12 replies to this topic

[vlntrashley]

I am 24. I have both narcolepsy and myasthenia gravis (autoimmuno neuromuscular disease).

I have been exhausted for years, falling asleep in meetings, at the wheel, playing video games, in tests, you name it - I've fallen asleep during it. Finally, my doctor decides to do a sleep study and the doctor told me I have one of the most severe cases of narcolepsy he has seen in years - whatever that means.

He gave me Nuvigil - 250mg. It worked pretty well, for most of the day at least. I had dry mouth and felt a bit "panicky" for lack of a better word. Then developed trouble swallowing, then had a rash spread across my face. This means no more nuvigil.

Now I am taking Ritalin 10mg every 3 hours. It does not help in the slightest bit. I feel absolutely no difference, and I am back to being exhausted, constantly falling asleep, despite getting 8-9 hours of sleep at night.

I feel like I'm running out of options, anyone have an suggestions or recommendations on what I should do? I really feel defeated by all of this today.

-Ash

[Fluffybunny5000]

I am 24. I have both narcolepsy and myasthenia gravis (autoimmuno neuromuscular disease).

I have been exhausted for years, falling asleep in meetings, at the wheel, playing video games, in tests, you name it - I've fallen asleep during it. Finally, my doctor decides to do a sleep study and the doctor told me I have one of the most severe cases of narcolepsy he has seen in years - whatever that means.

He gave me Nuvigil - 250mg. It worked pretty well, for most of the day at least. I had dry mouth and felt a bit "panicky" for lack of a better word. Then developed trouble swallowing, then had a rash spread across my face. This means no more nuvigil.

Now I am taking Ritalin 10mg every 3 hours. It does not help in the slightest bit. I feel absolutely no difference, and I am back to being exhausted, constantly falling asleep, despite getting 8-9 hours of sleep at night.

I feel like I'm running out of options, anyone have an suggestions or recommendations on what I should do? I really feel defeated by all of this today.

-Ash

What is your doctor doing about it? seek 2nd opinion and seek natural remedys... I am able to take nuvigil and omg its a pain but without it its a lot worse. But I have began seeking alternative treatments such as accupuncture and herbal remedies.. see this site see if it helps!

http://www.narcolepsyhelp.org/
http://www.carnofax.com/
www.Sepreton.com
www.Leplical.com

[vlntrashley]

they gave me aderol to take twice a day. I've taken it twice but so far, nothing with that either. Maybe it takes a few days to work.

Other than this, it is my understanding that nuvigil, provigil, ritalin, and aderol are really the only ways they treat it. And I'm allergic to the first two and the second two don't seem to work, so maybe I'm just SOL. I was actually glad when I got diagnosed because that meant I could be treated and actually be able to stay awake during the day. At least Nuvigil worked pretty well until I developed the rash from it.

Thanks for the resources you gave.

[tabster1]

they gave me aderol to take twice a day. I've taken it twice but so far, nothing with that either. Maybe it takes a few days to work.

Other than this, it is my understanding that nuvigil, provigil, ritalin, and aderol are really the only ways they treat it. And I'm allergic to the first two and the second two don't seem to work, so maybe I'm just SOL. I was actually glad when I got diagnosed because that meant I could be treated and actually be able to stay awake during the day. At least Nuvigil worked pretty well until I developed the rash from it.

Thanks for the resources you gave.

My little sister and I both have narcolepsy, she also got the rash when she took Nuvigil - so no nuvigil for her. she is taking ritialin up to 4 times a day in different doses, plus a sleep medication because she has severe insomnia. I think it is going to take awhile for them to find the right dose that keeps you awake, it has been months for my sister and she still hasn't found it yet. The sleep medication is supposed to help her get a more restful sleep at night, which would hopefully make her less sleepy during the day. I really feel for the people who can't take Nuvigil, it's so much easier to take just 1 pill in the morning than to spread them out all through the day and still struggle. I hope they will eventually work it out!

My experience has been that these medications work immediatly - they don't need to build up in your system. So you may not be on the right dose yet. They usually start you off really small and then work you up. My sister started on 5mg ritalin and it did NOTHING and they have built it up to around 60 now I think? Multiple times per day keep in mind.

[none]

Hi, can I ask if you know the reason why you both have narcolepsy? Because I am wondering if its also genetic or not.

[tabster1]

Hi, can I ask if you know the reason why you both have narcolepsy? Because I am wondering if its also genetic or not.

I read that somewhere it is possibly genetic. Something to do with some brain chemical (sorry for the late response!)

[MsMolly]

Hello,
I am new here; Just finished wading through the pages of this forum (learning a lot!), but haven't felt compelled to contribute until I read your (vintrashley's) post. I don't feel this is the place to share my "story", but (long-story-short): I was diagnosed with Narcolepsy many moons ago (before Provigil, Nuvigil & other meds existed). My doctor put me on Ritalin (which did NOTHING for my EDS). He had me increase the dosage a few times, which increased my heart rate & made me "jittery", but I was STILL falling asleep in class (I was a college student at the time).
After about the 4th bout of this (me telling him it wasn't helping, him saying to take more per day), I basically "gave up" on persuing treatment for several years...

Then one day, I heard about a support group for people with Narcolepsy, and attended a meeting- and (of course) I learned there were other meds/treatments that were helping some people lead a (relatively) normal life. I attended a few meetings, then saw another doctor (who, fortunately, was very open-minded about allowing me skip the usual order of meds and go straight to trying Desoxyn (I'd met a few people in the group who'd been taking it for several years without having to go on "drug holidays" or increase their dosage).
Desoxyn worked pretty well for me- for about 5 years, then one day I went to pick up my prescription, & the pharmacist said they (drug co.) had stopped making it. Well, Provigil had just come out, so my doctor had me try that. It helped very little (if at all), and caused very severe headaches for me, so my doctor had me try Dexedrine SR (time-release).
I have been taking it (Dexedrine) for about 12 years now. It doesn't work as well for me as Desoxyn had, but well enough that I don't wish to try something else.

Well, so much for making a long story short! : / Anyway, ask your doctor about Dexedrine; It doesn't seem to be as commonly prescribed as other meds mentioned here, but it's certainly helped in my case.
Also (coming from many years of experience in dealing with doctors for this and other health issues): If your doctor doesn't seem to "listen", or willing to let you help w/deciding your course of treatment, find another doctor who will. They're out there!
Good luck to you, : )

[Megssosleepy]

I am sooooo gittery today , I cant stand any of these meds! my heart is racing and that make me nervous and nervousness causes my legs to not want to work... Nuvigil was the worst, Ritalin comes in second, vyvance isnt so swell either... I am going back on Adderal, its the only one that doesnt make me feel bi-polar, and lets me sleep "almost" through the night. With all that being said, I think everyone is so different how we react to these stimulants... I will be starting Xyrem soon... (thank goodness for the coupon!) Hopefully that will do the trick... Just keep trying until you find something that works "well" there are so many options!

[Emily P]

I am sooooo gittery today , I cant stand any of these meds! my heart is racing and that make me nervous and nervousness causes my legs to not want to work... Nuvigil was the worst, Ritalin comes in second, vyvance isnt so swell either... I am going back on Adderal, its the only one that doesnt make me feel bi-polar, and lets me sleep "almost" through the night. With all that being said, I think everyone is so different how we react to these stimulants... I will be starting Xyrem soon... (thank goodness for the coupon!) Hopefully that will do the trick... Just keep trying until you find something that works "well" there are so many options!

Coupon? What coupon?

[lndsylou111]

Coupon? What coupon?

There is an insurance copay coupon for Xyrem users through Jazz that helps reduce the amount of copay your have to pay for your Xyrem.

[drago]

I am 24. I have both narcolepsy and myasthenia gravis (autoimmuno neuromuscular disease).

He gave me Nuvigil - 250mg. It worked pretty well, for most of the day at least. I had dry mouth and felt a bit "panicky" for lack of a better word. Then developed trouble swallowing, then had a rash spread across my face. This means no more nuvigil.

Now I am taking Ritalin 10mg every 3 hours. It does not help in the slightest bit. I feel absolutely no difference, and I am back to being exhausted, constantly falling asleep, despite getting 8-9 hours of sleep at night.

I feel like I'm running out of options, anyone have an suggestions or recommendations on what I should do? I really feel defeated by all of this today.

Hey Ash:
I was first put on provigil when I was diagnosed because nuvigil didn't work for me. It gave me bouts of disorientation, so I couldn't keep taking it, which was OK with me, because it didn't really help me - I couldn't fall asleep but I was exceptionally tired ("zombie like"). I was then switched to Adderall, which took about 1-2 weeks to really work for me. At first, it made me super-hyper, then I would burn out about thirty minutes to an hour later and I'd have sleep attacks. That gradually got better over the week until it worked for most of the day.

The only thing that has really helped me is exercise. The exercise helps me stay asleep at night, which helps me stay awake during the day. It's help me keep my adderall dosage low (25 mg / day total). I do martial arts and use the eliptical. The eliptical is better than running for me because it's easier on my knees (and if I am feeling weak, I can't trip and fall).

When I was having a rough time, I switched to a ketogenic diet. That helped. I also tried AXONA (medical food supplement developed for people with Alzheimer's) which is the same as being on a ketogenic diet, but without a dietary change. (Ketogenic diets are great for the brain, but can be hard on some of the internal organs.)

drago

[Megssosleepy]

Coupon? What coupon?

Sorry for the late response... its the one that the central pharmacy gave me for it... the co-pay was going to be $200 now its $35

[Kim Kay]

I am 24. I have both narcolepsy and myasthenia gravis (autoimmuno neuromuscular disease).

I have been exhausted for years, falling asleep in meetings, at the wheel, playing video games, in tests, you name it - I've fallen asleep during it. Finally, my doctor decides to do a sleep study and the doctor told me I have one of the most severe cases of narcolepsy he has seen in years - whatever that means.

He gave me Nuvigil - 250mg. It worked pretty well, for most of the day at least. I had dry mouth and felt a bit "panicky" for lack of a better word. Then developed trouble swallowing, then had a rash spread across my face. This means no more nuvigil.

Now I am taking Ritalin 10mg every 3 hours. It does not help in the slightest bit. I feel absolutely no difference, and I am back to being exhausted, constantly falling asleep, despite getting 8-9 hours of sleep at night.

I feel like I'm running out of options, anyone have an suggestions or recommendations on what I should do? I really feel defeated by all of this today.

-Ash

I am 23 and am also considered a "severe narcoleptic". I never to Nuvigil or Provigil because they can affect birth control pills. I started out on Dexedrine 15mg, which was great until my body got used to it.

I now take Ritalin 10mg as needed throughout the day, but I take Concerta 54 (stronger dose of Ritalin) when I wake up in the morning. Has your doctor given you a prescription for something stronger to start your day with? If I don't take the Concerta 54 in the morning, the Ritalin 10mg do not help. If I DO take the Concerta 54, the Ritalin 10mg is all I need to wake me up a little when I start feeling tired.

I started out on Ritalin 20mg instead of Concerta54, but my body again got used to it. I went to 30mg and got used to it again in another 3 months. I was switched to Concerta 54 over a year ago and I haven't had any problems with it.

Also, I started eating gluten-free earlier this year and it's made a HUGE difference. I'm not sure if my gluten intolerance was making the narcolepsy worse when I'd eat it or if my body absorbs my medicine better now that I don't eat gluten, but now I don't even have to take a Ritalin 10mg during the day sometimes. Just a thought if you feel like you're out of options!