Wow I totally agree with Reply #7. Are you sure you have Narcolepsy??
You sound too good to be true to have Narcolepsy. I have trouble getting through my day let alone rock climbing, raquetball, etc etc. What medication do you take? I need some.

Exercise absolutely helps! The only thing is you cannot work and exercise. At least I couldn\'t. And my doctor kept saying I needed to exercise for my heart.

It seems that when you have narcolepsy and you work, that is all you can do. Work. Spend the weekend in recovery. Work. Recover.

Ive been active for years i grow up playing sports. I dont think exercising helps but i do think that its good to workout for a few mins. Just because we have N do mean stop living. if you just sit around all the time your going to start eatting a lot being more depressed. I think working out just helps with everyday stress.

As long as I keep moving, I can stay awake. Well, usually. I did fall asleep on a treadmill years ago.

Exercise can give you more energy if you icrease it over time in very small increments. Eventually you will feel that the exercise, although it makes you tired, energizes you during your waking hours.

I have been working out at my YMCA for the last few months. Just this week, I felt a big difference in my body\'s response. Usually during the first five minutes of 3.5mph walking, my heart rate jumps around and doubles. So I am at 86, then 167, then 90. It\'s crazy. One day this week I was like a normal person. My heart rate made sense and I jogged for a few minutes.

In the morning I walk my dogs with my husband. He used to have to go home sometimes and get the car, come back and pick me up. Now I don\'t feel like I am going to pass out until about a block from home. The trick is to keep trying no matter how awful it makes you feel.

Oh I meant to say, no, I don\'t think exercise will take care of your narcolepsy. My doctor, however, says that if you take 5 twenty minute timed naps many people do as well as with stimulant medications.

Hello again everybody,

I am two case studies into writing my eBook for people who have just been diagnosed with narcolepsy. Both Cheri and Marilyn should be able to attest to the quality of the work I am doing. If you would like to be a part of this, please respond to this message with your email address. I would be very happy to include you in this work.

Also, right now I am looking for men who have narcolepsy, so if this you, you will be helping a great deal.

Thanks again,
-Ted Bendixson

everyone has good days and bad days and everyone has different degrees of how N affects them.

some days exercise is the end of me. most days it is my life - it is the thing i love most- it is the only time when i feel 100% alert and 'with it' and like im normal again.

its proven that exercise makes you feel happy - if not biologically for long - at least psychologically. it also makes me sleep like a log if i exercise right before bed time.

Well....I tried this about 5 months ago. Now, everyone is different, but, if you are at all like me...I strongly DO NOT RECCOMMEND THIS.
Like I said, everyone is different, but, here was my experience. I pretty much got to thinking, I'm 33, I shouldn't feel this way, maybe if I eat better, get more exercise, I can do this in a more natural way. I really do not like being on meds, despite teh fact that it has drastically increased my quality of living being on them. Anyhow, I am on adderrall and wellbutrin as my combo and had been for almost two years. I wheaned myself off both over the course of about 5ish weeks *(I later read, you should whean over the course of like 5months, but....well, it was too late, I did it in aboug 5ish weeks. Anyhow, I was useless...absolutely useless. Not only did I have horribly interrupted sleep at night, but did not have the benefits of my meds during the day to counteract that. I am a stay at home mom of three children, a 4 year old and two year old twins and the energy level needed (as I'm sure you know from being home) to keep up with them both physically, mentally is pretty high.
I was a basket case of exhaustion, calling my husband mid day asking him to come home, totally retreating from any public events, playdates etc as my body was not only in withdrawl still, but the fatigue was through the roof. My mistake- I did this all unbeknownst to my dr...who later was shocked I did this.
Here is what I will say for exercise, diet etc. Having a steady routine (I walk 3 mornings per week and go to the gym 2-3 x each week-body pump classes, cardio etc.) has helped me as it would anyone narcolepsy or not. So, the moral of my story is....NO I do not reccommend just diet and exercise, but yes....given that you are human being, exercise and nutrition can only help matters, thats just a fact. I agree with Karen S., the endorphins help me alot. I think its a matter of finding your good time of day, getting in the exercise, and everything in moderation. It is hard for spouses to totally understand it, it was hard for me to understand it before being diagnosed, I couldn't for the life of me figure out why i was so tired. I went from Dr. to Dr. who kept giving me just antidepressants, and I coul dnot explain enough to them, i am not tired because I am depressed... I AM DEPRESSED BECAUSE I AM TIRED ALL DAY LONG! Not sure how it is for you, but when I get that sudden urge to sleep (and I do not have cataplexy, just strong urges that seem to weaken me in a matter of a minute to the point where I would give anything to just nap), I feel like a 100 lb person just jumped on my shoulders and I'm walking through mud. Most people don't truly understand that feeling if they don't have narcolepsy, or CF or even fibromyalgia. I would have your hubby read some of these posts (not this exact thread, but some of the support ones) to help him get an idea of what you go through and how complex and individualized narcolepsy can be. sorry to be so long winded, your post just really spoke to me and I totally understand where you are coming from.
Feel free to reply or email anytime if you want.:)

I was diagnosed about 4 years ago....if you need any help, feel free to reply.:)

I am a little concerned by some of the responses. I have narcolepsy and I exercise every morning before work - I swim 2 km 4-5 mornings a week. Exercise does help narcolepsy, not because of endorphins, but because it helps with the regulation of serotonin (and other neurotransmitters). However, I do not believe that exercise is a substitute for medication, there is no evidence to support that. Also, the timing of the exercise is important, it shouldnt be in the evening as this will have a negative effect on sleep.

Having no energy does not mean that exercise would make it worse (as some people have responded). It is all about timing and the type of exercise you undertake. As a point of information, there is a significant amount of evidence that those with severe chornic fatigue syndrome and fibromyalgia see a marked improvement in their symptoms when they take up some form of exercise (at the right time, right type etc). I hope this helps, meant to be positive.

Thanks TJ and Neal...nice to see some more folks posting here, And thanks to all the regulars as well!

Okay Neal help me out here. I liked your response it makes sense, but here is my problem. I have to be at work at 7am, I get up at 5:30 am(can not get up at 5 due to Xyrem not worn off yet)it takes me from 5:30 to 6:45 to feed the dogs, take them out, take a shower, dry my hair,and get dressed, to be able to leave on time. I don't wear makeup to work because of my shaking I simply do not have the time it takes to put it on. I get off at 4, go home take dogs out, sit and chill till 5:30, start cleaning one room(do one a day) by the time I am finished that my heart rate is around 101-112, fix something for dinner I have to eat by 6:45 at latest to be able to take my Xyrem on time,that leaves me about 1.5 hrs before bed, I am usually wiped out by then, and spend that time on my computer. Where do I fit in exercise???? I am serious, I am not being a smart a__ here.
Cheri

Exercise does help a lot with my narcolepsy. Getting started is the hard part but once I get going I'm good for awhile. My neurologist actually prefers the exercising to taking medicine. He gives me a really low dose of Ritalin 3 times a day and tells me to get up and exercise when I feel sleepy. I think he's a nut, when you hit that sleep attack stage the last thing you want to do is get up and run laps.

I wouldn't recommend swapping your pills for exercise. I think it takes both for people with narcolepsy to be awake and energized like normal.

Hi Cheri

Thanks for the reply. I think you do plenty of exercise in what you have said. Your day is very full and your starting time to your day very early. I get up at 5.55am, and am in the pool by 6.45am, and away to work just after 8am. So I am lucky to be able to do that because my work starts at 9am. I couldnt do this when I worked on the wards in the hospital.

In the UK the Disability and Discrimination act requires your employer by law to make reasonable adjustment to enable you to work and live with your disability. If I still worked on the wards they would have to amend my working hours to suit my narcolepsy and its management - and exercise is part of that management. But I guess you have to live in a country where the law protects people in this way - people cant swap and choose jobs to suit and you have to meet the demands of your life. I dont know if that helps any more, I just know from all the research I did into narcolepsy (neurosciences is my field) that exercise helps - the practicalities of getting it in there is a little more complex. I just think it is really important for people not to confuse fatigue and weakness, and to be aware that a lack of exercise exacerbates fatigue.

please call me about your excersize question. I am the mother of a boy diagnosed at 12.
My name is Rita and I would really like to talk to you about this. We are in Montana
406-321-4216