KLS Foundation Discussion Forum

Welcome to puberty: Longer Episodes and more frequent

2008-10-08T12:25:36Z

What a “welcome to puberty” my poor daughter has had. She’s now 12 years old and this year she started having her period. Until now, we thought we had her KLS under control - if you can call it that. Through a treatment program that includes Provigil, Trileptal, and strict bed times, she was experiencing only 2 episodes a year always late December and January. They usually lasted 7 days like clockwork for the last 5 years.

This year, though, she started her period. They are very irregular and the last 2, only 2 weeks apart, had incredibly heavy flow. So much so that she was hospitalized and put on IV estrogen to try to stop it. But, as distressing as that was she now goes into a KLS episode within 10 days of the end of her period in all but one case. And, to make matters worse, they are lasting 2 weeks.

When she was released from the hospital, the doctors put her on birth control and, in hopes that it would help the KLS, she is to skip the placebo week and start the next pack so that her levels remain constant. Their thinking being that the drop in estrogen levels that triggers the period to start may also be triggering the KLS. Between KLS episodes and the excessive blood loss she has missed more than half of the school year.

Have any other girls experienced this?

do you leave the house during episodes or recoveries?

2008-09-15T11:52:18Z

i was wondering if any of you leave the house during episodes or recoveries???

when i have my episodes i won’t leave the bedroom. then when i start to recover
i start slowly moving on to the living room. then towards the end of the recovery i start
sneaking out into the backyard very very late at night in the protection of darkness when
the chances of being seen by people is very low. then i gradually start sneaking out onto the back steps during the day if i don’t
see or hear anybody outside.

then eventually i’ll go on car rides with my wife.

but i don’t go out by myself until i’m completely “normal” again.

do others act like that, or do you still go out during episodes/recoveries???

do some of you also become afraid to be around other people during episodes/recoveries???

how do you deal with it??? i’m always so afraid because i can’t tell if somebody is talking to me or if i’m just imagining it. or
i can’t tell if i’m actually saying something, or if i was just thinking about saying something but didn’t say anything. i can’t
tell if what i’m seeing is real or if i’m making it up, or if what i’m hearing is real or if i’m hearing something else. it’s so hard
to tell what’s really going on.

oh and my wife discovered that during my recoveries i’m absolutely horrified of uniforms. she said anytime i see a uniform i panic and go back to bed. apparently one time during one of my recoveries i asked her to go for a walk with me very late one evening after it was dark. but once i got to the door i saw an ambulance outside paniked and went back to bed.

BEFORE GETTING A DIAGNOSIS OF KLS, WERE ANY OF YOU MISDIAGNOSED AND IF SO, WITH WHICH DIAGNOSIS?

2008-05-03T18:32:57Z

I have been under the impression that I only had chronic fatigue and depression for many years. I just self-diagnosed myself less than 1 week ago with the KLS. Of course, until I went to a psychiatrist, my F.P.M.D. would say, “you just need to exercise more”. That seemed difficult when your muscles are actually weak from lying in bed so much. I have recently been making an attempt to lift light weights to build up my strength, during my remissions. I got validated more when I sought out a Psychiatrist for help. Now I would like to progress to a physician in my area or state, who is knowledgeable in this new KLS diagnosis? Where on this website can I find such information. Thanks! Donna

UK Documentary-“My Strange Brain”

2008-09-02T18:54:54Z

Hi Everyone! This is Alanna. I was featured in a Bristish Documentary that aired in July. Some people have commented that it was helpful and informative. I feel that this is a good documentary to show teachers, friends, family, etc. to help them understand what a KLS person goes through. If you would like a copy of the documentary please contact me or my mother Diane at rwong2323 at comcast dot net. Hope all is well. : )

-Alanna

MILDER EPISODES?

2007-10-10T13:07:08Z

Hi everyone,
Here it is, autumn. It always was my favorite season. Since 2000 Tara has had an episode every fall. Usually spring AND fall. This time we had made it almost one year, but she went into an episode almost 2 weeks ago. It seems to me, as watching her, they are so much milder then they were when she first got them. The long sleep isn’t as long. She still feels crappy, out of it, and out of control. From my end I see a significant change in the intensity of the episodes. Has anyone else found this to be the case? Let me know. Thanks, Denise

Hey Lori H

2008-08-14T20:52:11Z

It’s getting late and I didn’t want to disturb you before bed but I told you I would update you on Tyler so while I am getting my emails done for the evening, here is a guick run-down.

We got the pH probe results back right away. He had 152 episodes of reflux in a matter for 24 hours. On a scale of 1-10, with 1 being the worst...leave it to my kid to be a one. Met with the Director of Surgery this afternoon at Children’s. His surgery is set for the 9th of September. He’s having a “Fundoplication” done which should resolve his reflux and pukey problem. Unfortunately, or is it fortunately??, he will never burp again in his lifetime. On the other hand, he’s quite excited that it will come out the other end. Typical boy.

As for the “chores” from Dr. M...Neurology still has not set up the appointment for the LP or the MRI. Endo has not called back. He hasn’t had a KLS episode since our appointment so we haven’t done the sleep study or EEG.

Erik is still sore from his accident. I feel like I have three infants around but he has gone back to work on light duty so he’s out of my hair. Tyler is back at school and hasn’t fallen asleep yet.

As for the other test I told you about...haven’t done it yet because I’m too chicken but all the signs point towards positive. Heaven help me!

I’ll give you a call when I am home more than 5 minutes. Take care and thanks for being such a great listener. You’ve helped more than you’ll ever know!

Jillian

What is your experience of the period of unreality that precedes “clearing” or “coming back”?

2008-05-14T12:10:04Z

Are you able to continue working? Are you able to keep track of paperwork? Can you read? Are you able to drive? Do you ever feel as though the “real” you is aware of your confusion and behavior but is unable to change it leaving the “real” you embarrassed and dismayed? If these questions are too intrusive, please correct me.

Any History of Alcohol Allergy in KLS Family?

2008-05-09T20:30:56Z

Do any of the KLS reporters have a history of alcohol allergy in their family? My maternal grandmother was massively allergic to alcohol - both externally and internally. Even one swallow of alcohol would bring on bizaar behavior and physical collapse. If she came into contact with alcohol, she developed an extreme rash and blisters. As a psychiatrict nurse, she was forced to change specialties when Thorazine was introduced because of an allergic reaction to the medication. Has any KLS reporter developed anaphylactic shock in response to an alergic reaction?

PROVIGIL WORKED for me…for 2 and a half days. Then mysteriously stopped.

2008-08-07T18:15:23Z

PROVIGIL WORKED for me !!!!!!! ...for 2 and a half days. Then mysteriously stopped.

It COMPLETELY removed my symptoms, MID-EISODE, in 11 minutes.

It worked for 10 hours the first day. It worked for 8 hours the second day.

The THIRD day, I woke up achey, but OTHERWISE symptom free. I got my menstrual cycle (my period) that day. I thought THAT was why I was achey. THEN AT 2:30 pm, MY SYMPTOMS CAME RUSHING BACK LIKE A FLOOD !!!!!!!!!!!!!!!!!!!!!!!

The Third day was YESTERDAY.

HAS ANYONE HAD THIS EXPERIENCE???????.....thank you !!!!!!!!!!!!!!!!!!!

SUNSHINE

My Strange Brain

2008-08-04T05:50:41Z

The UK Documentary My Strange Brain aired on 31st July 2008 - but for those of you not in the UK you can see it here -

http://demand.five.tv/watchnow.aspx

Hope it works -click on documentaries and it should come up - though not sure how long it is on there for.

Nat
xxx