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#1 DevonKay

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Posted 19 November 2012 - 12:56 AM

A few months ago I began having persistent migraines that caused me to schedule a visit with the neurologist. She asked about my sleeping and if I ever felt tired, which I hadn't expected. I explained that situation, and she immediately suggested narcolepsy. I didn't believe it, but I went forward with the sleep study and was diagnosed. Though I feel certain this diagnosis provides an answer to many of the symptoms and problems making my life so frustrating lately, I have to wonder about the results of my study and my specific symptoms. I know it might be strange that I'm questioning my diagnosis, but I would feel much better if I had the opinion people who may have firsthand experience.

Since childhood, I always struggled with being tired during the day and needing to nap. As I got older, this issue got progressively worse. I would fall asleep in class, in the car, etc. I've also always been one to nap when the opportunity arises. And if I lay down, I fall asleep instantly. In the months preceding my diagnosis, the daytime tiredness seemed to worsen. I never seem to feel rested, and around mid morning I struggle to keep my eyes open. There's been one significant incident where I fell asleep while in my car while it was still running (though parked). However, there seem to be some days that aren't as bad as others. Is it normal that some days are just better than others?

Another issue I seem to have is that I am very much awake late at night. This is relatively new, so I'm not sure what to think.

Other symptoms I have include automatic behaviors and time lapses, occasional sleep paralysis, and cataplexy. The cataplexy is another issue I have. My doctor insists it's cataplexy because I complain of muscle weakness in my arms that seems to be triggered by stress. She says it could be so mild I may even miss it but that the sensations in my arms definitely sound like cataplexy to her. Can anyone offer an opinion on this?

And finally the results of my sleep studies seem inconsistent with a positive narcolepsy diagnosis. I don't have a copy of the report. Is that a normal thing to request? Anyway..

During my PSG, I was told I technically entered into REM before I was even asleep, which my doctor says is highly unusual and consistent with narcolepsy.

During my MSLT, I slept for all 5 naps with a sleep latency of 6 minutes. I only had one REM sleep, though. I remember dreaming during the other naps, and I even experienced sleep paralysis during one of the naps that did not register REM. The tech even told me at the lab that she saw 4 individual REM events. I'm not exactly sure what happens in the reporting, but this is what I was told. I had a latency of 6 minutes and one REM nap.

She didn't hesitate to give me the narcolepsy diagnosis due to the PSG, the sleep latency, and my other symptoms. I'm now on Nuvigil which seems to be helping with my wakefulness. I guess my issue is that now that I've seen my results, I'm questioning the severity of my symptoms and the validity of my diagnosis.

#2 MINItron

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Posted 19 November 2012 - 01:51 AM

A few months ago I began having persistent migraines that caused me to schedule a visit with the neurologist. She asked about my sleeping and if I ever felt tired, which I hadn't expected. I explained that situation, and she immediately suggested narcolepsy. I didn't believe it, but I went forward with the sleep study and was diagnosed. Though I feel certain this diagnosis provides an answer to many of the symptoms and problems making my life so frustrating lately, I have to wonder about the results of my study and my specific symptoms. I know it might be strange that I'm questioning my diagnosis, but I would feel much better if I had the opinion people who may have firsthand experience.

.....

She didn't hesitate to give me the narcolepsy diagnosis due to the PSG, the sleep latency, and my other symptoms. I'm now on Nuvigil which seems to be helping with my wakefulness. I guess my issue is that now that I've seen my results, I'm questioning the severity of my symptoms and the validity of my diagnosis.


It seems that more people than not doubt the validity of their diagnosis. I am the opposite myself. I slept for all 5 naps, had a mean latency of 4.7 minutes, and only one REM. I had sleep paralysis for 4 of the five naps. I had an extremely vivid dream/hypnagogic hallucination at the beginning of the only nap that I didn't have sleep paralysis. Since I only had one SOREM according to the EEG my doc diagnosed me with Idiopathic Hypersomnia instead of Narcolepsy. I really think that I will end up having to have another sleep study.

I did have what I am now certain was cataplexy for a couple of years, but have not had any for the last 3 years. I didn't recognize it at all at the time. Every time I had a anxiety attack I would stumble because I would get a sudden weakness in my left knee. After I recovered from the post traumatic stress I stopped having anxiety attacks and cataplexy. It seems that the vast majority of those who do have cataplexy have it mildly.

If your PSG showed you entering REM before you were even asleep that sounds very much like Narcolepsy. Cataplexy, hypnagogic hallucinations and sleep paralysis are all manifestations of REM intruding into our wakeful state. The intense drowsiness during the day comes from our body's inability to control the transition from wakefulness to sleep. On of the cruelest joke that Narcolepsy plays on many of its sufferers is that after being barely able to stay awake all day they can't sleep when they actually try to. I don't have that issue, but I do have the issue of not really being able to sleep for much more than 6 hours at a time. I almost always start waking up repeatedly at the 6 hours point.

#3 Hank

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Posted 19 November 2012 - 11:07 AM

It seems that more people than not doubt the validity of their diagnosis. I am the opposite myself. I slept for all 5 naps, had a mean latency of 4.7 minutes, and only one REM. I had sleep paralysis for 4 of the five naps. I had an extremely vivid dream/hypnagogic hallucination at the beginning of the only nap that I didn't have sleep paralysis. Since I only had one SOREM according to the EEG my doc diagnosed me with Idiopathic Hypersomnia instead of Narcolepsy. I really think that I will end up having to have another sleep study.

I did have what I am now certain was cataplexy for a couple of years, but have not had any for the last 3 years. I didn't recognize it at all at the time. Every time I had a anxiety attack I would stumble because I would get a sudden weakness in my left knee. After I recovered from the post traumatic stress I stopped having anxiety attacks and cataplexy. It seems that the vast majority of those who do have cataplexy have it mildly.

If your PSG showed you entering REM before you were even asleep that sounds very much like Narcolepsy. Cataplexy, hypnagogic hallucinations and sleep paralysis are all manifestations of REM intruding into our wakeful state. The intense drowsiness during the day comes from our body's inability to control the transition from wakefulness to sleep. On of the cruelest joke that Narcolepsy plays on many of its sufferers is that after being barely able to stay awake all day they can't sleep when they actually try to. I don't have that issue, but I do have the issue of not really being able to sleep for much more than 6 hours at a time. I almost always start waking up repeatedly at the 6 hours point.


Devonkay- it sounds like your doctor has hit the nail in the head with your diagnosis. I went through an adjustment period with my diagnosis. It was so hard to realize that I had lived with symptoms of an illness I never knew I had. It seemed so far fetched but such a completely accurate description of my experiences- all at the same time. I thought my symptoms were normal and just something everyone else lived with- others complained about being tired, distracted, clumsy, forgetful and exhausted. I just didn't want to be a complainer, so I lived with it. But I was actually living with the symptoms of an illness. By not complaining, I was actually denying the severity of my symptoms. It has taken time to come to terms with all of it. It really has not been until very recently(since I have started improving on Xyrem), that I am realizing what a crushing load from EDS I had carried for so long. I had just gotten accustomed to that crushing load. Now that Xyrem is beginning to reduce that load, I am adjusting to that as well. Please consider yourself fortunate to have received an accurate diagnosis- so many of us have struggled through misdiagnosis. Doctors are very reluctant to make a Narcolepsy diagnosis. Only very experienced doctors will know Narcolepsy and Cataplexy when they see it. So you must have a very good doctor who is confident enough to tell you what you have. I wish I had had a doctor like that.


Minitron- you mentioned Cataplexy in one knee. Cataplexy is "bilateral". What was the other knee doing? The reason I ask is because I had complained about dropping things occasionally, like a coffee cup. This was actually Cataplexy in both my arms, but I was only paying attention to the hand that was holding an object when it fell. If I had been holding coffee in both hands I might have realized it was bilateral sooner. When my knees buckle from Cataplexy, it is usually most niticeable in my weight bearning leg. I almost always favor my right side so it seemed like it was only a one-sided problem. If your doctor is thinking "bilateral" and you (like me) are reporting a "one sided" problem, that may be holding up a correct diagnosis. For me, even after 2 SOREMs on my MSLT, my doctor was not ready to make a diagnosis of N. Since I was finally able to make an accurate report of Cataplexy, that clinched it. She said Cataplexy occurrs with Narcolepsy, and I had documented definite Cataplexy, so she made the formal diagnosis of Narcolepsy only because she was confident of Cataplexy. Unfortunately, I had previously denied having Cataplexy because I did not understand what it was. I worked with a psychologist for the purpose of discussing what I had lived with. The psychologist knew nothing about Cataplexy, I just decided I needed a paid professional to listen to me while I processed this mystery. If you have an unpaid volunteer willing to listen to you, that could serve the same purpose. I needed to discuss it while being free of what someone else thought it was, without the usual "that happens to me sometimes too".

Cataplexy was a real riddle for me. I avoided things that triggered it, so it happened less often. I am athletic and I have quick reflexes, but "catching a thrown object" is a trigger for Cataplexy for me. Yes, this is a real trigger- I learned this on the blog REM Runner- and a light bulb went off. If someone tossed me keys or a pencil, I clapped at it but could never catch it. I did endurance sports and avoided sports involving a ball, because I was just lousy at catching- and that is embarrassing. Embarrassment is a major trigger for Cataplexy, so my small triggers can start to cascade into a perfect storm for severe Cataplexy. As long as I avoided the small triggers, Cataplexy remained minor and manageable. I have stopped having huge belly laughs, and I love to laugh, but my head drops when I laugh really hard. If you really want to look into Cataplexy, you may need to look at the things you "don't do" that may be helping you avoid "triggers". Are you emotionally guarded? This is common in PWN. Because Cataplexy is often triggered by strong emotion, you may be avoiding certain emotions or situations so you do not experience Cataplexy. Your unfortunate experience with PTSD certainly was a time of "strong emotion" which would explain why it was noticeable during that time. Be careful with this- but for me, since embarrassment is my biggest triggering emotion, I had to decide to remember a many embarrassing situations to understand my Cataplexy. Nobody likes to think of embarrassing moments, but that was a key for me. I avoid embarrassment by being prepared for everything- so that I became overly prepared and a bit uptight- which is not my natural way.

I hope this helps- I know I had to sort through a lot. Then I realized that Cataplexy had been hiding in plain sight. I had built up a lot of coping strategies to avoid the triggers. I did such a good job that major Cataplexy rarely happened. But my life suffered because I was working so hard to avoid so many little "unknown triggers".Now that Xyrem is reducing my Cataplexy, I can begin spending less time/energy avoiding triggers which makes my life more enjoyable. I could really use a good belly laugh without hurting my neck when my head drops.

#4 Hank

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Posted 19 November 2012 - 09:14 PM

I found a good medical journal article on Narcolepsy and Idiopathic Hypersomnia. It includes some thorough explanations of symptoms, diagnostic criteria, medications/side effects and impact on quality of life.

http://www.accpstora...works/start.pdf



Articles like this are a big help to me- they are written by people who actually know/understand these rare medical disorders.

#5 DevonKay

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Posted 20 November 2012 - 12:43 AM

I round a good medical journal article on Narcolepsy and Idiopathic Hypersomnia. It includes some thorough explanations of symptoms, diagnostic criteria, medications/side effects and impact on quality of life.

http://www.accpstora...works/start.pdf



Articles like this are a big help to me- they are written by people who actually know/understand these rare medical disorders.



This article was actually very informative. I think the reason I struggle so much with my diagnosis is my lack of SOREMS during the MSLT. I only had the one, and I see people who say their doctors won't diagnose narcolepsy even with two. I also feel like my symptoms aren't as severe as they are in most people. Sure I fall asleep sometimes when it's inappropriate, but I can usually fight the sleep. I usually just feel sort of in a fog and unfocused. Sometimes it's not even a true tired feeling. I just feel like I'm not there. This is usually accompanied by confusion and problems with memory. Does anyone else have trouble with confusion and memory?

Also, regarding HH... When I lay down to sleep at night and close my eyes, I'll see these images. I can essentially control them and sometimes I feel like I'm constructing my own dreams. I feel like I'm awake, but sometimes I'm not sure if I'm asleep or awake. I'll also sometimes have the distinct feeling that I'm not alone, but I never see anything. And sometimes it's just a really strong fear that something's there. Is this HH?

I really appreciate all of the input and experiences I'm seeing here. It's really helping, and I think I am just dealing with this sort of transitional period. It's a lot to swallow, really. I just want to be sure I have the right diagnosis.

#6 MINItron

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Posted 20 November 2012 - 01:03 AM

Minitron- you mentioned Cataplexy in one knee. Cataplexy is "bilateral". What was the other knee doing? The reason I ask is because I had complained about dropping things occasionally, like a coffee cup. This was actually Cataplexy in both my arms, but I was only paying attention to the hand that was holding an object when it fell. If I had been holding coffee in both hands I might have realized it was bilateral sooner. When my knees buckle from Cataplexy, it is usually most niticeable in my weight bearning leg. I almost always favor my right side so it seemed like it was only a one-sided problem. If your doctor is thinking "bilateral" and you (like me) are reporting a "one sided" problem, that may be holding up a correct diagnosis. For me, even after 2 SOREMs on my MSLT, my doctor was not ready to make a diagnosis of N. Since I was finally able to make an accurate report of Cataplexy, that clinched it. She said Cataplexy occurrs with Narcolepsy, and I had documented definite Cataplexy, so she made the formal diagnosis of Narcolepsy only because she was confident of Cataplexy. Unfortunately, I had previously denied having Cataplexy because I did not understand what it was. I worked with a psychologist for the purpose of discussing what I had lived with. The psychologist knew nothing about Cataplexy, I just decided I needed a paid professional to listen to me while I processed this mystery. If you have an unpaid volunteer willing to listen to you, that could serve the same purpose. I needed to discuss it while being free of what someone else thought it was, without the usual "that happens to me sometimes too".

Cataplexy was a real riddle for me. I avoided things that triggered it, so it happened less often. I am athletic and I have quick reflexes, but "catching a thrown object" is a trigger for Cataplexy for me. Yes, this is a real trigger- I learned this on the blog REM Runner- and a light bulb went off. If someone tossed me keys or a pencil, I clapped at it but could never catch it. I did endurance sports and avoided sports involving a ball, because I was just lousy at catching- and that is embarrassing. Embarrassment is a major trigger for Cataplexy, so my small triggers can start to cascade into a perfect storm for severe Cataplexy. As long as I avoided the small triggers, Cataplexy remained minor and manageable. I have stopped having huge belly laughs, and I love to laugh, but my head drops when I laugh really hard. If you really want to look into Cataplexy, you may need to look at the things you "don't do" that may be helping you avoid "triggers". Are you emotionally guarded? This is common in PWN. Because Cataplexy is often triggered by strong emotion, you may be avoiding certain emotions or situations so you do not experience Cataplexy. Your unfortunate experience with PTSD certainly was a time of "strong emotion" which would explain why it was noticeable during that time. Be careful with this- but for me, since embarrassment is my biggest triggering emotion, I had to decide to remember a many embarrassing situations to understand my Cataplexy. Nobody likes to think of embarrassing moments, but that was a key for me. I avoid embarrassment by being prepared for everything- so that I became overly prepared and a bit uptight- which is not my natural way.

I hope this helps- I know I had to sort through a lot. Then I realized that Cataplexy had been hiding in plain sight. I had built up a lot of coping strategies to avoid the triggers. I did such a good job that major Cataplexy rarely happened. But my life suffered because I was working so hard to avoid so many little "unknown triggers".Now that Xyrem is reducing my Cataplexy, I can begin spending less time/energy avoiding triggers which makes my life more enjoyable. I could really use a good belly laugh without hurting my neck when my head drops.


Hank- It is entirely possible that both knees were affected. It always happened when I was in a crowded store, so I had the cart to hang onto. I have never liked crowds, but for about three years after I was deployed to Iraq they would trigger minor anxiety attacks. I always say it was Post Traumatic Stress, not PTSD. I had anxiety, but it always passed very quickly, and never interfered with my day to day life other than the fact that I would stumble. I also had a tendency to be more vigilant than normal, but not to a level that interfered with my day to day life.

It's funny that you mention the catching objects. Even though I have great manual dexterity, and hand/eye coordination I am terrible at catching a ball or even hitting one with a racket. I didn't used to be like that, but it is something that has gotten worse over the years. I also have a hard time speaking if I have been embarrassed or become anxious. This is funny since a big part of my job as a military instructor involves talking in front of people, but I am a natural talker and have no fear of public speaking.

I am not naturally an emotionally guarded person, in fact I am often more openly emotional than most men. I am quite certain that laughing and sadness are not triggers for me. I can watch a comedian that makes me laugh until I hurt, and still not have any loss of motor control. I think the reason that I don't have stronger cataplexy is that I tend to process most emotions quickly and move on. For me a full on panic attack was over in seconds. I have noticed that most people relate that their HH are scary if not terrifying, and many PWN find their insane dreams just as terrifying. The same goes for SP. I could be having the most horrid nightmare, and 99 times out of a 100 I just roll with it. I even find my SP to be pleasant most of the time. The sensation of pressure holding me down lulls me to sleep almost faster than normal. That article was fascinating, and put much of the data that I had found together in one place. The more I think about it the more I'm sure that I have had other subtle cataplexies that I just haven't noticed.

#7 MINItron

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Posted 20 November 2012 - 01:09 AM

This article was actually very informative. I think the reason I struggle so much with my diagnosis is my lack of SOREMS during the MSLT. I only had the one, and I see people who say their doctors won't diagnose narcolepsy even with two. I also feel like my symptoms aren't as severe as they are in most people. Sure I fall asleep sometimes when it's inappropriate, but I can usually fight the sleep. I usually just feel sort of in a fog and unfocused. Sometimes it's not even a true tired feeling. I just feel like I'm not there. This is usually accompanied by confusion and problems with memory. Does anyone else have trouble with confusion and memory?

Also, regarding HH... When I lay down to sleep at night and close my eyes, I'll see these images. I can essentially control them and sometimes I feel like I'm constructing my own dreams. I feel like I'm awake, but sometimes I'm not sure if I'm asleep or awake. I'll also sometimes have the distinct feeling that I'm not alone, but I never see anything. And sometimes it's just a really strong fear that something's there. Is this HH?

I really appreciate all of the input and experiences I'm seeing here. It's really helping, and I think I am just dealing with this sort of transitional period. It's a lot to swallow, really. I just want to be sure I have the right diagnosis.


I have the fog that you are describing all of the time. When I first started taking Ritalin it was like a veil had been lifted off my brain. I had forgotten what it was like to actually be really awake for more than a few minutes at a time. You will find people on here that have such severe symptoms that they literally cannot function even with high doses of stimulants, and you will find those that have led seemingly normal lives for decades before they finally figured out what is wrong with them. I really think it is a matter of your doctor's knowledge of Narcolepsy. Many of us are left seeing doctors that don't REALLY understand it. That is why so many have such a hard time getting a diagnosis.

#8 Hank

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Posted 20 November 2012 - 08:36 AM

Hank- It is entirely possible that both knees were affected. It always happened when I was in a crowded store, so I had the cart to hang onto. I have never liked crowds, but for about three years after I was deployed to Iraq they would trigger minor anxiety attacks. I always say it was Post Traumatic Stress, not PTSD. I had anxiety, but it always passed very quickly, and never interfered with my day to day life other than the fact that I would stumble. I also had a tendency to be more vigilant than normal, but not to a level that interfered with my day to day life.

It's funny that you mention the catching objects. Even though I have great manual dexterity, and hand/eye coordination I am terrible at catching a ball or even hitting one with a racket. I didn't used to be like that, but it is something that has gotten worse over the years. I also have a hard time speaking if I have been embarrassed or become anxious. This is funny since a big part of my job as a military instructor involves talking in front of people, but I am a natural talker and have no fear of public speaking.

I am not naturally an emotionally guarded person, in fact I am often more openly emotional than most men. I am quite certain that laughing and sadness are not triggers for me. I can watch a comedian that makes me laugh until I hurt, and still not have any loss of motor control. I think the reason that I don't have stronger cataplexy is that I tend to process most emotions quickly and move on. For me a full on panic attack was over in seconds. I have noticed that most people relate that their HH are scary if not terrifying, and many PWN find their insane dreams just as terrifying. The same goes for SP. I could be having the most horrid nightmare, and 99 times out of a 100 I just roll with it. I even find my SP to be pleasant most of the time. The sensation of pressure holding me down lulls me to sleep almost faster than normal. That article was fascinating, and put much of the data that I had found together in one place. The more I think about it the more I'm sure that I have had other subtle cataplexies that I just haven't noticed.


Here is the blog article that tipped me off to the "catching a thrown onject" trigger. http://julieflygare....ball-cataplexy/

Here are another useful links on cataplexy: http://books.google.... object&f=false


I don't rely on Wikipedia for much, but it actually has a thorough explanation. http://en.wikipedia.org/wiki/Cataplexy
My SP and HH do not disturb me either. I just hear music or sounds.

#9 Hank

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Posted 20 November 2012 - 08:44 AM

This article was actually very informative. I think the reason I struggle so much with my diagnosis is my lack of SOREMS during the MSLT. I only had the one, and I see people who say their doctors won't diagnose narcolepsy even with two. I also feel like my symptoms aren't as severe as they are in most people. Sure I fall asleep sometimes when it's inappropriate, but I can usually fight the sleep. I usually just feel sort of in a fog and unfocused. Sometimes it's not even a true tired feeling. I just feel like I'm not there. This is usually accompanied by confusion and problems with memory. Does anyone else have trouble with confusion and memory?

Also, regarding HH... When I lay down to sleep at night and close my eyes, I'll see these images. I can essentially control them and sometimes I feel like I'm constructing my own dreams. I feel like I'm awake, but sometimes I'm not sure if I'm asleep or awake. I'll also sometimes have the distinct feeling that I'm not alone, but I never see anything. And sometimes it's just a really strong fear that something's there. Is this HH?

I really appreciate all of the input and experiences I'm seeing here. It's really helping, and I think I am just dealing with this sort of transitional period. It's a lot to swallow, really. I just want to be sure I have the right diagnosis.




I have a corporate job and never fall asleep in meetings. But I have successfully and relentlessly battled to stay awake and focused every day. It is not supposed to be hard to stay awake. My chief daytime complaint was not sleepiness, it was trouble maintaining concentration. I was tested for ADHD before my MSLT. I do not have ADHD, but I improved on Adderall- not surprisingly. But the PhD who tested me for ADHD concluded I was a drug seeker who was faking symptoms for a prescription of Adderall. I know the fog you experience. It is a lot to take in, but if you have been spared the frustration and damage of misdiagnosis by unaware professionals, consider yourself fortunate.

#10 SleepyRaffie

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Posted 20 November 2012 - 04:39 PM

A lot of people with narcolepsy can fight sleep. I have made a career out of it. I have only rarely fallen asleep uncontrollably (although I have plenty of microsleeps). The reason I finally got diagnosed was I started to wobble and fall. A lot. That, coupled with some brief daytime hallucinations, sent me flying to the doctor. I got an MRI right away and when it nothing showed up I relaxed for a bit. The falls continued so I wrote down everything that ever bothered me and had many tests. When I finally got to the neurologist he mentioned narcolepsy right away. The reason I tell you this is that I had no SOREMS on my MSLT. My sleep latency coupled with cataplexy was enough for my doctor to feel comfortable diagnosing me. If anything, your sleep study is more indicative of narcolepsy than mine. Especially the early REM on the PSG. Feeling doubt is natural. I have had plenty. It really sounds like you have a doctor who knows what they are doing.

#11 trying_to_cope

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Posted 20 November 2012 - 09:36 PM

A lot of people with narcolepsy can fight sleep. I have made a career out of it. I have only rarely fallen asleep uncontrollably (although I have plenty of microsleeps). The reason I finally got diagnosed was I started to wobble and fall. A lot. That, coupled with some brief daytime hallucinations, sent me flying to the doctor. I got an MRI right away and when it nothing showed up I relaxed for a bit. The falls continued so I wrote down everything that ever bothered me and had many tests. When I finally got to the neurologist he mentioned narcolepsy right away. The reason I tell you this is that I had no SOREMS on my MSLT. My sleep latency coupled with cataplexy was enough for my doctor to feel comfortable diagnosing me. If anything, your sleep study is more indicative of narcolepsy than mine. Especially the early REM on the PSG. Feeling doubt is natural. I have had plenty. It really sounds like you have a doctor who knows what they are doing.


SleepyRaffie_ If possible, because I know with this stuff its kind of hard to explain how you feel sometimes, but could you tell me a little more about what you felt like and what was going on when you had started to wobble and fall? Like what exactly happened/ went on. ( ya kno?) I too have been having some issues with that and I'm just curious if they are similar to mine. Thanks in advance

#12 sk8aplexy

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Posted 21 November 2012 - 12:11 AM

As a young kid, I could not lift arms being tickled, this in hindsight was Cataplexy; I became comfortable, to a point, and used to it.
Didn't have any idea of Narcolepsy, at all being the case, till 28 when I decided to google: 'laughter AND paralysis'
Took a few years, now I have the diagnosis. Learned a lot by reading these and other forums along with med journals/articles online.
Been to numerous doctors, I also have Central Sleep Apnea which I could not help due to ENT and respiratory matters, so it was a journey that cost a lot and hasn't necessarily gotten me too far.
Having adjusted over my entire life to it. For years, knowing I had matters, fatigued and collapsing on occasions; I had no idea it was sleep related, and I thought I was a solid sleeper.
Now at 32, after more adjustments, including mainly lifestyle routine and diet along with living as stress free/minimally. I drink coffee in the mornings, sleep more or less routine but when I need a nap I take them, I do stretching/exercise/walking daily and have been taking some supplements from an awesome Osteopath who does accupuncture and 'blood letting cupping' (such has been very helpful; I've had too many negative side-effects from mainstream).
I'm at least much more aware and able to explain things now. Even though, saying I have Narcolepsy tends to get no response beyond some nitwit comment, I can then talk their ear off for hours, but don't tend to have that chance..!
I started to randomly experience that wobble a couple years ago, recently it has not been as often though thankfully, it comes and goes.
I'd describe it like 'drunk walking without the spins upstairs.'
And regarding sporting Cataplexy; I've skateboarded and played ice hockey most of my life, through my 20's I began getting Cataplexy from landing tricks or from people hollering after a trick.
I'd slouch and/or bobble my head with some awkward facial spasm, for a second, then strength would come back and on I'd go.
Hockey doesn't trigger Cataplexy often, although on the occasional break away or silly interaction.
The skateboarding though got scary, I Cataplexy'd down the transition one day, all was fine but I layed off for a good while.
Although, since seeing the Osteopath my Cataplexy has changed slightly for the better (supplements/cupping) and I've been able to skate with more solid constant strength, again. :|

#13 J718

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Posted 21 November 2012 - 01:03 AM

DevonKay, I can relate to a lot of what you're saying. I was diagnosed about a year a half ago and I'm just now getting over my doubts about whether I really have narcolepsy. Part of the problem was because my sleep study didn't make the diagnosis obvious. (I've taken antidepressants for years and they alter REM sleep; I can never go off them because my depression isn't exactly mild.) The other reason I struggled is because, like you, my symptoms aren't so dramatic and severe. I've had a few hallucinations and sleep paralysis, and if I do have cataplexy it's very mild (my knees have buckled occasionally but I figured it was some fluke thing...I've never actually collapsed.) Extreme daytime sleepiness, automatic behaviors, brain fog—those are my biggest issues. Oh, and I'm also more awake at night. I'm typing this at midnight! Ask me to type something at 9 a.m. and I can barely focus on the keys. But like SleepyRaffie, I'm pretty good at fighting sleep, at least at work--the terror of losing my job may be what keeps me awake. I get paranoid that everyone thinks I'm really dumb, though. I used to be a very together, Type A person and now I can't remember things people told me 5 seconds ago and I struggle to find the right words when I speak.

Anyway, I guess where all this rambling is going is just to say that you can have narcolepsy without fitting all the symptoms perfectly. I think I bought into the media portrayal of narcolepsy: that everyone who has narcolepsy falls asleep in mid-conversation, drops to the ground when they feel a strong emotion, etc. That's certainly the case for some, and news organizations like to cover those people because it makes for dramatic TV and articles (I say this as someone who works in the media.) I saw a program not too long about people who had such severe cataplexy that they'd accidentally been declared dead! It was called "I Woke Up in the Morgue." I'd never heard or seen anything about people with less severe narcolepsy, so I had no idea such a thing existed. Never in a million years would I have guessed that I had it.

#14 Hank

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Posted 21 November 2012 - 11:43 AM

DevonKay, I can relate to a lot of what you're saying. I was diagnosed about a year a half ago and I'm just now getting over my doubts about whether I really have narcolepsy. Part of the problem was because my sleep study didn't make the diagnosis obvious. (I've taken antidepressants for years and they alter REM sleep; I can never go off them because my depression isn't exactly mild.) The other reason I struggled is because, like you, my symptoms aren't so dramatic and severe. I've had a few hallucinations and sleep paralysis, and if I do have cataplexy it's very mild (my knees have buckled occasionally but I figured it was some fluke thing...I've never actually collapsed.) Extreme daytime sleepiness, automatic behaviors, brain fog—those are my biggest issues. Oh, and I'm also more awake at night. I'm typing this at midnight! Ask me to type something at 9 a.m. and I can barely focus on the keys. But like SleepyRaffie, I'm pretty good at fighting sleep, at least at work--the terror of losing my job may be what keeps me awake. I get paranoid that everyone thinks I'm really dumb, though. I used to be a very together, Type A person and now I can't remember things people told me 5 seconds ago and I struggle to find the right words when I speak.

Anyway, I guess where all this rambling is going is just to say that you can have narcolepsy without fitting all the symptoms perfectly. I think I bought into the media portrayal of narcolepsy: that everyone who has narcolepsy falls asleep in mid-conversation, drops to the ground when they feel a strong emotion, etc. That's certainly the case for some, and news organizations like to cover those people because it makes for dramatic TV and articles (I say this as someone who works in the media.) I saw a program not too long about people who had such severe cataplexy that they'd accidentally been declared dead! It was called "I Woke Up in the Morgue." I'd never heard or seen anything about people with less severe narcolepsy, so I had no idea such a thing existed. Never in a million years would I have guessed that I had it.


Thank you for your second paragraph- you summed that up perfectly. The "severe cases" and general descriptions were what kept me from considering Narcolepsy and especially Cataplexy. Those portrayals do not cover the substantial portion of PWN who manage to function with extraordinary effort against an invisible disease. Someone struggling to keep awake may appear awake. But everyone else who is awake does it effortlessly. Waking up in a morgue is not a required symptom for diagnosis.

During my first MSLT, I asked what this test was for. The tech said Narcolepsy and I was shocked. My 2nd cousin has that and she was a more text book case at age 18. I googled Narcolepsy and found this forum during my MSLT. I discovered all these posts written by people who sounded just like me. I forced myself to stay awake on the next nap but quickly fell asleep anyway. I called my cousin that night and she introduced me to the reality of Cataplexy- I quickly realized the mystery was solved. But I was terrified about my future. I feared the diagnosis more than the illness. Another 6 months passed until the next PSG/ MSLT when the diagnosis was confirmed. During that 6 months, I learned more about N and C and came to terms with what I had been living against all those years. Now that I am diagnosed, I am no longer living against it- just with it.

I am thankful that my accurate diagnosis qualified me for Xyrem. It has taken a bumpy 4 months, but Xyrem is now making an enormous difference in my EDS (plus Adderall 20 mg) and Cataplexy. Now that the weight of my symptoms is beginning to lift, for the first time since childhood, I am realizing the enormous effort it took just to stay awake. Those 2 simple things- Awake and Asleep- which everyone else does effortlessly, were the 2 things I struggled relentlessly to do. Now I know the reason for the relentless struggle. It is Narcolepsy. And it is a "rare disease", a medical disorder- not a psychiatric disorder or a character flaw or disinterest. And there are other people who live with it, just like me. And I did not cause it, I cannot make it go away (but I can make it worse), and it is not my "fault".

Falling asleep has been my single greatest struggle and embarrassment. I never knew it was a symptom of a medical disorder.

Nowhere in the medical literature or diagnostic protocols does it say Narcolepsy requires a person to fall asleep in a bowl of soup. And pregnant women are definitely not required to eat Pickles & Ice Cream in order to be considered pregnant. The problem with stereotypes is that people believe them, even me. Instead of fearing that I would become a stereotype, now I can start to have some fun breaking the stereotype, which I have unknowingly done for years.

#15 SleepyRaffie

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Posted 21 November 2012 - 02:15 PM

SleepyRaffie_ If possible, because I know with this stuff its kind of hard to explain how you feel sometimes, but could you tell me a little more about what you felt like and what was going on when you had started to wobble and fall? Like what exactly happened/ went on. ( ya kno?) I too have been having some issues with that and I'm just curious if they are similar to mine. Thanks in advance


It was really odd. I would be fine one moment and then my legs would get like jelly. It did not really feel like anything to me. I just could not walk right. I would grab things to steady myself. I had always had good balance so I was confused by it. The falling started a bit after. I would just go over. I had a habit of ending up against walls so I never got injured. One time I started to go over backwards and my husband caught me. I really couldn't figure out why my leg did not step back automatically like it normally would. At first I said it was unrelated to emotions, but then I started really paying attention. It usually happened when my husband was joking with me or when I was thinking about something that frustrated me. I also started thinking about unexplained things in my life. I remembered that in elementary school I would laugh so hard I would fall down and be unable to push myself of the ground. At the time I thought that happened to everyone. I actually liked it.

#16 DevonKay

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Posted 23 November 2012 - 10:13 PM

I just want to thank everyone for their responses. I feel like after reading them and reading through a lot of the other threads here that I understand my symptoms a lot better. There are some things I never even thought could be symptoms! I mean, the more narcolepsy-specific symptoms weren't even the reason I went to the neurologist. It was the daily migraines and total inability to concentrate or focus. I was constantly in a state of confusion, it seemed. I went through blood work and a MRI/MRA before my sleep study. But I'm not in denial now, even if my sleep study results didn't exactly meet the traditional criteria for a diagnosis.

Nevertheless, I was not given a copy of my sleep study results, so I don't know all of the data. She didn't even mention if I slept during all of the naps, but I assumed I did since that's what the sleep tech told me the day of my study. But the tech also told me I registered REM in each nap. So I don't know. I'm going request a copy in the upcoming days, and if I have trouble understanding it, I may ask everyone.

Thanks again!

#17 DeathRabbit

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Posted 27 November 2012 - 10:55 AM

I just want to thank everyone for their responses. I feel like after reading them and reading through a lot of the other threads here that I understand my symptoms a lot better. There are some things I never even thought could be symptoms! I mean, the more narcolepsy-specific symptoms weren't even the reason I went to the neurologist. It was the daily migraines and total inability to concentrate or focus. I was constantly in a state of confusion, it seemed. I went through blood work and a MRI/MRA before my sleep study. But I'm not in denial now, even if my sleep study results didn't exactly meet the traditional criteria for a diagnosis.

Nevertheless, I was not given a copy of my sleep study results, so I don't know all of the data. She didn't even mention if I slept during all of the naps, but I assumed I did since that's what the sleep tech told me the day of my study. But the tech also told me I registered REM in each nap. So I don't know. I'm going request a copy in the upcoming days, and if I have trouble understanding it, I may ask everyone.

Thanks again!

I have often struggled with doubts about my diagnosis, as I as well have had very limited cat and most of my symptoms have been related to brain fog/cognition/memory issues, and yes the goddam headaches as well. I've had headaches that lasted for months! Ultimately, I think they're beginning to understand that Narcolepsy presents in a variety of ways; the lack of recuperative sleep and promotion of rem behavior into wakefulness just has a snowball effect across the brain, causing widespread dysautnomic conditions. Migraines, diabetes, POTS, fibro, and many other conditions are oft reported in tandem with N.