4 replies to this topic

[Karen_from_Kansas]

Hello All,

I know you are not doctors, but I want the opinions of "those who have been there." So, here goes...

I have had EDS since my teens. (I am now 40.) It's become a quality of life issue. I wanted your opinions on my "symptoms." My doc thinks maybe mild narcolepsy, but I don't have the hallucinations, paralysis, etc. So, what do you think?

* Even after 8 hours of sleep,I can (and want to) take multiple naps in a day and will fall asleep within 5 minutes each time. I wake up feeling a LOT better each time.
* I often wake up tired and wanting to go back to bed all day. Often, my strongest desire all day is to go back to sleep.
* I don't have paralysis, but sometimes my body feels so heavy, I can barely stay seated. I just want to lie down. I feel a heavinesseverywhere, esp. in my upper arms. Often after eating, this is most pronounced.
* I am strong willed, so I can make myself get up in the AM, but it is so difficult that it is almost nauseating to do it at times.
* At night, I usually fall asleep within 30 seconds, I'm guessing.
* I rarely, rarely have insomnia - only with PMS for a night or two and then when I am super excited about getting something done or going somewhere the next day.
* Start dreaming almost immediately at times. If my hubby wakes me, I can tell him about the dream I am having. (Immediate REM sleep?)
* Excessive dreams. I kept a dream journal this year and could usually remember 3 or more dreams every morning.
* Have struggled with depression, but it is well managed by Prozac now.
* I am not shy, but teaching and being in social situations wear me out at an accelerated rate.
* Digestive system is slooooow too. And my heartrate is slow - 60 bpm.
* My muscles seem to get very achy and spasmy the more tired I get, and sleeping helps them relax and get me back on my way. I seem to have a lot of muscle inflammation relieved by sleep.
* I never fall asleep unexpectedly, but I can sleep in public places (theaters), on floors, just about anywhere.

* AND, I am extremely healthy. I exercise daily. I eat well, I am at a great weight. My blood tests all look stellar, says doc. No reason to be so tired all the time. I thought it might be allergies, but since then I have had allergy shots and have no other symptoms.

Doc gave me a script for Provigil have yet to fill. I can also have a sleep study if I want. I had one about 15 years ago, which showed no apnea or other problems. I know the study can be definitive, but don't want to mess with it if this seems narcolepsy probability is strong enough from the above data. Maybe just try the meds and see what happens?

THANKS, THANKS, THANKS for helping me with this huge quality of life issue!

Yours, Karen From Kansas

[kristin]

Hi Karen,

I almost could have written your post myself. I dont have much time to respond at the moment but what you are describing sure seems like N to me. The onselt is typically gradual from what I understand and although I often fall asleep up to 50 times a day without my Provigil, there was a time I didnt fall asleep at all unless I let myself. (I am pretty strong willed also) At any rate, I do relate to almost all you wrote. I will add more later but I also do not have cataplexy, hallucinations, etc. and yet my Dr (only 3 weeks ago) diagnosed me with one of the worst cases of N they have ever seen at the clinic where I did my study. I fell asleep in an average of 32 seconds (during the 5 naps tested) and I did go into REM sleep almost every time within a very short period of time. It sounds like you might have an opportunity to be tested and get a diagnosis before you get to the point where this causes you great risk regarding your driving, etc. I would strongly suggest going through with the sleep study and trying the Provigil. However, you will have to be off of the Provigil for a period of time before the study so that it doesnt scu the results. I have been on Provigil for a couple of years and it has helped a fair amount. Unfortunatly I am on the max dose and still fall asleep too easily (I slept through a root canal yesterday... that was a bonus). I just started Xyrem in addition to the Provigil and it is already helping alot after only a few nights. Sorry to ramble on and... please take all I said with a grain of salt, I only am speaking about my experience, I am by no means a Dr! At any rate, all this is to say, I could go line through line re: your post and share how I relate to 95% of what you said. I will spare everyone but it sure sounds like the begining of what I now know is N for me.

Best of luck. Feel free to keep in touch if you want. kristinnanderson@gmail.com

Kristin

[Lais02]

I agree with Kristin. I can also relate to much of what you said. I would definitely do the sleep and nap study before taking the Provigil though. I'm actually surprised you were prescribed it without having those already. I also take Provigil and it does make a huge difference for me.

Good luck!

[Damian]

I can only give my views as I have N and C, sleep paralysis and suffered vivid dreams.As for sleep studys my MSLT was strongly positive with going sleep in 1 minute and REM JUST AS QUICK, but I was already on modafinil/provigil when I had my test and I was on the maximum dose of 400 mg.
Mine is not currently controlled. I have also undergone a video PSG for sleep apnea as well as a second MSLT.
No sleep apnea, but if you ain't overweight like you say your healthy.
do you snor loudly?
I do know of another N who thought prozac added and made them worse on EDS.
Don't know if any of this helps.

[Damian]

Reading throughn your article again it does sound like your weak spells aren't N there cataplexy is one of its forms. the heavyness not being able to hold body in seating position etc.