We have just been through a second extensive episode this year. My husband has had KLS for 17 years and the episodes had all fit the general pattern of 10-14 days except the last two which have been 28 days and the recent one 40 days. We are trying to consider whether there could be any contributory factors to cause a more extensive episodes. We wondered if any one has found that unusual stresses/pressure have contributed to deeper illnesses. David has many responsibilities and leads a generally hectic life when well. what we are wondering is does ‘lessening the load’ make any difference or is it all the same?
Thoughts from you would be welcome.

This is a really good question.  I have fortunately been episode free for over 6 years (now 33 yrs old), however when I was having episodes we always “looked back” to what happened preceding each episode for a potential trigger.  In some cases we guessed it was the flu, the chicken pox, dental work with anesthesia, getting hit in the head in a sporting event, etc (who knows if these were the real cause but they were the events in the 2 weeks prior).  In other cases there did not seem to be one of those factors especially for later episodes when I was trying to avoid those “triggers”.  During college I had about 8 episodes and the biggest factor we could point to was the fact that I was doing school, working 25-30 hours, coaching a jr high basketball teams, etc and maybe it all caught up with me.  I do not think that being busy is the issue.  As the person getting the episodes I think it is the stress.  All of the “triggers” such as being sick, having an injury, etc put stress on our systems.  I feel like regardless of the cause that stress (in a broad sense- physical or emotional) is the ultimate trigger of the episodes.  I feel like when you get run down, just like I seem to be more likely to get a cold during that time I was more likely to have an episode.  Given that stress is likely not good for you or those around you anyway, trying to lead a less stressful life and avoid the so called “known KLS triggers” is probably a good thing.  Again I would say busy does not mean stressful and I reiterate that I am not a physician or researcher (just an accountant) and these are just my thoughts.

Hi there

When we were told nearly 2 years ago that Melissa had KLs we could never connect an infection or flu with her initial episode or any following episodes. She first went down ill 6 yrs ago and it happened after 6 mths of psychological bullying by a gang of jealous girls in her school.  After 14 episodes and 14 months later we withdrew her from school and this was when she started to improve.  In fact, since then she had 6 episodes in 5 years (although each episode is much longer).  We know what her triggers are and she tries very hard to live her life avoiding them.  One instant trigger is alcohol if consumed in large amounts (tipsy - drunken state) so she doesn’t drink.  The second is fatigue - so she makes sure she gets enough sleep (approx 8 hrs per night).  A row of late nights and less sleep can trigger an episode, also she now knows she can’t do shift work if it involves very early starts.  And finally the third trigger is the hardest one to avoid STRESS.  The type of stress with Melissa is when she has fear or is frightened and worried by situations.
I wonder if anyone else has been able to connect any of these triggers with their KLS.

Regards Lynn

My triggers have been seen to be, as you guys have all put - stress, alcohol, viruses or not getting enough sleep and all at some point seem to have fit into this ‘pattern’ of what preceds an episode, but then I also have had times when I was affected by the above and not got ill - my longest episode free period was when I was in my second and third year at Uni - stress from exams, out drinking with my friends, staying out late yet didn’t get ill.  I believe it has to be a very specific set of factors - possibly the ones i have mentioned above - and these factors have to all come together at the right time and that is what kick it off.  I just try to lead the life I would have had I not been affected by it and hope for the best.  Having just come out of an episode, I had not been drinking much before that, had been getting enough sleep and had not had a virus - possibly a little bit stressed at work but not majorly so not too sure what caused this one.

Surgery as a trigger:  When I was 24 years old, I underwent surgery for suspected breast cancer.  Although it was only a biopsy, the surgeon was convinced (due to the density of the mass) that it was cancer and prepared me for a mastectomy.  It turned out to be benign and the doctor told me so in the operating room.  He had met me as an intelligent mature young woman.  However, when I awoke in my hospital room, I was so scared that I climbed under the bed.  The nurse and surgeon found me there and got me back in bed.  I was a total child.  The surgeon kept asking me what was wrong with me and said if I continued to act like that he was going to call a psychiatrist.  I was released from the hospital but it was too late.  I went into a very intense episode.