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How Long Does It Take?

xyremmedicine titrate tired months how long feel better drugs narcolepsy friend

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#1 b.chrissie@yahoo.com

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Posted 15 November 2013 - 10:06 AM

I could really use a narcolepsy friend these days. How long is it going to take until I feel better? From reading these forums, which are a god send, I know the consensus it that it takes a while to find the right "cocktail" and everyone is different, but how long did it take all of you, on average, to find it? I have Narcolepsy with EDS, sleep latency is 2, SOREMS is 4 and I have anxiety disorder (which I feel might dissipate if I ever get my sleep under control). Below is a brief synopsis of my journey so far:

  • 1st try was 250 mg of Nuvigil once daily - I stopped after four days, I was really angry and anxious and experienced mania
  • 2 was concerta - this had no effect, positive or negative. Even after I doubled the dosage
  • 3 was 50 mg of Nuvigil twice daily - it took longer but the same side effects crept up
  • At 4, I decided to try natural. I did a bunch of research on vitamins and herbs and was taking about 15 different ones a day, this did almost nothing sadly.
  • 5 was Xyrem starting at 2.25 twice daily and increasing .75 each week - I wet the bed once at 3.75 and once at 4.5 and that was it for me
  • At this point my sleep doctor said we exhausted all the options...I called BS and found a new doctor
  • New doc wants me at 2.25 twice a night for a month and 5mg of Ritalin twice daily as needed. So far on this, I have mostly slept through the second dose. I started using a loud alarm for my second dose and put it in another room which has been working but it also wakes up my boyfriend which I think stinks. The Ritalin gives me a tiny bit of energy, but it is minimal and lasts only about two hours. This has been going on roughly two weeks, though I did take a few nights off from the Xyrem.

I am at the end of my rope here. I am so tired of being tired and the therapies have really drastic side effects. I don't know how much more I can take...This consumes me every single day almost every moment of the day.

How far away is the light at the end of this exhausting tunnel?

 



#2 Potato

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Posted 16 November 2013 - 03:54 AM

Well I feel your pain as I'm still searching for the right combination of meds myself several months later. And I really don't have time to be dealing with new medications and their side effects, either. But, what other choice is there, really? Without Adderall, which is only moderately effective at best, I literally have to force myself to do everything, even things that are enjoyable. I would much rather sit down and rest at any given moment, but that's just not an option if I'm to lead any sort of meaningful life. You just have to be resilient, press on with what needs doing, and hope that you find the best treatment sooner rather than later. Keeping anxiety at bay is extremely important, because it can be very disabling itself, especially if you become anxious and frustrated over your own fatigue. I try not to develop anxiety/frustration over my fatigue because that's just going to drop my productivity to zero. Instead I just make lists of things that need doing and cross them off one by one until I'm essentially too stupid or too physically exhausted to continue. That way at the end of the day I might not be able to find happiness and pride in how great I felt during the day, but I can at least feel good about being productive. Even doing a load of dishes earns a gold star in my book, anything but sitting around allowing myself to act like a zombie, even if I feel like one most of the time.

 

Coping aside, you still have numerous drugs to try. All of them can be lumped into two broad categories. They either help you be more alert during the day, or sleep better at night. Drugs that help you be more alert during the day include SNRIs, NDRIs, DRIs, NRIs, traditional stimulants, nontraditional stimulants. Drugs that can help you sleep better at night are even more exhaustive and include SSRIs, SRIs, tricyclics, tetracyclics, melatonergics, benzodiazepines, GABA agonists, central H1 receptor inverse agonists, a-2 adrenoreceptor agonists... and I'm sure I'm forgetting others. And those are just types of drugs. Most of those categories include several drugs on their own. So on the drug front the bad news is we can't predict what will work best and it may take a long time to find the right combination, the good news is there's no lack of options to try...



#3 supertired

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Posted 16 November 2013 - 06:39 AM

Remeron, Concerta, Lexapro, and Xanax helped me.  It took me 5 years to find this combination.

 

Go to the Stanford site and there is a list of medications to try.

 

http://med.stanford....edications.html

 

Try them all or combinations and be patient.  I just stumbled on my combination and I was going through the same thing you are going through now.

 

I've heard good things about Deplin and this has helped me in the past.  I am going to go to a new doctor and get that prescribed as well to help the anti-depressant affect.



#4 ironhands

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Posted 16 November 2013 - 10:02 AM

We all just want to feel better, and I know at some times the light at the end of the tunnel keeps getting closer, and then further away with each new treatment option.

 

Paxil, for me, was a godsend.  I have *never* felt better in my life than when I was on Paxil, but that was the mania talking.  Caused me even more depression sometimes, intense anger, my sleep was longer, I was dreaming non-stop, but I generally felt more awake and alive.  Had to stop when any time I lay down I felt like I was floating.

 

Wellbutrin kept me up all night for days on end until I couldn't stay awake and would sleep away 48 hours, and fall asleep at my desk at work.

 

Cipralex managed things nicely, but the EDS was severe, and even ritalin to compensate didn't help, and again, irritability.

 

I had moderate success with alcohol on weekends to give me the energy to get outta bed, and kept my mood pretty stable, but about a year ago I completely lost all tolerance and I can't have more than 2-3 drinks before passing out now, with a wicked hangover the next day.

 

Nicotine has *really* helped with my mood, no irritability, but I'm still tired as *eff*.  I'm confident that a stimulant will fix me right up, given my symptoms are pretty mild compared to others, and in that I'm pretty lucky all things considered.  I'm worried my doc will want me back on an anti-depressant, but it'd likely be and old-school one, and the side effects can be pretty rough, primarily appetite stimulating, which is already an issue for me.

 

Sadly, there's no magic bullet, maybe there will be eventually, but for now, it's a matter of trial and error.  

 

Stick with it, you will find some relief, and have tonnes of compassionate support here on your journey.



#5 b.chrissie@yahoo.com

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Posted 18 November 2013 - 11:58 AM

Thanks for all the feedback guys, I really appreciate it.



#6 supertired

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Posted 03 December 2013 - 01:19 AM

b.chrissie,  try to manage your expectations.  I've read the quality of life for people with N is about the same as someone with epilepsy or Parkinson's disease.  I read on the Stanford website that the best you could get was 80% of that of a regular person.

 

that's been tough for me to expect and it's discouraging to me.  I have to take it one day at a time as each morning feels like it is stating over again.

 

Try adding Deplin to the mix.  It's a medical food by prescrition only for Vitamin B but it helps make anti-depressants to be more effective.  I had good results with it.



#7 b.chrissie@yahoo.com

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Posted 03 December 2013 - 08:23 AM

Thanks Supertired...I know it sucks, but sometimes the truth is what we need to hear. I am just learning to deal with the fact that this isn't going anywhere. But you are exactly right, I need to lessen my expectations thereby lessening my disappointment. I need to cherish the good days too.

 

Many folks on here have mentioned deplin, I am definitely going to bring it up to my doc when i call him in a few weeks.

 

Thank you for your post! This site has been a huge help in trying to deal with this mess. Sometimes I think I might be happier not knowing...how bout you guys?



#8 browndog319

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Posted 03 December 2013 - 11:25 PM

I am so glad I found this site... actually the Xyrem mentor recommended it to me. She was the first person with narcolepsy I'd ever spoken with. Whenever I told a friend what I had, they would act like they thought I was lying. Because of the stimulants and the amount of caffeine I consume, I can do a very good impersonation of a very energetic person. However, when I need to be alone and rest, I need to do it and I can't bear to be with other people. So it's great to find out there are people who understand the pain of not being able to live like I want to live. I'm not REALLY a tired person... the stimulant/caffeine person I impersonate is who I want to be all the time and I hate when I can't be that person.

 

I think it's better to know the truth. And I have learned from this site how little I know - I'm impressed by how so many all of you know about what happened on all of your sleep study results. I go back to my doctor on 12/23 and I'm going to ask him about some of these details because I do want to know the truth.

 

This is a really tough chronic disease because it's one that is debilitating in it's worst form but doesn't look like you should be debilitated so you just look lazy. It affects your quality of life but it also affects your health eventually because without good sleep you may gain weight and the diseases that go along with that. When my doctor suggested Xyrem, it was because I said, "look, all I want is to wake up one morning and feel like I got a good night sleep. Why isn't there something that can do THAT?" And the one thing that can SORT OF do that gives me a haze of nausea at the lower doses after about 5 - 6 days. Boooo.

 

I want to know the truth. The truth really stinks sometimes. But lately I've found this site really helpful.



#9 b.chrissie@yahoo.com

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Posted 04 December 2013 - 09:57 AM

I can't tell you how many times I have said the same thing. I just want to wake up and be awake...stay awake. For the longest time prior to my diagnosis I took so much crap for always sleeping. My boyfriend especially. We do just come across as lazy to those who don't get it. Like we don't beat ourselves up enough over it.

 

I am so grateful to have you guys and this site, it really gets me through some tough times.



#10 Jennell

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Posted 05 December 2013 - 10:35 AM

I am so glad I found this site... actually the Xyrem mentor recommended it to me. She was the first person with narcolepsy I'd ever spoken with. Whenever I told a friend what I had, they would act like they thought I was lying. Because of the stimulants and the amount of caffeine I consume, I can do a very good impersonation of a very energetic person. However, when I need to be alone and rest, I need to do it and I can't bear to be with other people. So it's great to find out there are people who understand the pain of not being able to live like I want to live. I'm not REALLY a tired person... the stimulant/caffeine person I impersonate is who I want to be all the time and I hate when I can't be that person.

 

I think it's better to know the truth. And I have learned from this site how little I know - I'm impressed by how so many all of you know about what happened on all of your sleep study results. I go back to my doctor on 12/23 and I'm going to ask him about some of these details because I do want to know the truth.

 

This is a really tough chronic disease because it's one that is debilitating in it's worst form but doesn't look like you should be debilitated so you just look lazy. It affects your quality of life but it also affects your health eventually because without good sleep you may gain weight and the diseases that go along with that. When my doctor suggested Xyrem, it was because I said, "look, all I want is to wake up one morning and feel like I got a good night sleep. Why isn't there something that can do THAT?" And the one thing that can SORT OF do that gives me a haze of nausea at the lower doses after about 5 - 6 days. Boooo.

 

I want to know the truth. The truth really stinks sometimes. But lately I've found this site really helpfu

 

 

 

I know EXACTLY what you mean about the "impression of an energetic person!" Ya sure after six stimulants I'm hunky dorey (and maybe sometimes I slip some more in!!), but oh yes, the moment the crash begins I just cannot be around anyone or do anything and I have to just bolt! Obviously this has caused issues especially when it's happened on the job. :( 

 

The xyrem dose up or titillation or whatever the heck the term is was one of THE roughest things I've ever done - horrible horrible side effects, BUT after I tasted refreshing sleep that first night, oh talk about the soothing balm to a weary soul!!! Oh my, I would have done the Greek myth thing of crazy heroic acts to keep that!! Nothing was going to stop me from getting used to it. And ya, I had to take five weeks off of work and barely survived a few weeks before and after that!! But, wow, now I can actually WAKE UP! I no longer CRAVE sleep the way I used to...don't get me wrong - still exhausted and trying to figure out the stimulants maybe, but it's not the same. I don't have the same desparate craving for sleep that I used to have. I can wake up with one alarm instead of five. :) 

 

I just really identify with that frustration of not being able to be the energetic person you WANT to be!! After surgery last month which was preceded by two months of debilitating vertigo - I'm just so weak and worn out and I'm so very frustrated by it all.

 

I moved to a second floor apartment Saturday and had some guys helping - ONE trip UP the stairs - and I knew I was DONE!! I felt SO very terrible and ashamed at how very little I was able to do. Of course I made the mistake of three hours sleep the night before. And the new roommate was befuddled by my brain deadness...ahh I hope it's just a recovery period I'm in now and I can get back to that energetic person even if it is only thru stimulants.

 

I used to be the last one to leave and it's been so sad to me that recently I've been one of the first to leave, especially when it's people and situations I REALLY do enjoy and love. Ahh Sigh. :-/



#11 browndog319

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Posted 08 December 2013 - 07:59 PM

I know EXACTLY what you mean about the "impression of an energetic person!" Ya sure after six stimulants I'm hunky dorey (and maybe sometimes I slip some more in!!), but oh yes, the moment the crash begins I just cannot be around anyone or do anything and I have to just bolt! Obviously this has caused issues especially when it's happened on the job. :(

 

The xyrem dose up or titillation or whatever the heck the term is was one of THE roughest things I've ever done - horrible horrible side effects, BUT after I tasted refreshing sleep that first night, oh talk about the soothing balm to a weary soul!!! Oh my, I would have done the Greek myth thing of crazy heroic acts to keep that!! Nothing was going to stop me from getting used to it. And ya, I had to take five weeks off of work and barely survived a few weeks before and after that!! But, wow, now I can actually WAKE UP! I no longer CRAVE sleep the way I used to...don't get me wrong - still exhausted and trying to figure out the stimulants maybe, but it's not the same. I don't have the same desparate craving for sleep that I used to have. I can wake up with one alarm instead of five. :)

 

I just really identify with that frustration of not being able to be the energetic person you WANT to be!! After surgery last month which was preceded by two months of debilitating vertigo - I'm just so weak and worn out and I'm so very frustrated by it all.

 

I moved to a second floor apartment Saturday and had some guys helping - ONE trip UP the stairs - and I knew I was DONE!! I felt SO very terrible and ashamed at how very little I was able to do. Of course I made the mistake of three hours sleep the night before. And the new roommate was befuddled by my brain deadness...ahh I hope it's just a recovery period I'm in now and I can get back to that energetic person even if it is only thru stimulants.

 

I used to be the last one to leave and it's been so sad to me that recently I've been one of the first to leave, especially when it's people and situations I REALLY do enjoy and love. Ahh Sigh. :-/

I can't tell you how many times I've had to leave early to just get sleep even when having a blast with my best friends. And now that I'm old, it feels like it's so much harder or that it's gotten worse.



#12 supertired

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Posted 09 December 2013 - 06:48 AM

I'm glad Xyrem is working for you.

 

I'm living in Dubai now.  I can't get any stimulants like adderall here.  Nor can I get Xyrem.

 

I was doing well on the anti-depressant Remeron and Cipralex for while but that has worn off.  So it's back to being tired all the time.  I really hate this disease.  It's so discouraging waking up every day and feeling just as tired as when I went to sleep.

 

It's starting to really wear me down and down and down...



#13 Jennell

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Posted 09 December 2013 - 10:46 AM

I'm glad Xyrem is working for you.

 

I'm living in Dubai now.  I can't get any stimulants like adderall here.  Nor can I get Xyrem.

 

I was doing well on the anti-depressant Remeron and Cipralex for while but that has worn off.  So it's back to being tired all the time.  I really hate this disease.  It's so discouraging waking up every day and feeling just as tired as when I went to sleep.

 

It's starting to really wear me down and down and down...

 

 

Wow, it's really rough to not be able to get the meds!! Last summer just before receiving the diagnosis, I just felt worn down to the nub with fatigue, felt like it seeped into my bones and I'd never be free of it. I identify with the getting worn down, down down :(  Sure hope you're able to find something that can counteract the exhaustion that is allowed.







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