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Posted Dec 18 2009 12:00am
My sleep-wake pattern is so disturbed at this point that I'm getting a little loopy and am craving even just one night of good sleep. This problem has gone on more than two weeks. I'm sure this lack of good sleep is NOT helping my health. I'm running a fever of 100.0 today.

The Lunesta (which I took for a few days) did not work for me. It helped me fall asleep, but I kept waking up throughout the night. After the Lunesta I was prescribed a high dose (30 mg) of Restoril, which didn't help after four nights of taking it. It did not help me fall asleep, and I ended up waking up "wide awake" around 4:30 or 5:00am after having fallen asleep around midnight.

If you're keeping track, so far the following medications have NOT helped me sleep:
  • Trazodone (caused nasal passages to close)
  • Soma, prescribed for tension headaches (kept me up for 36 hours!)
  • Valium, prescribed for tension headaches (made me wake up every one to two hours)
  • Lunesta (did not help me stay asleep)
  • Restoril (did not help me fall or stay asleep)
The newest sleep med I'm going to try is Ambien CR. My first dose is tonight.

I've had trouble sleeping in the past, but my sleep patterns got worse after the lumbar puncture and MUCH WORSE after the Soma incident. Compared to now, my past insomnia was nothing. I used to be able to take over the counter supplements or meds to help me sleep. However, my brain chemicals and internal clock are so crazy now that nothing (including natural remedies, good sleep hygiene, and prescription meds) so far has worked.

In other news...
  • I received a letter yesterday that let me know my Short Term Disability claim was approved through November 30... but they now need all my medical records including all test results from every treating physician from November 11 through present (before they just needed info from one doctor).
  • I went to my regular doctor on Monday, and she reiterated that I should continue to stay out of work at least until January.
  • My doc also prescribed seven days of the antiviral medicationValcyte for me because the blister on my throat appeared viral and not bacterial. She also ordered new EBV and HHV-6 tests to see if my levels are high enough for me to take Valcyte for a longer period. There is some research that shows some people with CFIDS improve on Valcyte.
  • Turns out the area of my blood patch was infected, which is why it hadn't healed after over a month. My doc prescribed a topical antibiotic, and it has already helped a great deal.
  • I will be seeing a pulmonary specialist for the "air hunger" I recently started experiencing; however, I've read that this symptom is not uncommon in people with CFIDS, so I doubt the doctor will find anything wrong with my lungs. My breathing tests at the place that treats my asthma already confirmed my lungs are clear.
  • The Cognitive Behavioral Therapist told me she didn't think I needed regular counseling at this point because I am not currently depressed or experiencing excessive anxiety about being chronically ill and seem to have developed good coping skills. I've got two more appointments with her, then we'll schedule on an "as needed" basis. I have battled depression and not handled my disease very well in the past, so it's good to have outside confirmation that I'm doing ok mentally.
  • The physical therapy has helped my upper back pain a bit, but the daily headaches have returned since I stopped all the meds the neurologist prescribed.
  • I've kept up with my "olympic training regime" so far, taking daily walks to the mailbox (roundtrip: 3 min).The Georgetown doc told me to walk even on days that I feel awful to work on reprogramming my brain. Starting Monday, I'm going to increase to four minute walks...maybe...or I might just stick with my mailbox walks. I'll see how I feel.
That's all for now.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, headache, nausea, low grade fever 100.0, blister in throat, sore lymph nodes under arms and in neck, tired and sore muscles, poor memory and thinking problems, air hunger.

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 6
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