I am new to this site. I have not been diagnosed yet, but it is as if I have been in a coma for the past two years. I sleep from 15 to 20 hours, sometimes more. I can’t wake up. Sometimes I can not even get a shower for days. I can not function. I am so exhausted. I do not do much of anything, I get up to go the bathroom and go back to bed. I can’t clean, cook, or anything. My husband brings my food to the bedroom if I get hungry. When I wake up, I yawn constantly. This is a nightmare.
I am going to have a sleep study done this month, but what can be done? I feel like I would be better off dead.
I have lupus, liver disease, RA, etc., but this is different. I hate it. Do you think this is what I have??? The doctors here are clueless.
Thank you for listening.
Bonnice

Hang in there ,pray, find a doctor that knows kls,I know how you feel, find a church with volenteers to help at home. Or Insurance get a nurse to help , look for a volenteer, take vitiamens , eat raw vetabels. fruits. everyone hears your pain, don"t give up.

Hello, I recently viewed a documentary on KLS and the symptoms were somewhat similar to what my husband has experienced through the years.  I’ve read through the forums and have found many similarities.  He’s always sleepy, sometimes more so than others.  As a child he could easily sleep for 24 hrs. -asked for naps- in college there were several times his roomates thought he was dead because he slept through the night and next day.  Strong family history of neurological issues, (migraines, epilepsy, restless less syndrome) He’s had sleep studies that were pretty much inconclusive.  I am interested in the change in behavior that many have written about.  For the past few years he has been lying compulsively.  This is a huge change from the person I knew for a good six years prior to this.  Many times it seems he’s in a daze.  As far as diagnoses, he’s had severe migraines since adolescence.  For the past three years he has tried medicine for anxiety, depression, ADD, counseling, 12 step groups, etc. yet nothing has seemed to work.  Does this sound similar to anyone’s experience?

Thanks!

Hi,
I’m sorry for your husband’s illness. KLS is so difficult to diagnose because it takes on so many other illness symptoms. When you go for years undiagnosed, it makes for a very confusing and painful experience. It’s a tragedy on top of a tragedy. But there is always hope for recovery because there is recovery in illness.

The KLS sufferer when undiagnosed is grossly misunderstood. I am not a doctor. I am a mother with an 18 year old daughter who suffers with KLS. She went many years undiagnosed.

The following are some questions that might help you: Is this behavior cyclical? Does your husband experience a dream like state (not really knowing if life while sick (could be at times) is real or a dream)? Is he easily agitated? Does he experience overeating? Is he child-like? Does he experience apathy when ill?
Maybe some of these questions could get you closer to knowing what it is he is dealing with.

I am happy to talk with you any time. You can either talk to me on line or email me. You should be able to get to my email thru this website.
I hope for a speedy recovery for your husband and bless you for staying by his side.

Diane

Hi Bonnice53,

I’m sorry for your illness. I am a mother with an 18 year old daughter who suffers with KLS. She explains KLS as it being like she’s in a walking coma. Everything you say about the sleeping, not being able to function, etc. she experiences too.

This website has a list of doctors that are familiar with KLS. If you can schedule an appointment to see one of those doctors, it may be very beneficial. Just having someone know about KLS and the symptoms of KLS is very helpful. There’s nothing worse than seeing doctors who know nothing about it. It seems every KLS patient is unique in their struggle but there are many of the same symptoms occuring.

I send you very best wishes for a speedy recovery.

Diane

Hi,
Iam new to this site.  I have had KLS episodes for 20 years.  Do any of the women notice premenstral
syndrome as a trigger for KLS.  This is how it seems to affect me.  I had a hysterectomy 9 yrs. ago.
I still have episodes. Iam currently going for another surgery #4 because of adhesions.  Its interesting--
because last Nov. after the laporoscopy I felt great no episodes till a couple months ago when cramping came back.
For me I think theres a relation some how.  Iam seeing a Dr. this week for KLS and its the first one.  My episodes
are frightning at times.  I sleep all day and feel like the flu.  It comes on the same every time.  Cold chills,
watery eyes and runny nose.  It feels like adrenal fatigue.  I’m in the process of sorting this all out.
Akaila