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At My Breaking Point


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#1 AnonPerson

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Posted 31 October 2013 - 07:14 PM

Hey there.

 

I don't expect anything from posting this. I don't even know what I am looking for by posting it. Perhaps I just want to say my thoughts, get opinions, or something else that I don’t know. This is going to be long.

 

I'm 21. I have narcolepsy (without cataplexy), Type 1 Diabetes, ADD, and moderate to severe anxiety and depression.

 

My story won’t begin with when I was diagnosed with narcolepsy. It will start with how my life started going downhill. And ending with me being at rock bottom.

 

I have been a type 1 diabetic since I was 9 years old (21 years now), and that alone to deal with is a headache. I've done well. My A1C (average blood sugar over a course of ~3 months) is 7.0. Doctors are impressed. I'm on the Omnipod Pump, which is great, discounting the harassing alarms it has. My blood sugars day to day are generally very good. But I have always felt sick day to day. I've tried everything, still always sick-ish day to day.

 

Starting from when I was in 9th grade, so I would be...14-15 years old, things got rougher. At first, I would feel exhausted all day during school and make it home to sleep from 4pm-8pm, and then again from 11pm or midnight to 630am. Then in 10th and 11th grade, I started sleeping through all my classes. I turned to caffeine to try and prevent me from sleeping, as I wanted to be successful. I was referred to as lazy, a slacker, etc, by everyone around me. I didn’t feel like I was. I literally was pushing myself as hard as I could. I got up to 2,000mg of caffeine a day and decided this was horrible as the caffeine effects would only last 20-30 minutes before I was tired again. I would drink several energy drinks a day, coffee, and what I couldn’t consume through drinks, I would then take caffeine pills. This was within a 1 month time span in 10th grade. I stopped “cold turkey” because I felt I was being ridiculous.

 

In 12th grade, I snapped from my ongoing fight with exhausting. I went to the doctor. I got diagnosed with ADD and was given Adderall and Vyvanse. I would take vyvanse in the morning, and adderall when it wore off so I could study in the afternoon. This worked for a while, up until after my first year of college. My grades in 12th grade greatly improved. I could finally stay awake in my classes. I have maintained the same dosage for 4ish years without an increase, which would be 20mg adderall IR a day, and 60mg of vyvanse a day. I graduated High School with a GPA of 3.5. I missed a total of ~300-400 classes from 9th grade to 12th grade due to being tired and unable to properly prepare for things. Staying awake and being focused was near impossible. I’d have a day out of the month when the moons aligned and magically I felt like I could study for hours. I took advantage of those moments, and studied as much as possible. I used diabetes as an excuse when I was behind.

 

Job wise, I've been successful. I worked at McDonalds from when I was 16-18. What a horrible job. Through a series of events, I got offered a job as an optician when I turned 18 through networking with people I know. People know I am smart. I am still an optician working for a doctor's office. In college, I am pursuing IT w/ Specialization in Internet Security. Optician work is a good job till I get my degree. It pays well.

 

A year after starting classes in college, I couldn’t deal with anxiety. It was bad. I didn’t go out any. I ended up with a Zoloft dosage of 150mg. I took this for a year, before I realized I was getting more cons than pros at this time. I took myself off of it.

 

Starting this last year and till now before my diagnosis with narcolepsy, things became unbearable. I could take 20mg of adderall and fall asleep an hour later unless I pushed myself hard to stay awake. I have taken breaks off adderall in the past during times I had nothing going on. My longest break away from it was 2-4 months. Recently, I have missed tons of classes at my university, and tons of days at work, due to sleeping through alarms and turning alarms off in my sleep.

 

Alarms don't work. I have several devices with alarms set on them. I have an alarm on my phone that makes me do three math problems to turn it of (e.g., 53 + 89 =?). With the math problem alarm, I can now do them in my sleep. I don't remember answering them, but I do. And I tried to make the math problems harder, but in my unconscious I will just pull out the battery of that alarm and then there goes any chance in other alarms set on that device to go off.

 

I finally got a sleep study done. I wanted to do it for a while, but I thought I was just feeling the same level of exhaustion that everyone else does. I delayed it quite a bit. The doctor said that I have narcolepsy without cataplexy, and my narcolepsy was misdiagnosed as ADD. It makes sense, as I never had a hard time focusing, just staying awake. In my 5 naps following the overnight study, I fell asleep constantly within 2 minutes, and being in REM at that time.

 

I am now on the highest dosage of Nuvigil, 250mg. The first day I took it, I felt the best I ever have. I am happy to know I got to experience what it might feel to be “normal.” Days later, it doesn't last the full day. I was encouraged by the doctor to now take half my old adderall dose in the afternoon to make it last the full day, which is 10mg. This works. But no matter what, the feeling of exhausting is with me. Nuvigil also helped with the social anxiety and depression that I have. I have now been on Nuvigil for a month.

 

Now, as the title says, I'm not far from my breaking point. With the feeling of exhaustion present everyday, knowing I will never feel rested from any amount of sleep, knowing that every day waking up will be like hell on earth, and when I am up I'm generally sick from diabetes... I don't want to live much longer.

 

I'm not going to hurt myself. I don't do that. I'm not depressed either. I'm more emotionless. But to be honest, I can fake a good uplifting spirit very well. But I can't take this torture that I am going through anymore. I look back to my childhood, and although I had some "*BEEP*ty" experiences then, I was the happiest kiddo you would ever see. I was eager to do things and I was happy. And as much as I try, emotions are very hard for me to feel. Most are faked so I can come across as "normal." I’m tired. Going back to the “I don’t want to live much longer” statement, I mean that I would be happy if things just stopped for me.

 

This semester alone, I’ve missed plenty of programming tests, classes, etc. I think I probably have around 12 absences in each of my classes now, and I only have them twice a week. But, again, my grades are sitting at all A’s or B’s. But I feel like a failure. When I miss a test, I email my professor and let him know that I am sorry I overslept and couldn’t get up. He knows I have narcolepsy, I told him. But I get a sense that everyone is frustrated by this. The doctor I work for now is probably on the verge of firing me. I would, in his / her position (being vague with his / her gender). I am unreliable. It takes a lot of motivation from me to convince myself I’m not a failure and it is out of my control. But I feel like I am full of excuses. I hate it.

 

I'm tired of pushing through this, knowing things won't get better. You may say there is a lot to live for. That is true, and I believe that. But I don't think it is worth it for me to endure this and try to get to the point where I can experience life's many beautiful things.There is no cure for narcolepsy or type one diabetes. It is something I will continually have to fight with.

 

I’m trapped.

 

“I believe in it, I answer for it, for the whole work of man really seems to consist in nothing but proving to himself every minute that he is a man and not a piano-key!”

            -Dostoyevsky



#2 WarmColors

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Posted 31 October 2013 - 08:49 PM

You never know how things can change though, and I mean for the better. I'm the same age as you and also attending university, except I only have narcolepsy with cataplexy. I think it's important to give yourself grace. Recognize you're doing your best and set goals that are achievable and which make you happy. Obviously this is easier said than done, and it is very difficult to continue forward when you're feeling unwell but everyone has their own battles, and we just have to make the best out of what we have.

 

I'm sorry that times have been so difficult for you, but thank you for sharing your story. It's nice being able to connect with others who can relate.



#3 AnonPerson

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Posted 31 October 2013 - 09:20 PM

You never know how things can change though, and I mean for the better. I'm the same age as you and also attending university, except I only have narcolepsy with cataplexy. I think it's important to give yourself grace. Recognize you're doing your best and set goals that are achievable and which make you happy. Obviously this is easier said than done, and it is very difficult to continue forward when you're feeling unwell but everyone has their own battles, and we just have to make the best out of what we have.

 

I'm sorry that times have been so difficult for you, but thank you for sharing your story. It's nice being able to connect with others who can relate.

 

Thanks, I appreciate the comment. And that's good advice. I think I put the bar way too high for myself, wanting to do everything. And when I fail, I start having low thoughts.

 

For example, last semester I was taking 19 hours at university and trying to work 30+ hours a week. I know that in normal circumstances, the classes I took would be no problem. I think I spread myself out too thin and ended up with a horrible GPA, failing several classes that I shouldn't have, and work suffered as well. This semester I've cut down on both and it's OK.

 

I'll keep that advice in mind.

 

Thanks again and hope all is well for you as well.



#4 Ferret

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Posted 31 October 2013 - 10:29 PM

Wow!You are to be commended for what you have achieved.
Now, could you please cut yourself some slack and bask in those achievements? You are 21 and life is not a race, it's a journey and it's supposed to be enjoyed.
From my 7th grade teacher (and that's a reaaalllly long time ago for me...like 50 years)..."The difficult we do at once, The impossible takes a little longer".
Please don't give up, the world needs more young people like you that have the tenacity to overcome obstacles to achieve their dreams.

#5 AnonPerson

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Posted 01 November 2013 - 12:37 PM

Wow!You are to be commended for what you have achieved.
Now, could you please cut yourself some slack and bask in those achievements? You are 21 and life is not a race, it's a journey and it's supposed to be enjoyed.
From my 7th grade teacher (and that's a reaaalllly long time ago for me...like 50 years)..."The difficult we do at once, The impossible takes a little longer".
Please don't give up, the world needs more young people like you that have the tenacity to overcome obstacles to achieve their dreams.

 

Ferret, thank you for replying so much.

 

I wish I could feel that life is not a race. In today's society, everything is so "McDonaldized" - a term that I have wrote several papers about. Basically, everyone is looking for the quickest way from point A to point B. A good example would be being able to "google" answers and get them much quicker than in previous times. A bad example would be puppy mills.

 

I digress, I do try and enjoy life. It just is hard to do that when everything around me moves so fast. And society, in a sense, forces me to try my best to live that lifestyle.

 

I appreciate the advice, and will keep it in mind as well.

 

 

I do appreciate the replies I've gotten so far. It does make me feel better.



#6 Linna

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Posted 01 November 2013 - 04:54 PM

Thanks for sharing,

I can relate to a lot of what you shared.  It is not easy to express these feelings without the fear of being judged.

 

Now, as the title says, I'm not far from my breaking point. With the feeling of exhaustion present everyday, knowing I will never feel rested from any amount of sleep, knowing that every day waking up will be like hell on earth, I too feel this way somedays ---feel like there is no answer or anyone who understands or cares.

 

I'm not going to hurt myself. I don't do that. I'm not depressed either. I'm more emotionless. But to be honest, I can fake a good uplifting spirit very well. But I can't take this torture that I am going through anymore. I look back to my childhood, and although I had some "*BEEP*ty" experiences then, I was the happiest kiddo you would ever see. I was eager to do things and I was happy. And as much as I try, emotions are very hard for me to feel. Most are faked so I can come across as "normal." I’m tired. This is a day to day thing I do too.

 

Going back to the “I don’t want to live much longer” statement, I mean that I would be happy if things just stopped for me.your 

I hope things change for you.......wish I had a magic answer

Will try to follow up later and chat....it sounds like you have a nak for writing-Maybe you should keep a journal for future publishing......u never know. ;)  



#7 AnonPerson

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Posted 01 November 2013 - 06:47 PM

Thanks for sharing,

I can relate to a lot of what you shared.  It is not easy to express these feelings without the fear of being judged.

 

I too feel this way somedays ---feel like there is no answer or anyone who understands or cares.

 

This is a day to day thing I do too.

 

Going back to the “I don’t want to live much longer” statement, I mean that I would be happy if things just stopped for me.your 

I hope things change for you.......wish I had a magic answer

Will try to follow up later and chat....it sounds like you have a nak for writing-Maybe you should keep a journal for future publishing......u never know. ;)  

 

I wish all of us had a magic answer. It sure would save everyone a headache :).

 

And thanks for the compliment involving my writing / post! I have only one teacher to thank for that, and that is my 12th grade English Composition teacher. He graduated number one in his university, and was a phenomenal teacher. He kicked my butt. I remember one time in his class, I was having a hard time structuring my writing. This was on a Friday. On Monday after class, he came up to me and told me that he had printed out a strategy to organize my thoughts better so I could express them in my writing; and this strategy was tailored to me and how I was currently writing / thinking. I can honestly say that I would not be where I am today without him doing that, as it helped organize other parts of my life as well. THAT is how education / teachers / professors should be.

 

But definitely follow up. If you ever want to share something with me as well, I'm open ears.

 

Thanks again for everyone's replies. It means a lot.



#8 Linna

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Posted 01 November 2013 - 06:59 PM

I wish all of us had a magic answer. It sure would save everyone a headache :).

 

And thanks for the compliment involving my writing / post! I have only one teacher to thank for that, and that is my 12th grade English Composition teacher. He graduated number one in his university, and was a phenomenal teacher. He kicked my butt. I remember one time in his class, I was having a hard time structuring my writing. This was on a Friday. On Monday after class, he came up to me and told me that he had printed out a strategy to organize my thoughts better so I could express them in my writing; and this strategy was tailored to me and how I was currently writing / thinking. I can honestly say that I would not be where I am today without him doing that, as it helped organize other parts of my life as well. THAT is how education / teachers / professors should be.

 

But definitely follow up. If you ever want to share something with me as well, I'm open ears.

 

Thanks again for everyone's replies. It means a lot.

I was an English major in college.  What college did your English professor go to?

I like to write and I enjoy reading - especially when one's thoughts are organized and deeply leveled appropriately.

I am awake for a little while...however, on a computer, writing, it knocks me out....I usually only last 30 min before I hve to take a break....hope to chat again soon. HANG in there...there will be Good Days!!! I promise.



#9 TiredAgain

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Posted 01 November 2013 - 07:38 PM

"I don't want to live much longer"  is a very strong statement.

 

By saying I don't want to live "much longer" is actually saying I want to live just not like this. So run with the positive part and take one day at a time. Don't expect so much from yourself right now. Believe me you have many years to accomplish your goals.

 

You should think about taking a class online, so you can cut back at the University but still keep your education moving.

 

Start using some positive self talk and I know it will be really hard to do that when you feel crappy everyday, but it can help. I know this sounds weird or corny but you can even put some positive quotes around your room to help remind yourself of your goal(s). Like "My life's tough but I will succeed" etc...

 

Good Luck



#10 Ferret

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Posted 04 November 2013 - 07:51 AM

LOL! Inspirational quotes have gotten me through some really crappy times in my life. The oldest one that I remember from being a kid is familiar to nearly everyone...

"God grant me the Serenity to accept the things I cannot change...Courage to change the things I can...and the Wisdom to know the difference".

Here is a website that may be of interest...

http://www.joyofquot...age_quotes.html

 

And I'll close with a quote from Mae West..."I used to be snow white...but I drifted"



#11 AnonPerson

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Posted 09 November 2013 - 09:52 PM

"I don't want to live much longer"  is a very strong statement.

 

By saying I don't want to live "much longer" is actually saying I want to live just not like this. So run with the positive part and take one day at a time. Don't expect so much from yourself right now. Believe me you have many years to accomplish your goals.

 

You should think about taking a class online, so you can cut back at the University but still keep your education moving.

 

Start using some positive self talk and I know it will be really hard to do that when you feel crappy everyday, but it can help. I know this sounds weird or corny but you can even put some positive quotes around your room to help remind yourself of your goal(s). Like "My life's tough but I will succeed" etc...

 

Good Luck

 

I read your post the day you posted, but I have been just been too busy / tired to respond. I was actually very taken back by your view on what me saying "I don't want to live much longer." I never considered the positive aspect of it, as I did not think it did exist.  I never got a response like yours that explained it. And you are absolutely right. I don't want to live like this. But I do want to live. I do hope for better. It's actually helped me think about other thoughts I have. I'm glad you posted that, or I would probably not have thought of it that way.

 

I've tried taking a class online, but for whatever reason I have a lot of trouble with it. I think I prefer something that tells me in paper what I have to do, versus an online assignment date. I think I might remember due dates better if told / given it in paper. I'm not exactly sure. I might try again in the future. My university has brilliant computer science professors, and I do enjoy the lectures when I can make it to class. But most don't understand why I am there some days and not others, and that going to university and listening to their lectures is actually something I want to do, and don't go just for the grade. I have fun during them. I like learning :P.

 

I do like the quotes around the room idea, but I don't know how much it would help. You never know till you try, however, so I may give it a go :)

 

 

 

I was an English major in college.  What college did your English professor go to?

I like to write and I enjoy reading - especially when one's thoughts are organized and deeply leveled appropriately.

I am awake for a little while...however, on a computer, writing, it knocks me out....I usually only last 30 min before I hve to take a break....hope to chat again soon. HANG in there...there will be Good Days!!! I promise.

 

If I remember right, it was Baylor University.

Oddly enough, being on the computer helps me stay awake. As much as I enjoy reading and learning, it is near impossible for me to read out of a physical book. And I really wish I had the ability to do it without falling asleep, because I prefer reading from physical books than online books.

 

LOL! Inspirational quotes have gotten me through some really crappy times in my life. The oldest one that I remember from being a kid is familiar to nearly everyone...

"God grant me the Serenity to accept the things I cannot change...Courage to change the things I can...and the Wisdom to know the difference".

Here is a website that may be of interest...

http://www.joyofquot...age_quotes.html

 

And I'll close with a quote from Mae West..."I used to be snow white...but I drifted"

 

Great, funny, quotes :D.

 

As far as some of my favorite quotes, Dostoyevsky wrote one about not being the keys of a piano and having control over his own life (I've done a lot of studying in existentialism, and I love the concepts in it). It's actually in the last sentence of my original post :D. I always try to live my life how I want to, and not according to others. I think that's something most of us try to do on these forums, but it is hard.

 

Another is by Aristotle which is that "Without friends, no one to choose to live though he had all over goods."

 

Mine aren't humorous haha.



#12 TiredAgain

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Posted 09 November 2013 - 10:29 PM

AnonPerson one thing that I have done when I was really down and stressed was to look up positive quotes and I copied and pasted them. I had like 3 sheets of different types of quotes and I would read them at night. A few of them I put on my phone and I would read them whenever I needed it.

 

I thought I was wasting my time but it really helped. There are times we all need to know that something better is around the corner and that it can happen to us. Remember when you hit bottom there's nowhere to go but up!

 

If you can get to the lectures you should and record them so if you have sleep episodes and/or  brain fog you can listen again later. You love to learn so learn in whatever way you can. So when you get through this dark time and you will, you will be ready for the good things education can bring you.



#13 Ferret

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Posted 10 November 2013 - 07:33 AM

 

 

If you can get to the lectures you should and record them so if you have sleep episodes and/or  brain fog you can listen again later.

 

This concept is GENIUS!!!



#14 doinmdirndest

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Posted 12 November 2013 - 04:28 AM

I recommend you pursue Adderall in higher doses. it appears from your posts that when this med worked for you it did so w/o detrimental side effects. those who take exception to my views on the rx'ing of Adderall are legion; substantive explaining they can deploy from a long list of why and wherfores from science as to why 60mg/d Adderall is an appropriate guideline as the maximum amount anyone should be prescribed, ever. I am prescribed 270mg/d Adderall. 2 words. IT WORKS.

evidently, bad experiences w/the med are common here, and this means you are atyipical in that when Adderall works it's ok.

20mg/d Adderall is NOTHING. buck for 120mg/d. if you succeed, you likely will participate in your own life as a result. say little as possible to the doctor when asserting this request. loquatiousness, especially if coupled w/adrenaline from 'oh, s., the chips are down and it's crunch time' status of being before the doctor with a critical 'tough sell' to pull off will resemble your being overmedicated.

obtain a copy of PHARMACOLOGICAL ASPECTS OF HUMAN AND CANINE NARCOLEPSY by dr. Emmanuel mignot and seiji nishino. on pg. 37 or so is to be found a section recognizing the need for high doses in some patients-with doseaging examples even higher than mine.

give a copy to your md at your visit. perhaps have it on the high dose info. as you present it. be certain to appear tired. say few words. stress that you want to be a functional citizen and that to do this you need enough medicine. beware xr, it's like trying to get better mpg out of a car by leaning the (gasoline/air, in old school carburetor) mixture way out.

good luck. I too had a place in the exact same hell. I pray you leave there soon.

#15 purpley

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Posted 12 November 2013 - 01:42 PM

It sounds like you have depression.  I know people think you have to be sad to be depressed, but you don't.  Feeling "emotionless," or feeling anhedonic (like you just don't enjoy anything), even without sadness, is depression.  When you start to feel like you're trapped, and you dread waking up every day, and you just wish things would stop, that's a sign that the depression is bad enough to go get some help.  Depression itself makes it hard to even imagine ways out of it.

 

You don't have to keep feeling this way.  I'm a believer in both psychotherapy and meds, which works better than either alone.  Psychiatrists can prescribe and will understand the narcolepsy, but lots of them don't do psychotherapy any more.  If you can find a psychiatrist who does both meds and psychotherapy, great, but if not, get yourself a psychologist, too.  It's well worth it.

 

Anyway, Allie Bosch does a blog called "Hyperbole And A Half."  She has one of the best comic blogs ever created and did two essays on her own depression.  You can see them here:

http://hyperboleanda...depression.html

http://hyperboleanda...n-part-two.html

 

Take care of yourself, you deserve it.



#16 ironhands

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Posted 12 November 2013 - 04:05 PM

Allie is awesome!



#17 doinmdirndest

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Posted 12 November 2013 - 07:44 PM

if you live in n. calif.  see dr. robert i. picker, in walnut creek.    he is both an excellent psychiatrist and will treat your n, perhaps after an mslt he'll order.

 

i blew it w/this man.  just did a dumb f. maneuver.  best not mention me at dr picker's.   i was in his practice 8 years.   he's the doctor that titrated me up to 300mg/d adderall.  (boy, did i ever drop the ball)

 

intrepid, thy name is picker.



#18 AnonPerson

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Posted 12 November 2013 - 10:35 PM

Lots to respond to, and I am very tired. Missed all my classes again today. My alarms went off, because I think I remembered doing some math to turn them off, but it feels more like a dream that I did. Slept all day, tried to get out of bed, and finally did. Went to tutor someone in programming, and now I am super tired. If I remember right, I took 30mg adderall IR, 60mg Vyvanse, and 250mg Nuvigil. If my responses are crappy, I blame my tiredness :P.

 

 

AnonPerson one thing that I have done when I was really down and stressed was to look up positive quotes and I copied and pasted them. I had like 3 sheets of different types of quotes and I would read them at night. A few of them I put on my phone and I would read them whenever I needed it.

 

I thought I was wasting my time but it really helped. There are times we all need to know that something better is around the corner and that it can happen to us. Remember when you hit bottom there's nowhere to go but up!

 

If you can get to the lectures you should and record them so if you have sleep episodes and/or  brain fog you can listen again later. You love to learn so learn in whatever way you can. So when you get through this dark time and you will, you will be ready for the good things education can bring you.

 

I used to think there was nowhere to go but up, but it appears I can dig through rock bottom and keep going ;). Set new records. Haha. But as that is a positive thing to say, I'd be more happy if things just stayed at the same bad / neutral level instead of rollercoastering.

 

I have actually recorded my professors since I started at the university, even prior to my diagnosis. I agree that it does help. I find that if I am in class, though, I usually remember everything.

 

As a child I had a near-"identic" (whatever you want to call it...very good?) memory, up until about the end of 8th grade. I could read several paragraphs, sometimes just once, others twice, and I would be able to recite it with no mistakes. I was very, very perceptive, and I remembered everything I saw. I was 3 years ahead in math by 7th grade. Then, everything came to a extremely fast halt. I had trouble concentrating, I had trouble remembering things, and my identic memory ability diminished. By 12th grade, it took me 30 minutes to memorize ONE notecard that had one word on the front, and a few sentences on the back, going over what that term was. I remembered that I would just blank out, forgot what I was doing, and then couldn't remember anything on the notecard. I know now that it was narcolepsy, and I'm glad I know it now.

 

On adderall and vyvanse (and now Nuvigil too), I have some of my old memory abilities. So, when in class I usually can at least remember what was said. But so far now, I have missed 14 classes in each class (4 total) that I have only 2 times a week. It's super frustrating.

 

 

This concept is GENIUS!!!

 

I concur :D.

 

I recommend you pursue Adderall in higher doses. it appears from your posts that when this med worked for you it did so w/o detrimental side effects. those who take exception to my views on the rx'ing of Adderall are legion; substantive explaining they can deploy from a long list of why and wherfores from science as to why 60mg/d Adderall is an appropriate guideline as the maximum amount anyone should be prescribed, ever. I am prescribed 270mg/d Adderall. 2 words. IT WORKS.

evidently, bad experiences w/the med are common here, and this means you are atyipical in that when Adderall works it's ok.

20mg/d Adderall is NOTHING. buck for 120mg/d. if you succeed, you likely will participate in your own life as a result. say little as possible to the doctor when asserting this request. loquatiousness, especially if coupled w/adrenaline from 'oh, s., the chips are down and it's crunch time' status of being before the doctor with a critical 'tough sell' to pull off will resemble your being overmedicated.

obtain a copy of PHARMACOLOGICAL ASPECTS OF HUMAN AND CANINE NARCOLEPSY by dr. Emmanuel mignot and seiji nishino. on pg. 37 or so is to be found a section recognizing the need for high doses in some patients-with doseaging examples even higher than mine.

give a copy to your md at your visit. perhaps have it on the high dose info. as you present it. be certain to appear tired. say few words. stress that you want to be a functional citizen and that to do this you need enough medicine. beware xr, it's like trying to get better mpg out of a car by leaning the (gasoline/air, in old school carburetor) mixture way out.

good luck. I too had a place in the exact same hell. I pray you leave there soon.

 

That is a good thought, just increase the adderall dose. But what I like about the Nuvigil is that even just only waking me up a little, it does take away my anxiety that I have (not induced by adderall, adderall doesn't effect it). When I take adderall with it, however, I don't feel as much as a robot as I do without nuvigil. It's weird. There are some days where I take 70mg adderall, others I take none, but it just varies on how bad my sleep attacks and EDS are that day. I am worried of the long term effect of adderall, despite me being OK with sacrificing life in order to feel awake for more parts of it. But it is a toss up. I will consider talking about an increase. I might give it longer to analyze how I feel. 

 

And regarding your recent post...what happened to the doctor? Unfortunately, I'm no where near CA. I am in the US, though. 

 

It sounds like you have depression.  I know people think you have to be sad to be depressed, but you don't.  Feeling "emotionless," or feeling anhedonic (like you just don't enjoy anything), even without sadness, is depression.  When you start to feel like you're trapped, and you dread waking up every day, and you just wish things would stop, that's a sign that the depression is bad enough to go get some help.  Depression itself makes it hard to even imagine ways out of it.

 

You don't have to keep feeling this way.  I'm a believer in both psychotherapy and meds, which works better than either alone.  Psychiatrists can prescribe and will understand the narcolepsy, but lots of them don't do psychotherapy any more.  If you can find a psychiatrist who does both meds and psychotherapy, great, but if not, get yourself a psychologist, too.  It's well worth it.

 

Anyway, Allie Bosch does a blog called "Hyperbole And A Half."  She has one of the best comic blogs ever created and did two essays on her own depression.  You can see them here:

http://hyperboleanda...depression.html

http://hyperboleanda...n-part-two.html

 

Take care of yourself, you deserve it.

 

I do agree that I must be somewhat depressed, or have depressed states. But I feel like it's more emotionless-depression. Just like I have emotionless-happiness. I do my best to keep my head up. And I will go to a psychologist / psychiatrist, I just need to find time. Seems like I'm getting less and less of it everyday. I'll check out the links later as well :).

 

I find that my emotionless sank in when I was diagnosed with type 1 diabetes at age 9, and was fully in place by the time I believe my narcolepsy started to be prominent, around 14.

 

Being 9 years old, you would think that doctors and / or nurses would sugar coat the medical complications that can occur A LITTLE. But they didn't. I was told in full detail about how if I didn't take care of my blood sugars I could die earlier, I could lose my fingers / toes / arms / legs / feet / hands and have them amputated, how I could lose my vision and not be able to see, how much greater the risk of heart attacks were that could lead to death, how I could have organ failure, and the list goes on. I was told this continuously for my 3 day stay at the hospital. I had to learn how to block those thoughts out, as I was getting overwhelmed with depressing thoughts that I never ever considered. And I trained my body to not feel pain when I take shots, prick my fingers, etc, over the years after that, as it was a lot for me to handle. Then, with all that building up, going through everything in school involving exhaustion and more mentioned above in my first post, the result is where I am at today. I do think I have some slight depression, but I know I have a lot of walls built up to hide everything I feel. I'm rambling now, and I don't know if what I typed makes sense with me being really tired right now. That's what happened though.



#19 doinmdirndest

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Posted 13 November 2013 - 03:20 PM

what happened to dr. picker? to understand my reply you must 'read between the lines' as I must not mention here or be banned (again) by nn a significant component of my treatment with wakefulness promoting drugs. this spans 30+ years. the last ten are under medical supervision. comparatively massive doses are indicated in me because of this component due to doseaging therein.

dr. picker's insightful, intuitive inquiries preceded each upwards titration (normally requested by me, as opposed to suggested by the good doctor) from the 30mg/d Adderall at which it was began about ten years ago then 60mg/d an adjustment his own when the thirty did nothing. his objectives/purposes are not known to me but I believe his goal was to 'mainstream' me.

the component I mention yet must not detail had me in a marginal existence and in the company of career criminals. I have never been of a mind to make money/a living w/anything other than an honest day's work.

I had come to a point where, w/150mg/d Adderall then rx'ed w/ ADHD and mild apnea the indications, dr picker ordered the MSLT. after results proved my severe hypersomnia -albeit w/but 'highly suggestive of narcolepsy' results as the 1 SOREM meant xyrem would not be covered- he stated we were in a better position to increase my Adderall dose. however, he began by lecturing to me the terms of a 'contract' with him I was to be under in which even a single instance of my obtaining treatment other than the medicine he rx'ed results in same rx being stopped by him, never to be started again.

I agreed. he then said, 'how much Adderall must you have to keep your end of the deal? I don't think he anticipated '300mg/d', but picked up the rx pad and wrote it, after but briefly discernable expression of impact/shock. like I just put a match to his shingle.

the 300 was an inadequate approximation on my part. however, my wife and I managed to keep to the terms of the contract for 6 monthts that ended when, in a highly agitated state, we contacted his office w/our wish to 'fire' standford sleep. I had been sent there by dr jon sassin*, the sleep specialist dr. picker ordered an evaluation of after we remitted an adjustment in the amount of Adderall I needed to 450mg/d. (in all honesty I submit that my normal way would have had the # @ 360 or 390, but my thought became, "this time i'm going to fix things up for good").

dr. sassin began w/a consult visit in which he explained he'd be sending me to Stanford sleep in redwood city as part of his evaluation process.

the addending md there, dr. chad ruoff, was professional and therefore neither applauding nor condemning my preexisting 300mg/d Adderall regimen. he remained impartial in the intake, and in the 1st f/u visit. however, dr anstella robinson, a supervisory md who dr ruoff was required to get approval from before he took any action, was NOT. she interrupted me in mid-sentence condemning the treatment option upon my first mention of high doses, and then after a lengthy proicess of inquiry as had her under duress conceded that high doses may be indicated in rarest of cases.

and at the follow up visit she reneged her assertions, this time 'stonewalling' my inquiries.

then I contacted the director's office asking she be replaced. same office condemned my years longstanding high dose treatment.

we then tried taking it to dr sassin in email. he had begun a 3 month vacation we did not have awareness of. evidently he had me at Stanford in good faith. he was not checking email during his vaca. believing ourselves ignored and furious about it we then emailed dr. picker, who misinterpereted our duly p.'ed off state as mania. his reaction was to reply saying 'you do not seem to realize how manic you have become.....I can no longer prescribe amphetamines to you in good conscience"

so there you go. that is how I lost my md, right after Stanford's dr mignot's office-likely mignot himself- told me my preexisting treatment ought never to have been begun, in so many words. the polar opposite of what we needed from them. and had the preexisting treatment been sufficient, we'd no need of Stanford in the first place.

there in nothing i can do. dr picker will have nothing further to do w/me. 'whew' answering that ? takes a lot of keying in by this hunt and peck typist.

*a true gentleman if ever one stood. at one juncture I was on the verge of giving up. nobody in the medical establishment would offer but silence as I treid to determine why Stanford did as it did. my email to him "Stanford disapproves of my rx. if they walked 2 miles in my shoes, one w/ and onw w/o my Adderall, they might be of a different opinion" his 3 word reply gave me strength and very likely saved my life: "good work doug" followed by: JFS, md.

#20 drago

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Posted 09 December 2013 - 06:31 AM

First and foremost: Have you ever seen a neuro-endocrinologist?

I ask this because Type 1 Diabetes means that your body processes everything differently. Sometimes this means your body doesn't process things at the same rate as other people. This might also explain why you feel a 'little ill' as you said. Actually, the accelerated rate of processing (i.e. provigil worked for you day 1 but later became less effective very quickly) seems to be the biggest issue for you. Drug metabolism is a 'thing' -- there's a paper available:

http://www2.niddk.ni...ismDiabetes.pdf

You might benefit from a solid question-and-answer period with a doctor, like your neurologist, about the possibility that your Drug Metabolism is making these treatments fail. It's nearly 6 am (insomnia is kicking in for me, I should be asleep) so I don't have the time now to dig up more research on this, BUT if your Type 1 Diabetes is speeding up your drug metabolism, there are solutions out there (such as certain kinds of extended release tablets) and if you can get a neuroendocrinologist, they might be able to set you up.

Also, as for the missed alarms, there's a thread about waking up that you should check out:

http://forums.narcol...lock#entry26709

Okay, that's the medical stuff, just wanted to write that first.

Secondly, I get what you're saying. I've had those times when I am so epically frustrated - by how other people treat me because they think my disorder isn't real or that it shouldn't effect me; by the doctors because I have to see them so often, and so very often any symptoms I have are ignored or considered unimportant (because they could be just side-effects from my medication regimen), among other things; by how tiring it is sometimes to just get up, eat, and move around, let alone FUNCTION.

It's hard to be happy. It's even harder when you're sick. Adding anything else to that (i.e. having a life-long illness, a rare disorder, etc.) can make it so damn hard!

This sounds lame and stupid (hokey): choose to be happy. Sometimes, the choice isn't there. BUT, there are lots of times when the choice is there. And it seems so... pointless, for lack of a better word, to choose to be happy, because human beings associate work/satisfaction/goals, that kind of thing, with happiness and 'legacy'. This can confuse us into making choices that make us miserable.

For example, sometimes there is just no way I'm gonna get work done. Maybe I'm tired or ill or distracted. But I know it. I'm just NOT gonna get work done. Part of me will want to sit at my desk, FORCING myself to work -- even though it's just not gonna happen. But working makes me feel good -- so I think forcing myself to try to work will make me happy. It doesn't, though, because when I fail to make myself work, I feel even worse, then look over my situation and think, 'I've been sitting here for three hours and have gotten nothing done!' This makes me feel EVEN WORSE!

I did that for a long time, and it took me along time to realize that this was happening. Now, (most of the time!) when I get into such a situation, I get up and go for a walk or put on music or do something that makes me happy/clears my head. Sometimes I return to work and am able to start working again, other times I am not -- but I always feel better! Because (1) I didn't try to force myself to work again and FAIL (failing always feels bad) and (2) I gave myself something to be happy about!

Like I said, it sounds hokey, but maybe there are times like this for you, too -- times that happen a lot, where you can choose something else that will give you a bit of happiness. Happiness is like a wheel. You get it rolling and it tends to accumulate more happiness--even indirectly.

Finally, I 'get' what you mean. When I was frustrated with my situation and hating myself AND feeling trapped, people kept telling me to be patient and gentle with myself. I understand what they mean -- a disorder, by definition, is not something I can control and therefore blaming myself for it was pointless --- however, that advice never alleviated my frustration OR the feeling like I was trapped. The only thing that did was finding these choices -- which wasn't easy -- and changing them -- choosing to be happy, or at least really trying to.

Sorry I don't have a 'hang in there' kinda thing to say -- I've never really understood those. Most of my personal coping has been done with coffee, dogs/cats/pets, and watching too much Doctor Who (or other scifi stuff)... so maybe I'm a bad example.

Hope things are looking up for you,
drago