4 replies to this topic

[naplover]

Which lifestyle changes, alternative medicine, etc. do you use to manage narcolepsy?

I've gotten side effects from stimulants and Wellbutrin. I don't have cataplexy, so I don't know if Xyrem will help (and don't want to try because of side effects with other medications and other health issues). I'm taking l-carnitine, at the suggestion of Emory doctors, but it has not made a difference.

I don't know what else to try, and it seems that my sleepiness has gotten worse in the past month.

[Contemplative]

Which lifestyle changes, alternative medicine, etc. do you use to manage narcolepsy?

I've gotten side effects from stimulants and Wellbutrin. I don't have cataplexy, so I don't know if Xyrem will help (and don't want to try because of side effects with other medications and other health issues). I'm taking l-carnitine, at the suggestion of Emory doctors, but it has not made a difference.

I don't know what else to try, and it seems that my sleepiness has gotten worse in the past month.

In addition to my medication regimen, I use the following non-pharmacological approaches:


Set sleep and wake time everyday including weekends

• Regular nap schedule; 2x a day for 20 minutes each so I don't wake up with sleep inertia; it has been suggested however that I use 30 minutes to an hour
• Listening to my body; if a terrible sleep attack occurs, I take an additional nap
• Avoiding items can be just as an effective strategy; I avoid caffeine
• Having a winddown activity such as coloring or crocheting has been helpful and soothing at bedtime
• Exercising on a daily basis which I have been doing for years so it has become a habit, one that I usually actually look forward to and miss if I don't get to it. Not too close to bedtime, though.
• Tyrosine rich foods in the am and trytophan and melatonin rich foods in the evening and some healthy carbs in the pm too
• I take magnesium gluconate 500mg as a supplement to relax muscles since I have fibro; I think it is a sleep aid too.
• Music whether it be energizing or soothing supports my routine and minimizes stress

Hope this helps a little bit. Keep us posted as to you struggles and successes. I for one will be curious to follow how you're doing.

All the best,

Contemplative

[Megssosleepy]

I just purchased a book that I saw at Whole Foods (much cheaper on Amazon) Its a big one and the only one I have found that has info about N in it (discouraging)

I should receive it by Friday... So I will fill you in on what it says, its got 4 pages on N! It also say what the herb/supplement is used for and how it helps. From browsing in while in the store it included a lot for clear/better thinking! I am pretty excited to try something different!

[naplover]

I think one of the differences between IH and N is that a short nap is not refreshing for IH patients. I know that if I take a nap, there is no way I'll wake up in 20 minutes--I need 1-4 hours. Because I'm not taking any medication for this, I NEED to have caffeine to get through the work day.

It looks like I'll have to take Tyrosine supplements--I'm either allergic (nuts, avocado, banana), intolerant (lactose, soy), or occasionally eat (chicken) foods that have Tyrosine.

Megssosleepy, let me know what you find in that book!

[Sisu]

It looks like I'll have to take Tyrosine supplements--I'm either allergic (nuts, avocado, banana), intolerant (lactose, soy), or occasionally eat (chicken) foods that have Tyrosine.

Megssosleepy, let me know what you find in that book!

Jeepers, I thought I was the only one allergic to everything that helps. I'm even allergic to modafinil. I'm sorry you have to go through this, but it's kinda good we each know we aren't the only ones.