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Out Of No Where Onset On Narcolepsy

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#1 veronica



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Posted 12 September 2012 - 08:54 PM

Hello I am 36 and have been dealing with Narcolepsy since 2008. I will try and give a little about my onset and try to keep it short as possible. Before I took sick with this I was a manager of a hair salon, full time student, and mother of 4, who could go on 4 hours sleep just fine. I had been noticing I was extremely tired at work to the point I felt I was dozing off doing someones hair, having trouble driving home without falling asleep at the wheel. I would get home and crash but not for a long period of time.If I would laugh or get emotional I would tell my husband my whole body felt tingly and my head would drop. In august at my daughters birthday party I had laid down for a nap and when I woke up I could not move, I tried to yell for help but nothing was coming out right. My husband then heard what he decribes as more like moans coming out when I tried to talk. I was taken to our local Hopsital and of course Nothing was wrong with me. After several visits to my family Dr. and a few more to ER I was finally sent to see a neurologist. After being tested for anything and everything my last to test were MS and Narcolepsy. I opted for the Narcolepsy test because that was a blood test and sleep study, and not a spinal draw. My results came back that I was positive for both genes for Narcolepsy, the one being hereditary, I still do not know where this came from. I almost for got to mention I have eppstein-barr and I have every symptom of this illness, Narcolepsy, cataplexy,vivid dreams,sleep paralysis,catatonic functioning. I have been on every medication that is used for this illness and for a while they seem to work and then after about two to three months they stop working. I have seen 6 or more specialist in this field and no one can seem to help me. I was told by one that they would either they would find a drug to work for me or kill me trying. I was also told I was the 1 in thousands the meds did not control the illness. Since 08 I have had to have a hystrerectomy,skin cancer removed over several places, and most recent found out that I am insulain resistant which could lead to making me a type 2 diabetic. I have a great support system being my husband and my kids so this helps me get through most of my days. I do not go to many place do to the cataplexy making me fall down in public and I get embarassed...... I have read some of the other post and most seem to only have a few of the symptoms of this illness and not all of them. Is there anyone who has all of them and how or what do you take to deal with them? Is there anyone who has been diagnosed with insulain resistant due to the narcolepsy? Or is there any other illness that anyone has been diagnosed with that comes for having narcolepsy?

#2 Heidi L

Heidi L


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Posted 18 September 2012 - 11:09 AM

Yes they will kill you trying to solve your problem with drugs.
And this place is a completely financed by drug companies so don't expect any different answers here.

Narcolepsy is an allergy to gluten. As long as you continue to eat gluten no drugs will overcome your symptoms.
Please read my research. I had N for forty years. Have now been in remission for over five years.

#3 SleepyRaffie



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Posted 18 September 2012 - 06:30 PM


I have all of the symptoms of Narcolepsy and that (I think) is fairly common. I am sorry to hear about your difficulties with medications. I am still working on getting mine right. Xyrem seems to be helping.

Gluten free seems to help some people. I did a gluten free diet for an extended period before I knew what was wrong and unfortunately it did not help me.

I hope you are able to get it worked out.

#4 corey91386



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Posted 25 September 2012 - 07:38 PM

Sorry to hear about your troubles. I was an active male up until about two years ago when the narcolepsy really sank in. I used to stay up all night cramming for exams. Stay up partying, and wake up early to work out. I was invincible in my mind. Then one day I woke up from a nap and have been dealing with this ever since. The doctor told me that I showed some early signs as a child as I could fall asleep fairly easily. Now the symptoms are awful. Im the type that cannot sleep but needs too. These disorders really put things into perspective. Your life can really change overnight. I never believed it. Obviously now I do, and still have a hard time dealing with it. I hope everything works out for you!