Question:
I was diagnosed with narcolepsy about 8 years ago. I always knew I had it anyway, because my mother has a severe case of it (severe sleep attacks, severe cataplexy, severe hypnagogic hallucinations, etc…) In fact, she has it so bad, she spent a month at Stanford University with Dr. Dement to serve as his guinea pig" back in the 70s. I have a milder case… daytime sleepiness, mild cataplexy, sleep paralysis, etc… I used to be able to control the sleepiness with a couple of cylert a day and a lot of coffee. But then my life got shattered to pieces. I took my 33-yr. old fiance white water rafting last summer. Our raft flipped over, and to make a long story short, I watched him get swept down a river to drown. Needless to say, I am totally devastated and screwed up. I have been diagnosed with Post Traumatic Stress Disorder and Clinical Depression. What is one of the major symptoms of these things? Exhaustion and Fatigue! On top of that, the main side-effect of the medication I take to battle depression and anxiety (zoloft and clonazepam) is DROWSINESS. And on top of all that, I CRY a lot, and that wipes me out. I CAN’T STAY AWAKE ANYMORE!!! I just can’t keep my eyes open. I am so damn tired, I don’t go out to lunch anymore… I bought a sleeping mat (the kind kindergarten kids use for their naps), a pillow, and a blanket, and I take a nap under my desk everyday. The sleepiness isn’t the only thing. Many people with narcolepsy, including myself, have extremely vivid dreams… whether it’s during sleep paralysis or during regular nighttime sleep. Well, my dreams are still vivid, but they’re nightmares about the river, the funeral, the cemetery… you name it. And they’re so real, sometimes I wake up crying or wake up with severe muscle spasms in my legs (charlie horses). One time, I was staying at a new friends house, and I woke up at 3AM to the sound of a man yelling. I thought someone had broken into her house. It sounded so LOUD and REAL to me, I was PETRIFIED. So much so, that I panicked and crawled out her window to get help. Turns out she had a movie playing on her T.V…. Slingblade…. and it wasn’t even turned up that loud. I guess my situation is unique. Has anyone else out there suffered a loss like this and has to battle these symptoms???
Response:
dear julia, first of all, i am so terribly sorry for your loss. three years ago my adoptive mom, my aunt (the same person) died and i did have some of your symptoms. she had gone home to her house to die and she was there for about 6 weeks, so thankfully we all got to say goodbye. the kind of death where they go suddenly is much harder to grieve–my best friend and ex-husband (same person!) died of a heart attack on dec. 26, 1998. that was particularly rough because my kids lived with him and i adopted them at that point, so the 3 of us were grieving bigtime. the kind where you blame yourself a bit is harder yet. (and when my dad died at home one sunday when i was 9, i did blame myself, though i had no reason to.) grief is a little mysterious and i think it needs to be treated with much respect. i also think denial and sleepiness are a GOOD THING. they numb you out so you can go on breathing and living, when the emotions would surely knock you down. i was terribly sleepy. i rarely slept a full night. in fact, from that summer, 1995, to now, if i slept 6 hours, that was a REALLY GOOD NIGHT, and that only happened maybe once a month. my sleep was majorly interrupted EVERY NIGHT. and when i woke up the grief was there, and the worst part was it felt new. it was like experiencing the wound all over again. i didn’t know how i could go on after my aunt’s death. a lot of the time, i didn’t WANT to. i would cry uncontrollably—once while driving i almost killed myself because a crying jag came on me and i couldn’t see. i would start crying in the middle of a sentence. 2 months or so after my aunt’s death i started taking imipramine for panic attacks (which i had had occasionally and which became frequent). i stabilised at 25mg. which i am just now, after 3 years, tapering off of. i was exhausted all the time. i lost my heart for doing and being in this world. i was so sad. and what i did during the day was completely compromised by my lack of sleep the night before. i assumed this was a grief thing but in may, this may, i got tested for sleep apnea, and guess what? i have it, and i have successfully adapted to CPAP. now my sleep is much more concentrated and intense. i feel rested after only 4 to 6 hours, but some nights i make it 7 or 8 hours. i am productive during the day. i am still so sad about their deaths. i still cry. i don’t believe i have narcolepsy, but i have lots of weird dreams. for me, the panic attacks ALWAYS have an emotional "kernel", and their resolution almost 100% of the time involves me crying and grieving something i "left out". (they do happen pretty infrequently these days.) right now i am doing this thing where i wake up at 4am or 5am. but i have slept really well til then with the CPAP on (i go to bed at 12am or 1am because i’m a violinist and i work late), so the next day i’m usually ok…..or, if i need more sleep i take a nap. i don’t know if you’ve ever had a sleep study specifically to rule out apnea, but you might want to do that. also if you want to talk, i would be happy to do so via private e-mail. i guess the main message i’m trying to convey is that for me the sleep disorder is/was directly related to the pain of the grief process. even if the relation was emotional rather than clinical, that’s how i experience it. again, i am very sorry for your loss and difficulty, and glad that you posted. kathleen tim…@best.com — I think it’s going to be a long time until American society accepts fat people. Dieting has been elevated into a religion, a new religion, and only the thin are "good" and saved. The new messiah is any weight-loss expert. And if you couple religious fervor and righteousness with desire and pressure [to lose weight], you have a recipe for dismissive posturing. – C. K. Grinnell
Response:
- Hide quoted text — Show quoted text -Julia Watson <jawat…@swbell.net> wrote: >I was diagnosed with narcolepsy about 8 years ago. I always knew I had >it anyway, because my mother has a severe case of it (severe sleep >attacks, severe cataplexy, severe hypnagogic hallucinations, etc…) In >fact, she has it so bad, she spent a month at Stanford University with >Dr. Dement to serve as his guinea pig" back in the 70s. >I have a milder case… daytime sleepiness, mild cataplexy, sleep >paralysis, etc… I used to be able to control the sleepiness with a >couple of cylert a day and a lot of coffee. >But then my life got shattered to pieces. I took my 33-yr. old fiance >white water rafting last summer. Our raft flipped over, and to make a >long story short, I watched him get swept down a river to drown. >Needless to say, I am totally devastated and screwed up. I have been >diagnosed with Post Traumatic Stress Disorder and Clinical Depression. >What is one of the major symptoms of these things? Exhaustion and >Fatigue! On top of that, the main side-effect of the medication I take >to battle depression and anxiety (zoloft and clonazepam) is >DROWSINESS. And on top of all that, I CRY a lot, and that wipes me >out. >I CAN’T STAY AWAKE ANYMORE!!! I just can’t keep my eyes open. I am so >damn tired, I don’t go out to lunch anymore… I bought a sleeping mat >(the kind kindergarten kids use for their naps), a pillow, and a >blanket, and I take a nap under my desk everyday. >The sleepiness isn’t the only thing. Many people with narcolepsy, >including myself, have extremely vivid dreams… whether it’s during >sleep paralysis or during regular nighttime sleep. Well, my dreams are >still vivid, but they’re nightmares about the river, the funeral, the >cemetery… you name it. And they’re so real, sometimes I wake up >crying or wake up with severe muscle spasms in my legs (charlie horses). >One time, I was staying at a new friends house, and I woke up at 3AM to >the sound of a man yelling. I thought someone had broken into her >house. It sounded so LOUD and REAL to me, I was PETRIFIED. So much >so, that I panicked and crawled out her window to get help. Turns out >she had a movie playing on her T.V…. Slingblade…. and it wasn’t even >turned up that loud. >I guess my situation is unique. Has anyone else out there suffered a >loss like this and has to battle these symptoms???
Wow, I was sorry to hear of your loss. Yes, trauma has a profound effect on the mind and body. I would sure encourage you to work with a mental health professional as a guide to help you get through the effects of the experiences that you have endured. There are several kinds of therapy that can help, I would encourage you to search for one that seems to match your beliefs and needs. Good luck. Take care.
Response:
Hi: No I didn’t go through your grief but after having an untreatable, incurable illness for 31 years and have suffered unbearably I did go through mourning for being alive but losing my life, so to speak. I get hypnagogic hallucinations and sleep paralysis and can’t fall asleep for anything. I can understand the hallucinations and sleep paralysis. My longest lastest for 3 hours. The best medication for HH is Elavil. I have been through it all with sleep disorders and have five. The first day I took Elavil I didn’t have one hallucination and it is exactly one year. And I used to have them everyday so yes I do understand. Your may need a grief counselor for your grief and depression about your fiancee which is an awful and very said story but you can get relief from your hallucinations. If Elavil is not good for you there are others. Make sure to get a good sleep disorder specialist. I had two awful experiences until l found the third and the best. Good luck!!! Andrea
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