Musings of a Medical Zebra

Posts Tagged ‘Ehlers-Danlos syndrome sleepiness’

Tired

Tired — that word sums up the last several months. Fortunately, I have a new sleep specialist. Not only is he a great doctor and a nice guy, but he also has an interest in EDS. At my first appointment, we spent 20-30 minutes just talking about EDS — the types and their manifestations.

When he was in medical school, EDS was still classified using Roman Numerals. For him, Classical EDS was split into two types — EDS Type I and EDS Type II. Now it’s one type and called Classical EDS or cEDS. Similarly, Hypermobility EDS was EDS Type III and Vascular EDS was EDS Type IV. They are now hEDS and vEDS, respectively.

Of course we didn’t just talk about EDS. The bulk of my time with him was spent learning about the various drugs that can be used to help me sleep, and those that can be used to keep me awake. Unlike my previous sleep specialist, my current doctor understands the most important reason for me to remain alert during the day  — so that I can drive, thus maintaining a certain level independence. 🙂

Currently, I’m taking a drug to keep me awake during the day and a couple drugs to help me to sleep at night. Though I still have a few nights a month where I am only able to sleep for a couple hours in a row, I would say that my ability to stay asleep has drastically improved. My level of alertness during the day has made some improvements as well, but not in proportion to my sleep. I still spend about half the week too tired to make it through the entire day without a 2-3 hour nap.

I meet with my sleep specialist again in February.  Perhaps he will have more suggestions, which will lead to further improvements. I will keep you posted. 🙂

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