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Narcolepsy?
My husband has always teased me about my hyper-dreaming. I start dreaming before I am fully asleep and I awaken in the middle of a dream.
He also is irritated that I tell him not to talk to me in the morning. I can't process the information and i have trouble talking in response. I have trouble functioning, period, when I first get up in the morning.
Sustained sleep at night is impossible, even if it just means getting up frequently (3-9 times) to go to the bathroom. I go through periods of awakening for 1 1/2- 3 hours in the middle of the night. I just give up and go write reports on my computer. I sometimes eat in the middle of the night; half awake.
Periodically, but particularly when I have recently completed a project that has kept me busy, busy, I awaken in the morning, get out of bed and stand up, then realize my body is still lying prone and my consciousness then joins back with my body.
I have awakened to see someone standing in the room. This occurred most just after getting married, traveling abroad, moving across country and starting a new job (all these things at once)30 years ago. Once the person I saw was standing next to my husband who really was standing in the doorway.
I recently looked back over medical records from the past 27 years and find that I have consistently complained of "fatigue". I finally stopped doing the grocery shopping because I just wanted to lie down and go to sleep in the middle of the store... Interestingly, I can tolerate little stores, just not supermarkets.
I often complete a routine task and can't remember having done it. Doesn't everybody
I drive and do not know how I got "here" because i can't remember the drive. But that happens to everyone, right?
I lose control of my lecture when lecturing, finding that i am suddenly talking about something I had not planned. This occurs if I have not written the lecture word for word and read it. My speech is often abnormal (slurred, shaky) if I speak respond to an unanticipated question.
I cannot tell jokes. i start and my mind shuts down. I blow the punchline.
Teachers always told me i did not "work up to my potential". I am very intelligent as is my entire family.
During meals, my family will sometimes tell me it looks like my face is sliding off. This is often accompanied by facial flushing in distinct patches which include mouth area, nose, cheeks or urticaria on upper chest and upper back. I get "racoon eyes".
i go go go. In order to sit to watch a movie or listen to a lecture, i have to keep my hands busy, taking notes or sewing.
About every 6-8 weeks i sleep 36 hours straight. I have to. it once happened in the middle of having houseguests.
It takes me FOREVER to fall asleep at night; it always has... I take Ambien to fall asleep.
I've taken Dexedrine for 10 years for ADD and Wellbutrin for 15 years for depression.
I do not think i have microsleeps during the day. But how does one know?
4 years ago I started having attacks/episodes:
I first feel my shoulders drop. Then my heart races. Within a few 5-10 minutes, I lose peripheral vision and my visual field is gray/cloudy. It feels as if I can breathe only in the upper third of my chest. I have a descending loss of muscle tone until I can't sit or stand upright. I feel like I've been hit by a tranquilizer dart. I can see, hear. I can talk but my voice is shaky or odd. My daughter once said i sounded like Mickey Mouse. The attack lasts as long as 3 hours, then I am fine. Afterwards, my arms are weak for a day or two and I have episodes of shivering/teeth chattering even though it may be 90 degrees outside.
My old PCP told me I should go to the ER when I have an episode so I did a number of times. Once i took myself to my new PCP's office as one was coming on; he sent for an ambulance. The trips to the ER have not been helpful in terms of enlightment toward a diagnosis.
I have changed PCPs 3 times since these attacks began happening regularly because I needed to find someone who was curious enough to help me track down a diagnosis. I have seen MANY docs to rule out, rule out, rule out...
A couple weeks ago i went to a big city to see a neurologist who told me I have cataplectic episodes and that I have narcolepsy. I have not had sleep studies or anything more.
Could this REALLY be narcolepsy/cataplexy? Is it NECESSARY to get more diagnostic work?
He also is irritated that I tell him not to talk to me in the morning. I can't process the information and i have trouble talking in response. I have trouble functioning, period, when I first get up in the morning.
Sustained sleep at night is impossible, even if it just means getting up frequently (3-9 times) to go to the bathroom. I go through periods of awakening for 1 1/2- 3 hours in the middle of the night. I just give up and go write reports on my computer. I sometimes eat in the middle of the night; half awake.
Periodically, but particularly when I have recently completed a project that has kept me busy, busy, I awaken in the morning, get out of bed and stand up, then realize my body is still lying prone and my consciousness then joins back with my body.
I have awakened to see someone standing in the room. This occurred most just after getting married, traveling abroad, moving across country and starting a new job (all these things at once)30 years ago. Once the person I saw was standing next to my husband who really was standing in the doorway.
I recently looked back over medical records from the past 27 years and find that I have consistently complained of "fatigue". I finally stopped doing the grocery shopping because I just wanted to lie down and go to sleep in the middle of the store... Interestingly, I can tolerate little stores, just not supermarkets.
I often complete a routine task and can't remember having done it. Doesn't everybody
I drive and do not know how I got "here" because i can't remember the drive. But that happens to everyone, right?
I lose control of my lecture when lecturing, finding that i am suddenly talking about something I had not planned. This occurs if I have not written the lecture word for word and read it. My speech is often abnormal (slurred, shaky) if I speak respond to an unanticipated question.
I cannot tell jokes. i start and my mind shuts down. I blow the punchline.
Teachers always told me i did not "work up to my potential". I am very intelligent as is my entire family.
During meals, my family will sometimes tell me it looks like my face is sliding off. This is often accompanied by facial flushing in distinct patches which include mouth area, nose, cheeks or urticaria on upper chest and upper back. I get "racoon eyes".
i go go go. In order to sit to watch a movie or listen to a lecture, i have to keep my hands busy, taking notes or sewing.
About every 6-8 weeks i sleep 36 hours straight. I have to. it once happened in the middle of having houseguests.
It takes me FOREVER to fall asleep at night; it always has... I take Ambien to fall asleep.
I've taken Dexedrine for 10 years for ADD and Wellbutrin for 15 years for depression.
I do not think i have microsleeps during the day. But how does one know?
4 years ago I started having attacks/episodes:
I first feel my shoulders drop. Then my heart races. Within a few 5-10 minutes, I lose peripheral vision and my visual field is gray/cloudy. It feels as if I can breathe only in the upper third of my chest. I have a descending loss of muscle tone until I can't sit or stand upright. I feel like I've been hit by a tranquilizer dart. I can see, hear. I can talk but my voice is shaky or odd. My daughter once said i sounded like Mickey Mouse. The attack lasts as long as 3 hours, then I am fine. Afterwards, my arms are weak for a day or two and I have episodes of shivering/teeth chattering even though it may be 90 degrees outside.
My old PCP told me I should go to the ER when I have an episode so I did a number of times. Once i took myself to my new PCP's office as one was coming on; he sent for an ambulance. The trips to the ER have not been helpful in terms of enlightment toward a diagnosis.
I have changed PCPs 3 times since these attacks began happening regularly because I needed to find someone who was curious enough to help me track down a diagnosis. I have seen MANY docs to rule out, rule out, rule out...
A couple weeks ago i went to a big city to see a neurologist who told me I have cataplectic episodes and that I have narcolepsy. I have not had sleep studies or anything more.
Could this REALLY be narcolepsy/cataplexy? Is it NECESSARY to get more diagnostic work?
Melatonin is produced in the brain, sometimes we can produce more than we need, when we have had lack of sleep sometimes Melatonin levels leak into the brain causing the brain to enter a trance like state when were awake or half awake.. The Trance like state is usually Between Alpha and Theta Waves. We seem to become Delusional in this trance like state, yet we can understand ourselves in our mind, but outside senses cant always be understood when interacting with them..... Sometimes this trance like state can also happen when fully awake, causing us to see illusions etc. When were in a Ready to sleep mode, we sometimes See Dream like Visions come into view, and they can be rapid due to us still being in a Beta/Alpha State as well as the State that Melatonin creates... When your Aware of Your Dreaming while dreaming, this is also an Alpha Beta State while Melatonin is still being released in the Brain.. Its a State where your are about to wake up, yet the Melatonin Production is keeping you in a Suspending Brainwave State... Melatonin can be Released when we Meditiate Also, or have a Kip for 30 mins, This Rejuvinates the Body also temporaily... What you experience is something they call Lucid Dreaming also. Lucid Dreaming is the Ability to know when your in a Dream. Lucid Dreaming happens when you have a Large concentration of Melatonin being released in the brain while you are about to wake up from your dream........ If you could somehow produce this melatonin release after you wake up and while in the alpha beta state, you will likey be able to lucid dream... All you need to lucid dream is to have Extra Melatonin just after you wake up. But Very Rare indeed.
Unfortunately you will have to go ff all meds especially anti depressants and stimulants. Thats the only way to get an accurate study done . Anti depressants are supposed to reduce rem sleep and you know what the stimulants do!
The only suggestions I can make is to drink as much caffeine as you can tolerate and purchase some sublingual B12 tabs you just pop one under your tongue and B12 is a water soluble vitamin so no need to worry about getting too much but you urine will be bright yellow!!! I try not to have any caffeine or B12 after 3:30 pm or there is no way I will even get an ounce of sleep! I also recommend trying to eat small meals every few hours with a tiny bit of protein, even if it's only celery with peanut butter, this will keep your metabolism running and you'll be less likely to have a sugar crash if you drink soda.
Research puts Narcolepsy in the autoimmune category- they believe the body has attacked itself therefore not creating enough hypocretin which controls the sleep wake cycles. That means that your immune system is lowered so your allergies including foods will seem worse than they once were.
Best of luck with your sleep studies - when is it by the way?
Hang in there - going off your meds for a short few weeks means nothing to finally find a diagnosis and recieve proper treatment.
Best Wishes~
The only suggestions I can make is to drink as much caffeine as you can tolerate and purchase some sublingual B12 tabs you just pop one under your tongue and B12 is a water soluble vitamin so no need to worry about getting too much but you urine will be bright yellow!!! I try not to have any caffeine or B12 after 3:30 pm or there is no way I will even get an ounce of sleep! I also recommend trying to eat small meals every few hours with a tiny bit of protein, even if it's only celery with peanut butter, this will keep your metabolism running and you'll be less likely to have a sugar crash if you drink soda.
Research puts Narcolepsy in the autoimmune category- they believe the body has attacked itself therefore not creating enough hypocretin which controls the sleep wake cycles. That means that your immune system is lowered so your allergies including foods will seem worse than they once were.
Best of luck with your sleep studies - when is it by the way?
Hang in there - going off your meds for a short few weeks means nothing to finally find a diagnosis and recieve proper treatment.
Best Wishes~
I doubt that you would have to go off all meds for the sleep study. If you mean the stimulant meds, ask what the minimum time off the meds would be and book the study around a schedule that allows you to not have to do much those couple days leading up to the study. May take some planning, but a worthwhile investment of a few days to possibly help your future.
Let us know how the appointment goes.
Let us know how the appointment goes.
Thanks for the feedback/support. I will follow up via PCP appointment tomorrow.
I am curious about some of the secondary symptoms I have run across on random sites. I am wondering what others experience and if what I experience are common to narcolepsy/cataplexy or if I should be seeking other explanations.
Some relate to morning sleep/wake transition: I have difficulty talking, reading for the first 1/2 hour... frustrating for my "morning person" husband. I have taken to sleeping in some of what I will be wearing the next day; leaving the scrubs next to my bed to put on when I awaken; otherwise i forget something.
I have cold intolerance rather than the heat intolerance described in most literature about narcolepsy.
Lots and lots of hypersensitivities, particularly acetylcholine rich foods & foods and meds containing salicylates. Is this related?
I agree the symptoms are/have been lifelong. I will be very surprised if I don't turn out to have cataplexy/narcolepsy.
I am VERY concerned about having to getting meds out of my system before sleep studies. I cannot imagine functioning/working for the time it will take. Any suggestions?
mastkids
I am curious about some of the secondary symptoms I have run across on random sites. I am wondering what others experience and if what I experience are common to narcolepsy/cataplexy or if I should be seeking other explanations.
Some relate to morning sleep/wake transition: I have difficulty talking, reading for the first 1/2 hour... frustrating for my "morning person" husband. I have taken to sleeping in some of what I will be wearing the next day; leaving the scrubs next to my bed to put on when I awaken; otherwise i forget something.
I have cold intolerance rather than the heat intolerance described in most literature about narcolepsy.
Lots and lots of hypersensitivities, particularly acetylcholine rich foods & foods and meds containing salicylates. Is this related?
I agree the symptoms are/have been lifelong. I will be very surprised if I don't turn out to have cataplexy/narcolepsy.
I am VERY concerned about having to getting meds out of my system before sleep studies. I cannot imagine functioning/working for the time it will take. Any suggestions?
mastkids
A night time sleep study followed by a daytime study would tell your certain wether or not you have Narcolepsy. Sometimes just having an actual diagnosis brings relief to the situation. Oh i have cataplexy - hey thats because I have Narcolepsy, then you can track what brings on the episodes and use caution during certain emotions. Some times something as small as frustration of someone throwing trash on the side of the road can bring on cataplexy.
Although treatment for Narcolepsy is similar to that of ADD, your meds just may not be signifigant for your specific situation and may require a different combo.
I have Narcolepsy - It took 2 yrs of severe symptoms to be diagnosed which looking back I had these symptoms my whole life. There is hope after diagnosis, but a proper one and a good doc will get you the help you need to reduce there severity of your symptoms.
Best Wishes
Although treatment for Narcolepsy is similar to that of ADD, your meds just may not be signifigant for your specific situation and may require a different combo.
I have Narcolepsy - It took 2 yrs of severe symptoms to be diagnosed which looking back I had these symptoms my whole life. There is hope after diagnosis, but a proper one and a good doc will get you the help you need to reduce there severity of your symptoms.
Best Wishes
Hi,
Good to know you are physically active and lead a happy life. Polysomnography will make the diagnosis certain. Also then you can be treated accordingly. The treatment is mostly symptomatic like practicing good sleep hygiene which includes sleeping at regular time, avoiding late nights and alcohol. Taking short scheduled naps during the day will help combat daytime sleepiness. Apart from this certain drugs like modafinil, Ritalin help.
Good to know you are physically active and lead a happy life. Polysomnography will make the diagnosis certain. Also then you can be treated accordingly. The treatment is mostly symptomatic like practicing good sleep hygiene which includes sleeping at regular time, avoiding late nights and alcohol. Taking short scheduled naps during the day will help combat daytime sleepiness. Apart from this certain drugs like modafinil, Ritalin help.
Stress is my life is very low. I love my work, my husband is my best friend...
My work is very physically active. My morning cortisol level is low.
Would it be better to get a sleep study done in a larger medical center or locally? If I have it done locally will it be as accurate?
It took going to "the big city" to get a tentative diagnosis, though the neurologist i saw felt the diagnosis to be certain. This, after 4 years of trying to track down a diagnosis locally.
What could the sleep study/polysomnography change for me?
I already take stimulants and antidepressant...
My work is very physically active. My morning cortisol level is low.
Would it be better to get a sleep study done in a larger medical center or locally? If I have it done locally will it be as accurate?
It took going to "the big city" to get a tentative diagnosis, though the neurologist i saw felt the diagnosis to be certain. This, after 4 years of trying to track down a diagnosis locally.
What could the sleep study/polysomnography change for me?
I already take stimulants and antidepressant...
Hi,
Yes sleep study or polysomnography will be diagnostic. Please get it done at your earliest. Also try to cut down stress in your day to day life. Make sure you get enough exercise during the day.
Yes sleep study or polysomnography will be diagnostic. Please get it done at your earliest. Also try to cut down stress in your day to day life. Make sure you get enough exercise during the day.
It is absolutely necessary to get a sleep study. I had symptoms very much like yours but I had a doctor who refused to label it narcolepsy until I had been thoroughly tested with an overnight sleep study. Even after treating my sleep disorders (OSA & PLMD), the doctor requires that I am consistently getting more than 6 hours of proven quality sleep over a period of time before considering a diagnosis of narcolepsy.
It may yet turn out I really do have narcolepsy, but the majority of my "odd" symptoms disappeared with some quality sleep over time. A diagnosis of narcolepsy can radically affect your life in regards to driving license rights and insurability. I wouldn't accept that label until there's nothing else to do to help your symptoms. Then after that, it is what it is.
It may yet turn out I really do have narcolepsy, but the majority of my "odd" symptoms disappeared with some quality sleep over time. A diagnosis of narcolepsy can radically affect your life in regards to driving license rights and insurability. I wouldn't accept that label until there's nothing else to do to help your symptoms. Then after that, it is what it is.
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