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Newly Diagnosed-On A Search For Meds


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#1 Phoenix

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Posted 20 August 2013 - 04:14 PM

I keep reading about people having crappy doctors. I'm in NC and my doctor is great so far. It took a while to get the first appointment but that was on August 1st, sleep study and MSLT and the 14h & 15th, and they called me into the office on the 16th. Literally the day after my MSLT I was diagnosed with narcolepsy w/o cataplexy.

I was told that my first day of nuvigil 150 mg would be amazing and I would probably be more awake than in my entire life. I took it at 8 am and at 2:30 on my way to work is started nodding off while driving. I was pretty mad. My doctor said to give it 10 days but days 3&4 (today is 4) I've had chest pains and the nurse told me to not take it tomorrow and she would call back tomorrow with a new plan. Only tomorrow because my Dr. Is out of the office today.

My sleep latency was 2.5 minutes and REM latency 14. I know I'm not as bad off as others. No cataplexy, rarely sleep paralysis. Pretty much I just nod off after sitting for a length of time, and a general feel of exhaustion. If I go out to eat I always want to leave right away because I want to go home and lay down on the couch. And of course it's almost guaranteed I will fall asleep while a passenger in a car and prob a 70% of nodding off while driving.

I'm worried that when on any medication I won't feel AMAZING! Maybe my EDS is only slight and I only feel a little bit more tired than "normal" people and I'll never feel amazing. The nuvigil had NO effects other than the chest pains.

#2 Beckylaine

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Posted 20 August 2013 - 04:51 PM

I started nuvigil 50mg a couple weeks ago & have increased to 100mg. No difference yet. Still exhausted after work. I have to drive almost an hour to get my hair cut tomorrow & I'm super nervous. My mom brought me last time & before that I've been falling asleep.

#3 carliew31

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Posted 21 August 2013 - 10:12 PM

I too have recently been diagnosed, have been dealing with symptoms for 5 years. At first I was excited to find out that I had a diagnosis, but have quickly become frustrated. I have been on methylphenidate short acting and long acting and am not getting the results I was hoping for(being able to function like I used to, be motivated and enthusiastic like I used to be.) After a month i had a recheck with my Doc and told him the meds weren't helping vary much, but also told him I didn't know what to expect, I asked him if I should feel like I used to before I started having the symptoms or am I just suppose to get short bursts of help while I drive?( because driving safely is all he seems to be concerned about.) He told me that I will never go a day without knowing I have this disorder and that was a huge blow! He literally said to me, after telling him that the meds seemed to help for about an hour or two, "well that's good right? a couple hours of wakefulness" I could have slapped him! Sure its great ill just live every day feeling awake for 2 whole hours! No that's not going to work for me, so I would like to try nuvigil I have heard good things about it, but it doesn't sound like you are having any luck with it. I hope you and I both as well as all the people having to suffer with this stupid disorder find something that helps!!

#4 IdiopathicHypersomniac

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Posted 21 August 2013 - 11:02 PM

If you are having chest pains with Nuvigil, you must stop it immediately, as it could cause a heart attack.  I had that problem.  Take your pulse and BP if you try it again.



#5 willers

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Posted 12 October 2013 - 03:52 PM

 

I started nuvigil 50mg a couple weeks ago & have increased to 100mg. No difference yet. Still exhausted after work. I have to drive almost an hour to get my hair cut tomorrow & I'm super nervous. My mom brought me last time & before that I've been falling asleep.

 

you sure your nuvigil is real? It should work better than that

#6 Phoenix

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Posted 12 October 2013 - 05:43 PM

Yeah, I stopped the nuvigil and after an EKG from my primary dr. I was given 20 mg generic adderall xr. I don't feel ANY different while on it. However, I started it last Friday and went M-Th without falling asleep while driving. I started to lose focus a little bit yesterday while driving home at 3. I work in special education and a restaurant so when I'm at work I'm always on the go so that helps. Today I've not been on the go as much and I'm back to feeling tired, I just want to lay down.
I'm a tad disappointed with the meds. While I'm happy I went almost all week without falling asleep, I was expecting more wakefulness.

#7 Chemist

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Posted 12 October 2013 - 07:40 PM

Some people just don't respond to Nuvigil/Provigil. There might be multiple reasons for this, but the only known reason that I've come across so far is that in people who are homozygous for the COMT Val158Met allele increases in dopamine don't seem to improve wakefulness and the cognitive issues associated with EDS. A few studies have shown the Met/Met genotype to have reduced responses to stimulants in general, not just Nuvigil/Provigil.

 

Without going into too much detail, it's possible the issue is down to your genes, and if that is indeed the case then your response to all stimulants will probably be substantially reduced relative to others. Time, in combination with trying different dosages/stimulants, will show if this is the case. But even if you don't respond to stimulants, Xyrem might be of some benefit to you or certain types of antidepressants. Try not to get too discouraged just because one drug didn't work. We have more than just stimulants in our arsenal!



#8 Chemist

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Posted 12 October 2013 - 07:50 PM

Also, try 20mg of the Adderall instant release if you can. It's possible you'll get much more of a cognitive boost out of it, but for a shorter amount of time. Unfortunately a second dose probably won't bring you back to the same level you were at after the first dose. If you're a poor responder though, it might be about as much as you're going to get out of stimulants.



#9 doinmdirndest

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Posted 13 October 2013 - 01:24 AM

I dunno, chemist.  the manufacturer's recommended maximum dose for Adderall likely would get improved response for phoenix.  this = 60mg/d.  it shouldn't be hard to get the md to write an rx for that amt. 

 

going w/ir instead of xr makes sense.   



#10 Chemist

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Posted 13 October 2013 - 02:06 AM

I dunno, chemist.  the manufacturer's recommended maximum dose for Adderall likely would get improved response for phoenix.  this = 60mg/d.  it shouldn't be hard to get the md to write an rx for that amt. 

 

going w/ir instead of xr makes sense.   

 

I appreciate that your personal circumstances require you to use high levels of stimulants, but your situation is not generalizable to the majority of persons with narcolepsy. The dose-response curve for stimulants is not a linear one, in which case higher doses would yield increasingly better responses. This is particularly true in people who have the Met/Met genotype for the Val158Met allele. It's more often characterized as an inverted U response curve. This means there is a narrow range at which the response is maximized, above which no additional benefit exists and a negative response occurs.

 

Furthermore, it would absolutely be a problem for an MD to immediately write a Rx for 60mg without any titration whatsoever, and for good reason. Blood pressure and heart rate must be closely monitored when titrating up the amount of stimulant that is being prescribed. You always titrate up from lower doses, not only to watch for side effects, but also so you don't overshoot the peak of the response curve. Do not mistakenly think that if a little is good, then more is better. It's just not that simple.



#11 doinmdirndest

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Posted 13 October 2013 - 06:30 AM

ok, going to 60mg/d would have to follow 40mg/d or so.  yeah, my blood pressure was the #1 concern of the doctor that originally titrated me up to 300mg/d Adderall.  first order of business was taking my bp each visit.

 

  don't know about a u curve but there's definitely plateaus of lost response through which an upwards titration must be succeeded by another before a response is had, or in the case of lost response, a response is restored. 

 

that's how it's been for me at least.  I know most and possibly all others need less Adderall than I do .  it's plausible, but not possible to look into the matter which is of no importance to begin with, that i'm the world record holder for Adderall mg/d amt. 

 

nobody needs doses on par w/a potential record holder.  nevertheless it seems to me md's don't explore higher doses in many cases even on a far smaller scale than I get. this option, in small increments/upwards titrations, would likely benefit some of us.  it isn't on the table for quite a large percentage of pwn.   or so it appears from posts telling of eds w/treatment failing to keep patients' wakeful.   

 

I realize it's not possible to know all details of a given case via the patient's anonymized forum posting, yet I've read enough to know that there are those of us who could benefit from upwards titrations of wakefulness promoting medication who simply do not have this option, and in whom exsisting doses do not produce negative results.

 

close patient supervision to screen for contraindications is definnetely needed when titrating stimulants upwards.  for sure.



#12 b.chrissie@yahoo.com

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Posted 16 October 2013 - 12:54 PM

I am still on the hunt for the right fix. Tried high and low doses of Nuvigil and Concerta. The Nuvigil helped immensely with the N but wreaked havoc on my anxiety. I am now working my way up the doses of Xyrem. I have had the most positive reaction so far, but no where near the energy provided by Nuvigil. But for my mental health, the Xyrem is the best so far. I hope it works for me as it has for the folks I have read about. Fingers crossed.

 

Sometimes I think I was better off when I was exhausted and didn't know why. This has been a frustrating journey but one that I am trying to stay positive about.



#13 Sleeping Beauty2

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Posted 17 October 2013 - 02:21 PM

Hi all...

I am hoping one of you can help.

I was diagnosed with N 23 years ago as a freshman in college because of the horrible sleep paralysis but waited until I was sleep driving and sleep working before finally asking for official help.

 

I just finished 3 months with 20 mg of Ritalin as my stimulant 3 times a day and am now waiting to switch to Ritalin LA.  The insurance company will only approve 1 a day.  I have now been going without any stimulant for nearly a week while waiting and I am struggling.

Other than constantly drinking caffeine, do any of you have any stimulant suggestions while I wait out the insurance process?

Thanks in advance!



#14 ironhands

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Posted 17 October 2013 - 02:31 PM

can you get them to triple the dosage, and split the pills in half?  My doc did that once to keep my costs down



#15 Sleeping Beauty2

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Posted 17 October 2013 - 02:37 PM

I think I will call and ask... those nurses have to be so sick of hearing my voice on their voicemail by now.



#16 Phoenix

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Posted 17 October 2013 - 03:03 PM

I don't want more than the recommended amount of adderall. The max is 60 mg for a reason. Taking 300 mg/day is outrageous. Does everyone know about and take drug holidays? My dr told me two days off every 14 days on and I plan to stick to that. I might not FEEL like I'm wide awake but I'm not falling asleep while driving anymore and that's a huge relief. I've managed to (sometimes) ignore the cranky tired part and have fun for 27 years so I'm ok with having to do that forever as long as I'm not killing people in narcoleptic car accidents and not becoming addicted to stimulants

#17 Sleeping Beauty2

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Posted 17 October 2013 - 03:07 PM

I take weekends off, so 2 days off after every 5.  Those days I nearly almost sleep all day. 

I too like you am completely afraid of becoming an addict, which is why I just did every thing but medicate until I had to for 23 years.

I also don't drive after the sun goes down.  Fingers crossed one of these days I'll be able to stay awake in a car when it's dark but I do NOT want to take the chance until I find the right combination.