Hi I am Lynn.  Can anyone help me.  My daughter has been suffering from KLS since Nov 2001, when she was 14 yrs old, but wasn’t diagnosed until May 2006.  She suffered 15 episodes each lasting 10 days between Nov 2001 - May 2003.  Since then she has suffered 5 but they are all longer between 16 - 32 days each episode.  She is currently in an episode so far 39 days which is the longest ever, and finding it very difficult to clear.  It is devastating to watch her suffer.  The tiredness wore off after day 10 - 12 but the derealization has been with her 24/7 since day one.  Every time she gets close she gets upset and cries as she can’t take the ureal feeling anymore.  This then sets her back and the unreal feeling becomes stronger again.  Please someone help me to clear this for her. From her desparate mum in the UK.

Hi Lynn.
I’ve just emerged from my longest bout of KLS to date - over 40 days. Prior to the last two, I also had episodes which continued for about 10 - 14 days. My wife and I empathise with you & Melissa. We’re so sorry you have to go through this. We too have been thrown by the extended episodes and the prolonged derealisation and cognitive behavioural disturbances. The sleeping part is in a sense a relief (from my point of view) - it’s the feeling of being trapped in an unreal place which is so discouraging & debilitating. From my wife’s point of view, as the one watching & caring, the feeling of helplessness & desperation is increased once the episode goes on longer than the typical 10 -14 days. However, the one common factor for every KLS episode is that you do eventually emerge. Whilst struggling to clear I know I’ve appreciated my wife’s reassurance & calming influence (even though I know she finds it all incredibly difficult to handle).
I’m due to have further investigation into all this at Walton Neurological Centre in Liverpool. If anything helpful results from these investigations we will be sure to let you know.
Regards, David & Chandrika

Lynn - I agree with Davids posting and can sympathize.  I had longer than normal episodes including my last episode - 6 years ago.  There are extremely frustrating for everyone.  I wish we could provide more help in popping people out of these longer episodes but there is not any link we have been able to establish as to why it happens.  Is your duaghter on any medications (just curious)?  Hope she comes out soon.

Hi Lynn,
My name is Diane and I also have a daughter that has been suffering with KLS for many years. She was not diagnosed until the spring of 2007. This past year my daughter’s episodes have been extremely active. She has been losing as much as 90% of her life some months to episodes this past year. My daughter experiences the derealization as well. The derealization symptoms can make it almost unbearable at times. As her mother, I just wish so desperately I could take the pain away. On a positive note, it seems that even though her episodes have increased in frequency and duration there are signs of it beginning to “burn out”. She has had ten consecutive days of health which is more than she’s had since September. It seems that it is starting to lesson; she is not sleeping as much and the derealization is going away sooner in episodes (not lasting as long). My daughter has had many hours of brain scans done both when in an episode and well. And since seeing the results of these scans, we have been able to better understand this illness and what it does to the brain. Because I have seen pictures of my daughter’s brain and the changes that occur when ill, I have been better able to help her through this illness. When my daughter is in an episode, it helps her that I am calm. She likes my voice to be compassionate, soft. and soothing. The tone of the voice is everything. The tone is more important than anything. She likes me to call her sweetie or honey. All of these little things really do help our life at home be more settling. It soothes her for me to agree with her, tell her I’m sorry, tell her I understand. When she’s very upset, I look for the moment she’ll let me hug her so she can cry in my arms. This will usually calm her and let her fall to sleep. It sounds so much easier than it is. But these simple little things have made a huge difference. During these episodes, we have learned how to keep a peaceful, loving, and even happy home. I am here to answer any questions you may have.

My sleep episodes were never for consecutive days of sleep, but rather the 16-18 hours a day during an episode.  Of course, even after I recovered from the sleep episodes I had to deal with the other symptoms.  I went into a serious and lengthy episode in 1970 and was hospitalized for about four months.  All tests were normal.  I was prescribed stelizine and cogentin and sent home with a diagnosis of depression with psychotic features. The anti-depressants available at the time, namely Elevil and something else, both put me into a deep, deep sleep, even at bus stops or anywhere.  It was clear I could not function while taking this medication.  I finally decided that the stelizine did not help.  Once I accidentally took a cogentin instead of an aspirin and fell into a deep, deep sleep for over 48 hours.  My landlord could not rouse me and thought I was dead.

So, the only thing that helped lessen the symptoms was regular long walks ... and I mean long walks.  There is something about the rhythmic motion that allowed me some relief.  I walked even when I felt out-of-it.  Recently, there was a news segment on how dancing helps Parkinson’s sufferers.  While dancing, they experienced some feeling of normality.

I know everyone’s experience is different; this is just a report from an individual.

Hello Lynn.  I was reading your request for ideas to help Melissa when she is trying to clear.  Perhaps reading to her would help, especially classics like Alice in Wonderland, fairy tales and some of the fine descriptive or visionary poets.  I know this must seem like a ridiculous suggestion for someone who is experiencing the anxiety of feeling unreal, however, it might help structure her “thoughts” within recognized and revered boundaries.  In otherwords, within these books and stories are means of rejoining reality...through commonly understood unreality.  Also, she won’t feel so lonely.  Best wishes.