Musings of a Medical Zebra

Archive for the ‘EDS Stuff’ Category

Hola

I realize it has been a very long time since I posted last. I need to get better about updating this. I promise to do that very soon. 

May is Ehlers-Danlos syndrome Awareness Month

Check out the following links for more information:

Ehlers-Danlos National Foundation
Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc.

Farewell to the Sleep Specialist

After a bit of a discussion, my sleep specialist prescribed Provigil at my last visit. I started with a 100mg dose. It helps for a few hours and then stops working. He bumped me up to 200mg and it doesn’t do much more — just makes me jittery. I called him to mention the jittery feeling from the 200mg dose and to let him know that it doesn’t do much more than the 100mg dose. His nurse returned my phone call this morning.

My sleep specialist says that his hands are tied until my pain and stomach problems are under control.  He said when I can sleep through the night, he can help me. Until then, there isn’t anything he can do. *sigh*

I explained to him at my last visit that I have a gastroenterologist and a pain specialist. The gastroenterologist has not been able to fix my stomach problems and my pain specialist will not be able to make my pain go away entirely. I thought the sleep specialist understood that, but apparently not.

I have a follow-up with my internist in a few weeks. I will talk to him about this and see what he can do. I see no reason to meet with the sleep specialist again.

Happy St. Patrick’s Day!

I wrote the following post on the 17th, but am only now getting around to posting it.

I was diagnosed with Ehlers-Danlos syndrome on this day in 2005. Rather than dwell on the things that EDS has taken away, I am instead reminded of what EDS has given to me.  So today, I celebrate.

Hello Again

It has been a long time since I have posted. Right now, among other things, I have a bad sinus infection. I’m fairly ill at the moment. I hope to be feeling better by next week. Until then…

Sleep Study Results

It took us close to 30 minutes just to get out of our driveway Thursday afternoon. Over five inches of snow fell the previous night. The snow plow didn’t exactly do a stellar job with the streets, so we managed to get stuck in the road adjacent to our house.  When we arrived home, we were both pleased to find that our neighbor — who drives a snow plow for the county highway department — had plowed my parking spot. Living in a small town has its perks. Anyway, back to the reason for this post — my sleep study results.

My pulmonologist — the doctor that ordered the test — said that I have Periodic Limb Movement Disorder (PLMD). He prescribed Requip. Since he is stepping me up on the drug over a three week period, I won’t know how well the drugs works for a little while.  The hope is that it will eliminate or  significantly decrease my daytime sleepiness. Some of my medications interfered with the sleep study, making it impossible to determine if I have narcolepsy. If the Requip doesn’t work, my doctor is going to treat me for narcolepsy.

In the mean time, I’m supposed to limit my naps to 20 minutes and I’m supposed to go to bed and get up at the same time each day — no matter how much sleep I get. Needless to say, the next three weeks will be interesting. I am crossing my fingers that the Requip does the trick. Wish me luck, pray for me, or whatever it is that you do. 

Sleepy…

I have been so tired these past few days that I have barely been able to stay awake. This weekend we will be traveling a couple hours from here to see my husband’s family. I am hoping I will be able to stay awake long enough to visit. We’ll see.

Next week I meet with my pulmonologist to talk about the results of my sleep study. I cannot wait.

Dizziness

I’ve been having dizziness episodes lately. At the same time the dizziness kicks in, my feet and/or arms briefly go numb. It’s a strange feeling — quite disturbing. I hope it goes away soon.

Holiday Dread

All EDSers that are at least mildly dreading the upcoming holidays please raise your hands. Is your hand raised? Mine is.

I enjoy visiting with family and friends…when I’m feeling up to it. Lately — if you’ve been following my blog you already know this — I haven’t felt up to it very often.   For the past few months, about the only thing I’ve felt like doing is sleep. When I’m not sleeping, I spend the bulk of my time fighting sleep or trying to keep my mind off of sleep.

I am exhausted. I am dizzy. I am in pain. All of these things indicate that it isn’t in my best interest to ride 2.5 hours one way to visit as many people as we can in 24 hours just because it’s a holiday.

Ideally,  folks would come up here once in awhile — maybe not on an actual holiday, but sometime near a  holiday. Unfortunately, it’s hard enough to get some folks up here yearly, let alone twice in one year. Maybe someday…I can always hope…

Sleep…

I did a sleep study Sunday night through Monday. My sleep was repsentative of a typical night at home. Monday morning, they woke me up at 6:30am. Beginning at 8:30am, I took a series of five naps lasting 20 minutes each. Just as I would get comfortable, someone would walk in and wake me up. I wasn’t allowed to fall asleep in between naps; the naps were two hours apart. I was there until 4:30pm. I am glad it’s over and I’m looking forward to getting the results. I should hear something in the next few days.