I was diagnosed with Narcolepsy a few months ago after 20 years of nobody knowing why my sleep was so horrible. I started on treatment last summer before my official diagnosis. I was started on Provigil. Well, I found out that I'm allergic to it. I'm also allergic to Adderol. I have tried different dosages and strengths of Ritalin only to have it take me to a very dark place. Is there any treatment out there that can help me have the life I know I can have?
Not Responding To Typical Treatment
Started by
pacnwmomma
, May 31 2012 05:05 PM
4 replies to this topic
#2
LauraL
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Posted 31 May 2012 - 10:58 PM
Can you/have you tried Nuvigil? Or does an allergy to provigil mean you would probably be allergic to nuvigil too?
#3
Asleeper
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Posted 31 May 2012 - 11:32 PM
There is always scheduled naps everyday. My doctor suggested this back when I was being diagnosed but hadn't started medication yet. I would take a nap at lunch at work,and another after I got home from work. It was amazingly successful. To this day I will still sometimes substitute a nap for a scheduled pill.
Good luck finding a treatment that works for you, Tom
Good luck finding a treatment that works for you, Tom
#4
mep
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Posted 01 June 2012 - 01:42 PM
There are a lot of treatments out there that might help you. Unfortunately the only way to find out what will work for you is trial and error. One person's miracle pill is a total nightmare for someone else.
Here are some of the things you might want to look into.
(Prescription):
-You didn't mention if you'd tried Xyrem... it doesn't work for everyone but from what I've read it's a "miracle drug" for some PWN.
-Antidepressants can help some N symptoms. Prozac can have a mild stimulating effect and help suppress REM intrusion. Wellbutrin also helps some people maintain wakefulness. Effexor is another one that can work well for PWN, and may be worth trying, just please be aware that the withdrawal effects from this drug can be pretty bad (look up brain shocks)... As with all treatments you gotta weigh the costs against the benefits.
-If you are not allergic to all types of amphetamines, Vyvanse, Dexedrine, and Desoxyn are some alternatives to Adderall. (For me, Ritalin and Adderall were no good, but Vyvanse ended up working well overall.)
(Non-prescription):
- Lifestyle adjustments are an important part of treatment for any PWN, but as with the meds, you've gotta figure out what works for YOU. As Asleeper mentioned, scheduled naps can be really, really helpful. (Btw, the blog http://nisfornarcolepsy.com has a lot of other ideas that could help too).
-Some PWN have found that dietary changes made a huge difference for them. Avoiding simple carbohydrates/sugars may help. For certain people, giving up gluten may lead to dramatic improvement (won't work for everyone, but it's worth a shot).
- Over the counter supplements and vitamins can be helpful in various ways. Some examples: 5-HTP or Melatonin might be used to help your sleep schedule to be less fragmented. Alpha Lipoic Acid may help the body metabolize sugar and carbs better and thus help with energy. B-vitamins are supposed to help promote energy. Etc... Just make sure you do some thorough research and consult your doctor before trying any new OTC supplement.
- Relatively new research indicates that probiotic supplements may be useful in general for neurological issues; it's been shown that what goes on in the gut plays a major role in what goes on in the brain.
- Other possibilities: Light therapy, support groups/forums, counseling, maintaining a schedule, yoga, meditation, accommodations at school/work, knowing your triggers... just never give up! There are always more options.
One more thing: Don't rely soley on your doctor to decide what the best course for you is. Especially since narcolepsy is so poorly understood, even by most doctors, it's really important for PWN to play an active role in their treatment. Learn as much as you can on your own about the disorder and what others have tried. Good luck on your way to the life you know you can have
I'm working on navigating it too. We'll get there.
Here are some of the things you might want to look into.
(Prescription):
-You didn't mention if you'd tried Xyrem... it doesn't work for everyone but from what I've read it's a "miracle drug" for some PWN.
-Antidepressants can help some N symptoms. Prozac can have a mild stimulating effect and help suppress REM intrusion. Wellbutrin also helps some people maintain wakefulness. Effexor is another one that can work well for PWN, and may be worth trying, just please be aware that the withdrawal effects from this drug can be pretty bad (look up brain shocks)... As with all treatments you gotta weigh the costs against the benefits.
-If you are not allergic to all types of amphetamines, Vyvanse, Dexedrine, and Desoxyn are some alternatives to Adderall. (For me, Ritalin and Adderall were no good, but Vyvanse ended up working well overall.)
(Non-prescription):
- Lifestyle adjustments are an important part of treatment for any PWN, but as with the meds, you've gotta figure out what works for YOU. As Asleeper mentioned, scheduled naps can be really, really helpful. (Btw, the blog http://nisfornarcolepsy.com has a lot of other ideas that could help too).
-Some PWN have found that dietary changes made a huge difference for them. Avoiding simple carbohydrates/sugars may help. For certain people, giving up gluten may lead to dramatic improvement (won't work for everyone, but it's worth a shot).
- Over the counter supplements and vitamins can be helpful in various ways. Some examples: 5-HTP or Melatonin might be used to help your sleep schedule to be less fragmented. Alpha Lipoic Acid may help the body metabolize sugar and carbs better and thus help with energy. B-vitamins are supposed to help promote energy. Etc... Just make sure you do some thorough research and consult your doctor before trying any new OTC supplement.
- Relatively new research indicates that probiotic supplements may be useful in general for neurological issues; it's been shown that what goes on in the gut plays a major role in what goes on in the brain.
- Other possibilities: Light therapy, support groups/forums, counseling, maintaining a schedule, yoga, meditation, accommodations at school/work, knowing your triggers... just never give up! There are always more options.
One more thing: Don't rely soley on your doctor to decide what the best course for you is. Especially since narcolepsy is so poorly understood, even by most doctors, it's really important for PWN to play an active role in their treatment. Learn as much as you can on your own about the disorder and what others have tried. Good luck on your way to the life you know you can have
I'm working on navigating it too. We'll get there.
#5
Heidi L
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Posted 01 June 2012 - 02:35 PM
Hi! Are you near Seattle? Oh, I want to meet someone in person so much lately....
Anyhow, just wanted to let you know I'm here and I have been symptom free for a long time using a gluten free diet.
If you're interested, read my info- and if you're in the area, I'll help you out as much as you want.
(some provigil contains gluten...)
Anyhow, just wanted to let you know I'm here and I have been symptom free for a long time using a gluten free diet.
If you're interested, read my info- and if you're in the area, I'll help you out as much as you want.
(some provigil contains gluten...)
