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#1 megslo

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Posted 14 November 2012 - 04:21 PM

Daytime naps don't help. I wake up feeling rested, but it only lasts for about 10 minutes.
Nuvigil didn't have any effect on my sleepiness.
Ritalin 20mg, 4x/day stopped working.
Adderall 20mg, 4x/day is what I'm taking now. I've had to pull over on 2 occassions today to take a nap and have taken 2 naps in my chair at work. This 'falling asleep' at work is going to get me fired pretty quick here.
Has anyone had any luck with other treatments? I'm really hoping there is something out there - I'd rather not fall asleep throughout the rest of my life.


#2 Hank

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Posted 14 November 2012 - 07:09 PM

Daytime naps don't help. I wake up feeling rested, but it only lasts for about 10 minutes.
Nuvigil didn't have any effect on my sleepiness.
Ritalin 20mg, 4x/day stopped working.
Adderall 20mg, 4x/day is what I'm taking now. I've had to pull over on 2 occassions today to take a nap and have taken 2 naps in my chair at work. This 'falling asleep' at work is going to get me fired pretty quick here.
Has anyone had any luck with other treatments? I'm really hoping there is something out there - I'd rather not fall asleep throughout the rest of my life.


Do you have Narcolepsy or Hypersomnia? If you have Narcolepsy, do you also experience cataplexy?

Xyrem has helped me a lot, but it took a while to get there. It is primarily for Cataplexy, but can help a lot with EDS.

I take Adderall- it has helped but sometimes it just felt like only my body was awake. I went to Adderall and Provigil for a while. There does not seem to be a perfect stimulant.

Diet changes can help- like lean protein and no carbs or sugar during the day. Exercise can help a lot also, if you are able.

Others will have good comments to make. EDS is hard to live with, regardless of your diagnosis. Have you figured out what makes EDS worse for you? When I eliminated things that made it worse, like carbs, heavy meals and cold beverages, it got easier for me to manage. EDS didn't disappear, but the crashes turned into more manageable dips that I could live with.

Have you discussed reasonable accommodation for naps with your employer? That is not always an option, but it could protect you from discipline.

#3 trying_to_cope

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Posted 15 November 2012 - 01:17 PM

Do you have Narcolepsy or Hypersomnia? If you have Narcolepsy, do you also experience cataplexy?

Xyrem has helped me a lot, but it took a while to get there. It is primarily for Cataplexy, but can help a lot with EDS.

I take Adderall- it has helped but sometimes it just felt like only my body was awake. I went to Adderall and Provigil for a while. There does not seem to be a perfect stimulant.

Diet changes can help- like lean protein and no carbs or sugar during the day. Exercise can help a lot also, if you are able.

Others will have good comments to make. EDS is hard to live with, regardless of your diagnosis. Have you figured out what makes EDS worse for you? When I eliminated things that made it worse, like carbs, heavy meals and cold beverages, it got easier for me to manage. EDS didn't disappear, but the crashes turned into more manageable dips that I could live with.

Have you discussed reasonable accommodation for naps with your employer? That is not always an option, but it could protect you from discipline.


Does a diet change and exercise really help that much with the tiredness?

#4 Hank

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Posted 15 November 2012 - 02:41 PM

Does a diet change and exercise really help that much with the tiredness?



For me, managing what and when I eat keeps my EDS from getting worse- foods do not make EDS better, but some foods and especially large meals definitely make it worse. Managing my diet just helps me control what I can control. There is no food that will "improve" EDS but there are so many ways to make it worse. Sugars, big heavy daytime meals, empty carbs all make me crash.

Exercise actually helps me a lot. I feel better, oxygen moves to my brain- this really is the best non-medication option for me. If you can do something at all, it is better than nothing at all. If you have physical limits, there are ways to work within them. Right now, I have an injury which will require surgery so I am not exercising at all, but I can still walk the dog.

#5 sandygears

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Posted 21 November 2012 - 04:42 PM

I cut out all sugars/sweeteners and refined flours _during the day_. This allows my meds to work. It does NOT eliminate narcolepsy by any means! But it does reduce my symptoms.

I discovered this completely accidentally (being roommates with a diabetic for a year . . . ). The difference is very profound- it allows the meds and post-lunch naps (every single day for 20 minutes whether I feel tired or not!) to actually work. I am also able to drive without wondering if I will 'suddenly' feel sleepy.

But cutting out sugars/sweeteners means examining all the labels of everything diligently and looking at the Sugars listings- it takes effort to find basic items without sugars (or some sort of fruit, corn, or -tol sweetener in it). I don't even drink fruit juice or have dried fruits because they produce the same effect. This means alcohol too. Sugar-free stuff and things designed for diabetics are fine- although not necessarily 'healthy.' No white pasta, no white bread. Whole wheat pasta and Ezekial bread, yes. Then, if you eat the sugary stuff at night, you might notice how they effect your body and that you become 'sleepier.' I noticed that my cataplexy reliably appears after eating sweets.

I am not someone who noticed things about my body. I didn't 'notice' that I was lactose intolerant, narcoleptic, etc. So for me to notice this was huge.

Worth a try!

Melodie

Daytime naps don't help. I wake up feeling rested, but it only lasts for about 10 minutes.
Nuvigil didn't have any effect on my sleepiness.
Ritalin 20mg, 4x/day stopped working.
Adderall 20mg, 4x/day is what I'm taking now. I've had to pull over on 2 occassions today to take a nap and have taken 2 naps in my chair at work. This 'falling asleep' at work is going to get me fired pretty quick here.
Has anyone had any luck with other treatments? I'm really hoping there is something out there - I'd rather not fall asleep throughout the rest of my life.