13 replies to this topic

[dane]

Hey there
I am a 27 year old male from Denmark in europa.
i hope that you can understand my writing, my english is a little bad.
I have bin diagnosed with narcolepsi 5 years ago. and have bin treated with ritalin.
But last year i found a way to skip half of my ritalin to 40 mg pr day and i feel more a wake now. i feel like getting a part of my life back.
Now i am looking for some people i usa who would be interested in trying my discovery.

if you are interrested in hearing more about it.
contact me on email : telkadennis@hotmail.com Ore skype : dennisdrejdal

best regards
DENNIS

[Toph4er]

And you can't say what it is here?

[dane]

And you can't say what it is here?

i have trouble finding the right words to eksplain, what it is. and then i am woried that you would not understand.
thats way...!

[greatbig47]

i have trouble finding the right words to eksplain, what it is. and then i am woried that you would not understand.
thats way...!

give it a try...
I'm currious too

[dane]

okay here goes.
2 years ago i got a bad shoulder, the doctors could not do much about it. one day a guy i talked to said that maby he could help me, and he told me about magnet sleep system, and i tryed it. my shoulder got better but the best thing was that i feelt more refreched when i woke up in the morning and during the day i had more energi then i use to, 14 days after i saw my docter in the hospital that had diagnosed my narcolepci and he said that it was posible that i could try to skip some of my ritalin to se what could happen. and to my big surprise nothing happend i still felt good. i was having 80 mg pr day but when i got from 40 mg to 30mg i could feel a difference, i got more tired again and started to feel like before. i have not heard of any one with narcolepci but me try it. and the reason i writing to americans is that the product is from calefornia in us.
I have talked to the man in usa about haveing some of you to try it. and maby if we got to know better he could lent some of you a sleep system and try if it works for you.

i am better talking english then writing it so if you have skype pleace call me. my skype name is: dennisdrejdal and i am from denmark

feel free to call.

hope you understand what i am writing

[greatbig47]

hope you understand what i am writing

Dane,

Your English is better than mine at times!

There have been skeptics of magnetic therapy as long as there have been believers. Most have had to deal with chronic pain issues.

It has been my understanding that ritalin takes time to deminish in your system, much like it takes time to see results when you first start taking it.

If it works for you, that is GREAT! That is what it is all about.

I wouldn't count it out completely, but I'd like to see some double-blind tests done.

I'd like to see MANY theories tested...especially the ones that couldn't hurt (like aural frequency therapy), but the funding just doesn't exist.

Thanks for sharing, D!

=Stu

[dane]

you could try it your self and se if it would work for you.
you have nothing to loose and it is free to try.

[AlwaysTired24]

I am a 26 year old female and I was diagnosed with Narcolepsy a few months ago. I was first diagnosed with UARS (UPPER AIRWAY RESISTANCE SYNDROME).

[AlwaysTired24]

I was on provigil for a few months. I was taking 400mg a day. After a few months it did not work anymore and I started to feel nauseous and dizzy after taking it. A new doctor then had me try Ritalin which did absolutely nothing. I never felt AWAKE even after taking 60mg. I have had numerous sleep studies and my new doctor wants to prescribe Xyrem to me but wont do it unless i have ANOTHER sleep study. I refuse to have a 5th study. I am just wondering if anybody on here has narcolepsy and is not currently on any medication.

[greatbig47]

I am just wondering if anybody on here has narcolepsy and is not currently on any medication.

Well, I'm pretty sure most of us have narcolepsy...and I do know of some who go drug free.
Day by day I admirer the drug-free way

I've recently taken a break from Xyrem.
Some nights it was great.
Other nights I felt like I was just trippin'
This might have been cool years ago, and once in awhile...
but every night...2X???

Whe I go drug-free, I have to remember to be social. Otherwise I stay indoors and do nothing but work.

[rantboy]

I was on provigil for a few months. I was taking 400mg a day. After a few months it did not work anymore and I started to feel nauseous and dizzy after taking it. A new doctor then had me try Ritalin which did absolutely nothing. I never felt AWAKE even after taking 60mg. I have had numerous sleep studies and my new doctor wants to prescribe Xyrem to me but wont do it unless i have ANOTHER sleep study. I refuse to have a 5th study. I am just wondering if anybody on here has narcolepsy and is not currently on any medication.

As to the 5th study...they just want the money. Good for refusing.
I have Narcolepsy and I am drug free. But I don't have a severe case. It started at age 14. Over time I have discouvered a pattern. I am on a 3 - 4 hour cycle approx. Up at 7Am, sleepy at 10Am. Not strong just slow thinking for 15 min to 1/2 hour. then OK. If I nap at that time it repeats at about same intensity at around 1 Pm. If I do not nap it repeats with more intensity. The nap can be as short as 5 min. I do it in the mens room with my head against the cubicle wall. I just need a short dream.

At about 3 or 4 I get it again. If I did not nap on the other 2 times it can be quite intense. Then again about 6 pm. If I have not napped the other times I fall asleep even while walking down the street. That's dangerous! So I devise ways to nap. It all seems related to the mini-dreams.

At age 17 I was prescribed Benzadreine- too violent. Then Dexadrine, still too strong. Then Dexidrine spansule - perfect! My doctor retired and moved away after I used for 1 year. No doctor will proscibe now. Considered addictive. I tried 'Black Beauty' s half dose (illegal drug culture version) much too strong. So now I rely on naps.

Rantboy

[Flaming Tiki]

I'm med free. This makes the second go around. (See post 'Alternative Medicine' for my story)

Rantboy, you've inspired me. I've never kept a sleep journal, heck, I'm having a hard enough time keeping a diet journal...but now I'm going to combine the two. Then maybe I could figure out a pattern I may have taken to. Thanks!

The magnetic therapy thing was interesting too. I know of one Dr everyone thought was a 'quack' in the early 1900's doing magnetic therapy healing. And yet, folks from all over the country and men/women of status sought out his help with medical needs. I have never tried it myself...perhaps I might add it to the list of things to try in the near future. Probably would be a far cheaper experiment than the Neurofeedback training I'd like to try.

Thanks for the insight and inspiration...

M.

[daffodil]

[quote name='dane' date='Jun 20 2008, 01:11 PM' post='3799']
Ahhh....the power of placebo.  Magnetic therapy has been debunked over and over.  Don't waste your money unless you are highly suggestible.  Penn&Teller have a show called Bull*BEEP* on Showtime.  They did a segment on this.  (I think it was season 1, but I don't recall which episode.  They have them all at netflix if you are a member.)  Too funny.

[Henry G]

Ahhh....the power of placebo. Magnetic therapy has been debunked over and over. Don't waste your money unless you are highly suggestible. Penn&Teller have a show called Bull*BEEP* on Showtime. They did a segment on this. (I think it was season 1, but I don't recall which episode. They have them all at netflix if you are a member.) Too funny.

Placebos works wonders if the condition is psychosomatic.
Like my once chronic asthma - which got reduced from 12 serious attack per year to roughly 3 mild attacks.

Problem with Narcolepsy is that it is not psychosomatic. At least mine isn't.
If I am happy, if I am sad, if I am angry - makes no difference as to when I may or not get a massive Narco-attack.

Mind you - if I am bored - I am more prone to EDS (but that is even with normal people).

What Placebo could do then is to "mitigate" the symptoms of Narcolepsy.
Say - you could be "suggested into" sleeping much deeper.
Or - you "alertness endurance" could be increased through primal instincts such as that of Love and Religion.

It will be common to all of us - at times - to suddenly believe we've found an answer. Ha! I am cured! Presto! And so you may feel obliged to let the whole world into your new finding.

But before doing just that - you should wait; for at least 6 months if not 1 year. It is not uncommon to suddenly fall into believing your N was suddenly magically cured - we are all too ready to jump into that comfort-zone of "woah thank goodness that is over now" (simply because it isn't). Give it good time and you will bounce back; because if you don't (in 6 months - 1 year) then yeah sure: it is your obligation to announce it to the whole world.

I believe in Placebos and I believe in Miracles. I've got to , I have to.
And moreover I believe a definite cure (or something more efficient than what is available at the moment) is pretty much near.