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UpLate 12-25-2017 11:22 AM

Sleep disorder or...?
I've had sleep problems my whole life with day/night reversal, sleep walking, night terrors, sleep paralysis, and teeth grinding including chipping and splitting teeth (I spat out all the mouthguards my dentists made for me), nothing my parents did worked including punishment or incentives, they gave up in the end and dosed me with valium throughout most of my primary school years so they could get some sleep until truancy took over in highschool, I literally cannot get out of bed at that time, I never grew out of it and today if I have to do something during the day I stay awake to go to it or it doesn't happen.
During the day I sleep through multiple alarms, the phone, knocks on the door, yelling, being physically dragged out of bed and put under a cold shower has limited success but at some point not much later in the day I'm out again, if not falling asleep then passing out or collapsing to the ground because my body went limp for no reason. I get very drowsy and my hands don't work.

I have no diagnosis and have had no treatment beyond sleep hygiene and sedatives which have done nothing other than frustate me, Drs don't understand I don't function during the day and I get extremely unwell if I'm sleep deprived, when kept awake to force a routine I don't sleep at all for days on end till I eventually fall back into sleep during the day and I have lost consciousness without warning during the day including while driving (resulted in an accident and I am scared to drive now). Its debilitating, it caused me to drop out of school and I'm unemployable for anything other than shift work or self employment (my father is the same), I've never been able to hold a day job or finish daytime study.

What's brought this to a head recently is I'm developing new problems, I've been told I have migraines but the headache part has gone after seeing a chiro leaving me with the other symptoms (silent migraine) such as nausea that can last for days, vision and perceptual difficulties with temporary blindness lasting 20min or so, and alarmingly terrifying and painful stroke like episodes that take weeks to recover from.

The last I lost my sense of taste and temprature for two weeks and most of my accessable memory which is still returning, the pain never went away and my tollerance for cold (which I experience as pain, while heat is euphoric) has not improved either and I've developed hypergraphic tendancies which are driving me and everyone I interact with on paper nuts.
When I got to the dr I couldn't even sign my name, he tested me for stroke and MS but nothing, apparently people get sudden onset "fibromyalgia" *eyeroll*.

Since then I've been getting weird episodes in the evening where I get really cold shaking and I'm overtaken by back/leg pain and such profound exhaustion I need to lay down in a quiet room asap, my eyelids droop like I haven't slept in days, when I try to talk my speech slurs, my vision constricts and my body feels like lead, I feel like I'm on the verge of collapse, I'm scared to go out in the evening because I don't have any family or friends to come with me who can get me home and I'm worried people with think I'm intoxicated or mad if they see me in that state.

This is happening nearly every day now, I've been tested for autoimmune and cardiac thinking the pain and exhastion was from that, again nothing. An eye specialist checked my eyes, nothing (it's in my brain, I tried covering each eye during an episode of oncoming blindness where it looked like ine eye went first and the vision was the same in both eyes).
A lot of the symptoms I had in primary school are also returning, deja vu, faux premonition dreams, I used to get clusters of them several times a day going on for minutes at a time and it's heading that way again, the sleep paralysis and false awakenings have started again and I'm waking in pain feeling like I've been hit by a truck, sometimes my neck and jaw is tight, other times my chest feels like Ive been crushed, most days my back is a wreck, I even bought a new matress and pillows, no difference, sometimes I'm drenched in sweat moments after falling asleep and this will go on all night (tested for lukemia, diabetes and hormonal, again normal), I'm more tired than when I went to bed and when I go to get up my legs don't work for several minutes, my memory is shot and my life is in the toilet.
I'm worried I might be having seizures but with no one around to witness them how would I know? I do know I'm especially sensitive to flurecent lighting and migraineous patterns which trigger weird feelings like distances suddenly getting further away, lost co ordination, loss of depth perception and feeling like my stomach has just dropped.

I see my dr this week but I have no idea what to say to him, I've been sent to so many specialists who haven't turned up anything so I sound like a complete hypochondriac and I have been accused of as much (and worse) by some if them but this has trashed my life, I'm barely functional and I'm despetate for answers, my life has disintergrated to such an extent Im not even sure if it got sorted if there would be anything left of my life to save, I've lost everything now.
What am I going to say to him? I'm terrified I'll end up with a psych diagnosis for something that is clearly physical (unless they're diagnosing pre schoolers as mentally ill now since that's when I first recall it happening, also they tried those drugs already, I got much much worse on all of them with only the valpro showing any positive impact, pity the side effects made me seriously obese, trashed my metabolism so now I cant eat like a normal person anymore and most of my hair fell out in clumps leving me looking like hell, not sonething your average woman of reproductive age can live with and I'm still struggling with my weight now).

I know something is very wrong but can't get to the bottom of it, I have my suspicions but don't want to throw the doc off his diagnostic process by straight out asking him if I have narcolepsy or teporal lobe epilepsy. What am I going to say to him?

Snoopy 12-31-2017 11:21 PM

Hello UpLate,

I would suggest having a sleep study.

kiwi33 01-02-2018 12:56 AM

Hi UpLate

Welcome to NeuroTalk :).

You wrote "I have my suspicions but don't want to throw the doc off his diagnostic process by straight out asking him if I have narcolepsy or temporal lobe epilepsy".

I think that it would be a good idea if you talked directly with your doctor about these possibilities. They could help him and you with diagnosis.

Best wishes.

perfectlypeg 05-09-2022 10:52 PM

I cannot offer you any wisdom because my experiences have been along similar lines. I've been ill and isolated for 22 years. DX with narcolepsy I was beginning to get a handle on my nights and days around 2018 when for some odd reason, doctors now are tightening up the script pipeline and don't want to take me as a patient anymore. My sleep issues have ruined my health because I don't get enough deep sleep to restore my organs. I'm just biding my time until my time is up. You sound too young to give up, so I will lift you in good thoughts and hope. I must have been so foolish to believe in medicine to care.

Atticus 05-10-2022 05:25 AM

Toolkit for Sleep - Huberman Lab

I wonder if this will help you.

Best wishes,


caroline2 05-10-2022 03:34 PM

Here is my whole thread on Elusive Sleep:

That Elusive Sleep

See Item 17 for the 2 supplements I added in 2019 that get me back to sleep after bathroom trips.

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