cut and pasted this from neurology, as got no responses, hope for something helpful here?
I am female early forties with a range of too many health conditions, but have througout my life been affected by sleep paralysis. To remind anyone it is the disorder where prior to going to sleep or waking the body becomes paralyzed, while the mind is fully awake. I do not really halluncinate, only sometimes that I am moving when I am not. The most distressing aspect is the feeling I will stop breathing, ocassionally if my mouth is closed and I am breathing through my nose, and it is blocked, being unable to open my mouth means breathing stops, and eventually this wakes me, but the extended moments of paralyzed airway are terrifying.
I have had this problem for decades, and still every time it happens I think I will die. Finally, I shared it with doctors, and was mostly dismissed. This condition is poorly understood and ignored by most. Now though I have a referral to an epilepsy doctor, who specializes in sleep disorders. I don't know what to make of it, we haven't met yet.
I wonder if he will just dismiss this disorder as everyone does, but then why did he accept the referral? The attacks are often precipitated by an urgent, almost uncontrollable urge to sleep. I fight to stay awake as I know the sleep will not be real or refreshing, just the gateway to an attack.
I do get daytime sleepiness, and can fall asleep in an instant if not stimulated eg. on a bus or train. Surely if this was narcolepsy this would have been identified by now?
I have read a lot on sleep paralysis, a lot of it regrettably nonsense to me, talking of alien abuctions or astral travel or the like, just not my way of thinking. Mostly though it is accepted as a young person's problem, improving with age. The opposite is happening with me, I am getting worse.
Could this alternatively be sleeping epilepsy?
Any suggestions? I just worry this sleep doctor will dismiss me and we won't even get as far as a sleep study, but we haven't met yet. It would be helpful to know what my brain is doing in these episodes. But if I have a study and do not get paralysis what then? It doesn't happen every night. I go through bouts where it is nightly for weeks, then it goes away for a week or so, and then repeats. The length of the paralysis can be very long, 20 minutes once, timed it by hearing my alarm clock and then snapping out of it and seeing the time elapsed.
A medical perspective would be good by anyone with insight.
I'm not a medical professional but I've had the exact same symptoms for nearly 20 years. I don't hallucinate either. It is a terrifying experience to be paralyzed and to not be able to breathe.
I had a sleep study done nearly a year ago and was diagnosed with central and obstructive sleep apnea. Since I started on my CPAP I haven't had one incidence of sleep paralysis. I don't know if apnea and sleep paralysis is linked. But I do know that I am much better. When I described my symptoms to the sleep doctor he mentioned cataplexy as a possibility. I don't have any of the symptoms for that. Even my sleep doctor didn't seem too concerned about the paralysis.
I've read that sleep paralysis is fairly common but no one wants to talk to their doctors about it because they are embarrassed.
Just be open with your MD about this. If he is a sleep specialist he's probably dealt with this before. Good luck and know you're not alone.
For a while I was having episodes of being somewhere between awake and asleep and being unable to move. I have not had an episode of it since beginning cpap treatment for sleep apnea. I think my sleep was so disrupted for so long that my brain was getting quite scrambled. I know this is easier said than done, but please try to not think past what is currently happening. You'll wear yourself out with all the "what ifs" about the new doctor. It is probable that they will order a sleep study. Even if you don't have one of those episodes during the study, if any other sleep disorders are contributing factors, they will be picked up, so it won't be for naught. Be sure to tell the doctor about waking up not breathing.
My son-in-law has occasional episodes of sleep paralysis, but they are not associated with any breathing irregularity. I'm sure yours have to be unsettling. Being referred to a sleep doctor is in my opinion long overdue, so let's hope you are now on the road to finding answers.
It is so hard to respond with this character limit, deleted my other response as couldn't edit it down, so will be brief.
I am so glad to hear I am not alone in this, I really thought I was, could find no-one of my age group with this problem.
There is another worsening I didn't mention. In the past I would just snap out of it eventually, and all would move. Now my body regains movement gradually, parts can move not others, eg legs but not arms. Coming out of the paralysis is a long drawn out thing, not a sudden snapping back to consciousness. This is a recent development, over the last few months.
This makes no sense, surely once the paralyzing hormone, or whatever it is, goes, the whole body should move?
I agree this has gone on for far to long without intervention. But then I was ashamed to tell anyone, and the first time I did to an elderly neurologist he dismissed me, he dismissed all my problems.
The sleep consultant I am seeing is a professor, if I see him personally. I hope he orders a sleep study. If so I may even spend the night before awake, to add to the chances of a paralysis episode, happens more when I'm tired. I hope I get an episode while they are monitoring me. Right now it has been over a week without one, so they should be back soon. Only those of us who have this know the horror of the condition. And we can't not sleep, but I am scared to fall asleep in case I become aware on the way, and scared of waking up in this hell.
Apologies to those who believe in alien abduction and astral travel, it is not my way of interpreting this. You may be right, but I am scientifically and medically trained and think a certain way. I am so pleased those who repsonded are supporting me here. It means a lot.
Curt you are the only person who understands exactly, and that is wonderful for my uncertainty.
Please though, you both talk about cpap - I will look it up but could you explain.
CPAP = Continuous Positive Airway Pressure. It is the machine used by patients with sleep apnea to keep the airway open by continually blowing air thru a mask. Sleep apnea is generally either obstructive or central. Obstructive is when the airway tissues relax and block the airway. Central is neurological and involves the brain not sending proper signals to breathe. Obstructive is most common. A sleep study would detect either. Having sleep apnea often causes drops in oxygen, which can affect the brain and the heart. Stopping these episodes gives the body the opportunity to sleep well with proper oxygenation.
You may not have sleep apnea, but there are many other sleep disorders. Only a sleep study will tell you if you have something that needs treated. Unfortunately, people with sleep disorders have long been misunderstood, even within the medical community. Times are changing, and it is more understood how important good sleep is to one's physical and mental health. Sleep paralysis alone would not be necessarily alarming (except to the one doing it of course) as it is generally considered benign, but your account of breathing difficulties should make a doctor sit up and take notice. Please come back and post after you have a sleep study and let us know how it turned out.
Wishforchange, KatEyes is correct with the CPAP information. Hopefully, the doctor will order a sleep study and you'll get some answers.
My sleep paralysis was very much like you describe. It took a long time to completely come out of it. There were some nights that I thought I was going to suffocate because it took so long for me to breathe. I even would think that if I wanted to die, I didn't have to try to come out of the paralysis.
In 1989, I spoke with a Navy flight surgeon about my condition and he said it was probably sleep apnea. However, he wanted to send me to a psychiatrist if I pursued medical attention. I definately did not want to speak with a psychiatrist and I let the matter die. I know for nearly 19 years that I had apnea and sleep paralysis but was afraid to telll anyone.
Finally, totally exhausted and depressed, I went to see a shrink and within a session of two she started asking me about my sleep. I told her that I probably had apnea. She knew a lot about apnea because she suffers from it also. She said that apnea causes fatigue and depression. She ordered a sleep study and it confirmed the apnea. I am now on CPAP and haven't had a sleep paralysis event since. I am still exhausted and depressed and I'm looking at other causes.
Good luck with the sleep specialist and please write me if you have any other questions.
I'm no sleep prof either but i'm a long time diagnosed narcoleptic/sleep apnea patient. I wonder if you've seen your sleep doc yet... i wanted to know if either of you mentioned trying a cpap machine... I'm 52 yrs. old and was diagnosed with narcolepsy 15 yrs ago, I've had symptoms since age 8. Two years ago I told my sleep doc that it felt like I was startling myself awake in order to get a breath...like while I was sleeping it felt like i just couldn't get a good breathing pattern and i'd wake up feeling like I'd been suffocating...when it first started, my husband thought I was dreaming and crying in my sleep because of the sounds i'd make trying to breathe while I was sleeping. So my sleep doc put me on a cpap machine...i fought it tooth and nail...it's this thing that goes up your nose or a mask that covers half my face and resembles darth vador! Add the six foot hose coming out the middle of the mask, making me look like elephant girl~ my attitude was, nope, ain't gonna happen. I wear it an hour, wake up, take it off...it just annoyed me so much...i went back and my sleep doc emphasized the importance and showed me the study results of how many times i stopped breathing in a 15 minute span...i went home, put it on and tried my best. I wore it longer and longer each night and got used to having the mask and hose to deal with...now, when i fall asleep without it on (by accident) there is a significant difference in how much 'rest' I get when I sleep. I wake feeling far more rested when I wear that stupid mask! LOL And I don't wake myself up trying to get air anymore, I don't wake up at all during the night usually. The inability to get air while sleeping was making my narcoleptic symptoms even worse. I used to toss and turn and wake several times during the night..now, i put that mask on and i'm down for the count! I wanted to share my story with you because it's entirely possible the cpap would work for you too! So, anyway I hope you keep us posted. Good Luck!
Thanks for ideas. Saw sleep doc. Initially my symptoms were dismissed, as it was only sleep paralysis. But then they changed their mind and wanted to keep me in all day to assess the daytime sleepiness. Then changed mind again and decided actually they wanted to keep me in all night and all day, with an EMG to see what my muscles were doing, so am waiting now for the full sleep study. Will let you know what happens!
Just left a message with my consultant, and may phone them later, I forgot an important symptom, catalepsy. Only occurs in one embarrasing situation, and happens so rarely now all but forgot about it - occurs when I am about to, how do I put this, seriously enjoy myself with a very close friend, ladies you know what I mean. The fact I haven't had this for years is a sad indictment on the company I'm keeping :(. But thought it was an important symptom for them to know, as I was definite I in the consultation that I had no symptoms of weakness or sudden urges to sleep when strongly emotional, but actually I do, in just the one situation. That would be nice to get sorted, and would be nice to be in a position where it needed to be sorted ;0
Any thoughts on this. And yes the CPAP thing sounds horrible. Hope hope hope hope hope I don't need it, but if I do, what can I do? Need to breathe.
Haven't been paralyzed for weeks now, sometimes this happens, it stops for a relatively long while, entirely unpredictable. I hope I get an episode in the study, may force the issue a bit by making sure I'm very tired that night. Just want my brain and body to be monitored during an episode, so anything which helps bring one on I'll try. Problem is I've never really worked out what brings them on, otherwise I would have just sorted the problem myself.
And the daytime sleepiness is getting out of control now. But I live in a country where it is very hard to be taken seriously over anything, we are not the leading light in medicine. Wondering about this experiment - Hospital room, wired up, strange surroundings, anxiety? This could well interfere with the daytime sleepiness, some interfering variables in the scientific premise here - am originally a scientist by training. If it doesn't, then the problem is more serious than I thought. Just waiting for the appointment date - have a follow up in a few months so it must be before then.
Thanks for your support.
I have only today looked sleep paralysis up -in fact I found it by accident and thought - hey - that's what I get!!
It is such a relief to think that I'm not crazy as no one I've ever mentioned it to has a clue what I mean! (i have told maybe 3 people ever!).
I too went to see a neurologist nearly 20 years ago but nothing was made of it - think I had an EEG - and I shut up and put up!
I always knew I would come out of it as I am still here but that does not reduce the gripping fear when it happens that maybe this time I won't get my breathing back.
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