My husband is currently having an extended episode but he has been complaining of continual headaches during this episode. It is currently up to 26 days and we wondered if other KLS sufferers experience headaches during their episodes or if this is unusual?
-C

C-

During my episodes I did not really have true headaches (like you would get with a cold/flu) but I have heard others note that they have experienced headaches.  I will say that sleeping constantly various locations around the house - floor, couch, etc did occassionally result in my head hurting a bit but more from just laying on it all the time. 

Hope your husband comes out of the episode.  How long has he been in?

Thanks. I was not sure if the headaches were something else to worry about. He has had a further neuorological exam since my post with no further conclusions. He has been asleep now for 31 days consecutively. This is the longest duration within a single episode he has ever had.
Thanks - C

ive talked with a lot of people that complain about headaches...sometimes while going into an epsiode, and for some, its a sign of coming out of an episode… ive had a lot of headaches during episodes, for reasons uknown...whether its just from dehydration and low blood sugar or something becuase of not eating/drinking right, or just as a side symptom, who knows...but i wouldnt say its ‘uncommon’ but then again, this IS kls we are talking about....  good luck

My daughter had frequent headaches during her last extended KLS episode. We did find that ibuprofen sometimes helped relieve the headaches. She sometimes described the headache as a pressure. I hope your husband is feeling better.

Hi,
I’m just emerging from an extended episode of KLS. Thanks for your helpful comments regarding headaches. This is the first time (as far as I recall) that I’ve had such bother with headaches. My wife tells me I’ve been complaining about them for the past month whilst ‘out of it’. I can relate to the description of ‘pressure’ as opposed to sharp pain. This past year I’ve had two major episodes lasting much longer than usual. This last bout started on October 1st. Still a bit spaced but so relieved to be coming out of it! David.

Great to hear that you are out of your episode.  I never had an episode that long - typically 12-14 days but the couple that went a few days longer were the most frustrating.

Thanks. Its always good to resurface - relief! Not least for my wife. My episodes had typically been 10-14 days up until these last two extended ones.  Disappointing - as I was really hoping for them to recede altogether as has been the case for you and others I’ve read about. Still, I’m glad to be thinking straight again & getting my strength back - no more headaches either!

I get headaches during an episode - particularly bad when I am coming out of the sleeping phase I get, but this time, looking back, I noticed before I got ill short-lived pains in the middle of my head - literally only lasting for a few seconds and then going, so I didn’t think too much of it, and so am wondering if this was a warning sign that either is new to me or that I haven’t noticed before.  (normally I have about a weeks warning of gradually feeling more ‘dreamy’ day-by-day but this one I felt ‘dreamy’ one morning, it wore off and then the next day I was in an episode)

Having headaches is a very consistent symptom for my daughter during her episodes. She says her head hurts and points to the middle back of her head. She has participated in a British documentary on neurological illnesses with a one hour focus on KLS. One of the benefits of participating in this documentary was the many hours of brain scans that were conducted on her brain while both ill and well. During the scans when ill, the Neuroradiologist found a 15 to 20 percent reduction of blood and oxygen going to the thalamus region of her brain. I asked if the reduction of blood and oxygen could be causing the headaches and the doctor said that was entirely possible.

Yes indeed - headaches for me are a warning of when I’m about to lose it, and crash. It’s embarrassing, I become like a little child who needs to be put to bed! Irritability and narky-ness is me! They go away when I fall asleep, but are a good forewarning, and let me prepare before I crash in front of other people.