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Exercise And Narcolepsy


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#1 Mee

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Posted 13 December 2009 - 10:18 PM

I'm wondering how much PWN are exercising and how their exercise routines have fluctuated since being diagnosed with N and how it effects their N?

I've never been much of an athelete but I've always been naturally slim (on the healthy side) with a good appetite. After being diagnosed with N, my body didn't change. A few years after being diagnosed, I started a serious workout (3-4 hours/day and 5 days/week) for a 2 months. I absolutely would not recommend it to anyone since it just asking for injury. I didn't question my trainer because I trusted that he knew what he was doing and I didn't but looking back now I should have. In any case, after 2 months I never felt better! I was toned and strong. And I felt my EDS improved. I went from 20 mg Ritalin SR and 20 mg Ritalin (and still struggling to stay awake) to taking 20 mg Ritalin SR and feeling pretty ok for most of the day.

I could never go back to that routine but anytime I could get myself to workout I really felt a lot better. And now I'm really at the lowest point of my health and highest in my weight. Holiday season sucks and winter makes me want to hibernate and grow my "winter coat" so its a real mental battle for me to get to the gym. Have you ever fallen asleep on the treadmill? Yep, if I get bored thats me... I keep telling myself that I need to break this bad cycle. So I was wondering how other PWN exercise, what they do, and how it effects their N?

-Mee

#2 sleepybee

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Posted 14 December 2009 - 09:51 AM

Hi Mee:

Bottom line for me: I feel better when I exercise. Reality: it's very hard to do on a regular basis.

Boredom is a huge trigger for me as well. Plus I have rheumatoid arthritis, so I can't just go outside and run around for fear my knees will get angry. I will work out on the elliptical machine, and I also have some DVD/videos for exercise that I use in rotation to keep the interest going.

If you have to get on a treadmill or other machine, is it possible you can find a gym that has TVs either in the room or (even better) individual screen on the machine itself? This helps me because it gives me something to concentrate on so I don't get hypnotized by the timer and the repetitive sound of my footsteps. I try to schedule workouts around times that I know something I like will be on television--it's a double bonus, because 1) I'm more likely to get there on time so I don't miss the show, and 2) once there, watching the show makes the exercise less "painful". If it's an option, getting an ipod Nano where you can upload a favorite movie or TV show might also help because then you wouldn't be stuck trying to find a time you can work out that matches with a show you might like.

I really have to do my workouts first thing in the morning. It's the only time that I can be relatively sure that I'll get there and do it. By the time afternoon rolls around, there are too many excuses (work, errands, dinner), and with those on top of my fatigue, it's just too easy to say "forget it".

I do stress a bit about working out in the morning and getting to work on time--I"m lucky enough to be in a place where I can be flexible, but sometimes I still do get nervous.

Having a rigid schedule really helps, but a schedule is only as good as my willingness to follow it each day. If I fall off the schedule, things don't happen and I get more tired, and the fatigue just feeds on itself. Winter is tough because it's dark longer and your body is telling you to curl up under a blanket and not move. But, if you can get the momentum going again, you won't be sorry.

Some other options are: is there a sport or activity you like doing, or have always wanted to learn, that you could take lessons in? I used to do rock climbing lessons at a gym and it was a great workout, but I never felt like I was working out because I was concentrating on building the skill. It sounds like working with a trainer in the past was mostly positive (though perhaps not at such an intense rate). Maybe paying for a trainer or lessons in something will help motivate you to get out the door? When it's only ourselves, it's easy to put it off, promise to do it tomorrow, etc. But, if you have to meet someone at a specific time to do something you've already paid them for, it becomes much easier to actually do it, because you're accountable AND you want to get your money's worth.

These are just my ideas. Whatever you decide, know that I'm fighting the same battle too!

#3 Mirianda

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Posted 08 January 2010 - 09:46 AM

Well I will start to train again but for me time is the issue! I leave home at 7am go to work come back at 6pm I still haven't had my supper yet! So after that I still have to do some cleaning, but anyways. What I want to start doing is that I have my good bike (a beautifull Devinci) that I put on a stand. So I can place the stand in front of the TV (and I live in an appartment so space is scarce here) when I get home. I did gain a couple of pounds but I want to keep them till the end of the winter because I had lost weight before winter started but I was so freezing that I didn't watch what I ate during the holidays and gained some back but I'm not shivering everytime I got out right now so hahaha I don't know what to do :P

#4 Mee

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Posted 18 January 2010 - 11:08 PM

I think I have found the answer!!! The Wii Fit plus!!! I got for Xmas and I loveeeeeeeeeeee it!

I play in the privacy of my own home and its actually fun. The stupid counter thing actually gives me attitude when I skip days! Grrr... I am addicted to the obstacle course game and snowball fight game (get those snowman!).

I highly recommend this for all!

-Mee

Well I will start to train again but for me time is the issue! I leave home at 7am go to work come back at 6pm I still haven't had my supper yet! So after that I still have to do some cleaning, but anyways. What I want to start doing is that I have my good bike (a beautifull Devinci) that I put on a stand. So I can place the stand in front of the TV (and I live in an appartment so space is scarce here) when I get home. I did gain a couple of pounds but I want to keep them till the end of the winter because I had lost weight before winter started but I was so freezing that I didn't watch what I ate during the holidays and gained some back but I'm not shivering everytime I got out right now so hahaha I don't know what to do Posted Image



#5 Day Dream Believer

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Posted 19 January 2010 - 01:32 AM

Trick that worked: Although I have fallen off the fitness wagon of late....when I was going faithfully I used to trick myself. I would set the alarm early (which meant that I absolutely had to go to bed early not like now it is 11:30 pm) and drag myself out of bed. Then I would tell myself, you only have to put on your sweats and get into your car. If you don't feel like going after that you don't have too. Needless to say that once I got dressed and in my car to go I was off. I don't know why this worked for me. I guess it could be the fact that I still had an out if I needed it and all I had to commit to was getting dressed and going to my car.

#6 Lisa Kato

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Posted 31 March 2010 - 12:14 AM

Trick that worked: Although I have fallen off the fitness wagon of late....when I was going faithfully I used to trick myself. I would set the alarm early (which meant that I absolutely had to go to bed early not like now it is 11:30 pm) and drag myself out of bed. Then I would tell myself, you only have to put on your sweats and get into your car. If you don't feel like going after that you don't have too. Needless to say that once I got dressed and in my car to go I was off. I don't know why this worked for me. I guess it could be the fact that I still had an out if I needed it and all I had to commit to was getting dressed and going to my car.


Ya I sleep in my work out clothes so I have less of an excuse. After dropping off the kids at school I go to the gym and tell myself even if I only go sit in the spa... However that would mean changing into my swim suit. Crap better take a nap in my car. Wake up work out all done.

#7 mersaydes

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Posted 14 April 2012 - 02:13 PM

Even since I got narcolepsy I suddenly became inactive. Like on the weekends I usually stay in bed until 4 or 5 in the evening and I never go to resess anymore. Instead I just stay at studyhall.

#8 Archer

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Posted 16 January 2013 - 12:23 PM

I currently go to a "gym" that only does one on one exercising. Every work out is with a instructor, all have at least a bachelor's level, many have a experts, so they all have an knowing of the system. I beginning going so that I could confirm to my physicians that a sedentary lifestyle is not the cause of my tiredness.



#9 MissRae

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Posted 19 January 2013 - 02:09 PM

I don't mind working out; it makes me feel great, and I find that it's a great "me time" thing, since I'm so extroverted, and hate doing anything else alone. However, I will get in a good routine for a while then get really, really sick. Before I found I had N I was in a routine for a while of going to a gym 3 - 4 days a week, and working out for 1 or 2 hours. Nothing crazy, just walking on the track, exercise bike, treadmill, maybe some weights, then back to the track. I was getting into better shape and felt great... but then I got a sinus infection, which (naturally for me) lead to a respiratory infection. Quickly, it became Pneumonia and though the whole thing I spent on and off 2 weeks missing a day or two of work, then a full week out in bed with the Pneumonia. After I got better I started at the gym (the older people there missed me. :) ) and started my routine again eventually I got sick again and had to stop. Then my gym membership ran out and I got really busy working over the summer. 

 

Since then, I found it's been really hard to work out. I'll do part of a Pilates video (which used to be no big deal to me) and then get super tired. Plus, when I started with my Nuvigil my apatite dropped and I went from eating 3 full meals, plus snacks a day to maybe 1 full meal and a few snacks a day (when I remind myself to eat.) It got to a point where, with out exercising, I lost 30 lbs in 5 or so months (huge for me, I've never been that successful at weight loss,) and my doctor told me to not work out, and watch my weight or we would have to switch meds. Well I've been able to maintain my weight fairly well now, but I'm afraid to start working out. :/



#10 salomeforever

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Posted 15 April 2013 - 05:04 PM

I've always been painfully non-athletic, but I liked going to the gym once in a while in college, when I could use the facilities for free. Now I can't really afford to pay for a gym membership, but I really like doing the original Jane Fonda workout tape, you can find it on Youtube. It's only 30 minutes, and it's a full body workout for which you don't need any special equipment.  I can't always keep up, but it's fun and by the time I'm bored or tiring out with an exercise it switches to the next.  I also really like using the Yoga Studio app for iPhone.  I think it was $2.99 or less than that.  It lets you mix your own sets of favorite poses or just choose from pre-made classes.  The videos are nice looking and easy to follow. 



#11 NetiNeti

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Posted 03 May 2013 - 11:56 AM

I work out 4-5 times a week. Usually in the afternoon. It has been shown that working out in the afternoon hightens the body temperature, which promotes slow wave sleep. When I go a few days without working out I do not feel the same. Usually I feel MORE tired.



#12 CreativeConfusion

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Posted 02 September 2013 - 01:48 AM

Ok, I feel like I need to share this because I'm pretty sure that I've found the answer! I had been a dancer most of my life, so I was always very athletic, tall, muscled, semi-toned (I'm built very solid, though slim, and I'm stronger than I look. I'm always afraid I'm going to break some of my friends when I hug them.), and not caring a bit about my weight, but knowing that it usually sat around 140-145lbs. I also had a very healthy appetite, loved sweets, but wouldn't overeat if I wasn't hungry either. The summer before my N diagnosis, I got really serious about doing zumba and shooting archery every day just because it was so much fun! That summer I dropped to 135lbs and I swear that was the skinniest I have ever been or ever will be again. Not long after that was when my narcolepsy decided to inform me of its existence, and I suddenly couldn't stay awake to save my life and taking a nap during the day went from a luxury to a necessity. During the process of my diagnosis my doc had me try a sleep med that made me balloon. I gained 20lbs in a month, and since I couldn't stay awake, much less get out of bed and exercise, I kept gaining weight after they took me off the med, and eventually landed on 164lbs. But there was hope waiting around the corner! I started watching my calorie intake, and that helped, but there was another answer to my exercise dilemma, and that answer was... *drum roll....* a hula hoop. You read that right. A hula hoop. A standard hula hoop with 5-8 oz of water in it gives it enough weight that you have to actually work to keep it up, and you don't even realize how hard you're working until you stop and realize, "Oh wow. I'm actually sweating! And my abs are vaguely sore! How did that happen!?" Is it boring? Of course it is! So what do I do? I turn on the tv! I have no internal clock anymore, so I don't notice time passing. If I put in a movie, I can hoop through an entire movie without too much strain. I've lost 12lbs doing this! No joke, I really have! It works!



#13 ironhands

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Posted 04 September 2013 - 09:50 AM

As far as regular excersize, until about a year ago, I was primarily doing lifts.  That being lifting my beer from the table, to my mouth, and back down, repeatedly.  Currently I bike to work, so about one hour of biking per day, around 8km (5-6 miles?) 

 

Lately it's been more exhausting and I'm worried that I'm not paying enough attention to the cars nearby.  I ride on the sidewalk - I don't have the focus, or speed, to stay on the road yet.  I rarely, if ever, see anyone on the sidewalks in this area, maybe 1 person a day, they're pretty empty.



#14 octet

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Posted 06 November 2013 - 03:17 AM

I do a lot of road cycling, and I went down from 165 to 150lbs on Modafinil (26m, 5'9"), which helped. During the summer I average 150-200 miles per week, and I have now started racing. At an extreme, I have cycled for 7+ hours and gone through 5000 calories in one ride, but typically I will cover 40 miles in two hours. I find it really useful to be part of a club, and Strava is also a great motivator. Cycling is notable in that it's a near-zero impact sport, when done properly, so it's great for developing cardiovascular fitness. In the winter I try and get a few hours on my rollers, and 10ish miles of cross-country running each week. I have probably doubled the amount of exercise that I do since being diagnosed, and the weight-loss and performance increase has had a positive reinforcing effect.

I find a really marked difference to my appetite between being on and off Modafinil. To begin with, I found myself forgetting to eat before big rides, and ended up once or twice grinding to a complete halt when I totally ran out of blood-sugar. Nowadays, I force-feed myself complex carbohydrates in advance, and haven't had any more problems. Generally, my diet contains a lot of bread, milk and coffee, and very little (processed simple) sugars. Aside from sports, I only tend to eat when I get hungry. I know that this probably isn't the typical experience of a person with narcolepsy, but there is a broad range amongst people, which includes professional sportsmen like Franck Bouyer (a cyclist).



#15 sk8aplexy

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Posted 14 November 2013 - 01:00 PM

Recently when I've had the chance to play ice hockey, which is usually from 9:45-10:45pm once or twice a week, afterwards I experience severe insomnia and sometimes for a series of nights.

My sleep schedule tends to be, laying down between 11pm and 1am.  After these games of hockey, I won't feel any real tiredness (beyond being physically exhausted) until much much later (or earlier perhaps I should say, as it like 3 or 4am); then whenever I do lay down; I'll just sort of lay there, mostly awake, all night. 

On a typical night I tend do to have a at least a few, frequent, but brief awakenings.  But this is like, I'm basically wide awake, comfortable yet not sleeping, I do slip in and out of a dream or two throughout the night (usually more towards once the sun is up) but I'm so awake during the dreams I am literally thinking and participating in them in an awake manner (if that makes any sense?). 

As for the dream thing, some of that is what I experience regularly, yet being near entirely awake as they go, on and on (not in a brief manner), is not so typical experience.

 

Did an internet search of 'exercise induced insomnia' and some seem to speak of diet, or specifically glycogen and/or the liver?

It seems odd in my mind that it is sometimes, a few nights rather than just the night, too...

 

I need the exercise, but I also need the sleep, and this time/game is the only opportunity that I have for hockey; being I live in a midwest non-hockey friendly city (rink only open late Oct. through early/mid Feb. with very limited adult hockey openings).   Argh, it's frustrating.

 

Any thoughts, comments, tips, similar experiences?



#16 engineerman9337

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Posted 17 November 2013 - 10:49 PM

...you asked...the experiences of sleepnessness sound quite familiar. For me, when this happens it's a consequence of late dosing, too high a dose, caffeine, another form of chemical stimulant e.g. amino acid such as Taurine. I always keep diphenhydramine - 25 mg on hand and i take 2, when I have to dose for something late at night that interferes with sleep. If I augment that with 400 mg of Ibuprophen, I can sometimes sleep 3-4 hours without waking up. Of course I drink like 16-24 oz of water and have a slice of bread or a couple of crackers. I am not recommending this for anyone. I've been fighting this monster since 1960 and I've learned a lot about how my body reacts to things. FYI, I take a relatively low dose of meds 10mg dextroamphetamine tablets 3 x per day.

#17 carrieannburns

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Posted 17 April 2014 - 06:35 AM

You should check out some of these Facebook groups for advice on how to keep it off, or change your diet / lifestyle to possibly become more healthier and there are some people with advice who have Narcolepsy and are trying to keep weight off.. Or for exercising, eating good and going gluten free.

 

 

Rockin Bods For Pwn:

https://www.facebook...30270840384216/

 

Gluten Free Pwn:

https://www.facebook...01209643334907/

 

Lifestlye Change For The Sake Of Narcolepsy:

https://www.facebook...36055773234497/