Almost a year ago I joined this group, and haven't taken advantage of it as I think I should have. I did find out the results of my sleep study. Turns out science has come a very long way in testing for Narcolepsy since 1998, when my first sleep study was done. This time I found out the doctors can request a blood test to see if Narcolepsy is stressed induced or if it's genetic. Well, mine is genetic. My question for everyone here, is does anyone else have the genetic problem??? I have concerns for my family and children. I'm almost 100% sure which side of the family I got it from, and find it hilarious no one on that side of my family short of my Grandmother who has been gone for 3 yrs now, seems to think it's possible, even though I have the test results to prove it.....denial is deadly... While I've stopped trying to talk to the family members about it (cousins auts etc.), my immediate family only have a very vague understanding. Only thing they really worry about is me falling asleep and trying to understand my depression, anxiety, general bad mood, stems from this as well --- that portion has been more difficult.
Mine is not genetic. Great Blog Post. Thank you Erin !!!
Dear Erin, I, too, have the genetic marker for narcolepsy. It has plagued me all my life, making up for lack of sleep on the weekends. Most of my family and friends thought I was just lazy but when I was awake, I was a dynamo -- cooking, cleaning, etc. I feel bad that one of my sons has the illness, but he is also bi-polar and has been hospitalized due to hallucinations and anger management. Since he was a child, he never slept at night -- frequent night awakenings, tired at school and falling asleep. It was difficult to explain these symptoms to his teachers because I only got him tested at age 19. His snoring was keeping the whole house up. He started CPAP therapy, but still struggles with cyclical bi-polar and anger. He is also developmental delayed so it is hard to explain his illness to him. My daughter and other son have not shown any symptoms yet, thank God! I suffer from extreme anxiety when I have to be in confined spaces like going to a concert or having dinner with more than 2 or 3 people. I had to leave my job when my symptoms worsened over time. I am now on SSDI with the help of an attorney who forced me to have the Multiple Latency Sleep Test and the genetic testing. I really just could not function anymore at work. I was falling asleep on the phone, typing gibberish, acting weird. I am currently on Effexor and Lamictal which seem to help with mood and Clonazepan and Requip for sleep. I hate taking all these pills and it took a very long time to find the right mix. While I was working for 10 years, I relied on Effexor and Provigil which really helped, but then suddenly the Provigil stopped working. That's when I started taking Nuvigil which works on a different part of the brain and I started to have daily panic attacks. As far as family and friends go, there are materials you can get from your doctor explaining the illness but don't expect too much. Most people think if you go bed earlier, your symptoms will just magically disappear! We know here how it is with narcolepsy. I hope you are getting the support and comfort you need to accept the illness and carry on.
Dear Erin, I, too, have the genetic marker for narcolepsy. Are you of Irish or Scottish descent? Another culture where narcolepsy is prevalent is in Japanese people. Once my sister started to show signs of it in her twenties, we compared the severity of the symptoms and the nightmares and the weakness with each other. I always thought she was overdramatizing her symptoms until my medicine stopped working. I was taking Provigil on her advice and it was great. Then, I tried Nuvigil. Then, I started having more and more frequent panic attacks. Like, everyday panic attacks that were horrible. Now, I am taking Effexor with Lamictal and in order to get a few hours sleep in the evening, I take 2mg. of clonazepan. I still need the Xanax for panic attacks because I have become extremely fearful of going to crowded places, shopping alone, driving too far, meeting new people.
Because my sister was diagnosed and started treatment after her second child, we all knew what the illness was and knew she didn't have any control over it. Me, on the other hand, had more of the dream hallucinations, sleep paralysis, depression and anxiety. And, I always had to go out into the world to work. So, I had to hide my symptoms and became very adept at it. My sister is an artist and she never worked outside the home.
It is possible to have narcolepsy without having one of the associated genes, just as it is possible to have the genes without ever actually developing symptoms. This is a tool that is used to link cataplexy with a diagnosis of narcolepsy. The genes just give you the propensity to develop the condition, and there are other causes that can lead to the damage of the orexin cells. A positive test means strong diagnosis for N with C.
May I ask what blood test you are talking about?
A spinal tap can give a high indication of Narcolepsy and the HLA blood test is also effective in showing the possibility of Narcolepsy genetic connection, but it is estimated 20% of the general public would be the same so it isn't a good test.
From what I can find it is still personal history and the MSLT test.