I am a 41 year old woman from London, Ontario, Canada diagnosed with KLS-Menstrual Hypersomnia, November 2010 by Dr. Brian Murray at Sunnybrook Hospital in Toronto, Ontario, Canada (He is awesome, and without a doubt has the best bedside manner of any doctor I have ever encountered over the years).
I had several episodes in my teens, early adult life, once sleeping for almost nine months. I have consistently been sleeping the past eleven years with one reprieve of symptoms that lasted almost a year in 2006. As I am sure any KLS patient can say, I am so thankful to finally know for certain what is wrong with me.
I have been through endless tests, misdiagnoses and generally treated like crap by multiple doctors over the years. My last diagnosis was, of course, psychiatric. However, through extensive, daily self-documentation of symptoms for almost three years while under her care, the psychiatrist recognized that my symptoms were not just psychiatric and took me seriously when I suggested KLS or hypersomnia and she referred me to Dr. Murray. It only took one appointment for him to diagnose me, though he did all the usual tests before giving me the diagnosis. I will always be grateful to her for finally listening to me and referring me on to Dr. Murray.
I have a long, long medical history and have endured many life hardships as a result of KLS symptoms and sleeping. Now that I finally have an answer, I can work with Dr. Murray towards possible symptomatic relief, and go on a crusade to educate others and hopefully help others get a diagnosis and help much faster than I did.
Interestingly enough, all my sleep attacks documented for almost three years coincided with my menstrual and ovulation cycles. The hypothalmus produces all sex hormones. If hypothalmus dysfunction is a cause or contributing factor of KLS, and if endocrinologist and gynecologist can figure out my hormones/pause my menstrual cycle through birth control pills etc, then theoretically, Dr. Murray has hope that I could be symptom-free.
Even if this theory doesn’t work, I am thrilled to have something worthwhile to try, and to contribute to the research he is doing into KLS.
Anyone who wishes to contact me privately, I can be reached at .(JavaScript must be enabled to view this email address).