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Does This Happen To Other People With N?

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#1 supertired

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Posted 02 November 2013 - 06:36 AM

My N seems to get the best of me a lot of times.

 

I posted earlier that Remeron has been helping me, which it has.

 

I'm still tired and it seems to make me so sensitive.  When people ask me simple questions I take it personal.

 

I find it hard to be in relationships.  They are always telling me, at least what my brain interprets, to "quit being lazy" "you're not tired" "just toughen up" "just wake up" "quit sleeping so much"  

 

Does anyone else suffer from this?

 

I just want some peace but N seems to rob me from it.

 

How do other people cope?

 

I need some help.  Where do you find the energy to go out and exercise?  What are ways others with N get energy?

 

Coffee doesn't help and neither has provigil or nuvigil.

 

 



#2 doinmdirndest

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Posted 02 November 2013 - 08:09 AM

have your doctor prescribe amphetamines. they are not a perfect solution but they work. they may not be well tolerated in you but if they are they can make all the difference. 'vigils didn't work for me either. these drugs do. make sure your doctor wathches your bp and prescribes an antihypertensive if amphetamines bring high bp; lisinopril 10 mg/d works for me. you must be careful when at first you experience their effects. as a rule when under them, wait a day before acting upon any new idea you have that seems great. it may not be. such are the effects of this drug which one must acclimate to. took me years. but in the end, they work. and so do I. got to go or i'll be late again.

#3 doinmdirndest

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Posted 02 November 2013 - 08:11 AM

you situation reminds me of my own, before treatment. good luck. hang tough.

#4 supertired

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Posted 02 November 2013 - 08:32 AM

I'm getting treatment and have used amphetamines but the problems persist.  Maybe I am missing something from the medication regime. 

 

I'll investigate more.

 

Luckily,  I don;t live in USA anymore and have good insurance with a foreign company.

 

Thanks for the support doinmdernist



#5 drago

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Posted 03 November 2013 - 09:38 PM

I'm still tired and it seems to make me so sensitive.  When people ask me simple questions I take it personal.

 

I find it hard to be in relationships.  They are always telling me, at least what my brain interprets, to "quit being lazy" "you're not tired" "just toughen up" "just wake up" "quit sleeping so much"  

 

Where do you find the energy to go out and exercise?  What are ways others with N get energy?

 

Coffee doesn't help and neither has provigil or nuvigil.

 

I have issues with this, too. People will act like me being tired is some kind of choice, like I should've just gone to bed earlier or something, and it's one of those things that everyone just... accepts. That being tired is a "choice." Oddly, for people who are tired from certain illnesses, like people going through cancer treatment for example, their tiredness is considered 'valid,' or at least isn't seen as some kind of poor choice behavior. But for me, even people who know I have narcolepsy, they still treat me like I'm doing it on purpose or something. I find this hard to deal with personally because sometimes it can take all my energy to get up and do anything, let alone have people tell me I 'look really tired' and crap like that. Fighting narcolepsy makes it difficult to fight people's perceptions of me.

 

I deal with this two ways: sarcasm and ignoring it.

 

Sarcasm usually comes in retorts. "You should've gone to bed earlier." I reply, "If that would help, then I would have an odd personal problem, NOT a neurological disorder." Or "Wow, going to bed earlier? Never thought of that!"

 

Ignoring it usually comes with the choice to be happy. It's true that there are a lot of people in my life who probably think I'm bad tempered or just plain mean/unfriendly because they've encountered me on a bad day when I was too tired to deal with them, but the other option would be me telling everyone who meets me about my disorder and explaining it to everyone, knowing full well that most people wouldn't understand or wouldn't care or both. So I often choose to ignore it and be happy (not dwell on it, if possible) and only bother with an explanation if it will be fruitful or if it is necessary.

 

When someone close to me is being difficult to deal with (in terms of my disorder), I go for the shock factor. "Do you know what it's like to wake up in the morning, and then be refreshed? Because I don't." Or, "Do you understand the difference between being tired and having a lifelong disorder? Because you don't act like it." Or "Don't talk about things you don't understand" (I only use that one when really necessary).

 

It was difficult for me to start exercising... and when I had a stress fracture in my leg, it was difficult to re-start. I had less energy, less motivation, etc. But, for me, working out (I do karate) helps me sleep through the night, which also gives me better energy. So anything you can do to just make yourself DO IT -- drag yourself and start doing a routine. At first it feels like moving through sludge, but energy is odd like that. The more you expend, the more you have. Or, the more you CAN have... it's like you empty your tank and it fills up a little more each time. I chose Karate because it combines strength training, aerobic exercise, and balance. Also, it's cool -- I enjoy doing it, so it takes much less personal motivation to get out to the dojo.  So, even if it doesn't seem like it, you can do it. I had to start with classes because that was how I got myself to go... I was expected, so I showed up. If I just did a little bit of exercise on my own, I'd find little excuses to stop doing it more and more till I stopped. For some reason, going to classes worked for me. That might not be the case for you -- you might need a workout partner, or a team sport -- but what's important is making yourself start and keep going through that first rough bit... after about a week or two it'll be easier.

 

Provigil did NOT work for me. Amphetamine salts, however, did. So if Provigil/nuvigil isn't working for you, then ask your doctor for a different prescription.

 

Hope you're well,

drago



#6 supertired

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Posted 04 November 2013 - 12:48 AM

Thanks Drago, that helps a lot.

 

I've had similar conversations with people and they just don't understand especially the part of being refreshed.

 

My last gf could sleep 3 hours and feel refreshed and she didn't understand why a nap a 3 hours wouldn't help me.

 

I'll find a physical activity I enjoy that is structured.

 

Thanks again,

 

supertired



#7 9854

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Posted 08 November 2013 - 04:00 PM

Thank you for bringing up this topic. I was diagnosed last year, late in life and it has been a challenge having to explain myself as I discover all the symptoms I have (some since childhood) that are associated with N., plow through various medication trials & the nasty and sometimes mortifying side effects (in addition to various meds for a rare neuromuscular disorder), and face the reality that I am very reluctant to go back to the "about to break into a million pieces" life I had preDX. DRAGO it think your approach is as good as it can get until N leaves the Neanderthal age. Research on N is really in its infancy so we can expect that generalizations about N will continue. I have found that most people are likely to attribute N symptoms to non-medical internal factors such as personality characteristics and minimize or be in denial that the person they've known for years is not just a cranky/eccentric pansy, but has a serious neurological condition. In Psych. It's called the fundamental attribution error (FAE), and is a widespread phenomenon in the USA (just turn on a news station or watch reality TV). Indeed preDX, I attributed many symptoms of N to my own personal weakness, inability to handle stress, etc. Any culture which values individuality is likely to automatically attribute the causes to internal characteristics. Such attributions are exacerbated given a history of high functioning (e.g., advanced degrees, competence in high stress professions). I guess it's just one more "symptom" we must learn to manage. I strongly believe that sleep specialists should address these "social side effects" and perhaps educate patients on the FAE so newly DX PWN are prepared / can plan dignified reactions. Again, Thank you for discussing this, getting heated about it only ends up confirming others' negative perceptions.





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