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Is This Narcolepsy? Help!


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#1 Kpirro

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Posted 22 November 2013 - 12:51 AM

Hi, I'm a college student and have been having sleeping problems for years. I only recently decided to go to the doctor when I realized that "normal" people don't fall asleep while they drive... oops. I have an appointment for a regular evaluation (no PSG or MSLT yet) with a neurologist on December 30th, but I'm so anxious to get it over with already. I'm really scared that they'll tell me nothing is wrong and I'll just have to live with this. My grandma has also had severe narcolepsy with cataplexy for years, but I can't talk to her about her symptoms because she also developed dementia. Is narcolepsy hereditary? I originally was sure that I had sleep apnea and that's why I was tired (my roommate tells me I snore...) but the doctors ruled that out because I'm not overweight or in the right age category. 

 

Some of my symptoms: Obviously, EDS. I won't fall asleep while in motion or having a conversation, but I fall asleep in all of my classes. I feel guilty because I don't want to fall asleep and the professors give me dirty looks afterwards. I pinch myself and drink caffeine to stay awake but nothing works. I usually take a nap between classes if I can, too. Even though I have a lot of work I usually get 8 hours of sleep or more a night, but it's absolutely impossible for me to get up on time. I'll sleep through alarms or push snooze for 45 minutes. I never wake up feeling refreshed. When I drive somewhere over 30 minutes, I'll almost always start to drift off. Usually I'll catch myself narrowly avoiding an accident 1-3 times per drive. In addition to my sleepiness symptoms, I'll also wake up screaming from nightmares about once a month (also found out about this from my roommate). Other times, I will have vivid scary dreams but won't actually make noise. Does that count as a hallucination? My last symptom is automatic behavior which again, I didn't realize I was doing until someone told me.

 

I'm just looking for some reassurance that I'm not crazy. Again, I don't know what I would do if the doctor said there was no problem. I would appreciate if anybody took the time to read and respond! Thanks again for all input! 



#2 Ferret

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Posted 22 November 2013 - 08:37 AM

You're not crazy and I hope you get some relief soon.

I'm not very impressed with your Doctor having ruled out sleep apnea because you're not overweight or in the right age category. The reasoning is ridiculous and dangerous. I will let him/her off the hook because at least you got a referral to a Neurologist.

Hopefully your Neurologist will have experience with Narcolepsy and will get you organized pronto. Having the gene for Narcolepsy doesn't mean that you will get it...it usually requires a trigger of some kind.

There's lots of reading material on this forum and on this website which will better help you understand what you're experiencing. It's not cookie cutter and we all experience varying degrees and symptoms. You may even come across an experience that will clarify a symptom that you didn't even know you had.

Read, learn and be better prepared for your appointment.

In the meantime, please don't drive...for the sake of others safety as well as your own.



#3 Kpirro

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Posted 22 November 2013 - 07:32 PM

Thank you so much!



#4 IdiopathicHypersomniac

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Posted 22 November 2013 - 08:15 PM

Could be lots of things other then narcolepsy.  Anyone who's sleep deprived can do automatic behavior, and everyone has a little bit of apnea.  But, at your age, it's usually narcolepsy.  If you have a big tongue and a deviated septum, it could be the snoring, or a combination of both.  Good luck!



#5 Hank

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Posted 22 November 2013 - 08:48 PM

Hi, I'm a college student and have been having sleeping problems for years. I only recently decided to go to the doctor when I realized that "normal" people don't fall asleep while they drive... oops. I have an appointment for a regular evaluation (no PSG or MSLT yet) with a neurologist on December 30th, but I'm so anxious to get it over with already. I'm really scared that they'll tell me nothing is wrong and I'll just have to live with this. My grandma has also had severe narcolepsy with cataplexy for years, but I can't talk to her about her symptoms because she also developed dementia. Is narcolepsy hereditary? I originally was sure that I had sleep apnea and that's why I was tired (my roommate tells me I snore...) but the doctors ruled that out because I'm not overweight or in the right age category. 

 

Some of my symptoms: Obviously, EDS. I won't fall asleep while in motion or having a conversation, but I fall asleep in all of my classes. I feel guilty because I don't want to fall asleep and the professors give me dirty looks afterwards. I pinch myself and drink caffeine to stay awake but nothing works. I usually take a nap between classes if I can, too. Even though I have a lot of work I usually get 8 hours of sleep or more a night, but it's absolutely impossible for me to get up on time. I'll sleep through alarms or push snooze for 45 minutes. I never wake up feeling refreshed. When I drive somewhere over 30 minutes, I'll almost always start to drift off. Usually I'll catch myself narrowly avoiding an accident 1-3 times per drive. In addition to my sleepiness symptoms, I'll also wake up screaming from nightmares about once a month (also found out about this from my roommate). Other times, I will have vivid scary dreams but won't actually make noise. Does that count as a hallucination? My last symptom is automatic behavior which again, I didn't realize I was doing until someone told me.

 

I'm just looking for some reassurance that I'm not crazy. Again, I don't know what I would do if the doctor said there was no problem. I would appreciate if anybody took the time to read and respond! Thanks again for all input! 

Narcolepsy is hereditary.

 

The fact that your grandmother has N/C is a huuuggge red flag for you. It presents a "high index of suspicion".

 

Do not accept any treatment or diagnosis from the neurologist until you have seen a Sleep Medicine Specialist (a neurologist who is fellowship trained in Sleep Medicine). Do not see a pulmonologist. A regular neurologist is unlikely to know enough about N to suspect it or make a diagnosis.

 

The doctor who ruled out sleep apnea based on age and weight is not the doctor I would be seeing for this.

 

See a sleep doc.



#6 Kimpossible

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Posted 27 November 2013 - 03:15 PM

A doctor should never rule out a diagnosis based on age or weight.  I agree, find another doctor.



#7 Kikisu

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Posted 30 November 2013 - 02:20 AM

You sound a lot like me before I got diagnosed with narcolepsy. All I noticed was the extreme tiredness despite being on heavy medications all the time (which made it hard to randomly pass out). It wasn't until I sat down with my sleep special list and had him ask me things that I started to realize I had a rather typical diagnosis. After my own diagnosis was confirmed, it turns out there's a good possibility that both my mother and half brother by my mother have narcolepsy. I had a similar problem with my doctors ruling out or not considering other options once they got something in their head (doc chalked my tiredness up to having had mono at some point in my life). If you ever wanna talk just message me :)



#8 exanimo

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Posted 05 December 2013 - 08:37 AM

I hope that you are able to find some answers!

How progressed is your grandmothers dementia? I work with people with dementia and Alzheimer's, and while communication can be difficult, it is not impossible. Obviously once it reaches a certain point, when the person can no longer make coherent sentences or cannot speak at all, it is. But if it has not progressed that far, with patience it can be done. Some tips I might give you: be patient. For the person with dementia it is extremely frustrating and embarrassing to lose their independence. When they struggle, assure them that it is okay and redirect them. Sometimes they can't find the right word; offer a few suggestions based on context, if it fails, just move on and maybe address it later. Stimulus is extremely important : many people become overwhelmed by too much stimuli. Even just background noise. But the lack of stimulation can also cause them to become upset and anxious. Avoid sun downing times - people with dementia often experience greater confusion and anxiety in the early to late afternoon. Mornings are often the best time oft communication.

Forgetfulness is common - ironically it usually works backwards. They may not remember grandchildrens names or recent events but they often will know their parents names or childhood memories. Keep your language simple, and do not overwhelm them with too much information. If you want to ask a question, do so in the shortest and simplest way possible. Do not offer open ended questions; asking what would you like for breakfast may evoke confusion, but if you ask do you want toast or waffles- will allow them to choose.

I know this is kind of unsolicited; and of course will not apply if the dementia is severely progressed. But I feel it is so important to continue to communicate with these people, these family members. Even when they cannot communicate clearly, they need love and compassion. They may not remember you and sometimes not even themselves, but they do know love and will welcome companionship.

I hope you will keep us updated. Perhaps you might take the Epsworth sleepiness test. It assesses daytime sleepiness. Likely your doctor will have you (if you haven't already) complete the simple assessment. But it never hurts to have done it and to be able to share it with your doctor. Tiredness is not easily defined - much like vision. It varies greatly and the sleepiness that PWNs experience is incredibly different from "normal" tiredness.

Good luck!