Am shocked by the lack of information on sleep paralysis

[wishforchange]

Currently I am wide awake in the early hours of the morning, so what better to do then check the sleep disorders forum which I haven't visited before!  I am in my forties, female, and a nearly lifelong sufferer of sleep paralysis.  So many times I have tried to research the problem online, and the general ignorance, lack of interest and false conceptions of this actually quite common condition is disturbing.  What annoys me most is when it is connected to anxiety, mental states, youth, etc.  I have endured this problem for decades, and it is worsening as I get older.  I have a range of gradually increasing other neurological problems, and for the first time in many years am being assessed properly by a neurologist.  Regarding my sleep, I am being referred on to have my brain monitored overnight, but given the lack of knowledge of this condition, am skeptical as to any potential findings.  Why is this so poorly understood amongst medical scientists?  For sufferers the experience can range from the terrifying to even life threatening on rare ocassions.  People wonder if they are insane, posessed by spirits, abducted by aliens, imagining the whole thing.  Sudden Adult Death Syndrome has I believe been connected on ocassion to sleep paralysis, maybe from the sheer panic involved and the partial or even complete paralysis of the muscles involved in breathing.  I have struggled secretly with this all my adult life, and only recently as it got so much worse brought it to the attention of my doctors.  I do believe had I told them about it years ago they would have dismissed me as neurotic or something.  WHY is this condition so poorly researched?  Any doctor who reads this, maybe you have an answer.  I will certainly have these questions to ask when I am sent for my sleep study.  I just wonder, had I brought these symptoms to the attention of a doctor years ago, and they understood them, whether a much earlier understanding of my now relatively severe other neurological problems could have been predicted, and I would not be in the state I am in now.  Who knows?  It just seems to me an important symptom which medics time and again overlook.  Any thoughts?

[wishforchange]

Well a doctor answered and agreed that this needs more research.  It's a start.  Scarlet37 it seems you understand what this experience means.  I have sometimes wondered about narcolepsy, as I can fall asleep very rapidly on buses etc.  Currently I take a lot of pain medication, and blame it on that, but the reality is I've always had a tendency to drop off to sleep if my environment becomes too unstimulating.  I went through a stage of some years where the paralysis was rare, and now it has returned so severely I broke my silence and told the neurologist I was seeing.  Every episode has me convinced I will never move again, or die from suffocation.  No technique gets me out of the state, I can freely step in and out of lucid dreams in the state and use these dreams to try to scare myslef awake eg. bashing myself hard - I actually physically feel the impact and pain.  Then when the dream doesn't work and I am still going seconds at a time choking for air I stop the dream and just lie there waiting and willing it all to end.  Often prior to an attack I will get a sudden and almost desperate sleepiness, not like normal tiredness.  I know it will lead to an attack but the urge to sleep is overwhelming.  I don't know, maybe it is a mild sort of narcolepsy.  Seems my nervous system is generally going bonkers over recent years.  Finally have a neurologist who is taking me seriously.  I still have the thought in my mind that so many of my problems indicate some systemic autoimmune problem, but the blood tests always come up negative for the relevant antibodies.  So many things are deteriorating all at once now, including the sleep problem.  I'm only in my early forties and was a fitness fanatic before.  Now I hobble around with a walking stick and a stack of morphine to get me through the day.  I just don't see how the sleep disorder can be unrelated.  Just moaning.  I know what a horrible condition narcolepsy is, and I am sorry you have it.  I hope you have it under control.  Seems my latest problem this week is insomnia, this is the third night in a row I've been up all night.  Starting work again in a matter of months, if I am fit, need to learn to go to bed at normal times!  Keep well.  Please let me know if you hear of any great new research.  Have kind of given up looking personally.

[scarlet37]

Xyrem is NOT commonly prescribed for sleep paralysis alone. It is mostly prescribed for Idiopathic hypersomnia and Narcolepsy. It is considered a drug so the diagnosis must be precise.

Information on sleep paralysis can be found on slep disorder websites such as talk about sleep. I have Narcolepsy and SP is a common factor that I deal with. Sleep Paralysis happens when the brain is kinda disconnected in the order of sleep. Our brain is awake but it puts our body in dream sleep and paralyzes us- once the brain copes with the dysfunction and recconects the proper wires the SP dissapates.

Because SP is quite common amoung people with anxiety, depression and  chronic stress and the fact many docs aren't up to date on the severity of sleep disorders we are commonly misdiagnosed as bipolar, schizo, etc.

Hang in there- i know how upsetting and frustrating SP can be - mine is always much worse when I have an infection somewhere even poison ivy can make it worse.

Best Wishes -

I am not a doctor - i'm just another patient

[DrNoopurMD]

Hi,

Yes you are right when you say it has not been researched as much as it should have been. Maybe because every culture had its own interpretation of this problem like possessed by evil spirits etc and it took a lot of time to really understand that this is actually a medical condition. Please be assured that now there are treatments available for sleep paralysis even severe cases. Medications like Xyrem have demonstrated beneficial effects.