Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
I have been diagnosed with Narcolepsy and Cataplexy for about 8 years now, I can say Narcolepsy with Cataplexy really has sucked in my life, as well as sucked alot of life out of me. I am trying to learn and understand.
I have a Sister 13 years older than myself, we never lived in the same home after I was 5, but have had contact sporatic over the years, until now, My Sister got sick, and nearly died, complications of diabetes, she was bed ridden over 8 months, spent 3 months in the Hospital, never even starting to recover, unable to walk, or care for herself, I chose to care for her in my home, and withen a month she was back on her feet and stepping forward (Thank God!)
The strange thing is I think (pretty sure) I am watching her suffer from Narcolepsy too, is it even possible? I am (HLA) DQB1 positive, I think that means it's genetic right? is it the same for all of us? I watch her fall asleep mid conversation, eating, when we are out, fall down the stairs after her knees buckle, confused just like I was, it's odd to watch, after being the one watched. Could Narcolepsy symptoms mimic those of Diabetes? is there relationship/connection to Narcolepsy and Diabetes? She suffers with Night terrors, sleep paralisis, and pretty much just like me, I never even thought of it before, and being she is older, she is telling me how our Father did some of the same stuff, I had not noticed or connected. Learning our Dad was the same as well, should we mention it to her Dr. or will we look like crazy people trying to diagnose our entire Family? or wait until she has completely healed and request a sleep specialist and say nothing? We also have connected our other full Sibling, a Brother: as suffering with almost the same issues. I hate to cause a Family Histeria for nothing, but it feels like it may be something... I am wondering if any of you can give me some insight, advise, pass along some knowledge my way please.
Thanks! Mijken sorry for any spelling or grammar mistakes, my spell check wont work. and If I don't post before the blue screen of death pops back up I will need to write this for the 4th time.
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I haven't written in my diary on my computer since May because I thought that my computer was dying. I got away from writing but my computer is hanging in there. I think that I will start writing in it again. It's so therapeutic.
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First, I hope everyone is doing well, and continuing to fight that good fight! Keep up the great work on yourselves; I'm rooting for all of you!So, I started doing therapy at the beginning of the year, when I was in my most depressed state, but with my therapist, I made big changes and steps in the right direction. But, over a month ago, she couldn't take my insurance anymore, and I had to stop...
I had to look up, "(HLA) DQB1 positive." It is a new-to-me body of research that I have only read about. Thank you for the added exposure.
To my senses, the hardest part of Narcolepsy is that the people who have it don't seem to be sharing information or experience with one another. This forum is pretty typical of my own experience with the effort to share. People come to post one or two questions, the disappear. Zero on-going dialog. What is typical? Where are the differences? We can only glean the research pages and wonder where we fit in to those scientific big word fests.
I come from a BIG family and I am convinced Narcolepsy runs through our family like a freight train, but with the available treatment, etc., it doesn't seem worth the effort of finding out.
You are right, I have been on and off here, for years, but I know there is someone who is like me, and can relate, so first; Thank You for responding! I search for answers even if I get confused. I am so thankful you agree, because I am 100% with you on the runs through the Family like a freight train, I didn't add all the additional people who I am betting have it in the Family, and don't have a clue, Heck; when my Dr. sent me to a sleep specialist, and she said the word Narcolepsy, I left, mad too. I told my Doctor " that stupid specialist said I have Narcolepsy", don't send me to idiots like her again! she simply said, well, I really like her, and she knows her stuff, and started me on adderall that day. Good thing we had a 10 year relationship, or I bet I would have got the boot. I believe I have 2 Sons with it, and my sister has 2 Sons with it, but we don't get into it with them. I do however think I should have my Sister see someone, like me; her Cataplexy, shall i say symptoms, have caused her some serious injuries, a couple months back, she fell down my staircase and split her head open, blood was everyplace, and she tried to hide it, and swore my son to secrecy, I saw some blood spatter she missed in her cleaning, and I spent a day checking my dogs from head to toe, in side their mouths, there pads, toes, like a nut! bathing, brushing, them searching for a wound, nope, checked my Husband and Son and Sister, I bleached and cleaned, and by now I have been perplexed a week, then she told me! she did not want to go back to the Hospital, and was too afraid to say anything, I would have taken her, so she was right, but I have to teach her to trust me, her knees buckled, and she was clueless why she fell, I think it's Cataplexy, I see her bob up and down like I do, my nephew laughs and says we do the same thing, look like two old ladies who tip toe through the tulips and fall from exhaustion, as funny as it may sound, he made me think.... I have fallen and broke ribs, collapsed a lung, broken teeth, had so many head injuries, I even believed for years someone must had broke in my house and hit me in the head with a bat, I fell and knocked my own self out when I landed, and was talking to myself the whole way down... "I thought good thing you are asleep or that shit would have really hurt".
I am working hard to get it, it's such a crazy problem, I read about Dr. Mignot at Stanford, in Ca. contacted them with questions, and was ready to donate my freaking brain when I die for some help and education on this.
http://med.stanford.edu/narcolepsy.html,
his staff always e-mails back, but he's too busy to reach out lol, so I am keeping my brain! maybe he can have my Sisters, if he ever can take 10 mins to answer a few questions, our brains surely aren't cheap right?
I hate the big word fests, and need it to be dumbed down a bit, I need to understand and learn, and again you are right, it's almost not worth mentioning anyway especially with my own insurance coverage, these Doctors have set me back over 25 years of costs, study, time, sickness, and made me sick again because the want to re-diagnose me, and not read my records, I have asked for them for years, since my 2 good Doctors left, I have such fragmented care, it's not care. I may not be a Dr. but I am not a idiot! I was sent to a RA specialist, who said she needed to see if I had any autoimmune issues, I said yes I do, I was told Narcolepsy is a autoimmune problem, she said oh, No, it's not... confused I looked it up, so I gave her my Sleep Doctors card, and suggested she call her and find out, or read my records, because I was diagnosed with lupus, and hashimoto's, both autoimmune problems hitting in the same spot in the brain, I can't trust so many different opinions, I wish when Doctors graduate, they can't hid behind the word PRACTICE, they have a fine diploma, that says they know, they passed, but have no liability in causing any of us significant delays in treatment, and recently I have been getting " I'm not comfortable prescribing this and that.. I have been on working meds for 15 years, and Boom bye bye, no explanation, no reading my records or anything, we need to be made comfortable, I think man, if we could just say Thanks, you are not a Dr. you are fired! I don't even mean for opiates, or that kind of stuff... no motrin, hormones cut in half, no more water pills, my blood pressure is sky high, no more mood stabilizers, no muscle relaxers, = I am not comfortable, and I paid how much? to be thrown into a place where I get manic, have anxiety, can't sleep, and the night terrors come back back to where I was before I was diagnosed several times already. I try to tell them, If I could bring the Dr. into a dream, I guarantee, they would suddenly find compassion, and get it, I would say sign me up as a guinea pig for that. Well, I don't nee to fuss, and I Thank You more than I can say, I guess I will take it as it goe, and just study more. Please friend me if you ever need to talk, I can listen too. Even if you can't tell.
Thanks Again....
Mijken