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A narcoleptic Episode


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#1 cattar

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Posted 06 October 2007 - 08:34 AM

:roll:
My son has been diagnosed with narcolepsy and he is 22 yrs. old. Prior to this he was healthy without obvious evidence of any problems. As a child he did have sleep walking and probably hypersom. as a teenager he did say he would have black out spells for about a minute at a time. But not that often and we didn't really think much of it. It was during a high stress time and as a teenager we didn't observe the episodes. When he was working full time as a correctional officer and going to school full time- without much sleep and very interrupted sleep cycles, we noticed he was starting to have problems. He began having seizure like activity. I am a respiratory therapist and work in sleep also- I thought sleep apnea at first- we got him in for testing which showed narcolepsy. The problem is that we have tried ritalin and provigil- but he has a rare case in which he will have prolonged periods of sleep but is able to act out various different activities while in a sleep state. Some a bit dangerous. You can't arouse him - he has sleep paralysis and cataplexy- but not for short periods of time. Can be for hours. We currently go to a neurologist and have a referral to Duke University in Dec ( soonest appt). He is now off work on disability and they are telling him he won't be able to work in a prison system period. While in these episodes he can act out very vividly whatever is in his mind and is very uninhibited in doing so. Sometimes will go from acting out and believing he is a young child sometime older, and at times just appears to be acting out whatever is in his dream state. Does anyone have any similar reactions or a type of narcolepsy like this. Our dr. do not have any answers- and I and my daughter in law are amazed how in depth this diagnosis is. He is currently on Provigil and it does fair- however he still has episodes. Very much induced by stress.
He also has peripheral vasoconstriction where the legs and face will become discolored from what appears to be from lack of oxygenation to those areas. Help!!!! [/i] :shock:

#2 rogerbebwa

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Posted 06 October 2007 - 10:40 AM

I read your posting and could have written it myself about my 25-year-old daughter. She's gone from being an active, involved teen to a young adult consumed by narcolepsy. You name the potential symptom and she's had it. She even has the long episodes where often she reverts to her childhood -- and I hadn't heard that from anyone else before. Her hands and feet get cold, discolored and numb at times. She also has periods of rigidity in her legs, arms, feet and hands. She too is on disability. We've had her on various medications and she's currently on a mix of meds and has maxed out on most -- but doesn't have significant improvement. She's gotten to the point where it's extremely difficult for her to concentrate and focus for any period of time. Three years ago we got her a service dog. He's fantastic at helping her avoid full cateplexy as he alerts her beforehand and has save many falls. I don't have answers, but am happy/sad to interact with others in the same position. Narcolepsy isn't always as manageable as we often read.

#3 gister63

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Posted 06 October 2007 - 01:25 PM

Hi I just read your post and two things occurred to me- It's been my experience that most neurologist not speacializing in sleep disorders will be unprepared to treat any narcoleptic and I would urge you to find a sleep speacialist. I too was going to school full-time and working full-time job at the time my symptoms began(adult onset) for me I was 33yrs. I had no ins. and was unable to see sleep specialist, the year was 1997. I finally found a sleep specialist in my area who would see me and bill me for part of the fee. All I can say is that the difference in the quality of the treatment was night and day, esp. in terms being able to get appts. in a time frame that is necessary to deal w/ the nature of the illness.
Also, you should check the website www.talkaboutsleep.com it has been up and running for some time and has a very active bullinten board.
Hope some of this is helpfull.

#4 rogerbebwa

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Posted 06 October 2007 - 01:53 PM

Thanks for the post! I totally agree with going to a sleep doctor -- fortunately -- and unfortunately, my daughter does go to a sleep physician and we have a fantastic one. There are those exceptional cases out there that don't respond well to meds. We all just need to keep supporting one another and keep each other informed as new treatments emerged. I'm happy you are responding to the meds. Thanks so much for sharing!

#5 Lindsey

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Posted 07 October 2007 - 02:59 AM

You said you he's tried provigil, have you tried xyrem? I was just taking provigil and imapramine (for the cataplexy) last year, but I was still having a lot of trouble. Over the summer my neurologist put me on xyrem, and though I still need the provigil to even try to sit through class, I have a lot less cataplexy, and it regulates my sleeping at night which might help your son.

#6 cattar

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Posted 07 October 2007 - 10:29 PM

smile.gif Thank you all for your replies. This board is a God send. I keep telling my son and dtr in law that we all need to get involved with a narcolepsy group; however; I work in the sleep field and there isn't one here. I am extremely thankful to have others to talk to about all of these things, that are very new to us. My son has seen a sleep specialist; however; he was also a physician that I worked with and suggested that he definitely been seen by a large researchig facility. So far they have him on only the ritalin and zoloft ( which I don't think is working well) then now the provigil and zoloft. Ritalin was ineffective, and the zoloft I don't think is the best drug for him either. Thanks also for the website it was very helpful.

#7 luckychi_3

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Posted 14 October 2007 - 12:11 AM

I have experienced some of the same symptoms that you describe. It is very frustrating to to go to your dr. and they don't really understand what a person is going through especially if you have a rare case. I was a vewry active person that ran multi-million dollar restaurants and retail stores, injured at work by a commercial dolly falling and striking me in the head, it took two and half years for anyone diagnosed me having narcolepsy, it gets very frustrating when people think you are exaggerating your symptoms. My life has changed so drastically since this accident, there is hardly no cases of incidents where narcolepsy was triggered by a head trauma.Id love to hear from others that have had a head trauma that triggered narcolepsy.