Anyone know of a book about AS and Narcolepsy

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Hello. I was wondering if anyone would happen to know about a book or anything for those of us who also happen to be narcoleptic? Or even just know of anyother person on the spectrum that is narcoleptic? Sometimes I feel mighty lonely in my neurological strangeness.

I dont know of any books about this but I believe my boyfriend maybe AS and he also has been DX with MS and Narcolepsy.His neurologist finds him very "interesting",as do I.(I am DX AS)

What medication,if any,do you take for your Narcolepsy?What is your sleep/wake pattern?My boyfriend goes to bed at 3-4am and wakes between 8 and 11am,but always falls asleep around 6 or 7pm(seems worse if he is reclining at all),for several hours.The only way he can stay awake is if he is actively doing something.....so he trys to stay busy with his guitars or the computer.Most times he cant make it through the first few minutes of a movie with out dosing off.He is on disability due to this and some cognitive issues of the MS.Do you get disability?

My bed time varies. But I tend to go to bed around 1 am and get up around anywhere from 11am to 1pm if left to sleep. I take 400mg of provigil to help me stay awake. I am going to start xyrem in a couple of months for my nightime sleep-- its GHB-- because mine is really messed up. I have a lack of REM paralysis and very frequent partial arousals. I also take a nap in the afternoon or early evening-- I try to keep it to an hour or less. Sometimes I want to sleep more but I try to stay awake. I also set various alarms throughout the day.

Sometimes I take adderall to help me stay awake in addition. I'm not on disability-- I'm not eligible for one thing. I do work very part time from home and I also go to grad school part time. I'm not that familiar with MS, so I'm not sure if some things wouldn't work because of that. But I do have fibromyglia in addition to the narcolepsy and I take meds to help with muscle spasms and pain and stuff with that.

I am also going to ask my neurologist to test me for HHV-6-- sometimes it is only in the spinal fluid-- I know there is a high incidence of this virus in people with MS which is why I mention it. My fibro started with Roseola or something a lot like it (HHV-6 causes Roseola) and that is why I am going to ask because it is a complicating factor for me for sure.

I think there maybe other people on here with MS?My sister has fibromialgia, which I know causes her to be very sensitive to touch ans she sleeps very little.My boyfriends MS,also makes him hypersensitive to touch.Have you had anything resembling an exacerbation?My boyfriends have all been mild(he is 53),some relating to his vision and possiblly cognitionThough the latter appears to be permanent and may have some thing to do with AS.(Which he denies he has and has never been tested for).I just found out he also has been tested and confirmed to have CAPD,which his neurologist says is related to his MS.Thats really confusing me.... the AS and the MS appear to have a lot of overlap.

Sorry if this post is a bit caotic,but I am having a hard time understanding which of his traits are from what.I do think it is a good idea that you are getting checked out for MS.My boyfriend was taking provigil but it is very expensive and has to jump through hoops to get insurance approval...now he is using Adderall.he also has been using Copaxon shots for the MS and hasn't had any "symptoms" in the past 6 years...Dr says he is doing great.

MS is caused by a virus. It attacks the Mylan sheath on the Axon of the nerves. Most people have it, but they also have an immunity to it. If you have MS and it hasn't killed you, or put you in a wheel chair, consider yourself very lucky. As far as Narcolepsy, there are several types, falling asleep slowly, and convulsive narcolepsy. They are both treatable. These are real live diseases, and should be treated by a doctor.

Some types of MS can go on for years. Others take a few years to kill the victims.

Good luck.
Beentheredonethat

I definitely don't have MS. For one thing, it would be odd in someone my age (I'm 23 now and I was 20 when I first got sick). Besides, I don't have any of the classic MS symptoms. I just meant that the Virus HHV-6 can be common in MS and it can also be in people who have fibro and CFS/ME.

I definitely have narcolepsy and fibromyalgia. I meet the criteria for those on the tests, etc. I actually have not been tested for AS and do not plan on being tested for it in the near future because it would be expensive. I have been positively diagnosed however as having NLD or nonverbal learning disability which can be very similar to AS (there is also a great deal of overlap) and I believe that I also meet the criteria for AS based on my observations and reading and so forth.

The NLD/AS I have had all of my life so it is very easy for me to tell what is related to that usually and what is related to my fibromyalgia or narcolepsy instead because those did not develope until I was 20 and 21 respectively. (Though I have had lack of REM paralysis my whole life).

I've always had sensory issues and they have always been annoying. Part of mine include an inability to fully "relax" during doctor's exams. Sometimes this can lead to errors on their part because they think I am fully relaxed even when I have informed them otherwise. I also put my NLD on my forms and it is on my chart, but sadly, many fail to fully read the chart. My brother has severe Autism (among other disabilities) and he also sensory issues, naturally. We don't have the same one's though-- I hate certain sounds very very much and textures and different ones with bother him and so forth.

I am not at all a light sleeper. I find it interesting that despite having an arousal per minute on my EEG during the sleep studies.

NORD is a charity that helps people with low income get provigil. www.needymeds.com is a directory that lists charity care programs for getting medication that is expensive through charity care programs based on income guidlines. I got my provigil through NORD before my insurance would pay for it.

By convulsive I think you mean cataplexy, which is not actual convulsions but instead a weakness or paralysis. It is temporary and usually triggered by strong emotion. The severity of cataplexy, if present, varies from person to person. Some people do fall asleep suddenly in a catapletic attack. Most people, however, do not. With narcolepsy it is instead the sleepiness that is more sudden, along with a compulsion to sleep. One usually knows one is sleepy before one falls asleep (though that doesn't mean falling asleep won't happen during dinner or a slow paced conversation, etc). Neurologists are the doctors of choice to treat narcolepsy, as well as MS since both are neurological disorders.

But narcolepsy has interesting social problems. So does AS. The combination I find can be especially challenging at times, hence my inquiry about a book.