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Living with Narcolepsy

I am curious as to what kind of narcolepsy everyone has


#1

So I don't have the traditional form of N. I don't suffer from sleep attacks, I rarely suffer from cataplexy, but I do sometimes, and I dont know I wanna know what you guys suffer from.

I do suffer from sleep paralysis a lot, I have insanely vivid dreams, I can fall asleep in under a minute, and I enter REM almost instantly. I could sleep for the entire day but still be tired. My doctor said I don't get delta sleep, which is the most important part. So i can sleep 8 hours but feel like I only slept two. I am not sure if this makes sense to anyone. I just want to know if everyone with narcolepsy is like this or what it is that you guys actually suffer from.


#2

Dream Catcher,

I absolutely have exactly the same symptoms as you. Debilitating Sleep paralysis. I enter REM within 2 minutes. Vivid, horrific dreams… I stay in bed for 10 hours just to get 1.5 “useful” hours of sleep… And just 10 months ago, my family kidnapped my daughter because they claimed I was on drugs. Although not a specialist, my father is a family practicioner, who used his “medical expertise” to help try to validate illegal drug claims against me, despite me having gone through sleep latency test, doctor’s visits, neurologists, etc. You are not alone. Please know that.

(As an update, I have regained custody of my daughter, and my family’s claims gave been deemed unfounded, even though costly.)

You are not alone, by far. I usually don’t post, but please know that.


#3

Hey, you are soon not alone :slight_smile: when I dream I can change my dream if I don’t like it. I deal with migraines which I’m still learning about. But we know that migraines can set off narcolepsy and narcolepsy can set off migraines. I have started dealing with more sleep paralysis. And also with partial cataplexy. This past week has not been easy. It started Saturday night… I was startled at 2:30am by something. And could not get to sleep for about 20min. Then got up at 6am took the kid’s to my mom’s and dad’s. Went to work and was yawning the whole time at work.when I got off called to let my husband know I was not doing good and I was getting the kid’s. When I got to my parent’s home. I made it inside to the chair in the kitchen by my mom. Set down was talking then fell asleep. I can hear people when I’m like that I just can’t respond. That one lasted a few minutes. Then I called my husband talked for a moment. Then knew I was going down again. Gave mom my phone and was asleep again. My daughter let my cousin know mom went down but it’s ok. My son told me that it was ok and he loves me. My mom woke me up enough to help me to her recliner. And I slept. My husband came to their home. Cause he knew there was no way I could drive home. I would start to come out of it but was so groggy. Would go back to sleep. Tell I could hold a drink and standup without going right back down. I stayed in the chair and then we went home. I had to work the next day. So, my dad picked us up. then I drove to work. I let my manger know what happened and she let me do what I could. After I hour I had to call it cause I was to weak. I called my dad to bring the kid’s home for me. Went slowly home had to pull over onetime. When I got inside my dog went on guard duty. I was off for two day’s. Do, she stayed right beside me, would lay on me so I would not move and would tell my husband if I didn’t listen to her. She is a tierrier mix. So, not really big but she is my life saver :wink: lol so that’s part of what I deal with :wink: still learning what help’s me. I hope that help’s y’all too :slight_smile: just know you are not alone :wink:


#4

Physical findings & functional limitations: Neurological Disorder, gene variant HLA-DQB1*0602, Narcolepsy, Cataplexy, Sleep paralysis, Interruptive REM, Excessive Daytime Sleepiness, sleep apnea,”insomnia". Cataplexy causes me to fall to the floor when muscles weaken due to emotional triggers or interruptive REM cycles.

Mental acuity limited to EDS causing mental fogginess, poor memory, confusion and lack of concentration or focus. Ruminating thoughts in effort to control loss of focus/memory, or fear of failure. Repeat thoughts aloud to self to keep on target.

Anxiety and panic attacks create shortness of breath, a tingling sensation and an overwhelming sense that the world in closing in on me, leading to feeling sick to the stomach, nervous ticks, counting, twisting hair or scratching, crying. Also become depressed and have low self esteem due to lack of contribution or completion of task, work or activities. I feel ashamed of myself and hide my disorder to avoid judgement & criticism and rejection. Get sharp pain in the eye: residual from Shingles.

When standing, I take comfort in holding onto something or leaning against a wall or furniture because my body aches to sit or lie down.

When walking, I take breaks to catch my breath and to allow my body to stop over heating, retaining water, swelling, or flush/tingling feeling.

When lifting some boxes, I collapsed and fell down the staircase and sprained my ankle. I am very nervous about stairs now.

When bending I need to hold onto something with one hand. Or someone picks it up for me.

I get cramps in my legs and feet fairly often and must stretch them out for relief of pain.

Personal care takes a back seat to my child’s needs. I shower a couple times a week, shampoo once a week and try to brush teeth everyday. I forget to put on deodorant. Often I wear clothes from previous day as it's the easiest & quickest way to get dressed.

Bowel & bladder: I am regularly constipated. I have on occasion wet the bed, or had an accident with diarrhea which may be related to sleep paralysis. A couple times nearly soiled myself in public.

Household maintenance is minimal. I cook enough for caloric intake. Cleaning is minimal. Shopping is done when absolutely necessary as it is overwhelming. Meal planning is on the fly. It's impossible to be organized; filing is too overwhelming.

Seeing/Hearing: Hypnogogic Hallucinations are real to me; I can not distinguish between real life and the “night terror”. I see and hear the dream as though I were awake. i am terrified to go back to sleep and try to stay awake with the lights on to prevent further torment. I have been attacked by these evil hallucinations with the lights on. I pray for relief.

Speaking: Words are said differently than what was planned in my head. I may think “put it in the fridge” but it comes out of my mouth ” throw it in the trash”. Or I can’t speak at all due to loss of muscle control from cataplexy. I can think to say something but my mouth won’t move. It’s similar to complicated migraines. I can’t speak when I have the aura and pain with the headache and I get paralysis on one side of the body.

Concentrating: Focus is limited, poor concentration, thoughts jump or are chaotic, I worry about failing or falling or both.

Sleep: 13-18 hours a day. Usually 11 hours minimum needed. Bed at 9 pm, awake at 8 am. Then nap in the morning and/or later in afternoon. Naps can be up to 2 hours each. If I work a shift more than about 4 hours my body breaks down, flu like aches, sore throat and I become ill with a cold. I worry & stress alarms will fail and I will over sleep.

Breath: Sleep apnea, CPAP would be helpful. Sometimes exhale more than inhale, shortness of breath when panicking.

Driving: I pull over and sleep if I need to, and rest or sleep before I drive anywhere in effort to prevent sleep attacks.

Public transit: I have missed my stop or gotten lost because I fell asleep. I have been so sleepy that I have taken a ride from a stranger not concerned about my welfare. I will lie down on the street if I need to stop, rest or nap.

My physician referred me to the program "Bounce Back” which helped with coping with Narcolepsy and depression and anxiety/panic attacks.

I have also sought chiropractic help for Vertigo and neck pain from sleeping in a chair in the staff room etc.

I have seen a psychiatrist for medication to cope with stress and anxiety, suicidal thoughts. And participated in many groups. I attend weekly 12 steps coda meetings and completed 2 Freedom Session programs and Genesis Process step study as well as a CR 12 step study, Boundaries courses, Divorce care and Betrayed Hearts support groups. I try to cope as best as I can and look for alternatives to medication or drug therapy as I do not want a dependancy or addiction (Ritalin, Modafinil). I use behavioural and cognitive therapies to help alleviate my chronic condition with good sleep hygiene and avoid caffeine.


#5

I am very sorry for your suffering - not only the narcolepsy, but the emotional stress from your family. ! I pray that you be blessed.

SleepySleepyForever said:

Dream Catcher,

I absolutely have exactly the same symptoms as you. Debilitating Sleep paralysis. I enter REM within 2 minutes. Vivid, horrific dreams... I stay in bed for 10 hours just to get 1.5 "useful" hours of sleep.... And just 10 months ago, my family kidnapped my daughter because they claimed I was on drugs. Although not a specialist, my father is a family practicioner, who used his "medical expertise" to help try to validate illegal drug claims against me, despite me having gone through sleep latency test, doctor's visits, neurologists, etc. You are not alone. Please know that.

(As an update, I have regained custody of my daughter, and my family's claims gave been deemed unfounded, even though costly.)

You are not alone, by far. I usually don't post, but please know that.

#6

Hi -

Suffering from narcolepsy has Hallmark attributes, such as excessive day time sleepiness. However, each narcoleptic suffers from different ailments due to the narcolepsy. Also, it is hard to describe how we suffer because, after being medicated and have some control over the narcolepsy, we tend to forget the other things we've suffered prior to medication. Speaking now about my narcolepsy looks very different than narcolepsy prior to diagnosis and prior to being on a medication regimen.

I now used Provigil and Xyrem. Although I often push myself, I should take at least one nap a day. However using to medications maintain my ability to function the best with narcolepsy. I had learned ways to stimulate my brain to have me become more other, for example, Video games stimulate my brain. For me, when I play games that causes me to use logical thinking, I tended to be more alert afterwards. I also drink Barry's Tea (irish and delicious)

I have suffered from cataplexy, but the xyrem is very helpful in this situation. However, I notice when I am nervous I do tend to become very weak. I also feel when cataplexy is coming on. For example one of the telltale signs of the narcolepsy affecting me via cataplexy, I tend to start biting my tongue. If I am eating a sandwich and sudden I bite my tongue, I know am aware that I haven't been getting enough sleep. This then leads into pains in my legs, arms, shoulders and so on. It also brings on more migraine headaches.

I did suffer from Hypnogogic Hallucinations, sleep paralysis and vivid horrific dreams and if I start to get them again, I know I am lacking a lot of sleep and make sure that it is a priority.

Daily, around 2 p.m. I struggle the most. I need to nap.

At nighttime, I could lay their for hours which is horrific cause I am so dead-dog tired. Xyrem helps but if it doesnt knock me out, it makes me want to eat my entire house. But I finally wake up like a normal person. I do not need to sleep 15 hours and feel like I only slept 2 hours.

It is taking forever to see what works and what doesn't but, I think I found enough to move on through the day with minimal suffering ( compared to the past).

Your are not alone!

KitKat


#7

Hello, I to take Xyrem but know very little about it. At first it use to work very well. I'm taking 3.75 mg for the 1st dose and 3.50 for the 2nd dose. However, now I lay awake for hours and hours and I don't go to sleep. Or I do go to sleep and sleep though the 2nd dose. I wake up often, eat everything I can get my hands on in the middle of the night. My headaches are getting worse. I'm sooo tired all the time. The only thing I know about Norc. is one minute your awake and the next your asleep. I've tried to study about it but can't find out any information on the subject. Like reading the other discussion I think they are saying norc. gets worse with time. It that's true it's the first time I've heard of it. About 3 months ago I almost had a wreck while driving. Since then I haven't driven and I've tried very hard to do everything I'm suppose to do like take my RX at the same time every night, turn off the TV, listen do guided mediation for sleep, lay in a dark room, but it seems as if at the * moment I'm wide awake after I take my Xyrem and can't sleep for hours. I want to tell the doctor I don't think it's working but I don't know what else I can take for sleep if not that. Any help or words you can give would be greatly appreciated. Like what is norc., does it get worse, how will I know if it is, If I think I'm going crazy and nothing is working out right/like my life is not the same as it use to be 3 months ago is it because of the norc. maybe there is a reason I feel like nothing is going right and all I want to do is cry. I'm so tired I cant think straight.


#8


thank you so much. that is very amazing to know
SleepySleepyForever said:

Dream Catcher,

I absolutely have exactly the same symptoms as you. Debilitating Sleep paralysis. I enter REM within 2 minutes. Vivid, horrific dreams... I stay in bed for 10 hours just to get 1.5 "useful" hours of sleep.... And just 10 months ago, my family kidnapped my daughter because they claimed I was on drugs. Although not a specialist, my father is a family practicioner, who used his "medical expertise" to help try to validate illegal drug claims against me, despite me having gone through sleep latency test, doctor's visits, neurologists, etc. You are not alone. Please know that.

(As an update, I have regained custody of my daughter, and my family's claims gave been deemed unfounded, even though costly.)

You are not alone, by far. I usually don't post, but please know that.

#9

I have R.E.M related sleep apnea, which sucks. I go right to sleep, even though I don't know it so I am laying there sound asleep but I think I'm awake. Then I stop breathing then I am awake and can't go back to sleep due to a power nap. I of course am still tired.


#10

Always be wary of any doctor who makes assumptions. I'm saying this because it seems like your doctor just pulled that explanation out of some vague familiarity with ....

The only way to find out if you are indeed lacking Delta Sleep is with an EEG -- see: Delta_wave

The insanely vivid dreams are very scary and terrifying. Try to "be aware" in your non-wakefulness that these are just dreams by consciously expressing a desire to link that awareness to your dream states. I could be completely awake and talking to someone at one moment and be dreaming a few seconds later, sometimes only for a few seconds -- it all happens so fast sometimes that I tell the person I'm talking to what just transpired and if they didn't know my history, they'd think I was making it all up.

A Sleep Study is what will benefit you the most. After that, a doctor will be able to match you up with various available medications after trying to find what works best for you with the least amount of side-effects. I hate taking any kind of meds, but for Narcolepsy ... it's a matter of survival! -- "the lesser of two evils."

Check out: Sleep Study

Michael


#11

You say you don’t have sleep attacks. Meaning you never just fall asleep for a few seconds or minutes? Have they checked or looked at idiopathic hypersomnia? I have similar issues, almost instantly to rem, no matter how much sleep I have I’m excessively tired. Are you on medication? Without my medication I’m not sure how often I’d fall asleep, I know that staying busy or multi tasking helps me to stay alert. What tests have they done,?sleep study, mslt, eeg etc I’ve slept over 24 hours on more than one occasion. Sleep paralysis is pivoting less and less, hypnogogic and hypnopompic hallucinations are still there, bit maybe a little less vivid. Right now I’m in school online and I never seem to make it to my bed so I’m dealing with excess swelling etc.


#12

I was never aware of that there’s different types of narcolepsy that’s a good question for me to ask my doctor if they call narcolepsy different things like diabetes type 1 type 2 type 3 excetra I just know my doctor has told me I have a very severe case of narcolepsy after four different sleep studies some during the day and some overnight some with medicine and some without they have determined that 5 ritalin per day is the maximum amount that they want to do but they are encouraging me to use alternative stimulations always and hope to lower my dosage even if it’s only for one day out of the week I can lower my dosage down to 3 pills per day it is better. It takes me a good hour to become fully awake and where I feel like getting completely out of bed getting dressed to go somewhere just taking my medication some days if I’m lucky within 30 minutes. Now I do get up and let the dogs out to go pee pee thank God they go and do their business and come right back in because they know once I lay back down they can bark and bark and bark and mommy will not hear them so early in the morning they do their business and come right back in and I lay back down if its close to 5 a.m. I take my Ritalin if I’m not up by 6 my caffeine dosage is next. With me it’s a hard feeling that comes over me and then I call it the dark cloud if the medicine isn’t working and I’m not being stimulated by anything and the narcolepsy is winning the fight it’s a dark cloud that comes over my eyes … it starts moving in just like a storm front on the horizon I feel it coming so I make the arrangements if I’m at home I’ve got five dogs and two of them love taking what we called the power nap or meditation time they love crawling in bed with me I put the application on a loudspeaker the meditation is anywhere from 15 minutes to 30 minutes whichever one I choose and if I can take some more caffeine or I’ll take a couple tokes on an e cigarette which contains nicotine of 18 gr. or 24 grams and usually cinnamon or a menthol flavor I choose very strong flavors that are very stimulating by their selves even without the nicotine and I take my power nap with my dogs usually after the power nap I’m slow to rise but I’m able to get up and get going. occasionally once in a blue moon I have fallen asleep and me not being aware of it. thank goodness I was at home in my own chair my family was unable to stimulate me as they said I was dead to the world nothing was stimulating me at all nothing they could do to get me up even my dogs that was concerned for me tried nudging me and barking at me and I would not move or wake up the next morning I woke up on my own. I could not remember the family going to bed could not remember us having dinner or anything and had that eerie feeling the world just revolved without me. My daughter then inform to me what I had done falling asleep into a deep deep sleep. Usually through the night I am very aware of sounds around me the dogs barking crickets chirping trains going down the track all the wonderful sounds of living out in the country but not this particular night I don’t even remember dreaming. Other times when I’m out with friends I hate it when I get the feeling of the dark cloud coming over I take my medicine I do all the stimulation all the little tricks that I’ve learned through the years but ultimately I have to lay down and close my eyes it’s kind of embarrassing to have to ask a friend for a bed or a chair that you can lay down and go to sleep in when you come to their house to visit with them and all you’re going to do is go to sleep. It’s kind of like coming to their house to visit with them and staying on the telephone the whole time that you’re there or at least that’s the way I see it. My friends say they understand it’s an illness even though I try to control sometimes it takes the pants off me and it controls me. So me and narcolepsy wear the pants in the house as you notice I put me 1st still controlling lol


#13

Dr. Fleming diagnosed me with Narcolepsy 1991. I did not want drug therapy so I managed with good sleep hygiene and no caffeine. And gamma hydroxybutyric acid was $1k a month then. Had another sleep study showing hypersomnolence and am on Modafinil now. I did not enjoy Ritalin or Effexor. I had a panic attack when coming off of it. Apparently I can have a cup of coffee??! I suffer from the same systems as you. Working is extremely difficult so I am trying work from home.


#14

Narcolepsy is a baffling disease with limited effective study of conditions and triggers that surround it. Specifically, they state that narcolepsy is not hereditary. Explain that to my daughter and I! We both suffer from Excessive Daytime Sleepiness with Cataplexy. My cataplexy includes a couple of instances of sleep walking, bouts of sleep paralysis, and many vivid dreams and waking hallucinations; her symptoms include laughing paralysis, vivid dreams, sleep paralysis, and waking hallucinations.

Despite cataplectic triggers being described in medical literature, I cannot find information on sleepiness triggers but I have a second live-in narcoleptic with whom to share notes. Daughter and I have differing triggers! I am triggered very obviously by sharp disappointment and need 90 min of sleep following hard news, a disappointing first quarter of a football game, etc. Less obviously and far more consequentially, eating triggers an insistent need for sleep. That is what lost me my job recently. I can see 30+ yrs back to high school when I slept through classes that followed food! But I dislike breakfast so I did not put together the correlation until very recently when a fasting blood draw was required. I was awake all day against personal statistics and without Nuvigil, having run out, until I ate dinner and promptly passed out! In the last two weeks I have found that fasting all day provides great wakefulness and that small protein meals tire me less than carbohydrates.

I mentioned Nuvigil already. I take 250 mg Nuvigil and up to 60 mg Ritalin a day. I drink a pot of coffee. Over-the-counter cold medicine (dextromethorphan) provides some stimulation. I take 4.5 g Xyrem twice a night, a true Godsend in my opinion. And I nap once or twice a day, for 90-180 minutes each time. Every few days, rather unpredictably, I need 16+ hours of sleep.

My sleep doctor knows how to dispense controlled meds, that’s good. But I tell HER about sleep triggers, drug holidays, etc.

My correct diagnosis came at age 47; I am an expert on misdiagnoses and intend to write about my experiences in family, church, and the medical community. Family and church chalked up my sleepiness to laziness and character deficiencies. Doctors blamed Chronic Fatigue Syndrome, stress, apnea, weight, drinking, thyroid, diet, and drug-seeking behavior at various points. A now out-of-practice neurologist misdiagnosed my narcolepsy, requiring 4 out of 4 REM states during my first MSLT. The correct criterion in actually 2 out of 5, and I had 3 in both MSLTs. I would sue that quack but I need to get in line: even his employees would like to find him to get their final paychecks!

Where I am right now regarding my condition is this: all days are hard but some are worse than others. Wakefulness without medication is a pipe dream. But complaining to any but the most sympathetic is vain; a Narcoleptic who says he is tired is like a midget who points out how short he feels, every day. So in our family, that is how we wryly comment on perpetual fatigue: I feel short! Boy, am I short! Have you noticed how short I am today? Laughter is the best medicine. Besides GHB and methylphenidate. But you get my drift.


#15

Lady bug,

Narcolepsy does not get worse over time. I’m a college student and I was diagnosed when I was in middle school. In middle school, I used to always fall asleep but its completely different now. I can tell when I’m going to fall asleep, I feel it coming on and I go lay down. I rarely have sleep attacks. Xyrem didn’t work for me either. I thought that I would never get a full night asleep again. However, I have sleep apnea and now as soon as I put on my mask, I’m out.


#16

I found that Xyrem works better for me if I take breaks from it occasionally, basis, and take one dose instead of two. When I first started Xyrem I had problems with “abnormal thoughts”. Later I realized I was over-dosing daily for about six months straight (I do not weigh very much and the dose was simply too high). I now take it three or four nights out of the week, at half the dose.


#17

I do not know who told you Narcolepsy is not hereditary, because I have seen several websites that indicate it runs in families. I myself KNOW that it is something that I passed on to my son who was also diagnosed with the sleep disorder. I had the disorder for 35+ years. When I realized my son suffered the same symptoms as I, I became determined to find out the cause.


#18

I also have a sleep disorder. Like you, fall in to REM sleep right away. I don’t get adequate REM sleep therefore I start my day tired every single day of my life. The very best sleep I ever had was when I was given IV sedation for foot surgery. I woke up rearin to go … and couldn’t. I always felt something wasn’t right with me but no body ever dug in to it. When I’d discuss the EDS with my PCP, he’d order the usual blood and thyroid workup. Always pretty normal. I worked in healthcare and one day I sat in my manager’s office in tears. I was often late because of not hearing my 3 alarms and I’d fall asleep standing up. Driving to and from work was nothing short of a miracle that I am still alive. She snagged one of the docs close by and he suggested I get to a neurologist. I did and the studies were done and diagnosis made. I wasn’t surprised with the results although I didn’t have an understanding of the sleep disorder. When I was questioned about sleep paralysis I knew we were in the right direction. I’d never talked about it before because it was such bizarre experiences. Who would understand that? I was very young when that began and it was incredibly frightening. Now that I have an understanding of it I deal with it better. I know my dog is close by and I know if anything bad were to happen he’d take care of it. Now I am able to not fight it but just go with it. I dealt with cataplexy when I was young. On occasion I feel the weakness but it doesn’t drop me any longer. My legs used to completely let me down. Because of the dual diagnosis my doctor wanted to send me to a more advanced sleep lab. Insurance would not approve it. I’ve been on the highest dose he can prescribe for many years. Some days it doesn’t seem to have much affect. I was under some restrictions at work which was a thorn in some of my co-workers side. I no longer took my turn at third shift. I’d trade places with the complainers any day.

I a surprised you don’t have sleep attacks since you do not get restful sleep at night. I totally understand what you’ve described.


#19

Hey, I’m new here and curious if anyone can sort of validate these symptoms, because while I barely qualify for the diagnosis, it’s completely disabled me. I’ll try to be brief so you don’t have to read a book.

  • Can’t be woken. Not even with help from others unless they give me adderall before I need to get up. I can solve any puzzle alarm, disable or disassemble any alarm that requires me to get out of bed or just sleep through it.
  • I don’t fall asleep immediately like most narcoleptics, because I have really bad anxiety and apparently that makes it hard to fall asleep. I may enter rem when I fall asleep, but I’m not sure because by then I’ve already been in bed for so long
  • EDS is an understatement. My muscles are basically atrophied and I have so little energy (physically, mentally, and emotionally) that I can’t accomplish anything
  • Hypersomnia is probably the worst. Used to I’d just need a nap after HS… but at my worst I slept on average 16 hours, but my max is when I was depressed and slept about 30 hours.
  • Frequent late night awakenings. Mostly to pee but it’s at least 5-7 a night.

Any other symptoms are minor. If anyone has any insight on my symptoms, I would appreciate it more than you know.


#20

Hey there Dream_Catcher,
I was diagnosed with type 1 Narcolepsy, that’s with Cataplexy. I try to get as much as 8 hours of sleep a night but sometimes I have terrible insomnia and don’t sleep for two days. If i do sleep, its a catnap (which translates to a few minutes of sleep). I have never had sleep paralysis, well at least i don’t think I have. My cataplexy affects me daily. Sometimes I could be standing for too long and the room starts to spin or I sit too long at my desk, my leg will jerk to keep myself up. If i am really exhausted and I am in the middle of class, I may bounce my leg up and down to avoid crashing. I bet it doesn’t help that along with my narcolepsy, I am a night owl.