Narcolepsy Forum Posting

Posted by sleepy ali on March 04, 2001 at 11:28:58:

Hi everyone. I'm new to the forum, but NOT new to being excessively sleepy. I am a 38 year old mom and am just (FINALLY) being diagnosed with what appears to be at least two sleep disorders. My apnea is mild to moderate, so the doc is going to treat it first with the c-pap machine. They went ahead and gave me the MSLT the very next day. I did not have REM sleep during the naps, even though I did dream. I had one hypnogogic hallucination during the test (I have these pretty often) but I don't have much in the way of cataplexy happening on a regular basis. At this point, the doctor is sure that I have EDS, mild apnea, and possibly narcolepsy. He seems hesitant to diagnose narcolepsy because of the lack of cataplexy (I had one period in my life where I experienced some sort of cataplexy over the course of about a year and a half, but not much since then) and because I didn't show REM sleep during the nap tests.

Now that I've finally found a doctor that actually understood the symptoms I described (I can't tell you how many docs said, "your symptoms don't fit a pattern I easily recognize" and went on to use the most expensive tests to try to get to the bottom of what was happening) it is such a sense of relief to at least know that I am not crazy or lazy or irritable just because I like being mean.

I have fallen asleep driving, doing homework (in high school) during class, during tests, singing in the choir, while straightening the isles at Payless Drug where I worked, while talking on the phone, while reading, ALMOST while swimming....you name the activity, I've probably slept through it at one time or another in my life.

I have not gone on any meds yet, though I am thinking of begging my doc to let me try provigil soon, even though he really wants to use the cpap for a month first.

I have a horrible history of job changes, and I am now nearly certain that being excessively sleepy was a LARGE part of the failure of my last marriage and losing custody of my six children to their father. My sleepiness was brought up in court as neglect (even though I did manage to keep the house clean and keep everyone fed etc), and I did feel HORRIBLE all the time about sleeping so much. I would get the kids off to school and then collapse until about noon, do some chores until they got home from school, and then we would all have a "quiet time" for an hour or so until it was time to make supper. Then, I would be behind in the chores and try to keep working after everyone went to bed, but I was so tired that rarely worked very well. By the time the kids' dad and I separated, I felt so horrible about my level of performance that I was ready to admit failure in all sorts of ways, which did NOT help me with keeping custody of the children. I miss my children so so much, and even though I am relieved that there is an actual disorder that explains MANY of the struggles in my life (feeling foggy headed much of the time, not being able to make it beyond the first semester of college, getting lower grades than I know I'm capable of, falling asleep during VERY important events etc)I have this great sense of loss for the things I have not been able to do and the losses that have come with low performance.

I am looking forward to being able to figure out how to function in life, for once (apparently), and to having hope for these conditions that have truly disabled my life.

Do any of you wonder what you might have accomplished if you hadn't been so sleepy? I do......

Follow Ups:

• Re: sleep paraysis steven upton 15:07 4/01/01 (0)
• Re: On the verge of knowing rip van winkel 14:07 3/04/01 (0)

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