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Hi! I’m Liz! From MN

I was diagnosed with narcolepsy this year 9/14. I’m 32 year old mother of two wonderful little men. I have been telling the Dr. I was tired all the time. They would always ask me if I was depressed and wanted to put me on meds for that. I was having some women problems sorry of the TMI. I end up having a hysterectomy in 9/13. Thinking that was why I was so tired. Nope still tired, the, one of my wonderful little men got in to some trouble so I was anxiety ridden. Was Rx with Effexor (2/14) no more super dizzy feeling after being startled, being upset, and laughing. I thought that was kinda different. I was still tired all the time. Finally my Dr. Said she was going to refer me to a Dr. for sleep problems. Went in and did the over night study got up in the morning they said good news and bad news. You don’t have sleep apnea . But you have to stay here all day and do the MSLT. 2 Weeks later diagnosed with narcolepsy. With Meds Life is amazing!! And I am awake for it.

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I have narcolepsy im a fulltime student in uk its really hard for me bcus my benefits have been stopped and now i cant pay for my course i dont get grants/ loans.what benefits would i be entitled to ?...

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That's a hard one to figure out Starfish.  Personally, and if you're in the UK as I suspect you are, I would suggest a wee trip down to the nearest Citizens Advice Bureau.   I don't think narcolepsy is recognised as a disability itself but the symptoms of it may qualify you for DLA or the new PIP.  It's got to be worth a try.   There's also ESA which you can apply for. 

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Hi, I'm Maryam and I was diagnosed this past October after experiencing symptoms for at least 5 years. I've been feeling overwhelmed by the diagnosis because I'm learning more and more about how the underlying issues in narcolepsy cause other problems in my life. So its been an emotional rollercoaster. I just finished reading "wide awake and dreaming," which was amazing and made me realize how much I want t meet other people with narcolepsy. I'm in my 2nd year of.law school and it's been such a challenge. I'd love to find a support group. I'm.in NC if anyone knows of one. Thanks.

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Hi, I'm Maryam and I was diagnosed this past October after experiencing symptoms for at least 5 years. I've been feeling overwhelmed by the diagnosis because I'm learning more and more about how the underlying issues in narcolepsy cause other problems in my life. So its been an emotional rollercoaster. I just finished reading "wide awake and dreaming," which was amazing and made me realize how much I want t meet other people with narcolepsy. I'm in my 2nd year of.law school and it's been such a challenge. I'd love to find a support group. I'm.in NC if anyone knows of one. Thanks.

what do u take and do u think it helps u? Im a student too so i know how hard it can be

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I'm a grad student and just had to request medical leave this quarter because I can't seem to get a grip on N, even with an increase of my meds.

I just found a support group in my area and I'm going to my first meeting next month. I'm really excited about finally meeting other people going through the same.

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what do u take and do u think it helps u? Im a student too so i know how hard it can be

Hi!

 

I take Nuvigil in the morning and Gabapentin at night to help me stay in deep sleep. So far I only have partial cataplexy so I haven't taken any medication for that yet. It's def hard to be a student, especially law school. I loved reading "Wide Awake and Dreaming." You should def read it. I'm starting this new thing where I'm stopping all the negative thoughts that come into my head about being "lazy" because I'm tired and not as good as my classmates. Because thats not true. We all know that. And I've stopped putting so much pressure on myself to "do everything." I quit all my jobs, reduced my hours at my part-time job. As students it is almost impossible to take care of yourself. But as people with narcolepsy we dont have that option. We have to take care of ourselves or we'll make our bodies fall apart. That happened to me in the my grad program. I was drinking all kinds of energy drinks and coffee to stay awake and I developed excruciating joint and muscle pain. It's still here but it's gotten better after i quit the energy drinks. How are you dealing with school?

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Hi!

I take Nuvigil in the morning and Gabapentin at night to help me stay in deep sleep. So far I only have partial cataplexy so I haven't taken any medication for that yet. It's def hard to be a student, especially law school. I loved reading "Wide Awake and Dreaming." You should def read it. I'm starting this new thing where I'm stopping all the negative thoughts that come into my head about being "lazy" because I'm tired and not as good as my classmates. Because thats not true. We all know that. And I've stopped putting so much pressure on myself to "do everything." I quit all my jobs, reduced my hours at my part-time job. As students it is almost impossible to take care of yourself. But as people with narcolepsy we dont have that option. We have to take care of ourselves or we'll make our bodies fall apart. That happened to me in the my grad program. I was drinking all kinds of energy drinks and coffee to stay awake and I developed excruciating joint and muscle pain. It's still here but it's gotten better after i quit the energy drinks. How are you dealing with school?

hiya its nice to know that im not alone in this .school is hell at the moment becuase my attendance is so poor im behind in class and when i go into class i cant concetreate at all and half the time i have automatic behaviour n its like my brains in sleep mode .its very hard becuase i feel my brains foggy and i keep procrastinating. Hmmm ive tried modafinil but unfortuntley i got a bad allergic reaction to it so tryna find something that will help me .

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hiya its nice to know that im not alone in this .school is hell at the moment becuase my attendance is so poor im behind in class and when i go into class i cant concetreate at all and half the time i have automatic behaviour n its like my brains in sleep mode .its very hard becuase i feel my brains foggy and i keep procrastinating. Hmmm ive tried modafinil but unfortuntley i got a bad allergic reaction to it so tryna find something that will help me .

 

Yeah, in undergrad, I had this one class where I realized at the end of the semester, all my notes were taken with automatic behavior and so it was all scribbles. I did not do so well on that final exam :(

 

The right medication is def. helpful. Before Nuvigil I would fall asleep during exciting classes and would be in REM before my eyes even closed. So embarrassing. Can you talk to your school about helping you out? The Dean od Student services at my law school said that if I needed, I could get disability services to hire someone to take notes for me. Might be worth looking into.

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What other support has ur uni offered u ? E.g. altering timetable? I will try to speak to someone thanks

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What other support has ur uni offered u ? E.g. altering timetable? I will try to speak to someone thanks

I have ADA accommodation. I get extended test times, and the professors are authorized to permit re-tests on timed exams. I'm also permitted to turn things in late, but I have to give prior notice that I need the extra time. (Some professors are still butts about things, though!) I do online classes through a traditional school, but if you're in a traditional program, you can request a surrogate to take notes on your behalf, or carbon paper to get a duplicate copy of a classmate's notes (get with a GOOD classmate!) Find a study group, if available.

Schedule your classes during your most alert periods. Don't try to pull all-nighters. Get your syllabus and plan for assignments/study time, and don't procrastinate. Allow plenty of time to get things done, so if you fall asleep when trying to work or study, it's not an issue because you're not in crunch time. Don't try to force yourself to stay awake to work. Take care of yourself first. Also, if you get your books through Amazon, instead of the campus bookstore, you can get the accompanying ebook for just a couple of dollars more, which makes it super easy and convenient to study on the go (not to mention, the pair together is usually less expensive, and you can still sell back the ones you don't want to keep at the end of the semester - Some are available for rent, too)! That way, you can study anywhere and anytime you are awake, without having to haul your textbook around all the time.

Hope this helps!

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I have ADA accommodation. I get extended test times, and the professors are authorized to permit re-tests on timed exams. I'm also permitted to turn things in late, but I have to give prior notice that I need the extra time. (Some professors are still butts about things, though!) I do online classes through a traditional school, but if you're in a traditional program, you can request a surrogate to take notes on your behalf, or carbon paper to get a duplicate copy of a classmate's notes (get with a GOOD classmate!) Find a study group, if available.

Schedule your classes during your most alert periods. Don't try to pull all-nighters. Get your syllabus and plan for assignments/study time, and don't procrastinate. Allow plenty of time to get things done, so if you fall asleep when trying to work or study, it's not an issue because you're not in crunch time. Don't try to force yourself to stay awake to work. Take care of yourself first. Also, if you get your books through Amazon, instead of the campus bookstore, you can get the accompanying ebook for just a couple of dollars more, which makes it super easy and convenient to study on the go (not to mention, the pair together is usually less expensive, and you can still sell back the ones you don't want to keep at the end of the semester - Some are available for rent, too)! That way, you can study anywhere and anytime you are awake, without having to haul your textbook around all the time.

Hope this helps!

thanks this is very helpful

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Howdy sleepy reader!

Dx'd {again actually (my life was in excrutriating limbo for months bc sleep center error in additon to mslt scoring doc went MIA for 7 weeks)} having Nw/C Dec 2014.

Unable to tell anyone until today. My tear-inducing emotions have settled down enough that my cataplexy wasn't triggered. Amazing to say it finally. Also able write a proper, yet brief, introduction.

I've lurked and posted ?s. I will probably add more later, just wanna say thanks for all the effort peopel here have put in. The support and information and validation I get by people sharing their experiences has been a real lifesaver during this storm.

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Hi. I'm Karen.

 

No official diagnosis yet, every time a doctor says yes my parent's never go back and take me to the next one. So two yes's so far, and one maybe from the current. *sigh*

 

Just a little tired of being so sleepy, haha. Tired of being tired. And the sleep paralysis. That's the worst for me, I see demons in black cloaks in my room. *hides under covers... but then realizes can't move* :mellow:

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Good gosh that is

Hi. I'm Karen.

 

No official diagnosis yet, every time a doctor says yes my parent's never go back and take me to the next one. So two yes's so far, and one maybe from the current. *sigh*

 

Just a little tired of being so sleepy, haha. Tired of being tired. And the sleep paralysis. That's the worst for me, I see demons in black cloaks in my room. *hides under covers... but then realizes can't move* :mellow:

Hope younhave some copinb skills, therapy, or other treatments available to you! Tired of being tired takes a heavy in the long term for lots of people. Hope you have freindly/loving support people in your life.

Welcome fellow extreme sleepy head!

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Hi. I'm Karen.

 

No official diagnosis yet, every time a doctor says yes my parent's never go back and take me to the next one. So two yes's so far, and one maybe from the current. *sigh*

 

Just a little tired of being so sleepy, haha. Tired of being tired. And the sleep paralysis. That's the worst for me, I see demons in black cloaks in my room. *hides under covers... but then realizes can't move* :mellow:

 

I totally get what you mean.  I get my good days and bad days but the bad days are killing me.  I'm desperate for a final diagnosis and treatment so I can have a normal life again. 

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slo.mo.a.go.go, thank you! I feel very at home here.

Spotty, yup. Exactly the same. I just need to find a way to get through the days now. And the nights, haha.

 

Starfish, yeah! I can't remember anything in my chemistry class for the life of me. I'll look down and not remember taking notes just five minutes earlier.

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Do u ever get like u cant soak up any information like ur like a vegtable?

 

All the time.  Had to give up an honours degree in history after just three years because of it. 

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It is very frustrating.  I've often been on the edge of tears because I just cannot sleep or I've just slept for two days. 

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