Patient Comments: Narcolepsy - Experience


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Comment from: Gerry, Female (Patient) Published: June 01

My sister began having cramps in her fingers, rapid heart rate, breathlessness, slurred speech, and vomiting. She has been hospitalized three times now with potassium levels below 3. Due to the vomiting she has had to take potassium intravenously. Still potassium levels are low. Vomiting has stopped after third hospitalization but no reason offered for continued low potassium levels. She also has low magnesium, and low chloride levels. One doctor has attributed her present problems to the removal of one thyroid over 20 years ago. In addition to that she has huge ulcers on both sides her two legs. My concern is the apparent leaching of potassium from her body. No possible reasons given for the ulcers which had healed but reopened when she became ill recently.

Comment from: jege15, 25-34 Male (Patient) Published: November 18

I am a 33 year old male. I have been battling with narcolepsy since the age of 19. I too had a hard time understanding exactly what I had. I spent 4 years in jail and in the time I was there I had time to understand my sleeping patterns. I currently am not taking medicines but I do have a particular sleep schedule were I program myself to sleep naps during the day to reset me. But I also have figured out how to try and have a productive life with this handicap I have. I encourage any narcoleptic patients to please write down your sleep time and when it is you wake up to try and close and make the sleeping part either safer or less embarrassing.

Comment from: stoweo, 35-44 Male (Patient) Published: August 12

I’ve got a kind of narcolepsy + attention disorder + weight disorder + hyperactivity. How did I notice that, well, already when I was 15 years old I was falling asleep everywhere. At school I was going to the toilet to hide myself to be able to sleep without being disturbed, and I often have moments while I feel asleep or when I wake up I cannot move anymore. I can see and feel everything that's happened near me but it is for me impossible to react and I have the bad feeling that I cannot breathe anymore because I’m not well directed with my body and nose. For hyperactivity + attention disorder it is since I was 5 years old and it goes on and on now that I’m 40.

Comment from: cjham81, 25-34 Male (Patient) Published: December 17

I am a 33 year old male and been falling asleep since I was a child. I didn't know why but I did. Then I was diagnosed with narcolepsy and sleep apnea in 2004. I’m on Nuvigil now. I tried Ritalin and Xyrem, but side effects were not good. I have always been scared to drive to work and even play with kids outside. Sometimes I feel disabled.

Comment from: memommy, 45-54 Female (Patient) Published: October 18

I've spent my adult life trying to find a cure for my awful migraines. My neurologist finally did a sleep study that showed that I was in 24 hour REM. I can't tell you how many times I've run off the road in broad daylight or fallen asleep at work as a teacher, a few times while reading to the children. I drank coffee all day long and stayed on my feet constantly to stay awake. Often the migraine pain helped keep me up. I always thought that everyone dreamed full cinematic, lifelike dreams like I did, but the weird hallucinations in the middle of the night were so frightening that I would think that I was suffocating or paralyzed with fear. I loved going to a movie or concert with my husband, but dreaded knowing that I would have to pinch myself to stay awake any time I sat down for more than a few minutes. I know I have a guardian angel because I haven't died in a car wreck even though I can remember arriving home so many times with no recollection of the drive. Treatment isn't a cure, but it's made my life healthier, happier and so much safer.

Comment from: Clare B., 19-24 Male (Caregiver) Published: November 17

Since I have been diagnosed with emphysema I have walked for approximately 6 months every day amounting to 4 kilometers a day. It really has done wonders to my health. Please people, try this no expense treatment, it works. Don't give up, you will eventually feel the effects after a few months. Walk as briskly as possible.

Comment from: Sleepy, 35-44 Female (Patient) Published: May 01

I don’t know why I have extreme fatigue. Adrenal Failure? I know I do not have a problem while sleeping, such as apnea. I started on Nuvigil and loved it, but cannot afford it. Ordered a generic drug online, called armodafinil. It wakes me, but I feel zoned out and have lots of headaches and muscle cramping, and severe sinus. My doctor put me on Adderall and I felt angry, but not sure if I was withdrawing from the Nuvigil. I need something that works, tired of being tired.

Comment from: V, 45-54 Female (Patient) Published: October 08

For years I thought my daytime exhaustion/sleepiness was do to my career. It became worse as got older. Finally I mentioned it to my neurologist (I was embarrassed to bring up yet another problem; I have chronic migraines). I was blood tested for 2 genes. Since I was positive for both I did not need the definitive sleep study. I can' t believe I've suffered all these years. My neurologist diagnosed me in 10 minutes!


Why do we sleep? See Answer
Comment from: GirleeGirl88, 45-54 Female (Patient) Published: January 26

When I would go to my friends house for visits, I would sit down and about 3-5 minutes I woul fall asleep. I would wake up a few minutes later, and then a couple of minutes later I would fall back asleep, then wake up in a few, then back asleep in for a few. Paying attention to a conversation was a struggle. The fall in and out of sleep pattern also made driving difficult. Plus I have a tendecy to be an insomniac. After a few restless days on a "fresh" bottle of Adderall, the insomnia goes away and the "Cataplexy". This is a terrible experience of you wake up but are unable to move for a few minutes. It's actually quite scary. Cataplexy seems to cause my insomnia, because I don't want to go thru that scary feeling again.

Comment from: bhammock1975, 35-44 Female (Patient) Published: December 19

I have narcolepsy since I was young but I did not find out until 2005. I have taken provigil, nuvigil, methadone, but doesn't do any good. I stay so sleepy during the day and when I go to sleep I am sleepy but I can't go to sleep for the shapes when I close my eyes. I do not reach REMS sleep so I never actually get a good night’s rest even if I was to sleep for 12 hours straight. I have been tested and everything but I really need some assistance in finding out what to treat it with. Whatever is used will have to be in high doses. This has been going on for over 20 years. I need help.

Comment from: [email protected], 65-74 Male (Patient) Published: October 09

I am 71 and have lived with narcolepsy since I was 17. I stumbled on a self treatment for driving, the act of opening and eating peanuts helps. I expanded this to include ice. On long trips I will buy a 10lb bag of ice. For short trips I get a soft drink and fill the cup with ice. This has allowed me to drive and not fall asleep. I encourage you to try. It sounds silly but.

Comment from: Linda, 65-74 Female (Patient) Published: September 14

When I have an attack, I go on a feeding frenzy. I haven't seen this as a symptom of narcolepsy. I was diagnosed in a sleep study several years ago and was prescribed Provigil 200mg 2xday. Though this has helped a lot, I still have sleep attacks that can't be predicted. Also, the minute I go to sleep, I start talking. I have resorted to sleeping alone for fear of disturbing my husband. I can never afford the luxury of dozing in church!

Comment from: james mathew, 35-44 Male (Patient) Published: July 26

I am working and often my colleagues notice me sleeping in the office. It is too bad and embarrassing, if someone sees you sleeping in the office. I have been trying my best to keep awake all the time, but it is impossible. Sometimes I sleep standing. It is cruel, dangerous, risky, and above all is humiliating.

Comment from: shrrg10, 35-44 Female (Patient) Published: May 14

I am a nurse and have known I have Narcolepsy for many years but I am going to have a Sleep Study next month. I am not on any treatment as yet. I'm having trouble driving long distances. This is ruining my career because I drive a long distance to work. Any suggestions are appreciated.

Comment from: tired, 35-44 Female Published: June 02

I found dexadrine long active 10-15mg to be the most effective, but I still always have an afternoon nap which the lowers possibility of afternoon sleep onset. I would say by about 90% effective, weather I am on meds or take no meds. I nap for about 30 on my lunch break.


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