Expert: Suzan Jackson - 4/4/2007

Question
QUESTION: Suzan,

Do you know of any medications or supplements that can be helpful for chronic fatigue? So far, modafinil (Provigil)has helped a lot, but I still sleep about 93 hours more a month than I used to.Do you know anything about Xyrem?

Thanks!

Miriam

ANSWER: Dear Miriam -

It is difficult for me to recommend any medications without knowing more about your illness.  You refer in your question to "chronic fatigue."  Have you been diagnosed with Chronic Fatigue Syndrome, CFS (a specific illness defined by a cluster of symptoms) or do you suffer from unexplained chronic fatigue (i.e. feeling tired all the time)?  If it's unexplained fatigue, I'd urge you to keep trying to find a diagnosis because finding effective treatments will depend on the root cause of your fatigue.

I would be glad to reconsider your question if you'd like to tell me a bit more about your diagnosis and symptoms, but I wouldn't want to offer any advice without further information because of the danger involved in recommending the wrong medications.

I have had CFS for 5 years now and have found a few medications and supplements that have helped with certain symptoms.  I'm not familiar with Xyrem.

I'd be glad to help, if you'd like to tell me more.

Sue Jackson

www.livewithcfs.blogspot.com

---------- FOLLOW-UP ----------

QUESTION: Hi Sue,

Yes, I have been diagnosed with CFS. I also have been diagnosed with depression, which is in remission. My main symptom is sleeping a lot for me--about 3 hours a day more than when I was "normal" and I feel generally tired. For example, I really want to exercise, but I am usually too tired and lie down instead and often take a nap.I started taking Provigil in the fall, and that made me feel more awake in general.Caffeine, by the way, does nothing.

I hope this is enough information!

Thanks,

Miriam  

Answer
Hi, Miriam -

Thanks for the extra information.  For myself and both of my sons (they're ages 9 and 12 and both have CFS also), we've found two general types of medication that have helped.

First, my doctor started with treating my sleep dysfunction.  I had the "too much sleep" problem you describe during my first year of illness, which then evolved into a problem of my sleep not being refreshing.  I could sleep for 10 hours but would wake still feeling exhausted and feeling as if I had been half-awake all night.  This is a very common problem in CFS.  

I found an excellent article on treating CFS sleep dysfunction with anti-depressants.  As the article explains, the medications aren't being used as anti-depressants; they're used in much smaller doses to help with sleep problems.  This article provided my doctor and I with a framework for trying and choosing the best medication for me.  Here's the article (and its accompanying chart):

http://www.cfids.org/archives/2001rr/2001-rr3-article01.asp  

It's a matter of trial and error since everyone responds differently to these medications.  We tried several, using the article and chart for guidance, before finding a combination that worked well for me (trazadone and nortriptyline).  I know others with CFS have had success with other medications on this list.

The other area of CFS that is somewhat treatable is Orthostatic Intolerance.  This is a condition that probably occurs in at least 90% of CFS patients and can cause all kinds of symptoms.  CFS affects the autonomic nervous system, causing lower than normal blood volume and difficulty maintaining blood pressure while upright.  Here is an excellent article all about diagnosing and treating OI, written by the doctor who first discovered the condition in CFS and pioneered its treatment:

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

Treating OI successfully can improve many of the symptoms of CFS.  Treatment can include some medications (listed in the article) as well as non-pharmaceutical measures, such as ingesting large amounts of salt and fluids and elevating the feet whenever possible.

Finally, there is a brand-new field of study causing much excitement among CFS patients.  Some doctors have had success in treating CFS patients with strong anti-viral medications.  The treatment works well if the doctor can first confirm the presence of certain viruses in the blood.  Even then, though, the treatment has some risks associated with it.  If you're interested in following up, you might consider seeing one of the doctors listed in these articles or talking to an infectious disease specialist near you and sharing this information.  Here are some of sources of information on this topic:

http://www.eurekalert.org/pub_releases/2007-01/sumc-ntf010807.php

http://www.cfsviraltreatment.com/

http://www.hhv-6foundation.org/

I hope some of this helps you.  Historically, there hasn't been much you could do about CFS, but there have been some very exciting developments recently.  Good luck -

Sue Jackson

www.livewithcfs.blogspot.com