Posted by Mary on April 28, 1999 at 12:51:40:

In Reply to: Re: Have I or havn't I? posted by Elizabeth on April 27, 1999 at 20:15:32:

Elizabeth,
I will try to scan the booklet and send it to you. If nothing else, perhaps it could be mailed.
Have you received the results of your sleep study? They can be a strong factor in diagnosis, but they are also a only a synopsis of what your entire experience may be. Hence, one night can possibly reflect less about your chronic symptoms and more about a rare occurance of RLS. Did your sleep study include both a polysomnogram (at night) and an MSLT at periods throughout the next day? Both are often used for a diagnosis of narcolepsy, although a clinical diagnosis by a sleep specialist can also be done. The MSLT can speak volumes about daytime sleepiness and naps.
I can certainly relate to your symptoms of cataplexy, excessive daytime sleepiness, and an inability to wake up in the morning, sometimes. As Tony mentioned, I also experience weakness in stores and other places. My weakness is definitely not psychological; I enjoy public places and the numerous other places where this happens (including the car, the shower, and friends homes). Sometimes, if something startles me or I experience certain intense emotions, I will become suddenly weak, and even begin to collapse. Other times, as you mentioned, there is a feeling of general weakness that seems to overtake certain days, or parts of days.
I readily admit that I fight every symptom, as much as possible. Exercise and good nutrition do help but are not a cure for symptoms, for me (especially as the introspective age of 40 creeps up). In fact, it seems that exercise is most beneficial over time. In the midst of a workout, it feels like impending death to fight such a feeling of sleepiness and weakness, and sometimes I will "crash" anyways, during a workout or other activities. Of course, the workouts or any other aspect of my day cannot even begin until I am out of bed, in the first place.
I also have learning disabilities, ADHD, and periods of severe secondary depression from the narcolepsy. This has placed me on Social Security for the last several years. And symptoms are getting worse over time. (I'm waiting for insurance approval for Provigil, because every other drug has had intolerable side effects.) It seems, for me, that self-educating my way to a degree, and working and developing a career at home, at an extraordinarily slow pace is all that has worked. (I say "worked" loosely.)
Sleep problems can be disabling, but obtaining appropriate diagnoses and support can also be a problem. Sleep-related symptoms are ambiguous, and this leaves the experience open to criticism from well meaning physicians, therapists family members, and friends. Sometimes I even doubt myself, and what guilt that can create! Tell me more about your experience. This is helpful for me, too. And it is great to finally be meeting other people who understand.
Mary

Follow Ups:

• Re: Have I or havn't I? Elizabeth 4/28/99 (0)

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