Blhennessey

What medicines work best?!

11 posts in this topic

So I've been diagnosed for a few years, and have tried so many different medicines I feel like I've lost hope. 

I started on nuvigil.. went up to I believe 450 mg a day.. didn't do anything

switched to provigil, 600 mg a day was better but still out of it

then tried a combo of 600 pv and 150 nv with no change.. my mind was active, my body dragged

then provigil 600 mg and Ritalin 40 mg the Ritalin didn't last more than an hour or two.. (also tried XR, lasted too long)

now I'm on adderall 50 mg. And I feel stupid. I'm awake, which is why I continue to be on it, but I can't manage my time. I focus on one thing and take hours doing it. I've become slow at work because of this. And I'm starting to build tolerence. Adderall is horrible for the brain amongst other organs, and I can't be on this for the rest of my life (I'm 26)

 

i just feel feel like I've lost hope in finding something that will help or make me feel normal. I used to be great at my job, and now I'm slower than a snail. I don't know what to do :( help!!!

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What are you taking for the nighttime sleep side of the equation? Are you N or N + C? Are you careful with good sleep hygiene and diet?

I'm 40 plus years older than you and still trying to figure out how to deal with N, but I'm still kickin', so keep the faith my friend. :) Caffeine and dark chocolate and exercise are good stimulants, but I realize they are not always enough.

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Sorry, weekends are hectic at work. I'm N+C. I don't take anything technically for sleep, my doctor has considered xyrem.. but he's he type to mention something one appointment and forget by the next so yeah.. I do smoke weed if I can't sleep on occasion.

 

i have a constant flow of caffeine, and chain smoke cigarettes when I drive or have downtime to stay awake.. tried quitting but it just made me even more tired.

i work with a girl who's a bit of a control freak, and she's "googled narcolepsy and it says you shouldn't drink caffeine" (idk where she found that *BEEP* lol) but she makes remarks about how slow I've become. She doesn't realize that I can't help it, and she constantly calls me lazy.. I cry enough when I'm alone about how being stuck like this.. never being able to experience "awake" for more than an hour.. and it's just making me more depressed. I can't say anything because when I do she comes back with these "facts" that I don't even think are real.

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3 hours ago, Blhennessey said:

i have a constant flow of caffeine, and chain smoke cigarettes when I drive or have downtime to stay awake.. tried quitting but it just made me even more tired.

A moderate amount of caffeine may be okay, but it is futile and counter-productive to try to overcome tolerance. Also, intake should be severely limited past midday in order to avoid affecting your sleep. Cacoa, or high cacoa, low sugar, chocolate, taken with your coffee should boost the effect and cacao is healthy food. 

Please quit smoking now! Thrive or Nicorette Lozenges (nicotine bitartrate dihydrate) may be used initially to help in the process. It can be done - I quit 3 years ago after 45 years of coffin-nail usage. Daily outdoor vigorous exercise (brisk walking/jogging/stairs) will help tremendously by producing natural endorphins in the brain. Since I could no longer smoke in the morning, I just got up early, did some stretches and hit the trail, and did it again in the pm as well. It works, but you must be determined and set a cold-turkey date. Very short-term relapses at the beginning are no reason for major concern - soon you will get in longer smoke-free periods and will be on your way and never look back.

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When you develop cataplexy, HBr, THEN you can dictate Nicotine usage... not before. I do not want anyone to smoke cigarettes either BUT since you have NO idea or experience what happens when nicotine is withdrawn from a person with cataplexy, I would suggest you take your holier than thou attitude down a notch. Sorry that you developed other health problems from smoking but you simply don't have cataplexy and cannot possibly relate.

Patch, gum, or vape. Be aware that Nicotine is not only lessening the severity of your cataplexy but is also acting as a stimulant. IF you withdraw it suddenly, you will go into rebound cataplexy (also called status cataplecticus) and it is very nasty to deal with. Take your normal cataplexy and multiply the frequency and severity by a factor of at least 10.

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You can even take the nicotine liquid for vaping and use it sublingually, though you need to be careful with dosage measuring, because the rapid absorption of nicotine makes it easy to OD. I've read about having medical emergencies from just spilling a nicotine concentrate on their hands not having the foresight to wash them immediately.

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BlHennessey

You mentioned that your physician has mentioned xyrem in the past. My opinion is that you remind him/her about the discussion and see if you can get started. Xyrem does not work for everyone but it is certainly worth a try.

Your stimulant consumption is worrisome at best perhaps if xyrem works for you then you may decrease or possibly be able to eliminate. It has been my experience that too often we forget to treat both the nighttime, as well as the daytime effects of this disorder, ultimately this will lead to failure. (my opinion only). Sleep hygiene, exercise, and diet are also extremely important in management of this disease. There is no magic pill, there is no cure, we can only attempt to manage the symptoms and severity.

I wish you the best of luck

 

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Xyrem is useful--IF your primary problem is cataplexy (and mild-to moderate hypersomnolence); and you have no co-morbidity(ies) that would be triggered/exacerbated by Xyrem's most common known side-effects (I do). But if, like me, daytime hypersomnolence is the MAIN issue --take a look at Zenzedi - which is similar to Dexedrine (my only option for nearly 20 yrs). Both are brand-versions of the generic dextro-amphetamine which (like ritilin, adderall, nuvigil, provigil) had a placebo effect on me.  However, unlike Dexedrine, Zenzedi won't cost you +$1k/month--IF you can find a neuro willing to write the script and a pharmacy willing to locate/secure the product.  For me, Zenzedi WORKS more effectively/consistently than Dexedrine ever did and, for the first time in YEARS, I can finally fill my monthly RX all year --instead of 1-2 months. Good luck!

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I JUST dropped a script off today (at Walmart--the "preferred" pharmacy of my medicare advtg plan).  As a tier 4 drug, my cost for zenzedi (10 mg/180 ct) is just under $300.00 THIS month (my insurance plan has a $300 deductible!); then $97.00 co-pay per month thereafter.  NOW, if I can get them to drop it down to a tier 3 drug, I will pay $47.00 THIS time and thereafter.  Of course, Walmart doesn't have it in stock..its on order--delivery next Wed or Friday (I'm out after tomorrow!). The brand manufacturer (Arbor) has a coupon (I wasn't eligible because I have fed disability benefits), but I checked and it's still posted here:  http://zenzedi.com/savings.php  (this is a second coupon that came up, fyi: https://www.helprx.info/zenzedi-discounts-coupons .  Finally, if you don't already, definitely check retail prices via goodrx.com -- the costs variance can be HUGE--for instance, I JUST looked up generic zenzedi ("dextroamphetamine" - same as Dexadrine)-since that's what you use: 10mg/180 ct--and the prices in my area range from $190.44 at Walgreens -- to $500.96 at Walmart!  (interestingly, the BRAND is $264.45 at Kroger (supermarket) - up to $1,286.78 at Walmart!!! (obviously, a little shopping around can save you a TON of cash!) Good luck with your search--I hope you soon find something that works well for you!  k

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