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Best Meds for Narcoleptsy are...


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#1 majorfunding

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Posted 12 December 2007 - 05:28 PM

Hi,

I have read most of this forum and now want to offer my opinion on the meds I have tried. Especially Ritilin. IMHO it is so bad (side effects) that it should be banned for use on N. It makes adults feel so bad that they may be awake, but wish they weren't.

I only hope it is better with children because if it is not, then we are really doing a bad thing to them.

I suppose the amphetamines (except Desoxyn) are OK although the side effects are problematic and seem get in the way of a high enough dose to help some people.

I have tried Provigal. took it for a year because it was all my doctor would give me. Only took 200 mgs because that is all my insurance would pay for and because that is what my doc prescribed and I am one of those people who tends to follow doctor's instructions.

At that dose, Provigil did little for me. However, I know someone who takes 50 mgs and cleans their house!!

For those who can get it and can take it without increasing their dose and tollerance (self medicating), I HIGHLY recomend Desoxyn. I was diagnosed with N 38 years ago. Took no meds for a couple years, then eight years on Desoxyn (spansles the best) untill my doc said he could not write it anymore because it had become "politically incorrect".

Then did without meds till a few years ago when came Provigil. Then no insurance, so back to nothing for a couple years untill finally someone competent started writing my meds.

I tried ritilin for a few months even though my doc told me it was trash. Then a year of Dexedrine and when we finally had established a good relationship,

I provided her as much research as I could find (not much recent) and wrote her a good letter and we entered into an agreement that she would write it as long as I showed no signs of abuse.

That was over two years ago and I stick to 60mgs a day which does me just fine. I have NO side effects at this dose except for the possability that it is playing a part in my recent osteoporosis. I am still very unsure of that and I do read that it is a factor with all amphetamines. It may even be that it is better in that regard, then the other amphetamines.

I suppose it is tempting to take more sometimes, but I know this drug is EXTREAMLY tempting to abuse and even a little abuse will increase my tolerance resulting in it becoming ineffective at 60 mgs.

If that happened, I would not be abe to get it from my doc, but only from the street and I cannot afford that and do not want to be buying street drugs anyway, so it would mean abuse = N. And I will not let that happen.

I think I would prefer death to sinking back into that blur of a world that is my N.

The other drugs I have read about are new to me, and I intend to do more reading and possibly try them.

In closing, I wish to strongly suggest you approach your doctor. Unless you have a history of abuse, a good doctor should prescribe it if they have you best interests in mind and know what they are doing. If they are still reluctant then I suggest you enter into an agreement such as mine. I have even heard of people making such an agreement written.

BTW. I have read that 90 mgs was/is a common dose, but I have not had the need to go that high.

CM

#2 bagpuss

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Posted 12 December 2007 - 06:47 PM

HI.VERY NEW TO THE SITE BUT TOTALY AGREE WITH ALL OF THE ABOVE IVE BEEN ON 60MGS DEXEDRINE FOR A YEAR NOW AFTER TRING EVERYTHING ELSE ,THEY ARE BEHIND THE TIMES HERE IN ENGLAND.EVERY 3 TO 4 MONTHS I REDUCE MY DOSSAGE FOR A COUPLE OF DAYS (BE VERY CAREFUL U HAVE A ROUGH TIME) BUT IT STOPS U BECOMING IMMUNE TO IT . DOCTORS DONT AGREE TO THIS ,BUT THEY DONT HAVE TO LIVE(SLEEP)OUR LIFES