Narcolepsy

[Heiferly]

I had posted months ago about episodes of paralysis I was having as I was coming to from syncope. I was getting nowhere with the entire neurology department at the hospital I use in terms of finding an explanation for these episodes, and the main neurologist I saw there had basically started treating me like a nut. I got a referral from my cardiologist to a neurologist outside of that hospital system, and started working with the specialists in his office basically starting back at square one and seeing the different sub-specialists there. Today I finally have my answer.

The sleep specialist there was EXTREMELY thorough, taking a history that went all the way back to my early childhood, rather than just from the onset of my POTS symptoms like other doctors have done. Apparently, I have had narcolepsy since I was a child, well before the onset of the POTS/syncope. But the cataplexy (paralysis) started only when the syncope started, as in my case, fainting seems to trigger the attacks. I am very relieved to finally have an answer, and to have found a doctor who was so thorough in examining all of my records and taking a complete history from me, so that he could really figure out what was going on.

[firewatcher]

FANTASTIC!

I am so happy you found an answer! AND a doctor that listens to you and is competent! I hope this is the first step on your way toward a better quality of life and sense of well-being! At least it is treatable! I am sorry for the narcolepsy, but it is wonderful to get a diagnosis!

[mjan]

Its nice to have MDs beleive in you AND be knowledgable.

Someone else here told ME to look up Periodic Paralysis. Because I am about to go through testing for Narcolepsy with cataplexy.. I do not have the typical strong emotions that lead to my attacks. I ALWAYS have autonomic symptoms that can lead to these episodes where eventually I look like I am unresponsive or not alert..cannot move arms legs..keep eyes open.. BUT I can hear.

What are your episodes like?

Jan

[Heiferly]

I don't have attacks from strong emotions either. The doctor said not all people with narcolepsy have that same trigger. According to the Narcolepsy Network website:

"Cataplexy (the other hallmark symptom of narcolepsy) is a sudden loss of voluntary muscle control, usually triggered by emotions such as laughter, surprise, fear or anger. It occurs more frequently during times of stress or fatigue. The cataplectic attack may involve only a slight feeling of weakness and limp muscles (such as sagging facial muscles, a nodding head, buckling knees, loss of arm strength, ?garbled? speech); but it may also result in immediate total body collapse, during which the person may appear unconscious, but remains awake and alert. These attacks may last from a few seconds up to thirty minutes." [emphasis added]

Another thing I found pertinent to me there was that cataplexy occurs more often "during times of stress or fatigue." Mine seems to be almost always triggered by syncope (except maybe one time it was triggered by near-syncope and another time I don't know what triggered it), and I guess that would pretty easily qualify as a time of stress, so in that context it makes sense. For me, I come out of the syncope but I can't move at all or speak but my eyes are open and I can see out of them and I can hear; it takes varying amounts of time to "wear off" for me from minutes to sometimes hours to be completely not weak or paralyzed anymore, with no more slurred speech. When I have been at the hospital during these attacks, the doctors and nurses have thought I was still unconscious.

I was tested extensively for periodic paralysis, and though I do have hypokalemia, the tests for PP came back negative. Good luck with the testing! I hope you find an answer like I did--I know how frustrating and scary it can be to have these attacks and not know what is going on!!

[mjan]

OK.. thats closer to what I have gone through. With periodic paralysis it can be sudden weakness...so I am confused.

How did they diagnose you for sure with narcolepsy with cataplexy?? And.. what kind of treatment are you receiving??

Can you drive?

Jan

[Heiferly]

They do the diagnosis through a rather detailed history (at least with me he asked about a million questions going all the way back into my childhood and everything), and poring over my medical files. And by the results of the sleep study. There are also some other tests they can run that aren't conclusive in and of themselves, but can help give clues if it's still fuzzy after they get the history and the sleep study. He said my case was black-and-white so I don't think they're going to do those other tests (a blood test, a spinal fluid test, something like that--I read about them online, but from what I read they don't seem particularly useful since they're not entirely specific/accurate for narcolepsy--I think they use them more often in cases where the person doesn't have the cataplexy symptom).

I still can't drive because I faint frequently from the POTS, and well, we haven't even started trying to treat the narcolepsy yet. It'll be a little complicated because of the POTS and trying to avoid medication interactions/adverse side effects that would exacerbate the POTS. But I'm hopeful. He's going to get in touch with my other doctors to talk about meds and everything so they can collaborate on a treatment plan. I'm not in a rush; I can be patient. For now I'm just relieved to have an answer. One step at a time. :-D I'm still waiting on my appointment with Dr. Grubb as well.

[morgan617]

Did they do the daytime sleep study on you? There are really specific criteria you have to meet in these studies to have narcolepsy.

My hubs was diagnosed about 15 years ago with a severe level of narco and has been on Ritalin forever. He failed every aspect of the sleep study. He falls asleep within 5 minutes of sitting and doing nothing, regardless of whether he's taken his meds or not.

The weird thing is, he doesn't have ANY cataplexy at all! He doesn't realize he's fallen asleep till he wakes up and says something stupid he was dreaming about...LOL But he has never collapsed when laughing, or stressed, or for any reason. If he is anxious or stressed, he just can't stay awake. I am the limp rag and I don't have it.

Narcoplepsy is weird like everything else, some people have some of the symptoms and some have all and some hardly any, even when it's severe.

I had the night time/day time study done in December and even though I fell asleep, I did not enter rem sleep in any of my naps. Hubs average time to fall asleep in 5 sets spaced 2 hours apart was about 30 seconds and he went straight to rem every time. Unequivocal.

I'm not trying to negate anything you have to say about your diagnosis and the fact you had a sleep study is good, but at the beginning it sort of sounded like he had diagnosed you without a sleep study and I can't imagine that happening. I would say congrats, but narco sure isn't any fun either! But it is nice to have the validation and it is sure not my intention to take anything away from that. I think Dave is kind of weird, because his doctors are a bit flummoxed by the fact his is so severe, but he has zero cataplexy with it. Maybe POTS contributes a large degree to the degree of cataplexy. So many more questions than answers.

Anyway...I hope they are able to find a good med for you, they have so many more choices than they used to and hopefully less side effects than ritilin would if you have tachy problems. Good luck and so glad you found a keeper doctor! That's always a good thing to hear! morgan

[Heiferly]

Yes, I'm actually having a second sleep study done; I think they will get more information this time because they're doing it slightly differently with my meds. They're rather clear on the diagnosis. The part that went off my history strongly was that the narcolepsy started in my childhood and predated my POTS; they could tell because I had sleep paralysis and other symptoms even as a young child. At summer camp in middle school, every child got a unique certificate at the end of camp ... best at fishing, best singer, most outgoing, etc. I'm not at all joking when I say I brought home a certificate that read "The Sleepiest." Kind of embarrassing, but now it makes a bit more sense finally; at least I know I wasn't just lazy.

[jjb]

Wow!

Beside sleepiness, did you have any other symptoms as a child?

My daughter has unusual episodes and we are not sure what they are.

We both have EDS. I have dys, she probably does.

My daughter has epilepsy and her "episodes" (I call them episodes because we are not entirely sure if they are true epileptic sz or not)

Anyway, her episodes are what I call autonomic blips. She will flush, become tachy, sometimes o2 drops into th 80s, she gets nauseas and sometimes has several episodes of vomiting.

They cycle and cluster. Occur every two to three weeks and she will have a day of having numerous episodes of the above symptoms. Her awareness is usually not altered (as in a generalized or complex partial).

HOWEVER ... if she goes status (prolonged episode) she pretty much becomes paraylyzed. The last time this happened was in Sept. She was playing with he cat while I was in another room. I walked in on her unable to move (not stiff as in a tonic sz)

She was able to respond with her eyes. During this period her temp jump to 102, HR 160 and so on.

Lasted about 15 minutes.

We are still trying to figure out if these episodes are sz, something autonomic that is not sz, or prolonged cataplexy.

We have one of the best epilepsy sp in the country ... she is not entirely sure. We see Dr Peter Novak next Friday .. he is an aut neuro as well as movement disorder sp.

I am really hoping he can help us.

Can you please tell me, beside your fainting, do any other aut symptoms cause your cataplexy?

[mjan]

This all gets complicating doesnt it?

But JEN..your daughter does not sound epileptic. Did they actually see an abnomal EEG?? Did they do the 3 day video EEG?

Cuz I get an "aura" that I am going to get these "episodes" as I call them too. IT ALWAYS starts with autonomic symptoms...high BP/TAchy.. and then speech problems.. then altered state of consciousness when I end up in the ER. To THEM it looks like I am sleeping or unresponsive. BUT I can hear? IS your daughter aware of what is going on..but.. cannot move?

So I would look into cataplexy with a sleep study done.. or.. periodic paralysis. Seizure meds are horrible..(my husband was epileptic) and unnecessary esp to a child if not needed.

LEt us know how she's doing.. or PM me..

Jan

[Heiferly]

I have had episodes of sleep paralysis as long as I can remember. I also had extremely vivid dreams as a child--one which I had repeatedly throughout childhood which I think was a hypnagogic hallucination, but it's hard to be sure this long after the fact. The sleep paralysis I'm positive about, though. It got more and more frequent and peaked during adolescence and is now less frequent. It was extremely frightening to me as a child because I had weird sensations during it like the feeling that I was being rapidly pulled through space and hearing a whooshing sound. (I later learned I was just hearing my own blood flow in my ears during these episodes.) But as a child, your imagination runs wild during such a frightening experience when you are awake but your body stays "asleep" and paralyzed, and you attribute all sorts of frightening, supernatural ideas to it. Thankfully when I got older a doctor eventually told me that what I was experiencing was something called sleep paralysis and it was entirely harmless, but for some reason no one thought to check me for narcolepsy at that time. :-/

There is only one time for sure that I can think of that autonomic symptoms other than fainting brought on the cataplexy. I was walking up a flight of stairs and started going very tachy and light headed and I remember thinking that I should sit down before it got worse so I wouldn't faint and the next thing I knew I collapsed and was paralyzed; it was very confusing at the time, because I knew I hadn't actually fainted. I guess you could say OI symptoms triggered that one. Another one came on under weird circumstances in the middle of the night, and I'm not sure what triggered it. I woke up with the thought that I was WAY overheated. MAJOR hot flash. I got up out of bed, and I'm a little fuzzy on the details, but I *think* I fainted briefly before the cataplexy. It's hard for me to fully grasp that one because I wasn't fully awake, since whatever was going on pulled me out of a dead sleep.

I have also had at least one incident where the cataplexy did not affect my whole body. One day I was standing toward the edge of my porch, getting ready to leave my house, and my legs just suddenly went out on me. I ended up going head first down the cement steps off the porch, but my upper body remained in control. Only my legs were affected by the cataplexy. I have no idea what triggered that one; it is possible it could have been emotion since it was the first really nice spring day of that year, and I was excited to be getting out of the house, but I'm trying to speculate in retrospect so I don't really know if I was getting excited right then.

Compared to the frequency with which I faint, the cataplexy happens to me pretty rarely--maybe a half dozen times a year? Certainly less than once a month, I'm sure of that. Sorry I can't be more specific/helpful. It's been hard to draw the line in the past between where one type of "episode" ended and another began, especially when I didn't have diagnoses and names for the different things, and trying to make these distinctions in retrospect isn't always easy either.

[ajw4790]

Hi,

Congratulations on finding some answers! I don't have any words of wisdom etc., but I think it is great when someone is able to get some answers to something that they have been dealing with like this.