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jsg1206

Narcolepsy and Exercise (makes me feel worse)

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Anyone else experience this, maybe everyone?   I was "officially" diagnosed back in 2005 after decades of struggle, Textbook Narcolepsy w/o cataplexy, fragmented nocturnal sleep with multiple arousals and full awakenings, MSLT mean sleep latency 2.5minutes "pathologically severe", 2 SOREM episodes.   I have always enjoyed exercise, specifically cycling (roadbike and mountain bikes), but like most with this crappy disease, it is a struggle........ For years, i would exercise in the evenings, but after working all day and having a family (2 kids, now 13 and 14) it was difficult.... this year, I decided that since i am always wide awake @ 4:30am anyway, why not try morning exercise.   I have a bike trainer and treadmill at the house, so it is very convenient; however, I am finding out that unfortunately, the morning exercise makes me feel horrible, the EDS is 2x as bad, moderate depression, even with taking Provigil / Modafinil before or after.  I make sure and eat something light before, drink water, have a cup of coffee, drink water during, eat something after, all the "standard" recommendations, but no help.   So frustrating to hear from all the "experts" that exercise is so great for you, ultimately it is, but when you have this stupid disease, not even exercise helps, just makes me feel worse.   Anyone else?    

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You're not alone. Any kind of extra planned exercise and I'm toast. I'm OK with walking and I do that a lot. Swimming is fun too and yoga is a great workout. But I was planning on painting my outside walls and had to hire someone to do it for me. Climbing up and down the ladder is what killed me. Painting from ground level to about the five foot level is not too bad. But my legs and arms were just shaking as I climbed down the ladder for the last time and that's hazardous.

I also ordered 30 large bags of top soil for my garden and it came on Saturday... still have 12 to go but it's been 90 degrees F. every day and I stop once the sweat starts burning my eyes. Slow and steady wins the race.

Whatever works for you. Life is short. Do what you can, when you can and feeling guilty is unhealthy.

edited to add: Just wondering... I seem to have a problem with my "cooling system" and was wondering if anyone else has the same issue. I seem not to sweat until I've stopped the aerobic part of whatever I'm doing. Then my head immediately gets soaked and the sweat drips off my hair and my eyelashes but I don't seem to sweat anywhere else.  Anyone else experience this?

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I would try a different time of day. Morning exercise makes me feel like garbage too, but evening exercise is pretty alright. I mean there are bad days where it makes things worse, but on the whole it helps me. If you are male, you might wish to get your testtosterone levels checked, as narcolepsy can put the kibosh on your levels. I was on Rx self injected shotsof testosterone for about two years, and it seems it helped jump start me, because three years later, I test on the low end still, but I'm within normal levels, whereas my levels were like a 90 yr old mans  (at age 24 no less) when I started the treatment.

@ferret- I don't sweat much either. Actually my body just does weird stuff with fluid in general. I think its an electrolyte imbalance or something, despite all the gatorade I try to chug. It seems like most of the time I am bloated/puffed up, but parched at the same time, and then maybe once every two weeks, its like my body does a flush, and I lose 4-5 lbs of water weight in a day. I just try to look at the bright side that I don't have to worry about pit stains or BO at work as much :D

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I think different exercises might help, too. I am toast after anything like running or most group classes, but I can do swimming and walking for forever.

I also agree with DeathRabbit that time of day can be a factor. Biggest recommendations would be to just listen to your body, start slow, eat and hydrate well. I recently lost about 50lbs. from just doing laps in the pool. walking more, and cutting some crap out of my diet.

Another option would be to do little things (like parking further away, taking a flight of stairs *slowly and carefully, of course*, etc. Just little changes can make a difference. 

Even saying that, I almost always have to take a nap after any major activity and there are days when it just isn't possible. Just a fact of N.

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thanks for all the replies, great to hear from others that also struggle with this mess............   probably 20years ago, I would swim at the YMCA early in the morning, 5am and I always remember that making me feel horrible all day, just must be the way my body works with Narcolepsy......  so, I am going to try and shift back to evening exercise and see if that helps, I will keep you posted.   Ironically, found this article about the "best time of day to help sleep, depending on your sleep condition"  for me with Narcolepsy, no problem falling asleep, it is the terrible quality and sleep maintenance (4:30am wide awake) that I deal with and based on this study, evenings are better for this sleep issue.   The Best Time to Work Out for a Better Night’s Sleep  http://www.menshealth.com/health/workout-times-for-better-sleep       All the best, stay strong.   

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Yeah, I deffo crash hard on nights I work out, though I have to be careful, because if overdo it too much with cardio, I'll still be overheated and elevated bp when I try to sleep. It's a balancing act for me.

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3 hours ago, jsg1206 said:

for me with Narcolepsy, no problem falling asleep, it is the terrible quality and sleep maintenance (4:30am wide awake)

This thread may be about N and exercise, but that description describes the essence of N for many of us. My question is 'has your sleep issue been treated and how?'.

I am finding that no matter what tricks I employ to make my day go better, the benefit is too often negated by poor sleep in the manner you aptly described. In fact I often, to my frustration, find that the better day I have, the worse the following night's sleep becomes. The fight continues. :(

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HBr, unfortunately I don't have any good answers or strategies to improve the quality of sleep or the feeling of refreshing sleep. Since being diagnosed in 2005, I have gone through: Prescription:  Xyrem, Klonopin, Ambien, Lunesta, Amitriptlyine, Belsomra, Silenor, Estazolam, probably missing a few:  even tried CPAP     OTC Medications / Natural Supplements:  Melatonin, 5-htp, Tylenol PM, Unisom, Sleepy Tea before bed, etc.  Have tried meditation, sleep music, pillows, earplugs, etc.  My conclusion, as my polysonmograpy study showed (29 arousals and full awakenings, minimal slow wave sleep), this is an unfortunate part of this horrible disease and for me, nothing helps, I can sleep 6.5hrs or 10hrs and NEVER wake up refreshed, long long naps, short naps not refreshing either.......   over the past few years, mine has also turned into early morning tension headaches, right around 4/4:30 get bad headaches.    Frustrating to say the least, especially when my wife, shuts her eyes, sleeps solid without moving and wakes happy and refreshed everyday.......      

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Yes, that is pretty much exactly my experience as well. My feelings and past experience suggest much more could be done for this issue. Meanwhile, the Xyrem people get rich.

BTW, I find occasional use of Alka Seltzer (good old aspirin) helps a lot with those headaches, if getting moving doesn't work.

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Here's my opinion on exercise with N. Yes, it may wipe you out but research shows the best time to exercise for increasing deep sleep is about 4 hours before bed. So that wiped out feeling may be a good thing for refreshing sleep.

The other thing is N doesn't make you exercise intolerant. It makes you sleepy, which has a tendency to result in getting out of shape. When you exercise and you're unaccustomed to it, guess what? You feel wiped out after N or no. 

The whole concept of exercise is to push yourself past the norm. That has an immediate effect of making you tired. Your body, however is an adaptation machine. Your muscles and heart strengthen in the days following exercise if you eat a good high protein diet. After weeks/months of consistent exercise, your body gets in better and better condition. It's not an immediate effect. 

Learn to embrace soreness and exhaustion after exercise. It means you pushed yourself and are going to rebuild stronger and more resilient as a result. Exercise can have an enormous benefit on symptoms if you are consistent and push past the immediate effect of fatigue. 

Chronic fatigue syndrome is a supposed disease of exercise intolerance. The recommended therapy is exercise. 

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On 5/24/2017 at 9:32 AM, DeathRabbit said:

Yeah, I deffo crash hard on nights I work out, though I have to be careful, because if overdo it too much with cardio, I'll still be overheated and elevated bp when I try to sleep. It's a balancing act for me.

There's a section on exercise timing in these somewhere. They contain extremely valuable information on sleep hygiene regardless. There's a window before bed exercise helps sleep. Exercise after that window and it has the opposite effect. 

 

session1.pdf

session2.pdf

session3.pdf

session4.pdf

session5.pdf

25keysleeptips.pdf

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Jasonm, completely agree, Narcolepsy does not make you exercise intolerant, just makes it that much harder to get started and stay committed.  In fact, I am a very active "athlete" even at 48, in my 20's and 40's I have participated in triathlons, I previously raced Mountain Bikes, have run numerous 5k's and 10k's, and over the past 8years have been a consistent roadbike enthusiast, cycling 3-4times per week, have done 2 50mile charity rides this year already.   Once again, at least for me, regardless of all the exercise, the Excessive Daytime Sleepiness never goes away and for whatever reason, the morning exercise just makes it significantly worse.   So, too your point, I am going back to evening exercise.    thanks for the input    

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@jsg1206 happy to help! Sometimes simple changes can make a big difference. Unfortunately no one tells us this stuff! Be careful not to exercise too soon before bed as that's bad too. Check out the PDFs I posted if you haven't. They are loaded with helpful information, insomnia or not. I think everyone with N/IH would benefit from them.

@Ferret great link although I wish they'd been more detailed. They mention outdoor light but didn't say when it's important. And it's absolutely most important soon after you wake up for at least 30 minutes without sunglasses. It actually causes profound positive genetic expression changes in the brain overtime. 

I like to go for a leisurely walk in the morning or enjoy some coffee outside in the morning. Feels great, particularly on a brisk morning. It really quite dramatically improved my mood and EDS since I started 4 weeks ago. 

Oh and I'd never suggest exercise or any other lifestyle treatment could eliminate symptoms. But he'll, if you can get a 20% improvement from some lifestyle changes, that's amazingly helpful and healthy. 

Much love,

Jason

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I think I'm a vampire. The sun makes always feels like its an unbearable weight crushing me. Actually I think its a psychological thing, because I think daylight reminds me I shouldn't be feeling like I'm in a perpetual state of 2 AM level of tired.

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@DeathRabbit sun can make you tired, particularly if it's hot. I'd always feel exhausted if I laid out at the pool when I was young for very long. 

I think part of the reason intense exercise or sunlight has this effect is because if you overheat, your body tries to shut down your metabolism as much as possible to reduce body temperature. A hot shower will make me sleepy in the morning too.

I've been doing a 30 minute morning walk for about 4 weeks now. I feel so much better today than when I started, I can't even describe it. It's absolutely profound. I haven't lost much weight so that's not it. 

Give it a try for a couple weeks and see how you feel. Supposedly early morning bright light dramatically increases luteinizing hormone concentrations in men. That's a huge deal since that hormone is a major contributor to testosterone, which in turn upregulates orexin receptors. 

If you burst into flames, disregard my suggestion lol. 

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I will try. Mornings are satan tho.

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10 hours ago, Jasonm said:

If you burst into flames, disregard my suggestion lol. 

@DeathRabbit, if you burst into flames... take a selfie before you turn into a pile of ash. Documented proof for human spontaneous combustion! :lol:

spontaneous-human-combustion-853_200px.jpg?w=620

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23 hours ago, DeathRabbit said:

I will try. Mornings are satan tho.

Yeah I know! Trust me, it was not something I did for fun lol. My old system was take medication, lay on the couch for an hour and wait for it to kick in for that reason. 

But after a week or two, the improvement was so good, I get annoyed if I can't walk in the morning now. Same dose of medication provides much more energy. It gets way easier over time. I'm much happier too. 

Nothing to lose at any rate. I need someone else to be a guinea pig and see if it's just me or possibly beneficial to a lot of us. 

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