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Anyone With Siblings Who Also Have Narc?


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#1 thecatnapper

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Posted 30 June 2012 - 05:45 AM

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.

#2 Enginerd

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Posted 01 July 2012 - 06:25 PM

I think my father and sister have it, but I might never know for sure since they both refuse to see doctors...they're just weird. My sister has a lot of similar symptoms and would sleep all of the time if she could; I really wish she'd finally get a PSG and MSLT done. It'd be interesting to see if she also inherited it, and misery loves company... :rolleyes:

#3 thecatnapper

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Posted 01 July 2012 - 11:52 PM

Interesting! I'm curious as to why they refuse to see a doctor. Perhaps their symptoms just aren't disruptive enough for them to deal with the headache of getting diagnosed. I suspect that Narcolepsy is actually fairly common and would be proven so if more doctors knew what to look for and if more patients realized that their sleep disturbances are not normal. I blamed so many other things for years and was shocked when I found out how closely my symptoms matched those of Narcolepsy. I sincerely believed that having worked 3rd shift for 6 years had screwed me up and I'd never recovered from being on a flip flopped schedule. Little did I know!

#4 Enginerd

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Posted 02 July 2012 - 02:43 PM

Interesting! I'm curious as to why they refuse to see a doctor. Perhaps their symptoms just aren't disruptive enough for them to deal with the headache of getting diagnosed. I suspect that Narcolepsy is actually fairly common and would be proven so if more doctors knew what to look for and if more patients realized that their sleep disturbances are not normal. I blamed so many other things for years and was shocked when I found out how closely my symptoms matched those of Narcolepsy. I sincerely believed that having worked 3rd shift for 6 years had screwed me up and I'd never recovered from being on a flip flopped schedule. Little did I know!


My sister has this irrational fear of needles, although if she absolutely has to have blood drawn (like for work) she will, without a problem. She just builds up a doctor's appointment to be something stressful in her head and avoids going, as a result. She has expressed willingness to go for a sleep study because it doesn't involve any painful medical procedures, but she's too nervous to go alone. So instead of getting it taken care of, she just spends her days limiting her activities and contact with people, and sleeping at least 10 - 12 hours per day.

My Dad thinks he knows everything because he's built his life around calculated risks, and therefore he usually ends up being right. This works when it's a field he understands well, or an area of expertise. But when it comes to a topic that he's not familiar with, like medicine, he thinks he's smart enough to do a little bit of Googling and voila--he's an expert! No need to visit a doctor when you cure your symptoms with healthy eating and vitamins! A huge part of the problem is that he was hired by the company that bought modafinil as the first employee to work on characterizing this molecule, so he's spent a looooooong time studying Provigil, Nuvigil, and being involved in narcolepsy clinical trials. In his experience, he thinks narcolepsy tends to involve cataplexy, and because I'm not collapsing onto the floor or passing out in my plate of spaghetti means I probably don't have it. I also think he finds it absolutely ridiculously that he's been working on Provigil/Nuvigil since 1994 and I was suddenly diagnosed with narcolepsy in 2011...it is pretty hard to believe, especially when you consider narcolepsy is a rare disease.

He also managed to go his whole life without any significant issues (no car accidents, never getting fired from work, etc.), so I don't think he would ever consider himself to have narcolepsy because he's "made it this far" and he would imagine that would be impossible if he were truly narcoleptic. Yet he drinks 6 cups of coffee just to get through the day, takes naps before he drives anywhere for longer than 30 minutes on a weekend, and has microsleeps to full-fledged naps while sitting in front of the TV or even sitting at the table sipping his coffee (at 10am on a weekend after waking up at 7am). My sleep specialist said that this isn't normal, even in older people. My Dad is incredibly stubborn, though. My family can't even get him to see a doctor about his high blood sugar (his father had diabetes), so I doubt I'll ever get him to a sleep specialist for a sleep study.

I have a very strange family. :blink:

#5 thecatnapper

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Posted 02 July 2012 - 09:35 PM

I was raised by The Adams Family as well.

Your Dad sounds a lot like mine. He became "man of the house" at 10 years old when his dad died and then went into the military after graduation so he has that "suck it up, snap out of it, and shake it off" attitude toward anything he doesn't understand and let me tell ya, he doesn't know much at all about anything remotely medical in nature. Plus he thinks women don't know anything about guy stuff like fixing things and hooking up electronics. I love to prove him wrong and watch him squirm!

I get what your sister is going through though as I have major anxiety having medical proceedures. I don't mind having blood drawn or getting IV's but anything more invasive than that and I have to be practically hit on the head with a sledge hammer to knock me out because I'm so hypervigilant and afraid of being in a situation where I'm conscious but can't control what is happening to me. Even minor things like getting an eye exam or going to the GYN puts me in a frenzy. Luckily I'm not afraid of the dentist and I usually fall asleep while getting my teeth cleaned but that's probably due to having Narcolepsy and has nothing to do with being all Zen or brave...:P

I also have a few armchair doctors in my family. I have an Aunt in the mountains of TN who owns a medical dictionary and a copy of a drug facts book that she bought at Wal-Mart about 20 years ago so whenever someone informs her that someone in the family has a new medical condition she's like "hang on lemme go get mah medical books" and then she's shocked when she can't find the meds they have been prescribed.

Then there's the issue of me having a background in medical imaging with long history of working in hospitals so everyone thinks I should know how to read their studies. I've literally had people mail me copies of MRI's, CT's, and ultrasounds with the radiologist's reports and ask me to look at them and see if I agree with their interpretations. Everytime it happens I do a face palm because I have to remind them again that taking images and reading them are two TOTALLY different things. Some of them still think I'm a doctor because my dearly departed Grandma told everyone back when I was in school that I was going to medical school to be a "doctor of Radio-ology". Those are always uncomfortable conversations when I have to explain the real deal to family members I haven't seen in years when I bump into them. I almost slugged an Uncle at a funeral once because when I explained this to him he said "your JUST an x-ray tech! well all these years I thought you were a real doctor. Whadya do, drop outta medical school?". Fortunately my bro-in-law stepped in before things got ugly.

There's just so much pig headedness and lack of understanding in this world, even among the "well educated". I've had to learn to just give it the epic eye roll with headshake and keep on walking.

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Posted 05 July 2012 - 12:48 PM

I was diagnosed and a year later my little sister got diagnosed with it too. I always make fun of her and say she just got the diagnosis to copy me (we are famous for our fights about who did what first). Then it turned into this weird competition because I never got the nap test done but she did and my mom is always saying "Rachel fell asleep in literally 1 second for one of the naps" So now we compete about who has it "worse".

#7 LauraL

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Posted 05 July 2012 - 06:06 PM

Catnapper,

I just want to say kudos to you for coming to your sister's aid! It can be a risk to speak up when you know that people in your family might not necessarily be supportive of medical issues (I understand that!), but that's great that your sister can benefit from your knowledge and experience.

When I was diagnosed with narcolepsy, I knew only one other person who had it--a guy I'd met on eHarmony several years earlier, dated briefly, and then kept in touch with occasionally on a "just friends" basis. His sister has narcolepsy. It was actually so reassuring to be able to talk with people I already knew who had N, that I briefly considered writing a "success" story for eHarmony. :) Maybe I didn't meet my future spouse, but the online dating thing did provide a very helpful connection. I guess you never know!

#8 thecatnapper

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Posted 05 July 2012 - 10:57 PM

I was diagnosed and a year later my little sister got diagnosed with it too. I always make fun of her and say she just got the diagnosis to copy me (we are famous for our fights about who did what first). Then it turned into this weird competition because I never got the nap test done but she did and my mom is always saying "Rachel fell asleep in literally 1 second for one of the naps" So now we compete about who has it "worse".



Yeppers! This is already happening just as I knew it would and it's been less than one week. I'm one of those "suffer in silence" types so my family actually knows very little of what has actually gone on and how much this has all impacted my life. Even though I can remember specific incidents with pinpoint accuracy as far as date and time, I refuse to play the "who suffers more" game with any of them. I've got plenty of ammunition to win such arguments but I say...why would I? and how would that benefit me in a positive way? I have to admit that the small part of me that is still grieving wants to climb up on a pedestal and point fingers at every person that's ever called me lazy or crazy but I know that is not something that could have any sort of positive impact on my life. Like I said, I care nothing about being the center of attention and when I'm not feeling well, I'm like a cat who runs off and hides to either heal or die alone. Some people are more like pack animals who depend on their group to take care of them. There's nothing wrong with either way as long as you are able to maintain healthy boundaries.Hmmm...I feel a blog post coming on :P

#9 thecatnapper

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Posted 05 July 2012 - 11:02 PM

Catnapper,



When I was diagnosed with narcolepsy, I knew only one other person who had it--a guy I'd met on eHarmony several years earlier, dated briefly, and then kept in touch with occasionally on a "just friends" basis. His sister has narcolepsy. It was actually so reassuring to be able to talk with people I already knew who had N, that I briefly considered writing a "success" story for eHarmony. :) Maybe I didn't meet my future spouse, but the online dating thing did provide a very helpful connection. I guess you never know!



That would be a cool testimonial... "I joined eHarmony to find love but instead I found out that I have Narcolepsy" but in all seriousness, I fully believe that everything happens for a reason and it's possible that you met that person to help you as far as getting a diagnosis and having a small support system. I love stories like that and it's even cooler when many years go by before you find out what the meaning of the connection was.

#10 timmbr

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Posted 06 July 2012 - 10:00 PM

I have recently started the process of figuring out I may have narcolepsy. Only after getting a DUI related to sleep driving am I finally realizing my problem might be sleep related as opposed to ADHD and Depression. I have all the symptoms currently going through the diagnosis process. As it turns out my father is a textbook narc sleeper. Falling asleep while driving and plowing into snow drifts, etc. He has no diagnosis but i believe if here were to get a sleep test he would test positive. It also turns out I have a cousin on my fathers side of the family that is experiencing many of my same problems only worse. They suspect she has narcolepsey too.

I do have one question thought. In regards to cateplexy, how would you define mild cateplexy. When I was first asked about it, I had an image of collapsing and not being able to move. So i did not answer yes to that question. But I do get a feel of extreme weakness in my lower back and legs if I get angry. To the point where it feels like my back gives out. I also remember getting that weak feeling in my legs when I was younger as a child if I was startled. I never collapsed, just felt extremely weak. Can anyone relate to that?

#11 thecatnapper

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Posted 06 July 2012 - 11:33 PM

Hi Timmbr, what you are describing sounds a lot like what my sister describes and what her doctor in the hospital said sounds suspiciously like cataplexy. For me, when I get extremely angry it feels like the muscles around my eyes go all wonky and I can't control them and sometimes my head will nod briefly. I've always thought it was what "rage" felt like. I was thinking about it the other day and it seems that I instinctively lean against something whenever I get into an argument with someone. I probably sound like a trouble maker but my old career was very stressful and heated arguments are common in that environment. I absolutely hate to argue and I even get upset when I see total strangers arguing. My cateplexy is the worst when I laugh and I've always had a reputation of being a goof ball that laughs excessively hard. I've never collapsed because each time I was either sitting or was laughing because I'd already fallen down. When it happens I can't lift my head or keep my mouth closed and I drool like a teething baby. I've only been to a comedy club once in my life and will not go again for that reason.

I've been thinking back to various episodes that my sister has had and I think she had a full blown cataplexy collapse when she was about 7 months pregnant with her youngest child. I don't know what set her off but she was getting ready for work one morning and I was asleep and heard a loud BOOM! I ran out into the hall and found her sitting nearly indian style on the floor in front of the linen closet. She had no clothes on and was wet where she'd just gotten out of the shower. She was just sitting there slumped over and her head was hanging down so I lifted her head up and her eyes were open. When she "came to" she just got right up and continued getting ready as if nothing had happened and wouldn't let us call an ambulance or take her to get checked out. We attributed it to her being pregnant and thought maybe she got too hot in the shower but now I think it was cataplexy because of her eyes being open while she was still unable to move.


I'm actually quite surprised that I've never gotten a DUI. I've blown out a couple of tires either hitting curbs or running off the road. I've also gotten multiple speeding tickets from tuning out while driving and not realizing how fast I was going. Then I've had times when people have blown the horn at me because I was decelerating and not realizing it or because I'd drifted over into someone else's lane. I've really cut down on my driving in the past year or so even before I suspected Narcolepsy. My sister has also had a few fender benders. A few years ago she backed into the side of my new car and I went nuts and accused her of doing it on purpose....OOPSIE, at least I can admit when I'm wrong!


Sorry if it seems that I over explain things but I am a writer...it's what I do :lol: Plus I'm sleepy as usual and tend to ramble.

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Posted 07 July 2012 - 01:30 AM

Yeppers! This is already happening just as I knew it would and it's been less than one week. I'm one of those "suffer in silence" types so my family actually knows very little of what has actually gone on and how much this has all impacted my life. Even though I can remember specific incidents with pinpoint accuracy as far as date and time, I refuse to play the "who suffers more" game with any of them. I've got plenty of ammunition to win such arguments but I say...why would I? and how would that benefit me in a positive way? I have to admit that the small part of me that is still grieving wants to climb up on a pedestal and point fingers at every person that's ever called me lazy or crazy but I know that is not something that could have any sort of positive impact on my life. Like I said, I care nothing about being the center of attention and when I'm not feeling well, I'm like a cat who runs off and hides to either heal or die alone. Some people are more like pack animals who depend on their group to take care of them. There's nothing wrong with either way as long as you are able to maintain healthy boundaries.Hmmm...I feel a blog post coming on :P


We have always had this awful sibling rivalry - I'm the oldest and she is the middle child, and our personalities clash horribly. We are too stubborn and always want the last word. But our family is like that, we are all very loud, competitive, and opinionated. We are always arguing/competing over SOMETHING. Although I still win - I have 3 sleep disorders, she only has 2 :) Yeah. . .it's not really a game any of us wants to win. . .but we're the type of people who don't do anything half way; why have 1 sleep disorder when you could have 3??? lol.

#13 Enginerd

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Posted 07 July 2012 - 09:18 AM

I was raised by The Adams Family as well.

Your Dad sounds a lot like mine. He became "man of the house" at 10 years old when his dad died and then went into the military after graduation so he has that "suck it up, snap out of it, and shake it off" attitude toward anything he doesn't understand and let me tell ya, he doesn't know much at all about anything remotely medical in nature. Plus he thinks women don't know anything about guy stuff like fixing things and hooking up electronics. I love to prove him wrong and watch him squirm!

I get what your sister is going through though as I have major anxiety having medical proceedures. I don't mind having blood drawn or getting IV's but anything more invasive than that and I have to be practically hit on the head with a sledge hammer to knock me out because I'm so hypervigilant and afraid of being in a situation where I'm conscious but can't control what is happening to me. Even minor things like getting an eye exam or going to the GYN puts me in a frenzy. Luckily I'm not afraid of the dentist and I usually fall asleep while getting my teeth cleaned but that's probably due to having Narcolepsy and has nothing to do with being all Zen or brave...:P

I also have a few armchair doctors in my family. I have an Aunt in the mountains of TN who owns a medical dictionary and a copy of a drug facts book that she bought at Wal-Mart about 20 years ago so whenever someone informs her that someone in the family has a new medical condition she's like "hang on lemme go get mah medical books" and then she's shocked when she can't find the meds they have been prescribed.

Then there's the issue of me having a background in medical imaging with long history of working in hospitals so everyone thinks I should know how to read their studies. I've literally had people mail me copies of MRI's, CT's, and ultrasounds with the radiologist's reports and ask me to look at them and see if I agree with their interpretations. Everytime it happens I do a face palm because I have to remind them again that taking images and reading them are two TOTALLY different things. Some of them still think I'm a doctor because my dearly departed Grandma told everyone back when I was in school that I was going to medical school to be a "doctor of Radio-ology". Those are always uncomfortable conversations when I have to explain the real deal to family members I haven't seen in years when I bump into them. I almost slugged an Uncle at a funeral once because when I explained this to him he said "your JUST an x-ray tech! well all these years I thought you were a real doctor. Whadya do, drop outta medical school?". Fortunately my bro-in-law stepped in before things got ugly.

There's just so much pig headedness and lack of understanding in this world, even among the "well educated". I've had to learn to just give it the epic eye roll with headshake and keep on walking.


I laughed through most of your post, although I'm sorry to hear about your grandfather passing away at such a young age. My father had a mean father, so I don't think my Dad had a very dynamic upbringing, and thus, never really learned how to be compassionate or view the world from another person's perspective.

My engineering background is biomedical with a concentration in biochemical engineering, but my immediate family (Mom, Dad, brother, sister) don't listen to anything I have to say on any medical topic. What makes it insulting is that my Mom actually listens to my Dad's opinions when it comes to medicine and lectures me on what his "recommendations" are. I.e. he tells her to tell me that I need to change my diet or start taking a new supplement, and that will cure my "fatigue", or at least help it. My Dad has never taken an anatomy or physiology class in his life, unlike me! My entire education was learning the system that is the human body and how we can engineer devices and processes to improve problems with it. Needless to say, it's very frustrating when I offer my medical thoughts on variety of things and my parents claim that I just sound like a hypochondriac. I'm not claiming to be a medical doctor, but after all of the classes I've taken, I do know a bit more about renal thyroid function than they do! Ugh. :mad:

That was my rant for the day. :rolleyes:

#14 thecatnapper

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Posted 07 July 2012 - 04:59 PM

I laughed through most of your post, although I'm sorry to hear about your grandfather passing away at such a young age. My father had a mean father, so I don't think my Dad had a very dynamic upbringing, and thus, never really learned how to be compassionate or view the world from another person's perspective.

My engineering background is biomedical with a concentration in biochemical engineering, but my immediate family (Mom, Dad, brother, sister) don't listen to anything I have to say on any medical topic. What makes it insulting is that my Mom actually listens to my Dad's opinions when it comes to medicine and lectures me on what his "recommendations" are. I.e. he tells her to tell me that I need to change my diet or start taking a new supplement, and that will cure my "fatigue", or at least help it. My Dad has never taken an anatomy or physiology class in his life, unlike me! My entire education was learning the system that is the human body and how we can engineer devices and processes to improve problems with it. Needless to say, it's very frustrating when I offer my medical thoughts on variety of things and my parents claim that I just sound like a hypochondriac. I'm not claiming to be a medical doctor, but after all of the classes I've taken, I do know a bit more about renal thyroid function than they do! Ugh. :mad:

That was my rant for the day. :rolleyes:


No problem, rant away. That's what we are here for. I'm glad you could see my intended humor. It's difficult to express emotion in writing, especially humor because many times it gets misinterpreted as cynicism. People have a hard time believing that I've been through so much in my life and can joke about it without being angry. My favorite Buddha quote is "You will not be punished FOR your anger, you will be punished BY your anger" and I can testify to the fact that it is totally true because I spent many years being grouchy and it didn't get me far. Speaking of which, it's funny that you work in Biomed because years ago when I was stuck in angry mode I had a big altercation with one of our contracted Biomed guys. He came in because I called about a piece of equipment that wasn't working properly. It was the department joke that I had a little crush on this guy and I would usually get all giddy when he came to do maintainence or repair something. Well, he came stomping in and it was evident that he was having a craptastic day. He took it out on me and said that the problem was that I wasn't using the equipment properly. That was the wrong thing to say to me and I had one of those, eyes rolling back in my head, cataplexy moments and went from zero to scary chick in less than 3 seconds. I stood over his shoulder until he found and fixed the problem. Later I was so embarassed and he was too. He came to me before he left and apologized profusely for taking out his anger on me and not listening to me.His hands and voice were shaking the whole time and I thought he was going to start crying. I think it's safe to say that he saw my dark side that day and it scared him! Every time after that when he came by he'd either wink at me or pat me on the back and would always ask how I was doing but I was still embarassed. Oh the memories!

#15 LauraL

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Posted 07 July 2012 - 05:25 PM

That would be a cool testimonial... "I joined eHarmony to find love but instead I found out that I have Narcolepsy" but in all seriousness, I fully believe that everything happens for a reason and it's possible that you met that person to help you as far as getting a diagnosis and having a small support system. I love stories like that and it's even cooler when many years go by before you find out what the meaning of the connection was.


I actually had no idea that he had narcolepsy. We dated just casually, and not for that long, so medical conditions never came up. :) I happened to chat with him while I was going through the diagnostic process--I was far enough along that my doctors suspected a sleep disorder, but not so far that they knew which it was (actually, they still don't really know--they've narrowed it to IH or N w/o C, and since the treatments are essentially the same, and I would have to temporarily discontinue the antidepressants I take for further testing to distinguish, which I do not want to, I'm good with a half-diagnosis). It was actually kind of cool to find out he had N when I had no idea before--because it made me realize that with treatments, it wouldn't be obvious to the world that I had a disorder (not that I mind talking about it at all, I just don't want that to be the thing people know me for before they get to know me for me). Also, that a diagnosis of N didn't mean career death (this friend of mine is a PhD scientist who know works as a researcher at a fancy university).

I have written a lot of run-on sentences (with lots of parenthetical remarks), so I feel sheepish sending this reply to a Real Writer, but it's Saturday and I'm too tired to edit myself. ;) As that quote goes, "I apologize for the length of this letter. I didn't have time to make it shorter." (attributed to Pascal and Twain and who knows who else)

#16 thecatnapper

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Posted 08 July 2012 - 12:39 AM

It was actually kind of cool to find out he had N when I had no idea before--because it made me realize that with treatments, it wouldn't be obvious to the world that I had a disorder (not that I mind talking about it at all, I just don't want that to be the thing people know me for before they get to know me for me).
I have written a lot of run-on sentences (with lots of parenthetical remarks), so I feel sheepish sending this reply to a Real Writer, but it's Saturday and I'm too tired to edit myself. ;) As that quote goes, "I apologize for the length of this letter. I didn't have time to make it shorter." (attributed to Pascal and Twain and who knows who else)


I agree with you about not wanting to be known for having Narcolepsy and in fact I don't plan on telling anyone other than the few people that I have already. Included in that list are my immediate family, my best friend, her sister, and one other friend who is also going through the process of trying to get a "non-mental" diagnosis for some ongoing pain. Basically I've whittled my close contact list down to those few people anyway in the past 4 years that I haven't worked outside of my home. I don't wish for people to speak of me in conversation by saying "Yeah, you know?...Lori?...that girl that has Narcolepsy?"..."Oh yeah, I know her!"

No worries about any typos or run-ons because technically I don't see myself as "Real Writer" being that I haven't been published (YET). The truth is that the writer comes up with the story and the editor fixes all of the spelling and grammatical errors so it's a team effort. I'm not the worlds best speller myself and the spell check on these boards doesn't work on my computer for some reason. It takes me hours just to post something on my blog because I go over it again and again until I feel like it's presentable.

#17 timmbr

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Posted 08 July 2012 - 12:12 PM

Hi Timmbr, what you are describing sounds a lot like what my sister describes and what her doctor in the hospital said sounds suspiciously like cataplexy. For me, when I get extremely angry it feels like the muscles around my eyes go all wonky and I can't control them and sometimes my head will nod briefly. I've always thought it was what "rage" felt like. I was thinking about it the other day and it seems that I instinctively lean against something whenever I get into an argument with someone. I probably sound like a trouble maker but my old career was very stressful and heated arguments are common in that environment. I absolutely hate to argue and I even get upset when I see total strangers arguing. My cateplexy is the worst when I laugh and I've always had a reputation of being a goof ball that laughs excessively hard. I've never collapsed because each time I was either sitting or was laughing because I'd already fallen down. When it happens I can't lift my head or keep my mouth closed and I drool like a teething baby. I've only been to a comedy club once in my life and will not go again for that reason.

I've been thinking back to various episodes that my sister has had and I think she had a full blown cataplexy collapse when she was about 7 months pregnant with her youngest child. I don't know what set her off but she was getting ready for work one morning and I was asleep and heard a loud BOOM! I ran out into the hall and found her sitting nearly indian style on the floor in front of the linen closet. She had no clothes on and was wet where she'd just gotten out of the shower. She was just sitting there slumped over and her head was hanging down so I lifted her head up and her eyes were open. When she "came to" she just got right up and continued getting ready as if nothing had happened and wouldn't let us call an ambulance or take her to get checked out. We attributed it to her being pregnant and thought maybe she got too hot in the shower but now I think it was cataplexy because of her eyes being open while she was still unable to move.


I'm actually quite surprised that I've never gotten a DUI. I've blown out a couple of tires either hitting curbs or running off the road. I've also gotten multiple speeding tickets from tuning out while driving and not realizing how fast I was going. Then I've had times when people have blown the horn at me because I was decelerating and not realizing it or because I'd drifted over into someone else's lane. I've really cut down on my driving in the past year or so even before I suspected Narcolepsy. My sister has also had a few fender benders. A few years ago she backed into the side of my new car and I went nuts and accused her of doing it on purpose....OOPSIE, at least I can admit when I'm wrong!


Sorry if it seems that I over explain things but I am a writer...it's what I do :lol: Plus I'm sleepy as usual and tend to ramble.


Thanks for your input. I know what you mean about thinking that the weakness was normal when you were angry. I always felt the same way, like thats just what happens and why its not good to get angry. God is punishing me! lol. I also get the feeling of being frozen with fear. Although I have never been literally frozen or limp at this point, there are times which I can recall feeling so weak from being startled that I might as well have been frozen. I can totally see how this can be a spectrum disorder related to how much deep restorative sleep one actually gets. And be safe on the roads, dealing with the legal system is no fun at all. Fair is all very relative in our justice system.

#18 LauraL

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Posted 22 July 2012 - 03:51 PM

I just found out that my 15-year-old nephew just went in for a sleep study because he is having trouble staying awake during the day. It's kind of breaking my heart. On the one hand, if they can figure this out and get him diagnosed now, he gets spared the agony most of us who were diagnosed as adults have had to endure of fighting to stay awake and wondering why it just wasn't working. On the other hand, I just wish he didn't have to deal with this. I mean, I'll deal with it--that's fine--but not my little nephew! (Not so little anymore, but it's so easy to imagine in my mind he's still four years old!)

#19 spit

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Posted 22 July 2012 - 06:38 PM

Yep to the sibling with narcolepsy. Diagnosed semi-independently -- I found out about my sibling's status after I was already going in to figure out what the hell was wrong with me. Even when I had the info to share, most docs sorta shrugged it off -- finally found one that didn't, but it took a long time. Good on you for talking to the psychiatrist about it, and good on the psychiatrist for being on it.

There's very little research on familial narcolepsy. It may or may not match all of the stuff that most doctors actually bother to read.

I suspect there are huge numbers of misdiagnosed folks undergoing all kinds of nastiness for things they _don't_ have. The current wrangling over diagnostics is going to undoubtedly only lead to tragedy for any number of real people going through their real lives and trying to function.

Good luck to you and to your sister. I hope that both of you wind up with diagnosis and treatment that serves you well.

#20 thecatnapper

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Posted 22 July 2012 - 08:37 PM

I just found out that my 15-year-old nephew just went in for a sleep study because he is having trouble staying awake during the day. It's kind of breaking my heart. On the one hand, if they can figure this out and get him diagnosed now, he gets spared the agony most of us who were diagnosed as adults have had to endure of fighting to stay awake and wondering why it just wasn't working. On the other hand, I just wish he didn't have to deal with this. I mean, I'll deal with it--that's fine--but not my little nephew! (Not so little anymore, but it's so easy to imagine in my mind he's still four years old!)


I know what you mean about not wanting to see the young ones suffer but if they have to I'd rather see them get diagnosed as teens and get proper tx so that they don't have to go through rocky relationships and career issues because of it like we have. We are becoming concerned about my sister's two kids. I'm especially worried about my nephew who is 19. Last year he failed his Algebra II class and had to repeat it. He's always been a math wiz but the teacher said the main issue was that he was falling asleep in class almost daily. Same thing with English class this year and he almost didn't graduate because of it but his girlfriend and my niece helped him do all of the missing assignments at the last minute and he passed. Of course not all of that was due to tiredness. A big portion can be blamed on laziness and the attitude that he's already a rookie firefighter so "why do I need math and english anyway?". He's had trouble sleeping at night for a couple of years now. He can't sleep so he stays up watching late night TV or playing video games until he gets sleepy which is usually around 2AM. His migraines have also increased in frequency and severity. But, if he lays down during the day for any length of time he falls asleep quickly. Getting him to go to a Neurologist will be tough because he's a macho man. Then again, he's a grown man now so it's his choice. He's seen what I've been through and knows what can happen without treatment and if he decides to "tough it out" then whatever happens is what he'll have to deal with.