9 replies to this topic

[MsDawn]

I was diagnosed with narcolepsy about two years ago. I was given a sample package of Provigil, though I don't remember the dose. When I went back to the dr. and told them the medicine didn't help at all they doubled the dose and gave me a prescription. Dropped the prescription off at the pharmacist, went to pick it up...almost $200!! My insurance didn't cover the Provigil.

Went back to the dr. and was given the only alternative. Ritalin. To make a long story short...the Ritalin doesn't help, either. I shared this with the dr. He said that it works better if you don't take it every day. Wrong. Still didn't work. I go back to the dr., share with him, he says (in a nutshell), "I'm sorry, but Ritalin and Provigil are the only medications." But, they don't work!!! He's adamant that there's nothing he can do about it, hopefully Provigil will come out with a generic alternative that my insurance will cover. I start crying...almost hysterically, while the dr. just stares at me and finally writes my prescription for Ritalin, hands it to me and leaves.

I'm SO tired!!!

There's GOT to be something I can do. Sometimes I feel like I can barely function. I get scared driving (if not for my own safety, then for those around me!) and I HAVE to work (for the insurance that doesn't cover my Provigil), but sometimes I can barely keep my eyes open. I hate this feeling and I just can't believe there's not SOMETHING that will make it go away?!

[Shonda]

Try this is for people with Adhd but it helps people with nacrolepsy he's been on this for two weeks and it's last about eight hours it keeps him focus, it has been on the market that long (Vyvanse 70mg) Provigil 200mg didn't work my son at all.

Shonda

I was diagnosed with narcolepsy about two years ago. I was given a sample package of Provigil, though I don't remember the dose. When I went back to the dr. and told them the medicine didn't help at all they doubled the dose and gave me a prescription. Dropped the prescription off at the pharmacist, went to pick it up...almost $200!! My insurance didn't cover the Provigil.

Went back to the dr. and was given the only alternative. Ritalin. To make a long story short...the Ritalin doesn't help, either. I shared this with the dr. He said that it works better if you don't take it every day. Wrong. Still didn't work. I go back to the dr., share with him, he says (in a nutshell), "I'm sorry, but Ritalin and Provigil are the only medications." But, they don't work!!! He's adamant that there's nothing he can do about it, hopefully Provigil will come out with a generic alternative that my insurance will cover. I start crying...almost hysterically, while the dr. just stares at me and finally writes my prescription for Ritalin, hands it to me and leaves.

I'm SO tired!!!

There's GOT to be something I can do. Sometimes I feel like I can barely function. I get scared driving (if not for my own safety, then for those around me!) and I HAVE to work (for the insurance that doesn't cover my Provigil), but sometimes I can barely keep my eyes open. I hate this feeling and I just can't believe there's not SOMETHING that will make it go away?!

[sleepstateTuscon]

There is, but I think u should find a new Dr. first by the attitude I dont think that this one will ever be of any help to you. This one is just a lazy smartass or he has some pretty serious prbolems himself if he believes Provigil and Rytalin are the only options. I go back and forth between 20mg of ritalyn 4xs a day, and Adderall 30 mgs 2x a day. I also take Xyrem and codiene 30mg 4x a day. Codiene helps me concentrate, it keeps me alert, clears my mind for about 2hrs, not a lot of time but that is really the only drug that I can get things done with. Things like paying bills, knowing what bills, where they might be, things that I have to use my mind to get done, paper work stuff. Opiates have an alerting effect without the sid effects like the amphetamines do. I cant stand those. I feel normal with codiene. A lot of people with N have the same effect, but not all, I cant remember the reason, and it is very hard to find any information about N and treatment with opiates, mainly codiene. Some how I ended up with one of the Dr.s who did some research on it. Dr. Colin Bamford at the University of Arizona. You can look it up on those websites that publish medical and science articles, they did this in the late 80's I believe. There are other papers out there but they are very hard to find.
None of it will make any difference unless you have a Dr. that will work with you. That is a rare find to.

good luck
Debbie

[Lais02]

I agree with Debbie... you need to look for a different doctor. If you think this doctor does care and you don't want to switch then tell him to write a letter to your insurance company. My doctor had to do the same thing for me... Ritalin didn't work for me and my insurance wouldn't cover the provigil. Once my doctor wrote a letter they decided to cover the provigil. Good luck!

[Need to nap]

I agree also on getting a new doc. When I was first diagnosed my doc. didn't even explain to me what it was, if it was progressive, bla, bla, bla. Any time I wanted to talk with her I had to go through the secretary and she would relay a message to the doc. I never got to talk with my doc. and the info. wouldn't get to her correctly so the sec. and I would play phone tag. I left a message once crying hysterically like you said and I never got a call back. This was on a Friday and I had to call them back on Tue and then the sec. said the doc. was doing rounds all week at the hospital and she wouldn't be able to get a hold of her. Mind you I needed a prescription refill!!!! I never called them back and I didn't go to my appt. I was so angry. Nobody did ever call me back, pretty said isn't it. I contacted my primary doc. for my refill and started looking for a new doc. My new doc is great. We did try Vyvanse and I liked it best for giving me more energy in the morning. It is a rather new drug so my insurance won't pay for it yet. I am working on them. That doesn't help you much because there is no generic. I believe its around $130.00. If you can get a prescription wrote up you can go to Vyvanse web site and have them mail you a free 30 day trial. Provigil also will send you a 30 day trial. Provigil didn't work for me, it actually made me even more tired. With Ritalin I could tell when it was wearing off and I could tell when I took my next dose and by afternoon I would start getting agitated. I am on Adderal 30mg 2 x day. I have good days and bad. My doc and I have talked about Xyrem but it makes me a little nerves because I have kids and most reviews I read say that it can make you feel and act drunk and slur speech and other things. I really just want the energy and motivation to be able to do things. Well that’s my info. sorry I was so long winded.

Do get a new doctor you will start feeling better just by doing that. You won't have to see that blank look on the docs. face to make you feel stupid and you will know that your not crazy.


JB

[Henry G]

Provigil is and will always be "hype"

Provigil is and can be useful for the odd occasion though, like some important long meeting etc.

There are two medicines worth considering but the first is very very dangerous ok?

Zolpidem

- but only for the odd occasion. Never every night as some practitioners my prescribe.

It is one of the most addictive medicines I've come across. Almost as addictive as Nicotine. But you won't get dependant if you take one odd special occasions.

If you take two in a row, first night one, second night another one - finished; you are hooked, welcome to "Zolpidem Hell"

Now I've just weaned myself from Zolpidem and it was Hell.

I was prescribed here by a Doctor that followed the argument: most Narcoleptics can't sleep well or deeply so if we knock them out chemically maybe (and just maybe) they might wake with a tad more wakeful-energy next day.

I won't go into the details of the other side of Zolpidem - the Hell side., just search the internet. But last night I've taken one Zolpidem again. Which was MAD.

I mean having fought the worse nightmare of withdrawal symptom, being extremely exhausted and still not being able to sleep. Fancy Severe Narcolepsy coupled with Severe Insomnia. I vowed never ever to take a Zolpidem again.

THen I got clean and my normal Narcolepsy set in again. 15 hours sleeping for days on end, no motivation, blah blah etc .. then I thought OK I am going to do the Zolpidem experiment.

Zolpidem should have 3 rules:

1 - Never take more than 1 pill but you may take 1/2 or 3/4

2 - Don't take Zolpidem when first going to sleep. Sleep normally first then after your 10,12 or 14 hours of sleep, get ready for your Z dose.

Getting ready means: use the toilet, eat something light, drink some water and go back to your bedroom and lock the door (or put a chair or some obstruction, a cabinet, etc in front of it)

3 - Lock your bedroom door (or obstruct it somehow)

Reason for locking the bedroom door is this: sleepwalking. There is a remote chance you may sleepwalk. I thought that was rubbish only to one day find my computer switched on, phone of the hook and lots of other scary tell-tale sign one morning. If locking might be too extreme - obstruct your bedroom door somehow.

Make it difficult for you to sleepwalk. Because Zolpidem Sleepwalking is very unique. Although you cannot remember an iota of what you did the following day. You are very dextrous and versatile, some even "drive", I've logged into my computer (typed in user name and password)

Now provided you follow those precautionary measures you may benefit the odd-one out pill of Zolpidem

A last rule would be:

4 - Give the Zolpidem box to someone else to hide it. Someone a tad bossy (so it's hard to get from them unless you really really have to).

Believe me if you have the Zolpidem box yourself - it is all but extremely easy to take another pill the next night ; and if you do that - bang! you are in for some serious serious trouble.

I dont have anyone to hide the Zolpidem box for me - so what I did, I hid it in under my flat-mate's mattress. Now how embarrassing would it be to tell him I just went inside his room and hid some pills under his bed? Very. Hence that creates one massive barrier for me to take Zolpidem again. I have to wait until he is out and even then it's not comfortable sneaking inside there.

Wellbutrin

- There is another (safer) medicine which only now I realize it's virtue. It's Wellbutrin.

It can be a standard practice to prescribe anti-depressants to Narcoleptics simply because they are more prone to it by "burning out".

But there is usually a problem with anti-depressants such as Prozac etc. They cause impotency and some even make you feel sleepy.

But Wellbutrin is a mild stimulant and a very very effective anti-depressant. It is very non-intrusive, it is so silent that I often in the past gave up taking thinking it was a waste of time.

I've finally got round to doing the experiment taking Wellbutrin daily long-term. Never have i suffered from fatigue-related depression since.

[Henry G]

Zolpidem = Ambien

by the way.

[Yawn]

Hi MsDawn,

I have given my old doc the boot & am looking forward to seeing a new one in a couple of weeks. "What else can I take?" is my only real question for him. I'm dying to be told there's a synthetic hypocretin available but I suspect it'll be years & years... Hoping he'll recommend a bunch of antidepressants or something to boost the Provigil effect.

I was prescribed Provigil (modafinil) years ago but I rarely got the scripts filled because it was just too expensive. So I too got the poor man's modafinil - "the bloody horrid Ritalin", which I can't stand. But....early this year someone told me about being able to order the Indian generic modafinil. It's all quite legal if you have a valid local doc's script (well, check with your local FDA or whatever equivalent about the procedure in your country). I've ordered it from www.inhousepharmacy.com in Vanuatu several times now. They seem to be about the cheapest too. Only problem is that they don't like shipping it to the US - you have to have a small e-mail argument. Attach a copy of your script would help too. Problem was that so many Americans were ordering it without a script and their packages were getting confiscated by Customs / DEA. So some customers were complaining about inhouse not delivering at forums when it really wasn't their fault at all. So they just removed the drug from their search but if you go directly to the link, you can see it's still there. Here: http://www.inhouseph.../modavigil.html. It's so cheap there I doubt you'll care if your insurance covers it or not. I was worried about it not being as good as the name brand so my doc got me a sample pack and as far as I can tell it "seems" to be the same as the real thing.

Hope this helps & apologies if I've broken any cardinal site rules

I don't work for them of course, but you can always send me a million $ regardless. I'm not fussy

Good luck

*Yawn*

I was diagnosed with narcolepsy about two years ago. I was given a sample package of Provigil, though I don't remember the dose. When I went back to the dr. and told them the medicine didn't help at all they doubled the dose and gave me a prescription. Dropped the prescription off at the pharmacist, went to pick it up...almost $200!! My insurance didn't cover the Provigil.

Went back to the dr. and was given the only alternative. Ritalin. To make a long story short...the Ritalin doesn't help, either. I shared this with the dr. He said that it works better if you don't take it every day. Wrong. Still didn't work. I go back to the dr., share with him, he says (in a nutshell), "I'm sorry, but Ritalin and Provigil are the only medications." But, they don't work!!! He's adamant that there's nothing he can do about it, hopefully Provigil will come out with a generic alternative that my insurance will cover. I start crying...almost hysterically, while the dr. just stares at me and finally writes my prescription for Ritalin, hands it to me and leaves.

I'm SO tired!!!

There's GOT to be something I can do. Sometimes I feel like I can barely function. I get scared driving (if not for my own safety, then for those around me!) and I HAVE to work (for the insurance that doesn't cover my Provigil), but sometimes I can barely keep my eyes open. I hate this feeling and I just can't believe there's not SOMETHING that will make it go away?!

[C.J.]

...
I go back and forth between 20mg of ritalyn 4xs a day, and Adderall 30 mgs 2x a day. I also take Xyrem and codiene 30mg 4x a day. Codiene helps me concentrate, it keeps me alert, clears my mind for about 2hrs, not a lot of time but that is really the only drug that I can get things done with. Things like paying bills, knowing what bills, where they might be, things that I have to use my mind to get done, paper work stuff. Opiates have an alerting effect without the sid effects like the amphetamines do. I cant stand those. I feel normal with codiene. A lot of people with N have the same effect, but not all, I cant remember the reason, and it is very hard to find any information about N and treatment with opiates, mainly codiene. Some how I ended up with one of the Dr.s who did some research on it. Dr. Colin Bamford at the University of Arizona. You can look it up on those websites that publish medical and science articles, they did this in the late 80's I believe. There are other papers out there but they are very hard to find.
...
Debbie

Thanks for this post, Debbie. Like MsDawn, I had no luck with Provigil. My neuro just wanted me to take more, but I felt awful on it. My more-helpful GP got me on Adderall instead, but it only helps some, and does nothing for my cataplexy. I haven't been put on Xyrem.

Six weeks ago, I was about to go see a new sleep specialist, but instead had to hospitalized for an unrelated emergency surgery (intestinal obstruction). The strangest thing was that my narcolepsy seemed practically "cured" after the surgery! Then I started to have bad N days again. But then I realized that that those were the days I didn't take any pain meds. Eureka! (I had been on morphine & Demerol for a week in the hospital and on hydrocodone after that. I'm allergic to codeine.) This was a quite unexpected discovery for me. Despite all my prior reading about N, I'd never heard of treatment with opiates.

I then found some references on the 'net about opiate treatment for N and told all this to my GP on a follow-up visit. She knows me well and had never seen me so alert, so she was happy to help me keep up this treatment until my rescheduled appointment with the sleep specialist, which is Thursday. I'm now on Oxycontin, which I take first thing in the morning along with my Adderall. And that's all I need for the whole day! The Oxycontin is extended-release and keeps me awake and alert well enough that I don't need my afternoon Adderall (which I'm glad of because I hate the way it makes my heart pound, etc.)

The clear-headedness on this regimen is wonderful compared to just being jacked on lots of amphatimines. As you said, I just "feel normal". Before, I would still feel tired and out-of-it "underneath" the amphatimine band-aid, if you know what I mean. But the opiates, of all things, just seem to cleanly remove the sleepiness and fog.

I don't know if this sleep specialist will go along with this or not, though. Also, my cataplexy is somewhat better now, but I'm not sure if it's better enough. I also have problems regulating my sleep -- my occasional insomnia has worsened a bit with the opiates. Before all this, I was wondering if Xyrem would help me. I don't know what the doc will recommend for me, but I see that you are on both Xyrem and codeine. Is it okay to be on both, or can you only have the codeine in the middle of the day?

The opioids are working really well, so I hope they will keep working. How long have you been on codeine? Is tolerance build-up a problem?

Also, I would appreciate it if you could point me to the research you've found on this. As you said, it's very hard to find. Thanks!

- C.J.

[sleepstateTuscon]

Thanks for this post, Debbie. Like MsDawn, I had no luck with Provigil. My neuro just wanted me to take more, but I felt awful on it. My more-helpful GP got me on Adderall instead, but it only helps some, and does nothing for my cataplexy. I haven't been put on Xyrem.

Six weeks ago, I was about to go see a new sleep specialist, but instead had to hospitalized for an unrelated emergency surgery (intestinal obstruction). The strangest thing was that my narcolepsy seemed practically "cured" after the surgery! Then I started to have bad N days again. But then I realized that that those were the days I didn't take any pain meds. Eureka! (I had been on morphine & Demerol for a week in the hospital and on hydrocodone after that. I'm allergic to codeine.) This was a quite unexpected discovery for me. Despite all my prior reading about N, I'd never heard of treatment with opiates.

I then found some references on the 'net about opiate treatment for N and told all this to my GP on a follow-up visit. She knows me well and had never seen me so alert, so she was happy to help me keep up this treatment until my rescheduled appointment with the sleep specialist, which is Thursday. I'm now on Oxycontin, which I take first thing in the morning along with my Adderall. And that's all I need for the whole day! The Oxycontin is extended-release and keeps me awake and alert well enough that I don't need my afternoon Adderall (which I'm glad of because I hate the way it makes my heart pound, etc.)

The clear-headedness on this regimen is wonderful compared to just being jacked on lots of amphatimines. As you said, I just "feel normal". Before, I would still feel tired and out-of-it "underneath" the amphatimine band-aid, if you know what I mean. But the opiates, of all things, just seem to cleanly remove the sleepiness and fog.

I don't know if this sleep specialist will go along with this or not, though. Also, my cataplexy is somewhat better now, but I'm not sure if it's better enough. I also have problems regulating my sleep -- my occasional insomnia has worsened a bit with the opiates. Before all this, I was wondering if Xyrem would help me. I don't know what the doc will recommend for me, but I see that you are on both Xyrem and codeine. Is it okay to be on both, or can you only have the codeine in the middle of the day?

The opioids are working really well, so I hope they will keep working. How long have you been on codeine? Is tolerance build-up a problem?

Also, I would appreciate it if you could point me to the research you've found on this. As you said, it's very hard to find. Thanks!

- C.J.

C.J.
Sorry its taken so long for me to get back to you on this. I ve been having a lot of trouble with my computer. In fact it crashed and I lost a lot of stuff, including the places where I had those papers. I am going to scan them back in as soon as I get a chance.
I believe the reason they tell you not to take Xyrem with codiene is that codiene is known to make people drowsy and for most people its not a good idea to mix them, but codiene keeps me awake. I ve been taking it for around 10-11yrs, I started @30mg 3x a day, and a yr or so ago increased it to 4x a day. Just now thinking about increasing it again.
You said you were taking oxycotin? I think codiene is really all you'd need. Its not nearly as addictive if at all and works pretty good. I did try and find the papers on the net, I didnt find the specific ones I mentioned but there are a few others I found. I dont have the addresses where I can find them but if you go to "pubmed" or the NIH and look for the library, cant remember right off what the exact name is but its the National health library, there you look for a list of journals like the American Medical Journal, but theres one published for just about every topic in medicine, click on some of those, you can sign up to have them send you abstracts. Once you get into those you should be able to find a lot of stuff. If you have trouble send me a message and I will send you some links.
I know the feeling of getting the look of "yea u just want some painkillers" if you go to a sleep specialists they should already at least have heard of this treatment, if not they can find out pretty easy. If it helps, the Dr. I saw who did study's with codiene and another opiate is Dr. Colin Bamford with the University Physicians at the University of Arizona Medical Center, Neurology. Maybe your Dr. can just call him and ask him about it.
Sorry I cant give you more right now, but this computer has really screwd me up. I cant find anything.
Good Luck
Debbie