Quantcast

Living with Narcolepsy

Sleep "attacks"?


#1

I have a concern about some of the information being circulated by the media. In almost all cases, narcolepsy is defined as subjecting people to "sudden, uncontrollable sleep attacks." In casual surveys, however, it appears that this is absolutely NOT always the case; that is, most of us experience Excessive Daytime Sleepiness (EDS) as pervasive and often overwhelming, but we are aware of being sleepy. To complicate matters, in many cases (including the recent YouTube video that went viral, in which a young woman films herself having a full-body cataplexy fall while trying to teach a dance session) cataplexy is misinterpreted as a "sleep attack" or "passing out" when in general, a person having cataplexy remains awake and alert.

The reason for my concern is that if doctors believe narcolepsy is defined by a person having 'sleep attacks,' they will miss the diagnosis of narcolepsy if a person is subject only to EDS. The same for the general public; if a person only experiences EDS and not 'sleep attacks,' they may neglect to mention this to their physician.

A recent survey showed an AVERAGE time between onset of symptoms and correct diagnosis of narcolepsy of 14 YEARS. In the interest of helping decrease the time to diagnosis and therefore provide access to safe and effective treatments, in many cases greatly increasing quality of life, I would like to know whether you experience actual 'sleep attacks' that come on without warning! If everyone does, I'll shut up about it. ;-) If not, I'll keep trying to correct public perception! :-)


#2

No I do not have sleep attacks, I experience EDS all through the day. I understand exactly what you mean when you say you are concerned…


#3


Thank you very much, Punkin! :-)


Punkin said:

No I do not have sleep attacks, I experience EDS all through the day. I understand exactly what you mean when you say you are concerned..

#4

I experience both EDS (most frequently) and (less frequently) sudden uncontrollable urge to sleep. The latter usually when my medication has timed out and I haven’t taken another dose - I know to give in and sleep to avoid accidents like dropping things, falling, etc. I have never passed out with cataplexy - what I experience is a feeling of extreme weakness for a very short period of time.


#5

Hello Nel,

Good question, accurate information about any disease is very important. The problem is trying to "qualify common symptoms" and then diversity of symptoms particularly with narcolepsy. Yes, I think many people with EDS have undiagnosed narcolepsy.

But to answer you question about "sleep attacks" my lifetime experience with narcolepsy but diagnosed at 58?

It was a mixed blessing finally finding out what had affected me all my life. But the manifestations of narcolepsy did change over the years.

1. As a young child 3-11 I remember: Horrid dreams and being paralyzed unable to move my body. Constantly being "put to bed" because they though I was "tired" (I even remember protesting "You better not put me to bed!!!!"...shocking for a young child.

2. Elementary school, annual testing very high/class work almost failing, "Ranger daydreams a lot", stares out the window on most every report card. They could not understand how I could test high and do so badly. Now I know.

3. 18-48 massive coffee drinker, actually looking back was working at my job in "automatic behavior", end of the day could not remember one thing I did working on a multitude of projects, but everything was correct. Driving....How did I get here, what roads did I take.

4. 49- 59 EDS, Sleep attacks - passing out at the keyboard at work, in meetings and in my office, insomnia,

59- current: Horrid nightmares come back, and sometimes good dreams!!!, parallelized upon waking, automatic behaviors, rigors, cognitive and memory fading at times, sleep now events, sleep attacks. EDS.

5. My sleep attacks "without warning" are only when "I'm sitting in a safe place" now...Couch/Movies, Church, etc.

I do have an awareness of fading "cognitive abilities" to stop doing what I'm doing, "the "Sleep Now" bell rings which is basically go lay down "gear up" I'm a "hose head" OSA and now "bite guard" for hearing issues. So the process of sleeping is a little more involved LOL! Regarding OSA treatment is VERY important! Untreated OSA can increase mortality something like 71%. CPAP did not cure EDS but it's hopefully preventing heart attack, stroke, organ failure....

Short answer for sleep attacks: yes and no, we are all different, things in life change, I'm still looking for answers.

I don't know if this will help anyone but the dear souls Here "will understand You" and that anything you share hear. Those around you? as badly as You want and I want to be understood, they may never get it. (Yes it still makes me feel hurt and angry at times....)

I've got to learning to let that go, I "like myself, even now", "I accept my limitations with a clear and true heart". It's not "how much I do in life", it's about what I do, with what I can do...and how I treat others.

Way too long, sorry insomnia tonight....

Smiles to all you brave souls. Love your self and then love your neighbor!!!

Ranger

(I do not drive if I'm not "100% with it", sleepy, tried or cognitively impaired.)


#6

Hi there! This is my first post here. I was diagnosed in 1996 with Narcolepsy w/Cataplexy. In regard to your question about Sleep Attacks. I believe my sleep attacks do just appear as defined above, sudden and uncontrollable. For instance right now I feel fine. No EDS, no brain fog, I am wide awake. But at any moment that can change. When it does, obviously it's sudden and there is nothing I can do to control the so called "desire to sleep" from being. If I don't acknowledge this sleep attack for what it is and go take a nap (usually 15-20 min) then the feeling intensifies. The brain fog kicks in, concentration is difficult, conversing becomes a very trying task. I become irritated. .Eventually Cataplexy (neck weakening, jaw dropping) presents itself.

So yes, I do have sleep attacks that are sudden and uncontrollable. I am aware at the time it is happening but can not predict when it will. I don't suffer from round the clock EDS. When I nap at the onset of a sleep attack, I usually wake up feeling fine.

Hope this was in line with what you were looking for.


#7

Thank you so much for sharing your experiences, Ranger! And thank you for the reminder about how very different we all are. :-)

Ranger said:

Hello Nel,

Good question, accurate information about any disease is very important. The problem is trying to "qualify common symptoms" and then diversity of symptoms particularly with narcolepsy. Yes, I think many people with EDS have undiagnosed narcolepsy.

But to answer you question about "sleep attacks" my lifetime experience with narcolepsy but diagnosed at 58?

It was a mixed blessing finally finding out what had affected me all my life. But the manifestations of narcolepsy did change over the years.

1. As a young child 3-11 I remember: Horrid dreams and being paralyzed unable to move my body. Constantly being "put to bed" because they though I was "tired" (I even remember protesting "You better not put me to bed!!!!"...shocking for a young child.

2. Elementary school, annual testing very high/class work almost failing, "Ranger daydreams a lot", stares out the window on most every report card. They could not understand how I could test high and do so badly. Now I know.

3. 18-48 massive coffee drinker, actually looking back was working at my job in "automatic behavior", end of the day could not remember one thing I did working on a multitude of projects, but everything was correct. Driving....How did I get here, what roads did I take.

4. 49- 59 EDS, Sleep attacks - passing out at the keyboard at work, in meetings and in my office, insomnia,

59- current: Horrid nightmares come back, and sometimes good dreams!!!, parallelized upon waking, automatic behaviors, rigors, cognitive and memory fading at times, sleep now events, sleep attacks. EDS.

5. My sleep attacks "without warning" are only when "I'm sitting in a safe place" now...Couch/Movies, Church, etc.

I do have an awareness of fading "cognitive abilities" to stop doing what I'm doing, "the "Sleep Now" bell rings which is basically go lay down "gear up" I'm a "hose head" OSA and now "bite guard" for hearing issues. So the process of sleeping is a little more involved LOL! Regarding OSA treatment is VERY important! Untreated OSA can increase mortality something like 71%. CPAP did not cure EDS but it's hopefully preventing heart attack, stroke, organ failure....

Short answer for sleep attacks: yes and no, we are all different, things in life change, I'm still looking for answers.

I don't know if this will help anyone but the dear souls Here "will understand You" and that anything you share hear. Those around you? as badly as You want and I want to be understood, they may never get it. (Yes it still makes me feel hurt and angry at times....)

I've got to learning to let that go, I "like myself, even now", "I accept my limitations with a clear and true heart". It's not "how much I do in life", it's about what I do, with what I can do...and how I treat others.

Way too long, sorry insomnia tonight....

Smiles to all you brave souls. Love your self and then love your neighbor!!!

Ranger

(I do not drive if I'm not "100% with it", sleepy, tried or cognitively impaired.)


#8

Hi Lora,

Same here for me - sleep becomes irresistible mostly between doses of medication. I schedule naps for those times, which seems to be helping a lot (not that I love having my day come to a complete stop while I 'recharge'). I take my next meds before my nap, so that when I wake up I actually 'wake up!' :-)

Lora said:

I experience both EDS (most frequently) and (less frequently) sudden uncontrollable urge to sleep. The latter usually when my medication has timed out and I haven't taken another dose - I know to give in and sleep to avoid accidents like dropping things, falling, etc. I have never passed out with cataplexy - what I experience is a feeling of extreme weakness for a very short period of time.

#9

Yes, JuDee - that's exactly the kind of info I was looking for; thank you! It reminds me how very different we all are.

JuDee said:

Hi there! This is my first post here. I was diagnosed in 1996 with Narcolepsy w/Cataplexy. In regard to your question about Sleep Attacks. I believe my sleep attacks do just appear as defined above, sudden and uncontrollable. For instance right now I feel fine. No EDS, no brain fog, I am wide awake. But at any moment that can change. When it does, obviously it's sudden and there is nothing I can do to control the so called "desire to sleep" from being. If I don't acknowledge this sleep attack for what it is and go take a nap (usually 15-20 min) then the feeling intensifies. The brain fog kicks in, concentration is difficult, conversing becomes a very trying task. I become irritated. .Eventually Cataplexy (neck weakening, jaw dropping) presents itself.

So yes, I do have sleep attacks that are sudden and uncontrollable. I am aware at the time it is happening but can not predict when it will. I don't suffer from round the clock EDS. When I nap at the onset of a sleep attack, I usually wake up feeling fine.

Hope this was in line with what you were looking for.


#10

It is so interesting to see all of these posts. It shows the vast variations between each of our experiences, which is something we all much remember. All of our experiences will be different. This is something I have faith that our health care professionals are keeping in mind. None of our experiences will be the same.

As for the symptoms we experience at a young age, this can be tough to determine as a clear diagnosis as N. Especially in the past. Having my daughter evaluated recently, we decided to leave it off and let her be unless symptoms persist or worsen over time. The treatments are not exactly productive to a young child's system and would be less desirable than the actual effects of Narcolepsy its self until a certain age any how. We will have re-evaluated in a few years if things do not get better.

I agree that many may go undiagnosed with Narcolepsy but on the other hand I do believe that many get falsely diagnosed with Narcolepsy as well. There are so many illnesses that can have similar sleep disturbances without true N distinguishes but doctors diagnose it due to the concern of not properly treating such a debilitating sleep disorder. You have to take into consideration things like hypersomnia, shift work sleep complications, insomnia and similar issues. There are true markers they look for in the MSLT for Narcolepsy. Hopefully with a good sleep specialist, your diagnosis will be made accurately.

It is a hard condition to diagnose, treat, manage and even more so live with. The best thing we can do is continue to support each other, raise awareness and educate our communities and health care professional. Hopefully one day we won't have to worry about these things! :)

I commend all of you for you strength and confidence you build in yourselves and within each other through things like this!


#11

Yes I am amazed at the multiple different experiences othes diagnosed with Narcolepsy have. It is as unique as each person is. I feel sometimes that maybe someone with the diagnosis should consider getting more testing to verify that what they have is indeed N and not something similar. But I don't feel comfortable telling some one this. But I for one am for excluding out any question of other probable diagnosis. Test, test, test. Time consuming and costly, but it's what is best for your body, mind and soul.


#12

Jude, I completely agree with you. Testing can be a pain, but it is something that can be of great importance in some cases. People often get so stuck on the idea of N being the only thing that can cause these symptoms of excessive daytime sleepiness, but often forget the true symptoms of N its self. Excessive Daytime Sleepiness can be a symptom of so many other illness, some of which can be much worse than N and sometimes carrying life threatening complications. If we focus on N we won't know there is something much worse lurking in the background. Nel, you have many of our symptoms but do not suffer from N. You are a prime example. I hope you do not mind me using you as an example for this.

Narcolepsy does have excessive daytime sleepiness as a symptom, but if you do look at the true description of the type of excessive sleepiness described on many medical sites it does describe it as individuals falling asleep without warning. So the debate does stay open to interpretation and that is why these secondary conditions stay labeled as "Narcolepsy like" disorders and are treated just the same. Some doctors may not even diagnose with the other conditions and diagnose with N because it is easier to get insurance to pay for medications. There is a whole slew of problems in the medical community in many areas which leaves medical professionals with their hands tied when it comes to diagnosing and treating sleep disorders like this.

Also, they just tightened down on the regulation of neurostimulants again. So doctors will have to do even more work for some individuals who are being treated for N. I just had to go through a whole big issue with my insurance company to continue getting Adderall. They actually wanted a copy of my sleep study to be accessed by one of their doctors before they would approve paying for it.


#13

I'm not sure how to answer this, pwntek: I will just describe the attacks that I have. I usually experience EDS. I am tired all of the time, in fact, exhausted. As I have mentioned before, most of my attacks have occurred while I am driving. I have only had 2 attacks when I've not been driving. With my attacks, I can't necessarily say that I feel like I'm going to go to sleep prior to the attack. I just lose consciousness and when I come to, I find myself in trees, bushes, poles or on the floor, in the bed with multiple bruises with very little recollection of what preceded in the minutes prior to my waking up. I am usually groggy when I do "wake up/come to my senses" but within a few minutes I am able to function normally after the anxiety of having the episode wears off.


#14

Yes you are right. I too suffer from EDS most of the time and the perception about sleep attacks is not quite accurate but i do experience sleep attacks sometimes.


#15

I haven’t been officially diagnosed yet, but I’ve been symptomatic for just over five years. Most of my sleep attacks come on while I’m driving. One minute I can be cruising along, 100% alert and fine, and then I feel just the beginnings of a tickle or scratchy feeling in my eyes. From the first moment of sleepiness, it takes maybe three to five minutes to gradually intensify to the point that I’m miserable and would like nothing more in the world than to put my head down and sleep. My eyelids are ridiculously heavy and my eyes don’t want to stay in focus. I fight it by rolling down the window, turning up the music and singing, fidgeting and shifting around in my seat, shaking my head, and sipping water. Those all work to keep me awake, but it takes every ounce of my energy and if I have a long way to go the effort to stay awake often gives me a headache. Makes no difference if it’s night or day.
I’ve NEVER fallen asleep against my will. I’ve fallen asleep without particularly wanting to, i.e. when I’m in the middle of a book, movie, or road trip, but never when I absolutely have to be awake, such as when driving or while at work. If I’m in a safe place to sleep and an attack comes on, I don’t bother to fight it because it’s not worth the tremendous amount of energy.
So my conclusion is the involuntary urge to sleep can come on at any time, but actually sleeping can be avoided if absolutely necessary, at least for me.


#16

This is actually one of the reasons my diagnosis was delayed. I was only just diagnosed (22), but I’ve had symptoms as young as 8. I think the media is thinking of cataplexy, but according to what I’ve read, the patient is fully conscious during cataplexic attacks.

And while I’m very, very relieved I dont have cataplexy, I think it’s really harmful to the undiagnosed for the media to continually say that cataplexy is the primary symptom and identifying trait, because it delays them seeking help.


#17

I was recently diagnosed with type 2 narcolepsy and I too am confused about the common perception about “sleep attacks”. It took 7 years from the onset of my symptoms until I was diagnosed after a positive MSLT and medical history and symptom evaluation by my new neurologist. Due to the fact that I have always been in doubt about whether my symptoms were real or just psychosomatic I have most often pushed through the heavy waves of sleepiness that come over me throughout the day. I have also been either a full time student or had a full time job since my symptoms began, so I rarely have had opportunities to just take a nap despite having trouble keeping my eyelids open.
My EDS varies from day to day and is generally characterized by a constant of feeling moderate sleepiness with additional intermittent extreme waves of sleepiness throughout the day. These more extreme periods of sleepiness are usually accompanied by a significant lapse in short term memory, dizziness, and blurred vision and will often end up daydreaming or spacing out on most of my 1hr 45min lectures at my university, but never spontaneously fall asleep against my will (at worst I will consciously put my head on the desk and go into what I think is light sleep) . Sometimes I will have to leave school and go to my apartment in the middle of the day and sleep when EDS becomes unbearable, but I have gotten pretty good at fighting against it and telling myself it’s all in my head and not real. Of course now that I have a diagnosis I am taking napping much more seriously as I acknowledge that it’s immensely important to maintaining brain functionality with Narcolepsy.
Some other things I deal with:
For some reason I struggle immensely to get through reading anything during the day but have an easier time when lying in bed before calling it a night. I rarely drive (few times per year) but only with other adult passengers because I can get very sleepy on the road. One time I fell asleep for just a few seconds before snapping out of it as I was veering towards another car going 65+mph and ended up fishtailing after overcorrecting, but was lucky enough to stabilize and avoid a crash. I also stopped rock climbing because I was so sleepy most of the time and didn’t trust myself with belaying climbing partners. I feel most refreshed when going on walks, but pretty much all other activities I am really struggling with EDS.


#18

Hey y’all. My narcolepsy is so much fun “let’s see if I can stay on topic for you” I have only had two “sleep attacks”. That is when I was pregnant and before being diagnosed but I also didn’t fall. I stood straight up against the door the whole time which was 10 minutes. I always have warnings that I’m going to fall asleep. It can be muscle tone loss, my hands start shaking more, I start skipping words or I get that brain freez feeling. I know I need to go set down. Also it normal last for 10-15 minutes, during which time I can hear everything that is going on around me. I just can’t respond to you cause I’m dealing with the paralysis. When I wake up, depending on what put me down in the first place. I can normal go back to what I was doing with no issues. Other times are not so easy, it will take a while just to be able to move, sometimes I just have to change how I am doing things and then you have the one’s that are really bad. Those if they happen at work, another manager will come in to take over and call my husband to come get me. Cause I can’t drive or even stand up on my own. When he gets me home, my dog puts me down and I will be down for at least two days. I also deal with “micro sleep” I don’t normally notice them tell alot of them start coming back to back. Or tell one of my team members gives me a look, " like do what? You just lost me?" then I realize that I just skipped ether a few words or a full sentences. When I was given them direction on what they needed to do. I then take a step back, to find out why that happened and it’s normally from to much information at onetime. So, when I decided what it causing it, I then pull one person to be my shadow and then I put myself in a station where I can still take care of my team. But I can control the information I’m dealing with. Once I notice that I’m not as overwhelmed and my team is understanding everything I’m saying again. I know that the “micro sleep” is undercontroll and that it’s not going to put me down for the nap. Another thing with my narcolepsy, is when I deal with a high emotion situation. “Like two people about to get into a fight in my store, or a guy coming in when I have a girl team and makes them uncomfortable. Or someone trying to coming in the drive thru side door.” I go on full alert, which is I’m wide awake, notice every little thing, in full control over the situation, I know where everyone is and everyone around me can feel that. See I have been told and from the things I have found. It shows that most of us with narcolepsy, when dealing with high emotion situations will normally fall asleep. I know I don’t fall asleep when it’s happening, I go on high alert and so I was wondering. Have y’all delt with a issue with high emotion and how did you handle it?
Hope this is what you were looking for and hope I stayed on topic. Rachel


#19

JuDee,

This is a great description of my similar experiences with sleep attacks. Thank you for that.
I have sleep attacks pretty regularly. I read this description once and think it describes what its like very well. A sleep attack is like being hit with three
Benadryl all at once at the most inconvenient time.
Some weeks I have more sleep attacks and others I have less, but its often enough to be aware of what it is as it happens. There’s no rhyme or reason to it sometimes. I have learned that fighting the attack is does more harm than good. But sometimes its not always easy for me to take a 15-20 min nap. You are right tho, if I can get even 8 minutes of shut eye when an attack starts, I feel great afterwards and back to normal.
Please read up my discussion “Narcolepsy at work: Yes to ADA?” if you would like to see what Im currently dealing with at work. I had my first sleep attacks at my job of 2 years and I have been taken off schedule ever since.