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Brain Injuries After Narcolepsy With Cataplexy Diagnosis

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#1 brian



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Posted 29 October 2009 - 10:26 AM

anyone have any experience with people already confirmed with narcolepsy who have sustained a brain injury after falling down . are there any unique problems or concerns that i should be aware of due to medications , rehabilitation ect.
the doctors say he is ok but he is experiencing difficulties staying awake and i am concerned that this is exasperated by his condition . thanks . brian

#2 Saraiah



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Posted 29 October 2009 - 10:07 PM

Hi Brian,

I know this isn't quite what you're looking for, but... Before I was aware that I had narcolepsy, but after I had very significant symptoms of narcolepsy, I was rear-ended at high speed by another car. The accident had nothing to do with my driving, and wasn't my fault, but nevertheless I sustained the symptoms of a very severe concussion even though my head did not impact on anything, and I never lost consciousness. (I later learned that in an accident involving fast whiplash, the soft brain doesn't move as quickly as the outer skull, sometimes causing the brain to be injured by bumping up against the inside of the skull.) I was out of work for a full month while I waited for my short term memory to come back, along with my "executive functioning" skills such as planning, organizing, being able to follow through on things, and being able to solve problems.

When my narcolepsy symptoms suddenly became so severe following an illness 15 months ago that I could no longer stay awake at work or while driving, an endless round of fruitless tests FINALLY revealed narcolepsy last July. Sadly, my experience has been that the sudden complete exhaustion and inability to stay awake associated with narcolepsy has been accompanied by a profound resurgence of the problems with memory and thinking that I first experienced after that car accident 3.5 years ago. I am no neurologist, but my assumption is that when I am profoundly exhausted, my brain just cannot compensate the way that it usually does for the mild brain injuries I've sustained. I've also noticed that my problems with memory and cognition can fluctuate wildly, with a very clear correlation with how long it's been since I was last asleep. In my own case, I tend to think and remember most clearly in the first two hours after awakening. If I go past 4 hours awake at a stretch, I'm at very high risk of complete loss of short term memory, saying things that just don't make any sense, and making inexplicable errors like failing to get off the bus while my eyes are open, and I'm noticing that we are indeed on my own street. It's really weird. I go from my usual intelligent self to someone who needs significant aid just to take public transportation.

I'm assuming that the person with the brain injury is your friend or family member, since you call him "he." Let me preface this by saying I am NOT a medical professional, but I educated myself a great deal after my head injury. I also have some minimal professional experience in working with brain injured patients.

Can you tell me how far the person fell (just from standing to the floor? Or down a flight of stairs? Etc.), whether this person lost consciousness when he fell (which may have been tough to figure out if he was already in cataplexy or a sleep attack), how long he may have been unconscious, whether there was bleeding that you could see, whether the skull itself was broken in any way, whether you were told that there was bleeding inside the brain and/or skull, whether surgery was needed and what kind, and how long ago the fall occurred? The effects of a brain injury can vary extremely widely depending on how and where the brain was injured. You can expect to see improvements over time; the farther out you get from the injury, the slower the improvements will continue to come.

One thing I can tell you for certain is that once a person has had a brain injury, he/she needs to be protected as much as humanly possible against further head injuries. Unfortunately, the effects of brain injury are sometimes cumulative. My doctors speculated that my own mild Traumatic Brain Injury symptoms were so severe because I had previously been rear-ended twice in I think the one or two years preceding the injury (no one ever believes this, but those two accidents were not my fault either. At all.). They speculated, and research bears out, that a series of minor concussions can eventually (#3 for me) cause major symptoms, since some of the damage to the cells in the brain is slow to heal, and can add up cumulatively. I tell you all of this just to emphasize that your family member or friend needs to be assisted in developing ways to move around in the world while coping with narcolepsy that minimize future bumps to the head.

One other thing I can tell you is that, at least for people with mild Traumatic Brain Injury like mine, we need to sleep. We need lots and lots of sleep. After brain injury, the brain does most of its repair work while the person is asleep. After mTBI, people will tell you that their brains can do so much, and then they just stop, and they feel that they just MUST sleep. And that's from people without narcolepsy! I know this had got to be really tough to figure out. But one suggestion I have is to try to watch what your family member is and is not able to do in relation to the last time he had a significant period of sleep.

I personally find (though I'm completely aware that my situation may be very different from your fellow) that I am completely unable to recharge using a 20 minute nap which many PWN find very helpful. I've experimented, and have found that I must have a minimum 2 hour nap for it to do any good. So, I just put together my self-observation of when my abilities to think and remember predictably fall apart (after 4 hours) with my observation of the minimum nap that works (2 hours). I try to stick to a schedule each day of getting up at 8am and working till noon; sleeping noon - 2pm; working 2pm-5pm; sleeping 5pm-7pm; and then spending time with my family from 7pm-10 or 11pm, when I gratefully hit the sack. I wonder if you tried to map out a similar schedule for your friend/family member, just based on his abilities and when they trail off, and then what length of nap is required to get him back up to full functioning (whatever that may be right now), perhaps you could figure out an awake/sleep schedule that might work well for him. And of course, as he continues to heal, his needs will likely change.

Let me know if he's dealing with an mTBI, as I have a couple of really excellent neurologist-approved books to recommend.

It sounds tremendously worrisome. I'll be thinking about you.


#3 Nyx



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Posted 29 January 2010 - 10:37 PM

anyone have any experience with people already confirmed with narcolepsy who have sustained a brain injury after falling down . are there any unique problems or concerns that i should be aware of due to medications , rehabilitation ect.
the doctors say he is ok but he is experiencing difficulties staying awake and i am concerned that this is exasperated by his condition . thanks . brian

Brian: Well, there has been research showing that people with traumatic brain injuries can develop narcolepsy, Since the prevailing view on the cause of narcolepsy is that there has been damage to certain cells in a specific part of the brain (the hypothalamus, which regulates the sleep/wake cycle), if a traumatic brain injury impacted that area, it could lead to narcolepsy, or similar symptoms. Ditto with a stroke or bleeding that impacted that part of the brain. I haven't specifically read about anyone with N/C who subsequently suffered a traumatic brain injury and whose N/C symptoms then worsened, but theoretically it could happen. If some of the cells had already been compromised and the individual developed narcolepsy, a subsequent traumatic brain injury that led to further damage could exacerbate the symptoms.

Regarding problems or concerns about N/C medications post traumatic brain injury, that would really depend on the medications and how severe the injury is. But I would think that your doctor would have been aware of all of his current medications and made sure he wasn't taking anything that could exacerbate intracranial bleeding (i.e., if his stimulants had raised his blood pressure too high).

Alternatively, perhaps you're seeing increased EDS or other symptoms of N/C because he is not taking his usual doses of medications post-injury. Has he changed his medications or habits? Have any new symptoms or problems cropped up? If everything else (medications, etc.) has remained the same, but the N/C has dramatically worsened or there are other neurologic symptoms, I would go back to the doctor to have them checked out. Perhaps some imaging? Or perhaps things have resolved by now and he's back at his usual baseline of N/C symptoms? Anyway, if you're back on this site again, please post an update on how he's doing. I hope things are better.

#4 Bafflegab



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Posted 05 March 2010 - 05:58 PM


My neurologist believes my narcolepsy may have been caused by a head injury. All of my narcoleptic symptoms started soon after my injury, but there isn't any way to be sure.

There are studies that show sleep disorders, including narcolepsy, can be caused by traumatic brain injury. Studies also show that people with TBI who also have excessive daytime sleepiness may not experience relief when their sleep disorder is successfully treated.

This is from a study published in the Journal of Clinical Sleep Medicine, in 2007 (Hypersomnia following traumatic brain injury, by Watson, Dikmen, Machamer, et al.), "Sleepiness is common following traumatic injury, particularly TBI, with more severe injuries resulting in greater sleepiness. Sleepiness improves in many patients, particularly those with TBI. However, a quarter of TBI subjects and non-cranial trauma control subjects remained sleepy 1 year after injury."

My experience bears that out. Unfortunately. Despite the prescribed meds I'm on, every single day is met with near complete physical exhaustion and sleepiness and a brain fog that seriously impede my ability to think and process information. The fact that narcolepsy is hidden only makes it worse.

#5 need2sleep



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Posted 09 April 2010 - 02:47 AM

This really doesn't have much to do with the original question but I found the replies very interesting. I was in a car wreck when I was 5yrs. old and then started sleeping all the time, at home, school, on the bus, ect. My mother has always believed the accident caused/triggered the narcolepsy but was told this was impossible. I'm new to this sight and it is the first time in 29yrs. of having narcolepsy I've looked anything up on it. So this makes for an interesting read for me.