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#21 malachi777

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Posted 19 June 2009 - 03:39 PM

QUOTE (sunrisemoon @ Jun 19 2009, 08:50 AM) <{POST_SNAPBACK}>
So, you're saying you're not male? laugh.gif laugh.gif


I already knew I was male...In fact, the doctor told me that I was so masculine that he had to put me on estrogen shots to get my hormones leveled out. lol


#22 malachi777

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Posted 20 June 2009 - 05:03 PM

QUOTE (jenji @ Jun 19 2009, 04:15 PM) <{POST_SNAPBACK}>
"The idiots at the facility mixed up my paperwork"

of COURSE they did.

jenji



Jenji, shhhhhhhhhhhh.... Don't tell anyone.

#23 ragtimegal

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Posted 30 June 2009 - 11:59 AM

Howdy! I'm so happy to have found you folks. I thought I was the only one for a long time. I managed to retire from UPS after 26 years, still with full-blown "N". It was the perfect job for me because I was always on my feet, never sitting down, and interactive. I thought the symptoms would improve with age, but it's gotten worse. I've tried a wide array of meds, but in the last year have given up playing in a symphony because I never know how I'm going to feel on rehearsal night. I find myself becoming more of a hermit now that I can finally sleep whenever I feel like it. I hate myself for being so groggy, lazy. I tell myself that I can persevere. Each day I promise myself to complete a small list of chores, but always end up letting myself down and feeling a lot of self-loathing. I hate having "N". Don't tell anyone that you have it. They will never trust you and think you're psychosomatic (hypochondriac). I had 26 years at UPS without a car accident or even a fender-bender. I believe that people with "N" are hyper-vigilant while engaged in certain activities. I managed to raise 3 fine kids, 2 foster children, work full-time and play in a symphony as well as Ragtime festivals, mostly without meds. Last weekend, I babysat my grandkids and not wanting to fall asleep, spent every moment on my feet, fighting sleep. It was a minute-by-minute miserable ordeal simply because I couldn't sleep whenever the need occured. I live a half-life. No one understands. My neurologist told me I had to take the meds, getting the prescription filled is another ordeal, not to mention the way the pharmacists looks at you, like you're some kind of drug-seeking meth addict. I have to drive to another city to pick up a hard copy of the prescription, take it to my pharmacy, then wait while the pharmacist calls the doc to verify, then told to come back days later after he gets approval. I prefer not to take the meds simply because of the embarassment I have to go through to get them. Besides, nothing works! I don't want to be wired, I don't want to be asleep. What works? Are there any new methods, medications?
Thanks for listening.

#24 Lais02

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Posted 30 June 2009 - 07:57 PM

QUOTE (ragtimegal @ Jun 30 2009, 09:59 AM) <{POST_SNAPBACK}>
Howdy! I'm so happy to have found you folks. I thought I was the only one for a long time. I managed to retire from UPS after 26 years, still with full-blown "N". It was the perfect job for me because I was always on my feet, never sitting down, and interactive. I thought the symptoms would improve with age, but it's gotten worse. I've tried a wide array of meds, but in the last year have given up playing in a symphony because I never know how I'm going to feel on rehearsal night. I find myself becoming more of a hermit now that I can finally sleep whenever I feel like it. I hate myself for being so groggy, lazy. I tell myself that I can persevere. Each day I promise myself to complete a small list of chores, but always end up letting myself down and feeling a lot of self-loathing. I hate having "N". Don't tell anyone that you have it. They will never trust you and think you're psychosomatic (hypochondriac). I had 26 years at UPS without a car accident or even a fender-bender. I believe that people with "N" are hyper-vigilant while engaged in certain activities. I managed to raise 3 fine kids, 2 foster children, work full-time and play in a symphony as well as Ragtime festivals, mostly without meds. Last weekend, I babysat my grandkids and not wanting to fall asleep, spent every moment on my feet, fighting sleep. It was a minute-by-minute miserable ordeal simply because I couldn't sleep whenever the need occured. I live a half-life. No one understands. My neurologist told me I had to take the meds, getting the prescription filled is another ordeal, not to mention the way the pharmacists looks at you, like you're some kind of drug-seeking meth addict. I have to drive to another city to pick up a hard copy of the prescription, take it to my pharmacy, then wait while the pharmacist calls the doc to verify, then told to come back days later after he gets approval. I prefer not to take the meds simply because of the embarassment I have to go through to get them. Besides, nothing works! I don't want to be wired, I don't want to be asleep. What works? Are there any new methods, medications?
Thanks for listening.


Welcome to NN! I think you'll be able to find some other methods here. Sounds like you've done very well so far, and you should be extremely proud of yourself for that!


#25 malachi777

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Posted 01 July 2009 - 07:36 PM

Howdy! I'm so happy to have found you folks. I thought I was the only one for a long time. I managed to retire from UPS after 26 years, still with full-blown "N". It was the perfect job for me because I was always on my feet, never sitting down, and interactive. I thought the symptoms would improve with age, but it's gotten worse. I've tried a wide array of meds, but in the last year have given up playing in a symphony because I never know how I'm going to feel on rehearsal night. I find myself becoming more of a hermit now that I can finally sleep whenever I feel like it. I hate myself for being so groggy, lazy. I tell myself that I can persevere. Each day I promise myself to complete a small list of chores, but always end up letting myself down and feeling a lot of self-loathing. I hate having "N". Don't tell anyone that you have it. They will never trust you and think you're psychosomatic (hypochondriac). I had 26 years at UPS without a car accident or even a fender-bender. I believe that people with "N" are hyper-vigilant while engaged in certain activities. I managed to raise 3 fine kids, 2 foster children, work full-time and play in a symphony as well as Ragtime festivals, mostly without meds. Last weekend, I babysat my grandkids and not wanting to fall asleep, spent every moment on my feet, fighting sleep. It was a minute-by-minute miserable ordeal simply because I couldn't sleep whenever the need occured. I live a half-life. No one understands. My neurologist told me I had to take the meds, getting the prescription filled is another ordeal, not to mention the way the pharmacists looks at you, like you're some kind of drug-seeking meth addict. I have to drive to another city to pick up a hard copy of the prescription, take it to my pharmacy, then wait while the pharmacist calls the doc to verify, then told to come back days later after he gets approval. I prefer not to take the meds simply because of the embarassment I have to go through to get them. Besides, nothing works! I don't want to be wired, I don't want to be asleep. What works? Are there any new methods, medications?


Thanks for listening.


You should be very proud of yourself working that long with no accidents. I too am a courier and was just invited to the NTDA Competition in Pittsburg for being one of the safest drivers in our company. I work for your only competition. My boss asked me how I have refrained from having accidents with my condition and I told her because I know my job and condition depends on it. If I have one accident, I know my license will be pulled and I will lose my job even if narcolepsy is not the cause. Mind you, I work 5 or 6 hours a day because I have restrictions. You my friend are an inspiration to me and you show me that I CAN'T, is not an option.

As far as dx, Provigil is extremely expensive but it did not help me. Speed is another drug, but I cannot take it due to tachycardia. Prozac helped me with cataplexy symptoms but not so much for narcolepsy. The only thing I can recommend is a nap every single day. You will feel so much better with sleep.

#26 Mike B

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Posted 03 July 2009 - 12:47 PM

Where can I find the latest news story on this autoimmune thing? I'm new here and this is the first I've heard of it.

#27 malachi777

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Posted 03 July 2009 - 02:33 PM

Where can I find the latest news story on this autoimmune thing? I'm new here and this is the first I've heard of it.


If you do a google search on "narcolepsy and immune system", there are numerous reports on it. The are lots of recent information on it too. Good Luck. :D

#28 Mike M

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Posted 03 July 2009 - 10:07 PM

Where can I find the latest news story on this autoimmune thing? I'm new here and this is the first I've heard of it.


Another thing to do is go directly to Stanford's Center for Narcolepsy. Dr. Mignot who made the discovery runs the center. Good luck and I hope this helps you.

#29 Mike B

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Posted 04 July 2009 - 03:46 AM

If you do a google search on "narcolepsy and immune system", there are numerous reports on it. The are lots of recent information on it too. Good Luck. :D



#30 Mike B

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Posted 04 July 2009 - 03:47 AM

If you do a google search on "narcolepsy and immune system", there are numerous reports on it. The are lots of recent information on it too. Good Luck. :D



#31 Mike B

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Posted 04 July 2009 - 03:48 AM

Much thanks. That was a huge help.