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Anyone With Siblings Who Also Have Narc?


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#21 sunnydaysc6111

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Posted 22 July 2012 - 08:46 PM

My whole family has narcolepsy. I am a 49 year old woman. Have had narcolepsy as far back as 3 or 4. My mother did. My son Jason who passed away at 18 did. (Single car wreck, no reason. Maybe feel asleep?) Another son who is 25. ( His idential twin brother doesn't) and my 14 year old daughter. My daughter had what we know now to be a hh back in Feb and told about it at school and ended up being hospitalized/committed for a week and on strong anti phycotic drugs. Very very bad time. Just now getting that straightened out. My sister is suffering through alot of problems including what looks like mental health issues. I feel very strongly she probably has narcolepsy and could be enjoying her life much more if she would just get tested. I was diagnoised in my early 20s as depressed. I know now it was the undiagnoised narcolepsy. I have been taking dexadrine for over 8 years now. Worked very well up till about Feb when all that happened with my daughter. I take 60 mg daily. I have had 3 big life shake ups and at each one my narcolepsy symptoms increased. I don't have severe falling down cataplexy. I experience some muscle weakness. I do have sp, hh, and very vivid dreams. I am usually so tired when I finally get up in the mornings. I have dreamed/worked all night and wake up several times an hour. I am going for another sleep study in 2 weeks and I want to try xyrem.

#22 thecatnapper

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Posted 24 July 2012 - 09:34 AM

My daughter had what we know now to be a hh back in Feb and told about it at school and ended up being hospitalized/committed for a week and on strong anti phycotic drugs. Very very bad time. Just now getting that straightened out. My sister is suffering through alot of problems including what looks like mental health issues. I feel very strongly she probably has narcolepsy and could be enjoying her life much more if she would just get tested. I was diagnoised in my early 20s as depressed. I know now it was the undiagnoised narcolepsy.


Hi sunny, I see you are from NC as well! I'm so sorry to hear about what your daughter has had to go through but at least they caught it early and she doesn't have to spend years going in and out of the psych ward because of misdiagnosis. I'm willing to bet that at least 25% of the folks that are sitting in psych hospitals as we speak are actually people with narcolepsy. The truth is probably that the numbers are much higher. It actually makes me sick to think about it because I know of at least 2 families that have been split up because the Mom was diagnosed as Schizophrenic. In both of those cases these ladies had hallucinations late at night or around other times of sleeping which is highly suspicious to me. More research and education is definitely needed. Because of what I've experienced I no longer believe that "mental illness" is it's own separate entity. I now believe that most behavioral symptoms are symptoms of much more complex physical issues and more needs to be done to help these patients instead of just putting them on mind numbing pills that don't accomplish anything.

I'm going in tonight for another sleep study and hopefully having an MSLT tomorrow if I can sleep enough tonight. I want to get on Xyrem too because I've tried Nuvigil, amphetamines, and a variety of meds to help me sleep with no luck. I don't want to have another study but I pretty much have to I guess....yuck! Good luck to you :)

#23 sunnydaysc6111

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Posted 28 July 2012 - 08:21 PM

Hi sunny, I see you are from NC as well! I'm so sorry to hear about what your daughter has had to go through but at least they caught it early and she doesn't have to spend years going in and out of the psych ward because of misdiagnosis. I'm willing to bet that at least 25% of the folks that are sitting in psych hospitals as we speak are actually people with narcolepsy. The truth is probably that the numbers are much higher. It actually makes me sick to think about it because I know of at least 2 families that have been split up because the Mom was diagnosed as Schizophrenic. In both of those cases these ladies had hallucinations late at night or around other times of sleeping which is highly suspicious to me. More research and education is definitely needed. Because of what I've experienced I no longer believe that "mental illness" is it's own separate entity. I now believe that most behavioral symptoms are symptoms of much more complex physical issues and more needs to be done to help these patients instead of just putting them on mind numbing pills that don't accomplish anything.

I'm going in tonight for another sleep study and hopefully having an MSLT tomorrow if I can sleep enough tonight. I want to get on Xyrem too because I've tried Nuvigil, amphetamines, and a variety of meds to help me sleep with no luck. I don't want to have another study but I pretty much have to I guess....yuck! Good luck to you :)


Hi Catnapper, How did your sleep study go? Did you hear anything yet. I went and picked mine up from 8 years ago and just wondered about the #s. Would love to hear of some others numbers.

#24 thecatnapper

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Posted 31 July 2012 - 07:44 AM

Hi Catnapper, How did your sleep study go? Did you hear anything yet. I went and picked mine up from 8 years ago and just wondered about the #s. Would love to hear of some others numbers.



Well, I was able to sleep most of the night even though I woke up multiple times. I think I fell asleep during 3 of the naps during the MSLT. I'm supposed to go back to the doc on next Tuesday the 7th but I'm broke and don't have the money to pay my co-pay so unless they will let me write a post dated check (which I doubt they will) I will have to reschedule so it may be another 2 weeks before I know anything. I'll message you the numbers when I get them :rolleyes:

#25 MacTurner

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Posted 21 September 2012 - 12:06 PM

I don't have a sibling, but there is a strong family history that I am just discovering. I was diagnosed in 2006, and my 10 year old daughter was just diagnosed in August. My Doctor wants to test my son as well because he's always had bad nightmares and has been diagnosed with ADD, which often mirrors Narcolepsy. I spoke with my biological aunt (I'm adopted) today and she said that her daughter, my cousin was diagnosed in 2007. They suspect my grandmother had it, but she refuses to be tested.

I would say there MUST be a genetic component of some kind.

#26 willow

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Posted 21 September 2012 - 11:17 PM

Okay so, I went back to the sleep doc yesterday and he says even though I didn't sleep enough to technically diagnose anything during the sleep study that he is absolutely convinced that I have N w/ C. He asked me to please try one more time to have another overnight study and MSLT in the hopes that it will show clear cut proof "on paper" in order to cut out all the extra red tape as far as getting me approved for Xyrem. He said if I can't sleep again this time, that I shouldn't worry because he'll do whatever has to be done to get it for me.

So here's the kicker and I'll try to abbreviate this as much as possible. I've gone years without getting diagnosed mostly because I was incorrectly diagnosed as Bipolar 10 years ago and I fell through the cracks of the mental health system and all the stigma involved. I tried multiple times with multiple doctors to get some kind of physical diagnosis for my "mystery illness" because I knew that it was not mental but alas, my BS diagnosis of Bipolar disorder was blamed for my sleep issues and other physical symptoms every time. Meanwhile my sister has gone through much of the same thing although her depression has been more severe than mine and she has attempted suicide numerous times. My sister and I are not close due to family dysfunction and haven't hardly spoken to each other in the past couple of years. Well, after the past month of reading posts on this forum I have learned so much about my own symptoms that I never knew were symptoms. Then I started to wonder if perhaps my sister could also have N because she has very unusual sleep habits. She has been in a psych hospital yet again for the past 2 weeks and my Mom informed me 3 days ago that the attending psychiatrist in the hospital wanted her to follow up by having a sleep study believing that she may possibly have sleep apnea causing her to be so excessively sleepy all the time. I am a very private person and had told my Mom not to tell anyone else in the family about my situation until I had a definite diagnosis so she did not tell my sister. When she told me that the doctor suspected she may have a sleep disorder I decided to go ahead and tell my sister so that she could run it by the hospital psychiatrist and see what he thought.

She told him and he was very intrigued and concerned being that there is a genetic component to N and he asked her if I could come in and talk to him about it. So I went yesterday to the hospital after seeing my Neuro and the doctor questioned me about my symptoms and then stopped me when he said that my descriptions were "textbook" quality and he called in a medical student to listen to what I had to say. He is not only a psychiatrist but is also an internist and has extensively studied sleep medicine. He was super cool, which is almost unheard of amongst psychiatrists, and was almost like a kid by how excited he got by my story and told the student to listen closely to what I said because he suspects (just as I do) that there are loads of people being treated for "mental illness" that actually have N. After I explained everything he asked my sister "does any of your sister's story sound like anything you've experienced?" He had already questioned her without feeding her any info and said she had some vague responses and didn't understand what he was asking her. She said YES but not as bad as mine. But, I told her that she's been on SSRI's for over 10 years and that if she does have N that they have most likely been masking many of the tell tale N symptoms. The doctor said that was absolutely correct and that basically she'd been in his words "partially and inadvertantly" treated for N being that some of the same meds treat Bipolar. He kept thanking me for coming and talking to him and said that my sister should consider herself lucky that I'd done all the hard work for her because in all likelyhood no other doctor would have ever picked up on the connections and that N would probably never have been considered if I had not come forward on her behalf.

So he is releasing her this weekend and has made her an appointment with my Neuro as well as a new psychiatrist that will titrate her off of the psyche meds so that she can get an accurate sleep study. It's going to be rough on her because she's already struggling emotionally and she gets terrible withdrawl from going off SSRI's but I convinced her that it will be well worth it if she gets a definite diagnosis and can get on some meds that will actually help her. So, I'll try to keep everyone posted. In the meanwhile I was wondering if any of you have siblings who are diagnosed or suspected of having N and if you wouldn't mind sharing your story.

Hi there, I'm 58 and have 6 brothers and 6 sisters, and 8 of us have Narcolepsy. Not all the same form of it, some of us have N/C and some just N. It was finally traced to my Mothers side, her Mother and Sister both had it, only it wasn't diagnosed and my Aunt took her life in her 20s. My Mom said that people (Drs included) told her she was just lazy. I was diagnosed at 14 and the C came a few years later, my 2 older sisters had already been diagnosed so it wasn't a surprise.
Hope this helps. Willow

#27 willow

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    .I was a surgical assistant until my N/C got too bad to work.

Posted 21 September 2012 - 11:26 PM

I have just one other thing I want to add. Like I said 2 of my older sisters were diagnosed before I. I tried to hide the sleepiness and night disruptions, because I didn't want to be weird like my sisters. Then one day in history class I fell asleep and fell out of my chair, the jig was up!

#28 thecatnapper

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Posted 22 September 2012 - 04:38 PM

I have just one other thing I want to add. Like I said 2 of my older sisters were diagnosed before I. I tried to hide the sleepiness and night disruptions, because I didn't want to be weird like my sisters. Then one day in history class I fell asleep and fell out of my chair, the jig was up!



Wow, looks like more and more folks are showing up with strong family histories of Narc. It's been several months since I started this thread. My sister was gung ho at first to go and see the sleep doc but once the new wore off of the subject she's just pushed it back to the dark corners of her mind and is content to do nothing and continue feeling like warmed over death. I did my part in trying to help her. I'm not going to call and make appointments and take her to them because that's her responsiblitly. I've been talking to my nephew a lot about it and I think I'm getting through to him. We were sitting at the table one night and he started laughing really hard and his head dropped and he started drooling. I was like "see that's cataplexy!" He's thought about it since then and he told me that he's thinking about seeing a doctor now. I told him to go ahead and get it taken care of while he's young because he doesn't want to end up losing everything like I did because I didn't have a diagnosis for so long and then couldn't work anymore when it got so bad. I don't want to see him go through the same things I have. He starts EMT training next month so we shall see if the fatigue and insomnia hits full force once he's back on a school schedule.

As for me, I've finally been approved for Xyrem after nearly 2 months of miscommunication between myself and my doctor's nurse. I will not be able to get it for another 2 weeks when I have money to pay for it. I'm keeping my fingers crossed that it will help me. My brain MRI was negative as far as an MS diagnosis so I'm very happy about that even though my mysterious auto-immune symptoms persist. I hope everyone else is doing well!