For the first episode at 10, the doctor insisted it MUST be DEPRESSION. It didn’t seem like depression. The only time she cried was when I tried to get her up!  When she did get up she was stumbling around, walking into walls and falling down stairs (OK - she cried then, too). Anyway, I have always wondered what the effect of high dosage Zoloft had for something that wasn’t really depression, and if that’s what caused a lot of her extra problems down the road.

The second time it happened I knew without a doubt it was NOT depression. They ruled out mono, then said it was “something viral.”

Third time they said, “Something viral - may as well call it mono” which worked well for the school. They understood “mono” much better than missing 3 weeks for “something viral but we don’t know what.”

Then, she got very frequent short episodes and it just got mixed in with all the other problems she was having and was lumped into what they called “schizoaffective disorder.” No real diagnosis… and the family just referred to them as her “sleep days” and “sleep episodes.” She was 16 before we ever heard of KLS - that was 6 years after they started happening.

She is now 22 and only has about 4 brief episodes each year. Oh - and no more “schizoaffective disorder.”  Her case is complicated by other problems - another sleep disorder, and other problems presumably originating in hypothalamic dysfunction. The hypothalamus of the brain regulates many things in addition to sleep - like the endocrine system.  But when she was younger, they missed that, too. It was until we specifically looked for someone to look into the KLS symptom (we got an endocrinologist in Nevada-we don’t live there) that other things were found as well. He put her through 2 1/2 days of tests.

Citydog 100,

I can totally relate to what you said! Thank you for telling your experience. I too, wish my experience was like the true sleeping beauty story told on the Today show. Alls I can do is pray and hope that these terrible symptoms will leave me one day! I am doing well and am awake and I hope everyone is doing well too!

-Alanna

Lets see…in no order…here are my “diagnosis’” from the past 4 years before KLS….mono (x3…third time I told doc no way could be mono), depression, hormonal/menstrual/gyn issues (since I have irregular periods and history of cysts…doc assumed hormones), chronic fatigue, restless leg, Addison’s Disease (AKA adrenal gland failure), MS, brain cyst, drowsiness secondary to respiratory meds (stupid diagnosis to give to a respiratory therapist)...
Also been tested for brain cancer, bi-polar, drugs, thyroid, pituitary, diabetes, cardiac issues (which ironically they found an arrythmia, but nothing serious), eating disorder (since I don’t eat when I sleep a lot then eat like a pig when I first wake up…but their theory was because I have been dancing since I was 2, a few girls in studio were treated for eating disorders AND because I am a “beauty queen” and been in the Miss USA pageant system), other cancers related to fatigue (GI cancer, leukemias), sleep apnea, narcolepsy…the list goes on.
Finally I had enough and did my own research, came upon this site after 2 months, and gave it to doctor.  Then took a year to find a doctor in CT, and luckily a close family friend was good friends with a sleep doctor nearby and chair person of a local hospital in sleep.
Sometimes we need to take things into our own hands when the doctor gives you an answer you know deep down isn’t right.  And from someone in the medical field…be a pain in the a$$ to your doctor if you know something isn’t right.

I’ve been told that I’m depressed several times and just gave up on trying to get diagnosed.  I’ve lived with it, almost losing my house once, bills got behind, had to have others watch my kids.  This past cluster of episodes I was determined to get a diagnosis so I read online and printed info from this site.  My dr. sent me to a sleep study who said I couldn’t have it as it’s for teens.  I continuted my search and then the sleep dr. told me she read up on it and it does appear I have it.  Had an MRI to rule out anything else, another sleep study, answered more questions and finally got my diagnosis.  I’ve been depressed so many times and still can’t seem to shake all of that.  Just starting on Ritilin which doesn’t give me energy, just clears my head.

Doctor tried me on Ritalin….......HORRIBLE…I don’t know how people put their kids on it.  It made me feel so much worse that after a week I took my self off it, told doctor and he tried me on Nuvigil.  But I can relate to the diagnosis thing cause I am 29 and just diagnosed and my age is what took longer to get the diagnosis