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Suspected Narcolepsy and Cataplexy, To Go Along With Restless Legs & Fibromyalgia

by Theresa
(St. Petersburg, FL)

I am a 22 year old female named Theresa. I have had sleep problems for as long as I can remember. As a baby my parents said if they moved a blanket or maybe even just walked across the room I would wake up. From the ages of 2 through elementary school I had night terrors. In these episodes I would thrash and scream. No one could wake me up or console me. I ended up kicking my parents more than once and eventually had to take all the photos off the wall because I was kicking them off.

My pediatrician had my parents give me benadryl which didn't really seem to help much. I wouldn't remember these night terrors except for a feeling of dread. I also sleepwalked as a child. I would go into my parents' room and mumble something and then go back into my bed.

In middle school I kept getting tested for mono because I was so tired all the time. I couldn't really make it through school classes. The mono test always came back negative. Until looking back I didn't even realize that is when my sugar addiction began. I began using sugar to stay awake. I always had candy in my purse...pixie sticks, smarties, etc. If I went without food or sugar more specifically for too long I would crash and fall asleep. Even using sugar I would come home from school, eat dinner, and go to sleep.

I have a pretty complicated medical history. I have an Intestinal Bowel Disease called Crohn's disease which I had to have part of my intestines taken out for, I have fibromyalgia, have had ovarian cysts kidney stone and have a ferritin deficiency. The ferritin deficiency is part of what I am told is causing the restless legs problem. My current integrative doctor told me that if your ferritin is under 50 it can't technically be diagnosed as restless legs it has to be a symptom of ferritin deficiency. I get an
iron infusion and my numbers are back down in the 20s in a month. I've had the restless legs since middle school.

I have the following current problems: trouble getting to sleep and trouble staying asleep. I wake many times and often wake up with bruises from kicking and moving around. I feel like I have nightmares every night of my life. Sometimes I can remember snatches, other times just an intense feeling of dread. I have been told by family members that I sometimes sit up in bed and mumble something unintelligible and then go back to sleep. Other times my mom thought I was awake and had a full conversation with me where she asked me to do something the next day and I don't remember the conversation at all.

Sometimes I'll have where I feel like I had a nightmare and feel like I am screaming, but when I finally actually wake up I was only screaming in my head. I sometimes have dreams where I am frozen in place, but I am not sure if they are actually dreams or if they happen during those times I wake up during the night. Other times I actually am screaming out in my sleep and I won't remember it in the morning.

I have tried so many medications for sleep. I have been on the following: Benadryl, hydrocodone (a treatment for restless legs but also helps fibro pain some), trazodone 300 mg, mirapex, mirtazipine, lorazepam, and zanaflex (actually using this for a migraine preventative). Obviouslly I haven't used all of these at once but I have tried them at one point or another. I am also on cymbalta for the fibro and I remember reading something about narcolepsy and SSRI drugs, but I don't remember what. I have taken prednisone for teh Crohn's in the past, but haven't been on it for more than 8 months.

I am a very driven person who loves to learn, but the fatigue and mental fog are making it very difficult to be
in school. I can't survive a 3 hour lecture class (it is the only section of this class available this semester and it is pre-req for all my other classes as I already have my AA degree - I am going to school for engineering.). Just this morning I couldn't remember the word "couch." I just kept pointing at it and going that thing. I mix up words in sentences often. I have problems with daily headaches and everytime they put me on a migraine preventative it works for a while and then the frequency increases yet again.

I am very happy with my new integrative doctor that has made quite a few diagnoses this week. I am progesterone deficient. My blood tests showed that I had an undectable amount on day 21 of my cycle. This is not normal at all and progesterone is what helps make cortisol and also helps with the process of getting you to sleep. He confirmed the fibro, dx'd estrogen dominance,etc. The one strange thing he said was that he thinks I might have narcolepsy with cataplexy.

I often have trouble seeing my symptoms from an outward perspective. Others tell me I've done things I don't really remember or I don't remember what others have said. I have trouble getting to sleep so at first I was skeptical about this idea. But then I thought maybe that is because I am possibly getting microsleeps during the day when I don't realize it plus the progesterone isn't allowing me to get into that sleep that is normal of the condition. (I dislike being complicated...)

I answered very high on a survey for narcolepsy and cataplexy except for the one question he said that mattered which was do you have sudden muscle weakness with strong emotion. Let me preface this by saying I am a highly emotional person. I am high stress and though in science I tend to think with my intelligence the rest of me is often ruled by emotions. I answered never to this question. Well it wasn't until he explained the question and I really thought about it, how wrong I really was. I have fibromyalgia and often pain is overwhelming and I tend to shrug off things I don't think matter as much or as everyone with fibromyalgia knows it is deceptively easy to chalk it up to "just another symptom of fibro." So I come to find out it is not normal to just have your knees go out from under you and get weak ocassionally? I mean I am in pain; I thought I was just tired from the pain. It isn't normal for your arms to just go weak when you are trying to get your hair in a ponytail? (This would be frustrating for me if my hair wasn't cooperating that day and I had to try multiple times).

I have a sleep study scheduled for tonight and a MSLT for tomorrow. Now I have had many a sleep study. The problem is that they don't normally show the problem! I feel like a large part of me knows I am hooked up to a bunch of wires and I don't want to knock the box off the bed. I have never had an MSLT so that will be something new. I am hoping that this study will show the problem. I am so tired of being tired.

Maybe I could deal with the fibro pain more if I wasn't constantly exhausted. The sleep problem came way before the fibromyalgia. I am hoping too that if this is the answer that medications to help with sleep will eventually help with my eyes. I have problems with blurred vision that comes and goes. It can be especially bad in the morning. And my eyes constantly feel gritty like sand is in them but doctors say I don't have dry eye. Maybe if I wasn't so tired it wouldn't feel like an effort to blink.

Anyways, anyone's thoughts would be extremely welcome. Restorative sleep is my wish for all!

Comments for Suspected Narcolepsy and Cataplexy, To Go Along With Restless Legs & Fibromyalgia

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Feb 01, 2015
Cataplexy NEW
by: Anonymous

you may not be having the cataplexy because all the other medications you are on. When I fIrst discovered I had narcolepsy w/ cataplexy my doctors prescribed Ritalin and An antidepressant. It worked for the cataplexies for a while, but then they Came back. Now I'm on Xyrem alone. Works best and have least amount of night tremors too! Good luck!

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