of vague, mild symptoms that were not 'quick and easy' to diagnose and treat. But even with the immense resource pressures here I could never imagine them dismissing seizures, strokes or low blood pressure - they are so serious plus very easy to test empirically.
I have never been to the US so don't really understand the system but surely, if the health workers are paid by private insurance or out of pocket payments they would be more likely to take people seriously, not less? What am I missing?

 

[JuiceBox52]

That is so alarming.
In the UK we have a taxpayer funded National Health system which is severely overstretched, and I could possibly see some dismissal of vague, mild symptoms that were not 'quick and easy' to diagnose and treat. But even with the immense resource pressures here I could never imagine them dismissing seizures, strokes or low blood pressure - they are so serious plus very easy to test empirically.
I have never been to the US so don't really understand the system but surely, if the health workers are paid by private insurance or out of pocket payments they would be more likely to take people seriously, not less? What am I missing?

They take people seriously if it’s their first time having an issue, if they don’t commonly require medical attention. If they got in an accident.

If you have anything remotely chronic, or caused by a disease. You’re dismissed. Especially if you’re a woman.

Unfortunately, i have many friends with similar diseases in the UK and Ireland as well. It’s the same there as it is here for them. If it’s chronic or a disease, you’re ignored and sent home

 

[Naughts]

That seems incredibly uncaring .

What's the deal with the pain Rehab - is it a live in facility? Can they really prevent you having pain killers and lock you in? Sounds illegal!
I hope you got to show them the scans of your abdominal scarring to prove they were wrong.

 

[JuiceBox52]

That seems incredibly uncaring .

What's the deal with the pain Rehab - is it a live in facility? Can they really prevent you having pain killers and lock you in? Sounds illegal!
I hope you got to show them the scans of your abdominal scarring to prove they were wrong.

It should be illegal. Unfortunately yes. And they can force you to do dangerous exercises. Some of the abuse that people I’ve met through this group have endured is insane. Nurses grabbing them by the hair, dragging them away from the toilet because “puking means you WANT to be sick”

A 9 year old girl was seizing, the doctor picked her up and dropped her unconscious on the cement floor to “prove she was faking it” -she wasn’t

Forcing children with artery compressions making it that they cannot eat to eat (or drink blended up ham sandwiches)

Forcing a girl to exercise to the point of fainting, as soon as she woke up, forcing her to exercise again without giving her any medical checkup. She later learned that vigorous exercise causes her heart to flatline. But she was told it was an “attention thing”

They cut people cold Turkey off of meds that are extremely dangerous to cut cold Turkey.

Take wheelchairs from paralyzed people.

Leave kids on the floor unconscious. Lock them in rooms. Verbally and physically and even sexually abuse them.

They don’t let parents or guardians watch the “therapy sessions” - I wonder why?


I’m thankful that my experience was one of the milder ones and that my parents saw through the facade and didn’t fall for their program brainwashing. They pulled me out after a week.

The damage was done though. There is definitely still some things I deal with that were caused by the program. They not only caused worsening of my physical health, but some trauma as well. I still have a deep instilled shame of using my cane/walker/wheelchair thanks to them. I still try to push through my pain and try to be normal because I HAD to. It causes more permanent damage every time, but it’s so hard to allow myself to have limits because I was berated for taking breaks. Told I want to be sick, I’m a shame to my family, I don’t want to get better, I’m lazy etc