Where or how does KLS fit into the discussion on the new DSM V?  For example, can a dr. or mental health professional find a description of KLS in the most consulted document of that profession?  Can anyone provide information or a meaningful link regarding the update of this powerful tool which in the end determines how billions of dollars are spent on such “items” as medications, treatments, etc. and determines basically whether or not a specific condition is disabling (I’m sure there is much more, but I am not an expert).  Thanks.

I sure hope it is NOT in the DSM, but rather, just in the ICD. Although many diagnoses in the DSM are medical rather than truly “mental,” both the medical community and society at large do indeed carry a stigma about it. Trying to figure out the underlying cause stops, because it is already labeled and the label is “mental.”

Should KLS be given specific attention in the DSM V?  My own experience attempting to deal with this syndrome revealed just how wide the cracks are between the mental health and other health communities.  I was extensively tested in a teaching psychiatric hospital, but when nothing “physical” was discovered to account for my strange behavior, the determination was that I was mentally ill.  Indeed, after that nothing physical was considered.  Perhaps that made it easier to qualify for SSI, I don’t know, however, it was clear that I was disabled.  When I realized I was going into some kind of remission (after several years of disability), I made every effort to get back into the world.  I contacted the local government-affilitated Office of Rehabilitation, where the worker assigned to me regarded me with great suspicion.  How could I function if I was in fact permanently disabled.  Darned if I knew.  I was afraid he was going to call for some kind of investigation of my SSI status which only added to the intense anxiety I was already experiencing trying to test whether I could come back.  Anyway, the point is that with better understanding of this condition, better “life needs support” can be provided along with realistic guidance back into functioning society when the episodes finally wane.  In addition, some mental health understanding of this condition would help struggling patients like myself who presented with classic symptoms of KLS to totally clueless psych. drs.  I could not make anyone understand which resulted in total frustration all the way around.  (I’ve talked about my attempts to get help from the physical health community in other posts).  By the way, I recently was given a copy of “My Stroke of Insight” by Jill Bolte Taylor, Ph.D.  I have not experienced the “right brain euphoria” she describes, however, I do recognize her description of watching her “brain” profoundly changing.  Are KLS episodes some kind of non-permanent “stroke” activity leaving the left-brain aware but unable to exert meaningful control over the KLS-affected brain?

Currently, KLS is listed only under the heading of hyper somnia.  Tthis is unfortunate, but it has not yet been changed.  It is my hope that any mental health professional dealing with a patient who exhibits excessive sleep will look under hyper somnia.

Thank you for your valuable input .  In my own case, I did not have a witness or advocate, so when I reported the sleep episodes, it was attributed to atypical or major depression.  Instead, the various drs. I saw focused on the other behaviors that occur with this syndrome leaving me (over decades) with an amazing array of diagnoses and exposure to tons (or so it feels like) of medication.  Believe me, if I hadn’t been desperate for help, I would have skipped the whole dr. thing.  (When hospitalized, I slept and slept but it didn’t ring any bells with staff and besides, I was soon medicated which I assume provided an explanation for the sleeping).  Others who saw me in post-sleep episodes said I just looked so lost.  There are two other symptoms discussed by KLS reporters that are not mentioned in the KLS introductory description on the Foundation home page; namely, “the prediction thing” and “I feel like two people”.  An attempt to report the second symptom to dr. ended with a diagnosis of and medication for MPD even though that didn’t seem to fit.  An attempt to discuss the “prediction thing” with a dr. garnered me a very angry response that I was suffering from “magical thinking” and to basically cut it out.  Neither of these symptoms are made up or ridiculous, I am convinced it is brain stuff associated to KLS.  Will any of that be made clear in the DMS V?  I understand much progress has been made in making KLS familiar to the medical community and I am truly thankful for this Forum.

Oh, CityDog!!!  Your story is familiar.  When my child slept for weeks, the doctors insisted it had to be major depressive disorder. They kept increasing SSRI antidepressant. I partially blame that for her eventually really “going nuts” (she’s fine now). I did a search on Amazon for books on Kleine-Levin syndrome and only saw 3, one of which is titled simply enough -Kleine-Levin syndrome , although “It’s Not Mental ” should be tagged as such even if only to a lesser extent. But the name says it all - It’s Not Mental. It does not belong in the DSM because then doctors equate it to some emotional problem. Many DSM diagnoses are NOT personality, psychological or emotional, but by lumping all these various things together, doctors and society lose focus that these are MEDICAL.

CityDog,
I am so sorry for all of the bad experiences you have had with your doctors.  I hope the worst is behind you now that you know what you are dealing with.  I hope you are feeling better and remain healthy.

Yes, doing much better.  I credit the Forum for providing genuine information.  Thanks.