Causes?

Laura - posted on 03/09/2009 ( 5 moms have responded )

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Has anyone had trauma in their life, or a family member with similar DX?

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Bonnie - posted on 08/15/2009

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I have a loose theory to add, Laura. Medically, they attribute narcolepsy to a DNA/brain operation glitch. Though it's less sure than many would like to believe. It's the part of your brain that controls hunger and sex drive, too. There has been more study about a possible auto-immune response. Though I'm with you on the rough row to hoe in life, I don't think it's associated for me. No one else in my family has narcolepsy, but my mother had rheumatoid arthritis and a few other auto-immune diseases, as does my father, and my brother has a severe case of OCD, which they are also beginning to tie to an auto-immune respone. Medically, in addition to narcolepsy, I also have sleep apnea, fibromyalgia, degenerative spinal disease, and high blood pressure. I'm also a very big woman, which is likely the cause of some of my other conditions, but I also suspect comes from years and years of sheer exhaustion (maybe even that hunger response, too). When I look for the origin and connections, for me it's that auto-immune response.



I was diagnosed later than most, 30ish, when I had an "episode" while driving 80 miles an hour down the freeway. I was able to get stopped and had passengers who took me to the hospital. After 10 days in the cardiac unit, I was released with the diagnosis of gas and anxiety. I could have spit nails. (By the way, no high blood pressure even then.) About four months later, I had a sleep study and MSL test that nailed the narcolepsy. I have strong hypnogogic dreams and paralysis and the daytime sleepiness and occasional, open-eyed dosing, but I do not suffer as much from the cataplexy as others. Though, I am noticing an increase. It could just be a better understanding. I can trace narco symptoms back to about age 12; it explains so much. ; ) My grandpa used to call me "horizontal."



I've gotten paperwork to donate my beautiful narcoleptic mind to Stanford Medical when I'm done using it. Maybe we can help to inform the next generation.



Additional crazy theory...I think we might be bear mutants and this thing which we fight so hard against is simply hibernation. (They think hibernation is stored in a bear's brain in about the same place that narcolepsy is in ours.)



It's so nice to have found this community. I've not ever known another woman with narcolepsy, just a couple of men.



And Laurie, if you can give that list and then LOL, you are the woman!

Laura - posted on 03/10/2009

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Laurie, I feel your pain. I grew up in a home of pain and loss. My brother died as a baby and the only time my sister and I saw him was at the funeral. I had some bad things happen as a child also. When I was an adult i married a few abusive men. I was beaten around etc.

Two years ago I called my husband Mike who by the way is my wonderul husband of two years, and I told him I wanted to run my car into a tree. I could not remember anything, I was confused and severely depressed. I was in the hosp for about 2 wks. They DX me with PTSD, SAD, Severe depression, I was having some kind of seizure like activity that would cause my to thrash in bed so hard that I would pull muscles.

My symptoms have been getting worse through counseling and I was just wondering if trauma could have contributed to that?

I do have a first cousin with severe N with C also.

Hope we can keep up, I will add you to my circle.

Thanks for answering. I will keep you in my prayers.

Laurie - posted on 03/09/2009

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Well, Laura, I usually don't share much personal information with people I don't know, but I'm willing to make an exception. My father was an alcoholic. My mother was too, in addition to being addicted to prescription meds. She also suffered from severe depression and committed suicide at the age of 42. My mother abused me physically, mentally, and emotionally on a daily basis. I was sexually abuse by my step father from the age of 11 until I was 15. I married at 18 and had 5 children in 7 years. I lost my 4th child to Trisomy-13 only moments after her birth. I was married to an Air Force pilot and lived all over the world. My husband and I divorced after 25 years of marriage. I lost my first granddaughter to Trisomy-13 when she was 3 days old. In addition to narcolepsy I have heart disease, essential tremor, depression, seasonal affective disorder, chronic fatigue syndrome, arthritis, and fibromyalgia. This is sort of the condensed version...lol. I hope you will share some of your life with me too and also any other knowledge you have about narcolepsy.

Laura - posted on 03/09/2009

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Well, something physically or emotionally traumatic that might have happened in their past. I was just curious about there being a possible connection that we may all share as a contributing factor.

There are actual physical characteristics that all people with N share, but did we all have something that may have happened in our past that may make our symptoms worse?

Laurie - posted on 03/09/2009

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No one else in my family has narcolepsy. Can you give me an example of what you are referring to when you say "trauma"?

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