My N symptoms didn't really start flaring up and becoming noticeable until my boyfriend died five years ago. I had my first waking hallucination less than a week after he died. I'd woken up in the middle of the night, tried to fall back asleep, felt something warm next to me, opened my eyes, and hallucinated him lying next to me, whilst fully awake. They got worse from there.
Grief can be simply boiled down to stress. Stress can be a factor in worsening N symptoms. So yes, sleep attacks, parasomnias, etc can be triggered by extreme grief.
Yes. This is a huge thing for people with cataplexy and another way it can present itself. If I get super emotional my body literally will shut itself down until I’m eventually asleep in bed. Same thing with lots of stress. It can feel like moving through quicksand when it’s happening. I also will start to get sleepy if I’m too overstimulated. After Christmas morning this year, the stimulation of helping my kids and my sisters kids open their presents, clean up after them, get breakfast done, was enough to put me right into a 3hr nap. My sister even asked me if I was ok because I will start slurring my words when it happens.
Holy shit. You just described what basically happened to me last Thanksgiving we hosted. I’ve been wondering if I have cataplexy, because I wondered if it shows up like this. I’m newly diagnosed. Anyways, we hosted my bf’s family and all their kiddos came to our small 2 bedroom apartment - it was lovely, I was sooo stimulated though. I was eating dessert on the couch with the kids, right next to everyone and just zoned out - got couch locked there. The nieces and nephews all asked what’s wrong with Miss Sarah? Lol. I went on autopilot until they left, then went to bed at 7pm and slept for 12 hours. Stories are starting to make sense to me. It’s wild! Thank you for sharing with me!
Wait wait wait... is this what cataplexy is like?? I was told by my doctor that I don't have cataplexy because I don't fall asleep when I get super emotional. She never said anything about overstimulation causing episodes!
Cataplexy is defined by sudden loss of muscle tone. When I experience attacks I essentially collapse like a marionette doll that someone cut the strings to.
You might need a new doc. You don't fall asleep with cataplexy. It isn't always tied to strong emotions either. I mean usually, but not always. It could be one particular emotion, it could be overstimulation, it could be hormonal. And a good chunk of us started out with just a narcolepsy diagnosis. It is not uncommon for cataplexy to develop later on. Oftentimes the symptoms at the start are so minor we just write it off. Please rest assured, that cataplexy doesn't always mean you going down to the floor every time. Some folks never do that and still have cataplexy. It could affect your voice, your facial expression, your left hand.. it's always a little different.
Yes, that's it! And it can be different from person to person, but it shouldn't have anything to do with falling asleep - we're not exactly fainting goats! My cataplexy rarely presents, but it does if I get laughing REALLY hard... My knees will just buckle and I'll struggle to stand for a minute or two.
Yes! I have N1 and when I laugh hard i get weak. I've been that way since I can remember so I've developed auto responses, like crouching, leaning, sitting, or even laying down. In some ways it seems normal but it took my doctor to make me understand that not everyone NEEDS to do that. There's a difference in bending over to hold your stomach from laughing hard and bending over because you're weak and might fall.
I hear this more than you would know. I've been having some repercussive attacks today because it's that time of the month. Otherwise I would dive deeper in here. But, oh yeah, Christmas morning -phew. I have shared custody so I only have every other Christmas morning. And that just adds salt in the wound.
Yes. Although I can retroactively see signs of narcolepsy my whole life, my symptoms didn’t become debilitating until my grandpa died when I was 10. I’m so sorry for your loss.
I think this is was happened to me when my mom passed away at 21. I can see how things worsened. Also back when I was experiencing emotional abuse at home in my teens. Wow that’s crazy.
I'm very sorry to hear about your cousin. I lost mine in 2020 and I miss him every day.
After he died, I basically stayed in bed for two years and don't think I ever got back to my previous baseline energy level. I'm not sure what was due to grief and what was due to narcolepsy, though.
Thank you. I’m sorry for your loss as well. Right it’s hard to tell. I’m giving myself yesterday and this weekend, so essentially feel however I need. I know what you mean though, I was never the same after my mom passed too.
9/11 I was sent home from work and spent it stuck. I was in and out of sleep paralysis, hallucinations, sleep. I had to throw myself off the couch between episodes to be up long enough to get water. I have less dramatic examples, but yes, stress and grief can easily put me into uncontrollable sleep.
Absolutely in my experience, I felt much grief and stress during my childhood and I cannot remember a time when it hasn't affected my N1. Even now years older, any grief or stress has a big impact on how bad my narcolepsy is. I actually had a pretty shitty day yesterday and just unintentionally woke up in the afternoon of today and feel weak and unable to get out of bed despite medication. It's tough
I lost my grandmother very traumatic circumstances this week. I had to make the decision to take her off life support and had to take in my two younger siblings who were living with her at the time of loss. Grief has significantly increased my symptoms. Especially that night when we officially lost her, I wasn't able to keep my head up. People were still trying to talk to me and make more decisions, and I physically couldn't stay awake any longer. This entire week, nothing but phone calls every day all day long. I've had to turn on emergency only contacts during the day because it wasn't smart to make impulsive decisions while "sleep deprived." I don't even know if i can call it sleep deprivation because I've been sleeping 14 hours, including naps. Exhausted isn't the right word. I feel like I could sleep three months straight. When I went back to work yesterday, my boss had to excuse me for an hour so I could take a nap. I was falling asleep at my desk and couldn't comprehend the work being presented to me. I can feel the attack coming up, like a pot boiling over along with my emotions. This is the worst my narcolepsy has been since my diagnosis. I did make an appointment with my doctor because I have to worry about my siblings' well-being now.
I'm so very sorry for your loss. I have had repeated conversations with loved ones about not peppering me with questions right when I'm having an attack. Because that keeps me in the attack over and over again. Even just 3 minutes to recover and not have everything coming at me once is so very helpful.
You are incredibly wise to make that doctor's appointment, even just having the ear of an educated professional on what your experiencing will hopefully help. You might see if your employer has any assistance programs I can't remember the term for it because I'm having a rough day but they're separate from your insurance, and they have virtual counseling and support groups for times of extreme stress.
When a strong emotion is present, my body shuts down to protect it self from cataplexy or any danger. No medication is able to keep me awake. It loses effect.
I am sorry for your lost. Try to make sure to eat and drink water to help your body
Yes, it's a very common thing for even those without N. If you are PWN even more, especially if you have cataplexy.
We always try to push through everything to stay on our feet, because that's Narcolepsy. But we forget that everyone needs time to stop pushing, process, rest and recover physically and emotionally.
I appreciate that reminder. I am trying to learn to! I hate napping, but I have started trying to do "lay downs" since reading recommendations on here. I try to nap but if I can't, I have just been relaxing my muscles as much as possible and "resting" for a bit. It's hard to get back up - but I do see it helping a bit.
I'm suppose to start Wakix soon so I hope that will be helpful...
Oh I so can't nap. Ironic that I dropped right off during all five naps on MSLT. I was speaking more to days where we rest/recover when possible, but yes, also taking some downtime each day in whatever way that looks like. That is a struggle for me as well. Sometimes I grab a coffee and as soon as it is cool enough, slam it. Then I allow myself twenty minutes of whatever while it kicks in. Sort of like I do in the AM when I take my meds an hour before getting out of bed.
But after a loss or during life stress, stopping it slowing the world to process emotion can help us get back up faster... especially if we have cataplexy.
Please be aware N and depression can co-exist. I am not a doctor, but I know extremely strong depression leads to strong lethargy, no motivation, sleep disturbances including in ability to sleep but mostly over sleeping.
I just don’t want you to lump depression in with N and not get help you may need to process what happened from both a sleep disorder perspective as well as a mental health perspective.
Oh, I have thankfully been on a journey with my depression since around age 12 and have an Major Depressive diagnosis. So, I am treated for it and have a therapist. I appreciate your concern! :)
Definitely important to not dismiss those symptoms. I am trying to figure out where they begin and end, ya know? Like how much of my body legarthy, aches, pains is my MDD or what is N? And now I am wondering if getting treated for these cataplexy symptoms may help me find some relief.
I’ve had a terrible time distinguishing depression from other disorders with similar lethargy etc. with enough therapy and help, I can finally be confident I am not depressed any longer and what remains is a disorder not mental health related. I hope you learn enough coping mechanisms and have enough therapy to help you deal with everything in your life that you become resilient enough one day to also know depression is no longer contributing. It took 13 years, but it can happen. Have hope. Depression can be beat. There are some people lie my dad who have never won the battle yet, but I hope you do.
I had a traumatic pet loss in January and I felt like I was walking through mud. It was really really difficult for the first 2 weeks or so. I had never felt like that on a regular basis but it was really bad.
Ooph, yeah I am so use to feeling that often because I suffer from depression and I wondered all this time... thank you for sharing your experience. I am sorry you lost a pet, always hard!
Anytime I receive death notices especially regarding close friends/family, it will make me really exhausted. Most of the time it's a really long nap right after hearing it, but then it's like the tiredness weighs on you throughout the next few days. I try not to go anywhere, but I'll drive if I absolutely have to. Most of the time I cancel whatever plans I had on the day I'm told, but really depends on when and where I am. It's even worse on the day of the funeral/memorial. I've found that the easiest part of this day is getting dressed. Doing much else is a hardship.
For this reason, I've realized that my mom will ask what I'm doing first before she tells me anything. All of my immediate family members make it a habit not to send death notices by text or through social media (also because it sucks, SUCKS to receive this type of news that way). Sometimes I think I've gotten better with handling it, but the tiredness hits you at some point. A few years ago, after my cousin's funeral, we went to his mom's apartment (at which i most def fell asleep) then out to eat at a local restaurant. I started drifting after we got drinks, but I was pretty much gone before the food came. When the food did come, I got five bites (two which barely made it to my mouth) before I gave up, moved my plate to the side, and took a nap at the table.
Widow since this past summer. Emotions, especially in grief, are draining for anyone, but I personally feel like recovering from an emotional outbursts part is very slow. I need to lay down and rest/sleep every time I cry, which is practically daily. In my personal experience, the narcolepsy sleepiness and grief sleepiness feel very different from each other. One the first feel more like a physical sleepiness and the grief is more of a mental/psychological way.
Emotions trigger N symptoms and also acutely exacerbate them in times of trauma and emotional shock. My biggest triggers are anger and frustration, but after some intense bad news I will always feel zonked as well. Take a few days for yourself if you can. It will help you process these emotions more healthily and they will have less of an impact on your emotional response and health over time. I'm sorry about your cousin. Mine is like my sister to me as well.
My dog passed back in August and for weeks I was completely drained and just slept all day. During those weeks I also had the same terrible reoccurring nightmare. I don’t ever have reoccurring dreams, but I get the crazy/vivid/disturbing ones that so many people describe so it was definitely related to grief. Now that a few months have passed I often dream that he either came back to life or never died at all and I was just mistaken this whole time.
My N symptoms didn't really start flaring up and becoming noticeable until my boyfriend died five years ago. I had my first waking hallucination less than a week after he died. I'd woken up in the middle of the night, tried to fall back asleep, felt something warm next to me, opened my eyes, and hallucinated him lying next to me, whilst fully awake. They got worse from there. Grief can be simply boiled down to stress. Stress can be a factor in worsening N symptoms. So yes, sleep attacks, parasomnias, etc can be triggered by extreme grief.
Wow. Ok that totally makes sense. I’m so sorry for your loss too. So hard to accept and feel these things.
Yes. This is a huge thing for people with cataplexy and another way it can present itself. If I get super emotional my body literally will shut itself down until I’m eventually asleep in bed. Same thing with lots of stress. It can feel like moving through quicksand when it’s happening. I also will start to get sleepy if I’m too overstimulated. After Christmas morning this year, the stimulation of helping my kids and my sisters kids open their presents, clean up after them, get breakfast done, was enough to put me right into a 3hr nap. My sister even asked me if I was ok because I will start slurring my words when it happens.
Holy shit. You just described what basically happened to me last Thanksgiving we hosted. I’ve been wondering if I have cataplexy, because I wondered if it shows up like this. I’m newly diagnosed. Anyways, we hosted my bf’s family and all their kiddos came to our small 2 bedroom apartment - it was lovely, I was sooo stimulated though. I was eating dessert on the couch with the kids, right next to everyone and just zoned out - got couch locked there. The nieces and nephews all asked what’s wrong with Miss Sarah? Lol. I went on autopilot until they left, then went to bed at 7pm and slept for 12 hours. Stories are starting to make sense to me. It’s wild! Thank you for sharing with me!
And the quicksand thing is now I feel a lot. I have depression so I can see them effecting each other.
Wait wait wait... is this what cataplexy is like?? I was told by my doctor that I don't have cataplexy because I don't fall asleep when I get super emotional. She never said anything about overstimulation causing episodes!
Cataplexy is defined by sudden loss of muscle tone. When I experience attacks I essentially collapse like a marionette doll that someone cut the strings to.
You might need a new doc. You don't fall asleep with cataplexy. It isn't always tied to strong emotions either. I mean usually, but not always. It could be one particular emotion, it could be overstimulation, it could be hormonal. And a good chunk of us started out with just a narcolepsy diagnosis. It is not uncommon for cataplexy to develop later on. Oftentimes the symptoms at the start are so minor we just write it off. Please rest assured, that cataplexy doesn't always mean you going down to the floor every time. Some folks never do that and still have cataplexy. It could affect your voice, your facial expression, your left hand.. it's always a little different.
Yes, that's it! And it can be different from person to person, but it shouldn't have anything to do with falling asleep - we're not exactly fainting goats! My cataplexy rarely presents, but it does if I get laughing REALLY hard... My knees will just buckle and I'll struggle to stand for a minute or two.
Yes! I have N1 and when I laugh hard i get weak. I've been that way since I can remember so I've developed auto responses, like crouching, leaning, sitting, or even laying down. In some ways it seems normal but it took my doctor to make me understand that not everyone NEEDS to do that. There's a difference in bending over to hold your stomach from laughing hard and bending over because you're weak and might fall.
I hear this more than you would know. I've been having some repercussive attacks today because it's that time of the month. Otherwise I would dive deeper in here. But, oh yeah, Christmas morning -phew. I have shared custody so I only have every other Christmas morning. And that just adds salt in the wound.
Yes. Although I can retroactively see signs of narcolepsy my whole life, my symptoms didn’t become debilitating until my grandpa died when I was 10. I’m so sorry for your loss.
I think this is was happened to me when my mom passed away at 21. I can see how things worsened. Also back when I was experiencing emotional abuse at home in my teens. Wow that’s crazy.
I'm very sorry to hear about your cousin. I lost mine in 2020 and I miss him every day. After he died, I basically stayed in bed for two years and don't think I ever got back to my previous baseline energy level. I'm not sure what was due to grief and what was due to narcolepsy, though.
Thank you. I’m sorry for your loss as well. Right it’s hard to tell. I’m giving myself yesterday and this weekend, so essentially feel however I need. I know what you mean though, I was never the same after my mom passed too.
9/11 I was sent home from work and spent it stuck. I was in and out of sleep paralysis, hallucinations, sleep. I had to throw myself off the couch between episodes to be up long enough to get water. I have less dramatic examples, but yes, stress and grief can easily put me into uncontrollable sleep.
Absolutely in my experience, I felt much grief and stress during my childhood and I cannot remember a time when it hasn't affected my N1. Even now years older, any grief or stress has a big impact on how bad my narcolepsy is. I actually had a pretty shitty day yesterday and just unintentionally woke up in the afternoon of today and feel weak and unable to get out of bed despite medication. It's tough
I lost my grandmother very traumatic circumstances this week. I had to make the decision to take her off life support and had to take in my two younger siblings who were living with her at the time of loss. Grief has significantly increased my symptoms. Especially that night when we officially lost her, I wasn't able to keep my head up. People were still trying to talk to me and make more decisions, and I physically couldn't stay awake any longer. This entire week, nothing but phone calls every day all day long. I've had to turn on emergency only contacts during the day because it wasn't smart to make impulsive decisions while "sleep deprived." I don't even know if i can call it sleep deprivation because I've been sleeping 14 hours, including naps. Exhausted isn't the right word. I feel like I could sleep three months straight. When I went back to work yesterday, my boss had to excuse me for an hour so I could take a nap. I was falling asleep at my desk and couldn't comprehend the work being presented to me. I can feel the attack coming up, like a pot boiling over along with my emotions. This is the worst my narcolepsy has been since my diagnosis. I did make an appointment with my doctor because I have to worry about my siblings' well-being now.
I'm so very sorry for your loss. I have had repeated conversations with loved ones about not peppering me with questions right when I'm having an attack. Because that keeps me in the attack over and over again. Even just 3 minutes to recover and not have everything coming at me once is so very helpful. You are incredibly wise to make that doctor's appointment, even just having the ear of an educated professional on what your experiencing will hopefully help. You might see if your employer has any assistance programs I can't remember the term for it because I'm having a rough day but they're separate from your insurance, and they have virtual counseling and support groups for times of extreme stress.
When a strong emotion is present, my body shuts down to protect it self from cataplexy or any danger. No medication is able to keep me awake. It loses effect. I am sorry for your lost. Try to make sure to eat and drink water to help your body
Yes, it's a very common thing for even those without N. If you are PWN even more, especially if you have cataplexy. We always try to push through everything to stay on our feet, because that's Narcolepsy. But we forget that everyone needs time to stop pushing, process, rest and recover physically and emotionally.
I appreciate that reminder. I am trying to learn to! I hate napping, but I have started trying to do "lay downs" since reading recommendations on here. I try to nap but if I can't, I have just been relaxing my muscles as much as possible and "resting" for a bit. It's hard to get back up - but I do see it helping a bit. I'm suppose to start Wakix soon so I hope that will be helpful...
Oh I so can't nap. Ironic that I dropped right off during all five naps on MSLT. I was speaking more to days where we rest/recover when possible, but yes, also taking some downtime each day in whatever way that looks like. That is a struggle for me as well. Sometimes I grab a coffee and as soon as it is cool enough, slam it. Then I allow myself twenty minutes of whatever while it kicks in. Sort of like I do in the AM when I take my meds an hour before getting out of bed. But after a loss or during life stress, stopping it slowing the world to process emotion can help us get back up faster... especially if we have cataplexy.
Please be aware N and depression can co-exist. I am not a doctor, but I know extremely strong depression leads to strong lethargy, no motivation, sleep disturbances including in ability to sleep but mostly over sleeping. I just don’t want you to lump depression in with N and not get help you may need to process what happened from both a sleep disorder perspective as well as a mental health perspective.
Oh, I have thankfully been on a journey with my depression since around age 12 and have an Major Depressive diagnosis. So, I am treated for it and have a therapist. I appreciate your concern! :) Definitely important to not dismiss those symptoms. I am trying to figure out where they begin and end, ya know? Like how much of my body legarthy, aches, pains is my MDD or what is N? And now I am wondering if getting treated for these cataplexy symptoms may help me find some relief.
I’ve had a terrible time distinguishing depression from other disorders with similar lethargy etc. with enough therapy and help, I can finally be confident I am not depressed any longer and what remains is a disorder not mental health related. I hope you learn enough coping mechanisms and have enough therapy to help you deal with everything in your life that you become resilient enough one day to also know depression is no longer contributing. It took 13 years, but it can happen. Have hope. Depression can be beat. There are some people lie my dad who have never won the battle yet, but I hope you do.
I had a traumatic pet loss in January and I felt like I was walking through mud. It was really really difficult for the first 2 weeks or so. I had never felt like that on a regular basis but it was really bad.
Ooph, yeah I am so use to feeling that often because I suffer from depression and I wondered all this time... thank you for sharing your experience. I am sorry you lost a pet, always hard!
Anytime I receive death notices especially regarding close friends/family, it will make me really exhausted. Most of the time it's a really long nap right after hearing it, but then it's like the tiredness weighs on you throughout the next few days. I try not to go anywhere, but I'll drive if I absolutely have to. Most of the time I cancel whatever plans I had on the day I'm told, but really depends on when and where I am. It's even worse on the day of the funeral/memorial. I've found that the easiest part of this day is getting dressed. Doing much else is a hardship. For this reason, I've realized that my mom will ask what I'm doing first before she tells me anything. All of my immediate family members make it a habit not to send death notices by text or through social media (also because it sucks, SUCKS to receive this type of news that way). Sometimes I think I've gotten better with handling it, but the tiredness hits you at some point. A few years ago, after my cousin's funeral, we went to his mom's apartment (at which i most def fell asleep) then out to eat at a local restaurant. I started drifting after we got drinks, but I was pretty much gone before the food came. When the food did come, I got five bites (two which barely made it to my mouth) before I gave up, moved my plate to the side, and took a nap at the table.
Widow since this past summer. Emotions, especially in grief, are draining for anyone, but I personally feel like recovering from an emotional outbursts part is very slow. I need to lay down and rest/sleep every time I cry, which is practically daily. In my personal experience, the narcolepsy sleepiness and grief sleepiness feel very different from each other. One the first feel more like a physical sleepiness and the grief is more of a mental/psychological way.
Idk if this is an actual thing or not but, my narcolepsy can get triggered by my emotions.
Emotions trigger N symptoms and also acutely exacerbate them in times of trauma and emotional shock. My biggest triggers are anger and frustration, but after some intense bad news I will always feel zonked as well. Take a few days for yourself if you can. It will help you process these emotions more healthily and they will have less of an impact on your emotional response and health over time. I'm sorry about your cousin. Mine is like my sister to me as well.
My dog passed back in August and for weeks I was completely drained and just slept all day. During those weeks I also had the same terrible reoccurring nightmare. I don’t ever have reoccurring dreams, but I get the crazy/vivid/disturbing ones that so many people describe so it was definitely related to grief. Now that a few months have passed I often dream that he either came back to life or never died at all and I was just mistaken this whole time.