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Treating CFS Sleep Dysfunction

Posted Sep 16 2009 10:12pm
I'm doing much better this week - my two-week long crash seems to have finally ended - but last night I had the worst night's sleep I've had in years! No idea what went wrong - I took all the same bedtime meds I take every night - but I was up about 8 times during the night to go to the bathroom. As my doctor once told me, "You're not waking from a sound sleep because you have to go to the bathroom; you're going to the bathroom because you're not sleeping soundly." So, this seemed like a good time to write about the sleep dysfunction that plagues just about everyone with CFS.

The most common question I get asked is how to treat sleep problems. I've explained CFS's sleep dysfunction and linked to articles on treatment in dozens of e-mails, so I figured the topic deserves a blog post. I'm certainly no expert, but I've learned a lot in my 7 years with CFS and my current treatment plan provides me with natural-feeling, sound, refreshing sleep about 90% of the time (last night was an unusual occurrence).

After a year of searching for answers when I first became sick, I finally stumbled onto the doctor I see now. She's a local family doctor, but she has several other CFS patients and recognized it in me almost immediately when I showed her my year's worth of charts and graphs! Once I learned a bit about CFS and saw that it fit my symptoms perfectly and was, in fact, a real diagnosis, I went back to see her. She said, "Now that you feel comfortable accepting CFS as your diagnosis, are you ready to try some treatments?" Was I ever! She told me, "The first step is to treat the sleep dysfunction. Correcting that and getting you good quality sleep will improve all of your other symptoms."

She was absolutely right! Getting good quality sleep reduces pain, improves immune function, often vastly improves cognitive functioning, and, of course, reduces fatigue. The key is to correct the root cause of the sleep problems, not just mask them with sedatives.

There are many kinds of sleep dysfunction in CFS patients, but the most common is light sleep, where you never hit the deep stages of sleep (Stage 3 & 4) required for restorative sleep. The reason behind this is simple. The endocrine system (which produces hormones) is dysfunctional in people with CFS. In a healthy person, the body naturally produces more dopamine and serotonin in the evening, as it gets darker. These two hormones are released in the brain, causing the normal progression of all of the stages of sleep, including deep sleep. Without enough of these hormones, the brain stays in the light stages of sleep.

So, the key is to increase levels of serotonin and dopamine before bedtime. There are many medications that do this. I know that some people don't like taking "sleeping pills," but these are not sedatives; they are medications that merely help to mimic what a healthy body would naturally do. The medications that do this are formally classified as anti-depressants, but don't let that deter you. When used in small doses, they lose their anti-depressant properties and help to treat sleep dysfunction by increasing serotonin and dopamine.

There are two articles that explain all of this better than I can. One is from a 2001 issue of the CFIDS Chronicle and the other was written by Dr. Bell.

The best approach is to share these two articles with your doctor and use them as a guideline for deciding which med(s) to try. The chart attached to the CFIDS Chronicle article is particularly helpful. It usually takes some trial and error, and everyone is different. Start with very low doses and slowly work up. If any medication has side effects that you don't like, try another.

In my case, my doctor first tried amitriptyline. I started at the lowest dose (10 mg), but it left me feeling groggy in the morning, so we moved on. Next I tried 50 mg of trazodone (Desyrel), and that worked very well for me for awhile. I was thrilled to be sleeping again, soundly through the night, and waking up feeling rested and refreshed. My doctor was right - it made a big difference.

After awhile, the trazodone didn't seem to be working as well, so we increased my dose to 100 mg. That worked well for about a year. When that dose started to become less effective, I consulted with Dr. Bell who recommended adding a different medication rather than increasing the dose further. He and my doctor advised trying nortriptyline (Pamelor) which is available as a liquid so that the dose can be adjusted by minute amounts. I have stayed on this combination of trazodone and nortriptyline for several years now, and it still works well (last night not withstanding!). I can adjust the nortriptyline dose if I need to, and I have found that small changes make a big difference. Most nights, my sleep feels normal, I only wake up once during the night to use the bathroom (if at all), and I wake feeling like I got a good night's sleep.

My older son, Jamie, also takes nortriptyline (on its own) for CFS sleep dysfunction. We have each found the right medication and dose for our individual needs.

In an odd coincidence, Jamie stayed after school today to work on his science fair project. Guess what topic his group chose? The science of sleep and the effects of sleep deprivation on cognitive function! Isn't that the perfect topic for a teen with CFS? He has assured me that he will not be experimenting on himself! A couple of his night-owl classmates have agreed to be the guinea pigs.

I firmly believe that correcting my sleep dysfunction is a large part of the reason that I function as well as I do. It really makes a difference.

I hope that answers some questions and provides some guidance. If you're still struggling with sleep problems, I strongly urge you to look into treatment. My doctor was right - good sleep really does make all other symptoms better.

Pleasant dreams!
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