Sleep Paralysis with muscle tone
Posted 26 March 2008 - 03:29 PM
I was diagnosed 9 years ago with Narcolepsy with Sleep Paralysis. Recently the medication stopped working, and I had another sleep study done (overnight,with daytimeMSLT). The specialist concluded that since I have muscle tone during these paralytic attacks, that it is not Narcolepsy. Has anyone else had this? What advice do you have now? I have been unable to work since July 2007, and the symptoms are worsening. I now have these attacks lasting up to 3 hours!
Any advise you could give me would be helpful.
Posted 30 March 2008 - 05:32 PM
Since the tests and your Doc were able to tell you what it isn't, could they help tell you what it might be?
Sometimes I think the doctors like to put the symptoms in nice and tidy boxes...I don't know if it works that way.
If you don't have a loss of muscle tone, what are your attacks like?
I'd think about a second opinion. Narcolepsy or not, sounds like something is up and you should get help on the quest to find what it is. I think it's great if your sleep specialist can rule out "N"...it would seem like he should help figure out what it is (as well as what it isn't)...
It's hard to imagine a medical professional looking at your situation and just saying, "Wierd. Yeah. Sorry, Dude...I don't know WHAT that is. Good luck with all that!" (don't get me wrong...I've seen doctors do this)
Ask the sleep doctor to refer someone who WOULD know what is up. Looks like you're going to have to be pro-active on this one. Don't settle for not knowing!
Keep us up to date on the situation!
Posted 31 March 2008 - 01:00 PM
My attacks almost always happen upon waking,usually because of a noise I hear. I wake up,my eyes are open,but I can't move. I am usually in some terribly uncomfortable position which hurts. I have what I call 'manequin hands',(my hands are stuck in a postion you only see on store dummies.) My mouth is open,my tongue stuck to the roof of my mouth, and my throat so dry I can't swallow. Sometimes I can even hear myself snoring,even though I'm conscious!
These attacks last from 15mins. up to 3 hours. Sometimes my neck is in a postion which makes it hard to breathe.
I have had daytime attacks too,usually precipitated by excessive yawning. I even had one in the bathtub while I was alone in the house. I wouldn't wish that on my worst enemy!
The sleep specialist told me that there is definately something going on in my brain causing this, referred me to a Psychiatrist, and didn't want to discuss it anymore.
I have enlisted the help of a Health Advocate who is trying to find information in my area. I am constantly online trying to find out if anyone out there wants to use me as a guinea pig - no bites yet! I have seen an Infectious Diseases Specialist, an Internal Medicine Specialist, had a CT scan, Epilepsy testing,Heart Testing,etc.,etc. I'm getting tired just thinking about it. I believe it is hormonally related,because the medication stopped working about the same time as my PeriMenopausal symptoms began. My Gyn just shrugs his shoulders - not in his area of expertise.
I appreciate your response.It helps to know that SOMEONE is listening.
Posted 31 March 2008 - 01:34 PM
If what you're telling me is correct, it might be worth it to find (request/demand) someone with enough skills as a sleep specialist to help you out. Your health is more important than worrying about leaving footprints on someone else's head by going over them.
Didn't want to discuss it anymore? As my daughter would type in her MySpace..."WTF?"
If you suspect a type of hormonal shift that is triggering it, an endocrinologist would be good to talk to. She/he must be made well aware of your narcoleptic history, and partner with your (new) sleep specialist.
There seems to be a cult of doctors that either likes to cure you and bath in glory, or pass you on down the line when presented with something more of a challenge. More doctors should realize that sometimes they may have to play nice with other doctors (with other specialties) to get he best results. They seem to get blinders put on, not realizing that we all are humans with conditions, and not just patients with a diagnosis that they may (or may not) be able to help.
Keep us updated!
Love and Prayers!
Posted 31 March 2008 - 02:29 PM
I wish I had some advice for you...that sounds really scary. I don't have any idea what is going on there, but I just wanted to give you some encouragement. Don't give up...keep searching for an explanation...I know it gets hard when Doctors start "passing the buck" and don't really want to take the time to search a little deeper, but keep trying and eventually you will find one who listens. (I'm telling myself this too ) Until then, we will be here to listen!! --lisa
Posted 10 April 2008 - 01:59 PM
I hate sleep paralysis, more than anything! You said your medicine stopped working, may I ask what that was?
I've had narcolepsy all my life but also have a co-condition now of fibromyalgia ~ so I can't take daytime stimulants anymore because they (even provigil) aggrivate the fibro symptoms. A month ago I switched from Ambien to Ambien CR, and it helps me get into deeper stages of sleep and stay there longer. Since I've started it I haven't experienced any sleep paralysis (knock on wood!) I'm pretty sure that my sleep paralysis happens mostly when I am 'over-tired" so deeper sleep has helped.
There's a chance your sleep study turned out abnormal -- for you. Besides the slightest possibility of their instruments being calibrated improperly, have you ever looked into related conditions of the neuroimmune system, such as CFS/ME (Chronic Fatigue and Myalgic Encephalomyelitis) and fibromyalgia? Sleep studies are always performed in a pretty controlled environment. If a person has a condition like CFS or fibro, they need to be a bit more stressed to register as abnormal sometimes. I read that the average stress-test on a fibro patient comes out great the first time, but if a second one is done directly after that, they fail, and fail BIG time. All the trouble is in the POST-stress response system in the brain.
I'm with the other posters who suggest you get a second opinion if you can. And I know what it's like to comb the internet for little crumbs of information and hope all the time. Hang in there, you'll figure it out!
Blessings to you and all of the nice posters here,
Posted 10 April 2008 - 09:51 PM
As for the sleep paralysis, that is very similar to what I experience. I get "stuck" and can't move. However, I'm not completely without muscle tone as I can move my hands and feet a little, enough to grab my glasses sometimes, but otherwise I can't move. Unfortunately, the only other person in my house who understands this is my mom, the others just can't understand. Too many people can't conceive such paralysis. Even with meds it's a good 10-15 minutes before I can move, no matter how awake I am by then. However, I seem to feel like it is less severe when I have had scarce sleep (<4 hours) but I don't go for low amounts of sleep often, and never by choice (insomnia sucks...). Also, my throat is very dry and I cannot swallow _anything_ for at least 30 minutes after getting up and even then I have to take my meds with a bite of food or a very thick drink. Lastly, I am a nose breather but cannot breath without my mouth slightly open, thus I sleep with my mouth open which may contribute to the dryness, since you mentioned your mouth is open, are you near the same way?
Posted 30 October 2008 - 11:53 PM
by this, I mean more often upon waking and falling asleep. Th el lenght of them lasting longer feels like they get harder to try to move which someimes makes me panic a bit, especially if my heads on a pillow sideway's always try to sleep on back or han under my face so if I do awake in a paralysis then no panic of trying to breath