Aa
Narcolepsy and MS
I'll begin with - I am not a doctor however I have done a lot of research in the last few days following my dx of Narcolepsy with cataplexy.
Key points: Narcolepsy is a CNS disorder and is thought to also be caused by an autoimmune disorder.
Causes: current thinking is that a group of cells in the brain responsible for sleep-wake behavior is damaged or absent. (gosh do you think the MS lesions might also damage this area for people unlucky to have both!)
Tests: The spinal fluid of most patients with narcolepsy shows the neuroprotein lacking or deficient. The neuroprotein is "hypocretin". Since some people have to have a spinal tap to dx MS, you might as well ask your doctor to test for narcolepsy also. There are other tests but since spinal tap is used for MS you can hopefully test for both.
Symptoms of cataplexy:
sixty to eighty percent of people with narcolepsy suffer from cataplexy. It can be triggered by surprise, fear, anger, or laughter. The effects include slight feelings of weakness and sagging facial muscles, head nodding, buckling knees, loss of arm strength, and mumbling or "garbled" speech. But it may also lead to immediate total body collapse ... these attacks may last from a few seconds to half an hour or so. There is no loss of consciousness. When muscle control returns, the person is entirely awake and alert.
(The information is from "Sleep to Save Your Life" by Gerard T. Lombardo. (dewey decimal library 616.8498 for this and other books on sleep disorders)
I regret saying this but I will now be asking my PCP to order a spinal tap. We can test for both narcolepsy and MS.
My dx summary: my migraine neuro says my migraines are causing the temporary blindness episodes in my right eye. The neurosurgeon confirms the bulging disk at C6 but says my walking problems and arm problems are caused by MS. The new neuro says I have narcolepsy with cataplexy. Note: "cataplexy which is almost unique to narcolepsy makes the diagnosis much easier."
For me cataplexy manifests itself sporadically. Sometimes if I have a real big sneeze/cough/laugh my legs will buckle and I have to catch myself before I fall. Not all of the time, but enough that when I read that symptom I knew I had it. (Especially since all of my friends and family deny ever having the same sensation!) Two of my falls on my time line were likely due to cataplexy. Both times I was rushing from one errand to another. However both times I left air conditioned comfort and was out in the hot desert heat. Without warning or fore knowledge I crumpled to the ground. I was not hurt - just my pride. It was not a "Hollywood type of fall flat on your face" it really was just a crumple only the human body doesn't collapse on itself so I was slightly at an angle.
Other symptoms of narcolepsy:
Excessive daytime drowiness - I described to my neuro that after waking up alert, after taking a shower, preparing for work and eating breakfast, I would be so tired I had to take a nap.
Sleep paralysis- The neuro asked if I had ever panicked after waking up to discover I couldn't move. But quickly regained the ability to move within a minute or two. He emphasized the panic. I said no. HOWEVER after reading more about this, yeah this happens to me. I just thought it was my body's defense mechanism and always said a thank you prayer to God for keeping me safe. See I have had 3 back operations at the L5S1 level. There were times when I thought I was trying to get out of bed before I was totally awake. Only my body refused to let me. The inability of my body to move brought me to full awake status. Thus enabling me to carefully get out bed. Hence I have never panicked, I instead thank God for protecting me.
Visual and auditory hallucinations. Sounds crazy but what they mean is ... very vivid dreams... are you able to wake up and remember your dreams. (Again these symptoms like MS symptoms are sporadic, they come and go over time.) Several times in the past 6 years I have woken up and been crying because the dream was just so real. (So less than 10 times in 6 years. You can see that it may be very sporadic.)
Auditory: I have noticed (and last week was very bad) that when I lay down to sleep I hear other sounds. I'll think the fan (I'm heat sensitive so I always have a fan blowing on me) is making too much noise. So I sit up and the sound goes away. I lie back down and the noise returns. I then sit up and sound goes away. Sometimes to humor myself I will turn the fan off and then on again to hopefully end the noise. I then just ignore it and go to sleep. I have also looked out the window to see if neighbors were making noise late at night. Again, I only hear the sound when I am lying down, when I sit up the sound goes away.
So if any of these symptoms sound like you, please ask your doctor's advice. It is possible to have both MS and Narcolepsy w/ cataplexy.
Key points: Narcolepsy is a CNS disorder and is thought to also be caused by an autoimmune disorder.
Causes: current thinking is that a group of cells in the brain responsible for sleep-wake behavior is damaged or absent. (gosh do you think the MS lesions might also damage this area for people unlucky to have both!)
Tests: The spinal fluid of most patients with narcolepsy shows the neuroprotein lacking or deficient. The neuroprotein is "hypocretin". Since some people have to have a spinal tap to dx MS, you might as well ask your doctor to test for narcolepsy also. There are other tests but since spinal tap is used for MS you can hopefully test for both.
Symptoms of cataplexy:
sixty to eighty percent of people with narcolepsy suffer from cataplexy. It can be triggered by surprise, fear, anger, or laughter. The effects include slight feelings of weakness and sagging facial muscles, head nodding, buckling knees, loss of arm strength, and mumbling or "garbled" speech. But it may also lead to immediate total body collapse ... these attacks may last from a few seconds to half an hour or so. There is no loss of consciousness. When muscle control returns, the person is entirely awake and alert.
(The information is from "Sleep to Save Your Life" by Gerard T. Lombardo. (dewey decimal library 616.8498 for this and other books on sleep disorders)
I regret saying this but I will now be asking my PCP to order a spinal tap. We can test for both narcolepsy and MS.
My dx summary: my migraine neuro says my migraines are causing the temporary blindness episodes in my right eye. The neurosurgeon confirms the bulging disk at C6 but says my walking problems and arm problems are caused by MS. The new neuro says I have narcolepsy with cataplexy. Note: "cataplexy which is almost unique to narcolepsy makes the diagnosis much easier."
For me cataplexy manifests itself sporadically. Sometimes if I have a real big sneeze/cough/laugh my legs will buckle and I have to catch myself before I fall. Not all of the time, but enough that when I read that symptom I knew I had it. (Especially since all of my friends and family deny ever having the same sensation!) Two of my falls on my time line were likely due to cataplexy. Both times I was rushing from one errand to another. However both times I left air conditioned comfort and was out in the hot desert heat. Without warning or fore knowledge I crumpled to the ground. I was not hurt - just my pride. It was not a "Hollywood type of fall flat on your face" it really was just a crumple only the human body doesn't collapse on itself so I was slightly at an angle.
Other symptoms of narcolepsy:
Excessive daytime drowiness - I described to my neuro that after waking up alert, after taking a shower, preparing for work and eating breakfast, I would be so tired I had to take a nap.
Sleep paralysis- The neuro asked if I had ever panicked after waking up to discover I couldn't move. But quickly regained the ability to move within a minute or two. He emphasized the panic. I said no. HOWEVER after reading more about this, yeah this happens to me. I just thought it was my body's defense mechanism and always said a thank you prayer to God for keeping me safe. See I have had 3 back operations at the L5S1 level. There were times when I thought I was trying to get out of bed before I was totally awake. Only my body refused to let me. The inability of my body to move brought me to full awake status. Thus enabling me to carefully get out bed. Hence I have never panicked, I instead thank God for protecting me.
Visual and auditory hallucinations. Sounds crazy but what they mean is ... very vivid dreams... are you able to wake up and remember your dreams. (Again these symptoms like MS symptoms are sporadic, they come and go over time.) Several times in the past 6 years I have woken up and been crying because the dream was just so real. (So less than 10 times in 6 years. You can see that it may be very sporadic.)
Auditory: I have noticed (and last week was very bad) that when I lay down to sleep I hear other sounds. I'll think the fan (I'm heat sensitive so I always have a fan blowing on me) is making too much noise. So I sit up and the sound goes away. I lie back down and the noise returns. I then sit up and sound goes away. Sometimes to humor myself I will turn the fan off and then on again to hopefully end the noise. I then just ignore it and go to sleep. I have also looked out the window to see if neighbors were making noise late at night. Again, I only hear the sound when I am lying down, when I sit up the sound goes away.
So if any of these symptoms sound like you, please ask your doctor's advice. It is possible to have both MS and Narcolepsy w/ cataplexy.
You are not crazy...I have a terrible case of Narcolepsy with EDS. I am thinking I could be developing MS as well...Take care...
I know this is an old post but i have just writian in my post about fatiuge when i'm sleeping that i have awful dreams really scary and i wake so frightened and crying or screaming i remember them so well for days and when i go back to sleep i go straight straight back to having these dreams infact i have them all night and then i sleep all day on and off and dream again when i wake its always because the dream has woken me, i dont think i ever get proper sleep and thats why i am so tired all the time.
sam
sam
I'm sorry that you are sick, and glad that I didn't collapse, but I'm lmao. "Sometimes to humor myself I will turn the fan off and then on again to hopefully end the noise." I do this too!!! I know those bells (thats usually what I hear) are out there and turn the fan off and on to see when they are louder! I heard them when the family was watching TV the other night. I wasn't fully paying attention to the TV, so when I heard them I asked the family about the bells. No one hear it, so I turned the TV off and on, the bells were there either way and the family got mad for ruining their program. I found it humorous, they didn't!
Thanks for me not being the only one to hallucinate!
Thanks for me not being the only one to hallucinate!
I hope you continue to talk about this online! I learned so much from your post. I really did not know about cataplexy! When I think back, people have told us about just buckling and falling and I never knew what to make of it. Thank you so much for this info!
I am going to read this whole thread very carefully and try to put this all together.
Quix
I am going to read this whole thread very carefully and try to put this all together.
Quix
I was on Provigil for many years and I eventually got immune to hit. My insurance company would pay for it, but it would only pay for 1 pill a day. When I would go to the pharmacy they would tell me my doctor would have to write a letter or call my insurance before they could fill it. I loved it when I first started taking it. It made my heartbeat fast, my pulse race and I really didn't want to eat ( I liked that about the medication). I now take Adderol, which is an amphetamine. I works, but I still have to take 3-4 pills per day. My eyes stay dilated, so I'am sure that people who don't know me think I am on drugs.....which I am but they are from my doctor. I was placed on antidepressants when I was first diagnosed with MS (1995) at that time there really was no medication. In 1996, I started Avonex and the drug maker required physicians to place all Avonex users on antidepressants....I got Prozac. It works for me. I read where you said you had to have a sleep study. Ive never had one. The MS has continually damaged my brain and spinal cord. I have bi-lateral brain damage, so that's how I got narcolepsy. My doctor has alot of faith that the Tysabri will heal my brain. I wont know if its helped until after my next MRI which should be in about month. I guess I have a pessimistic attitude towards thinking the medication will help me. I have failed all the other treatments for MS, so I try not to think about how great it would be if it really did heal my brain and the narcolepsy went away. Most people think I can control it, or that I am not sleeping enough at night. I go bed at 9:30 every night. They just don't understand how frustrating it is and I hate having people know I have it. I don't care if they know I have MS. I am really glad to hear that I am not alone in this, or that I'm just crazy. Thanks for the information and replying to my email.
Lori
Lori
Gosh I've finally met another 1 in 2,000 that has narcolepsy! I'm just learning about this. I found the books at the library on sleep disorders (dewey decimal 616.8498) all have one chapter on narcolepsy and cataplexy. This has been a good starting point.
My new neuro only dx last Thursday. He gave me Provigil (200mg) to try.
The Provigil is a wonder drug. I'll have to work with my insurance company to make sure it is covered.
Part of the treatment plan is with antidepressants to help control cataplexy!
You can google for some info on line. Search for narcolepsy.
Contact me offline if you want.
Sorry to hear about your dx but YEAH - I am not alone!!!! Someone else has this. I'm not crazy (LOL)
My new neuro only dx last Thursday. He gave me Provigil (200mg) to try.
The Provigil is a wonder drug. I'll have to work with my insurance company to make sure it is covered.
Part of the treatment plan is with antidepressants to help control cataplexy!
You can google for some info on line. Search for narcolepsy.
Contact me offline if you want.
Sorry to hear about your dx but YEAH - I am not alone!!!! Someone else has this. I'm not crazy (LOL)
I have had MS since 1995. I have gone through many bouts of paralysis, blindness, hear loss, memory loss, confusion and now I have narcolepsy. Everyone thought I was crazy and didn't think it was serious.....although I had 11 incidences of falling asleep while driving. I work for Disability Rehabilitation Services and they hire alot of people with disabilities. If they see me and I am having facial paralysis (Bells Palsy) or dragging my left I have had MS since 1995. I have gone through many bouts of paralysis, blindness, hear loss, memory loss, confusion and now I have narcolepsy. Everyone thought I was crazy and didn't think it was serious.....although I had 11 incidences of falling asleep while driving. I work for Disability Rehabilitation Services and they hire alot of people with disabilities. If they see me and I am having facial paralysis (Bells Palsy) or dragging my left left due to drop foot then I am disabled. If I have memory problems, or problems with the narcolepsy, then I am treated like I am too stupid to have a job. I try very hard to deal with the problems of narcolepsy, but it seems like the worse it gets the more depressed I get. I take a large dose of Prozac every day, so I shouldn't be depressed. My doctor has not really told me very much about the narcolepsy...will it go away? I take Tysabri infusions once a month and I have told left due to drop foot then I am disabled. If I have memory problems, or problems with the narcolepsy, then I am treated like I am too stupid to have a job. I try very hard to deal with the problems of narcolepsy, but it seems like the worse it gets the more depressed I get. I take a large dose of Prozac every day, so I shouldn't be depressed. My doctor has not really told me very much about the narcolepsy...will it go away? I take Tysabri infusions once a month and I have told this medication would help heal my brain. It has only gotten worse. How do you deal with this disease?
I'm glad you found this helpful. I am so focused on getting to a dx of MS that I forgot I could have something else! The symptoms of cataplexy are so similar to what many people with MS experience. One article I read (I'll have to find that one) mentioned that it is thought this is caused by a lesion in the brain that prevents it from working. And there are ways to treat narcolepsy and to treat cataplexy which can dramatically improve quality of life.
I too have to have a sleep study. Let me know how yours is. Cheers, Jules
I too have to have a sleep study. Let me know how yours is. Cheers, Jules
Damit! Keep trying to log off as have important emails to send before bed and an early start tomorrow then keep reading posts! Have to look at this one then must stop. Sorry haven't even introduced myself. Hi.
Very interested in this and would love to know more so thanks for doing a bit of research! Shortly will be having a night and day sleep study for many of the issues you mention here. Took me DECADES to bring it to the attention of doctors, and was initially and almost this time too dismissed. Because I said I didn't collapse in a heap whenever I got emotional all was right. But fortunately enough of my symptoms of daytime sleepiness and sleep paralysis which can be very severe and is worsening made the consultant have a rethink and they've booked me in. You don't know my history, apologies, seems to have worsening indications of some systemic problem, being investigated for lupus, not MS, and to date haven't really considered MS as a diagnosis. Wouldn't be out of the question though with the way I'm deteriorating, but as it was my joints that went first seemed more of a rheumatic/connective tisssue issue. But neurological symptoms are there, and getting worse, and a lifetime of sleep problems also getting worse. Had a big bust up with my neurologist and since then he has gone from declaring me as having symptoms of neurological problems to being someone he can't help, yet is sending me to a neurosurgeon and a sleep clinic. I also recently found out I had inflammed optic nerves but no-one thought to tell me why my eyes were hurting, blurred and seeing double.
I have heard that narcolepsy is an autoimmune condition. With MS comes severe fatigue so maybe it isn't entirely out of the question they could be connected.
Just really used your post as an excuse to rant about my problems. Sorry. But good on you for looking into this. Seems the volunteers on this forum do better research than a lot of well paid doctors! Right, must log off. You must think me very rude. Just very stressed. New job (in a dam hospital grrrrrrrrrrr) and lots of fights to prepare. Long story, not worth your time, seriously. Keep well and may look in again on your post after I've had my sleep study, if I can stand being kept in overnight. Working in the place is enough, sleeping there too? (but is a different hospital)
Yes I am slightly weird.
Wish
Very interested in this and would love to know more so thanks for doing a bit of research! Shortly will be having a night and day sleep study for many of the issues you mention here. Took me DECADES to bring it to the attention of doctors, and was initially and almost this time too dismissed. Because I said I didn't collapse in a heap whenever I got emotional all was right. But fortunately enough of my symptoms of daytime sleepiness and sleep paralysis which can be very severe and is worsening made the consultant have a rethink and they've booked me in. You don't know my history, apologies, seems to have worsening indications of some systemic problem, being investigated for lupus, not MS, and to date haven't really considered MS as a diagnosis. Wouldn't be out of the question though with the way I'm deteriorating, but as it was my joints that went first seemed more of a rheumatic/connective tisssue issue. But neurological symptoms are there, and getting worse, and a lifetime of sleep problems also getting worse. Had a big bust up with my neurologist and since then he has gone from declaring me as having symptoms of neurological problems to being someone he can't help, yet is sending me to a neurosurgeon and a sleep clinic. I also recently found out I had inflammed optic nerves but no-one thought to tell me why my eyes were hurting, blurred and seeing double.
I have heard that narcolepsy is an autoimmune condition. With MS comes severe fatigue so maybe it isn't entirely out of the question they could be connected.
Just really used your post as an excuse to rant about my problems. Sorry. But good on you for looking into this. Seems the volunteers on this forum do better research than a lot of well paid doctors! Right, must log off. You must think me very rude. Just very stressed. New job (in a dam hospital grrrrrrrrrrr) and lots of fights to prepare. Long story, not worth your time, seriously. Keep well and may look in again on your post after I've had my sleep study, if I can stand being kept in overnight. Working in the place is enough, sleeping there too? (but is a different hospital)
Yes I am slightly weird.
Wish
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