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- Mon Jul 28, 2008 10:27 am
26 yo female with
Ehlers-danlos syndrome- many joint subluxations
Postural Orthostasic Tachycardia Syndrome
Low blood sugars
Family History of
I have been tired since the birth of my daughter 6 years ago, I have endured many joint problems and lots of stress due to the EDS diagnoses. I have Migraines all the time. I of course want to sleep all the time, but have trouble actually doing it. I thought wanting to sleep all the time was from stress and maybe a bit of whats going on with me health wise.
I was working nights when it started really, i was sleeping during the day with the shades drawn but i thought what i was experiencing was from the shift in my shedule. Also sleeping while there was light.
I have since been out of that job and on a normal sleeping shedule, I don't not work and go to bed around 10pm and im counting down the mins till i can put my head on the pillow.
Most nights more recently i have been kinda scared about falling asleep, becuase i am unsure of whether or not i am really going to be sleeping. Most nights i am not and im not sure whats going on.
I start to drift off to sleep, suddenly i feel very euphoric, so very overwhelmingly relaxed and happy, while i have this feeling rolling through my body, i am then unalble to move anything and have a difficult time controlling my breathing. I am awake sorta i can see the room but can not move anything. I try and hold my breath to awake myself and it dosent work only for a brief min, then i am trown back into it again but nothings different. I tell myself that its some kind of dream but can break out of it. Apparently my eyes are half open and my boyfriends cue to try to get me out of it are the intense moaning that i am doing, that i feel is me screaming. I am trying to scream for help. I see my room and if my boyfriend gets up to use the bathroom i see him leaving the room and coming back, i am very scared and most nights i do this till 7am. My boyfriend also says that i shiver while doing this, he tries very hard to get me out of this. Like sitting me up, moving me talking to me and most times it wont work.
I am getting more and more tired during the day and don't want a sleeping pill i feel it will make things worse. Plus i have a child to look after that dosent allow for that.
Im not sure whats going on but, i do know that this isnt healthy. I cant help think that is some kind of physchological problem. Im not sure what to do about this.
My doctor is very understanding and i really want to go to him for my new problems as i call it, but don't want another issue added to the list.
Im not on any medications. Im confused because im not sure where this is headed.
Any advice on what this maybe would really help me. Im not even sure if this is a medical health problem, but my body is already suffereing and can not take anymore issues.
| John Kenyon, CNA
- Mon Sep 29, 2008 8:29 pm
What you describe sounds like a combination of two phenomena seen during sleep. The first, sleep-related euphoria, is not well understood, but may actually, in some cases, be a form of seizure activity. This is not harmful, but it appears, in your case, to lead to the other part, which definitely sounds like what is known as sleep paralysis. While this may sound ominous, it's really quite benign, but can also be terribly frightening. One is partially awake but the body hasn't caught up, so one is often aware of surroundings but can't move and may often feel as though breathing is increasingly difficult, until the sufferer wakes up.
The difference here is not only the sleep-associated euphoria that comes before the apparent sleep paralysis, but also the fact that you can't seem to be roused from this state, since sleep paralysis usually is broken by movement on the part of the victim or by any physical disturbance, such as the touch (or at least shaking) by another person. If your boyfriend can't get you out of this state then you're suffering either some sort of actual seizure (partial, nocturnal seizure) or some other hypnogogic disorder that may need to be treated medically (there are medications which can often control these sorts of episodes, whereas "ordinary" sleep paralysis usually becomes more tolerable over time, and sometimes responds to psychotherapy as well). I would bring this to the attention of an internist or, better yet, try to be referred to a neurologist. A sleep study, EEG, and other neurological tests may help isolate the cause and guide the form of therapy (medicine) to get this under control. I can well understand your dreading going to sleep if this is happening all the time. It may, in fact, have some relationship to your low blood sugar problem (which can get quite bizarre at times, and even be dangerous in extreme situations).
I hope this is helpful. Please follow up with as us needed. Best of luck to you.