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At My Wits End-Will Medicine Ever Work?

tolerance Narcolepsy medication Narcolepsy treatment

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#1 dasikins

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Posted 18 March 2013 - 05:23 PM

My 50mg Vyvanse and 20 Dex booster and coffee helped greatly for 7 weeks with the fatigue, but also my apathy. Ugh now it's like I took a sugar pill. I had been taking at least one day off, but found with Vyvanse the half life is so long it has a build up effect. So taking the weekend off would take another 4 days for it to work correctly again. This time I used it for 11 days without an issue and the last 5 have been useless.

 

Is there anyone else that is apathetic, unmotivated, loses interest in things and has narcolepsy?

Does anyone have any advice for tolerance or if they switch between stims and Provigil, ect?

 

 

I am on an AD Pristiq which was amazing for 2 months, but I am back to my old self of being flat. I have tried other ADs, actually 10. 

 
Does Nuvigil help with mood (I have heard both) along with keeping you alert? 
 
Thanks guys, hopefully someone will have at least a story :)


#2 DeathRabbit

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Posted 19 March 2013 - 10:52 AM

Not to try to depress you, but you have a chronic disease. Unfortunately, you will never be your old self. Don't set the bar too high or you'll only meet with disappointment time and again.  :(  That being said, I think it helps to round robin the stimulants, by changing frequently which drug you take. As far as the anti-depressants go, I don't really know what to say. I never could really tell that they did much for my mood and long term Paxil usage effed me up pretty good for a while. I think it's possible it even caused or contributed to my narcolepsy, as SSRI discontinuation syndrome has caused an N like condition that has sometimes lasted for years, due to a semi-permanent REM rebound. But they can also do good things for your sleep architecture whilst on them. Maybe try TCA instead of the SNRI/SSRI type anti-depressant. I suppose you can ratchet up the dose of Pristiq, but I've become more of a fan of switching, rather than than just throwing more of the same at a problem. Finally, you could try an anti-convulsant. I haven't seen anywhere on the internet where it's been used on N/IH, but lamictal xr has done wonders for me. And don't forget that even normal people go through ups and downs. You have to find your own path to happiness, N/IH notwithstanding. The disease just unfortunately makes it hard to distinguish between symptoms or if you are actually doing something wrong in your life.



#3 dasikins

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Posted 24 March 2013 - 10:23 AM

Not to try to depress you, but you have a chronic disease. Unfortunately, you will never be your old self. Don't set the bar too high or you'll only meet with disappointment time and again.  :(  That being said, I think it helps to round robin the stimulants, by changing frequently which drug you take. As far as the anti-depressants go, I don't really know what to say. I never could really tell that they did much for my mood and long term Paxil usage effed me up pretty good for a while. I think it's possible it even caused or contributed to my narcolepsy, as SSRI discontinuation syndrome has caused an N like condition that has sometimes lasted for years, due to a semi-permanent REM rebound. But they can also do good things for your sleep architecture whilst on them. Maybe try TCA instead of the SNRI/SSRI type anti-depressant. I suppose you can ratchet up the dose of Pristiq, but I've become more of a fan of switching, rather than than just throwing more of the same at a problem. Finally, you could try an anti-convulsant. I haven't seen anywhere on the internet where it's been used on N/IH, but lamictal xr has done wonders for me. And don't forget that even normal people go through ups and downs. You have to find your own path to happiness, N/IH notwithstanding. The disease just unfortunately makes it hard to distinguish between symptoms or if you are actually doing something wrong in your life.

 

I just saw this Rabbit thank you!!!

 

I just had my MSLT Friday into Saturday. I was off my stimulants for 4 days. WOAH I guess things can always get worse. Not only did I fall asleep in 4/5 naps, I fell asleep in between each and every one lol. What a miserable experience the MSLT is :)

 

You are right about everything you said. Regardless of how much I meditate, eat right, exercise, and pin a medicine to my conditions, not every day is going to be great.

 

Yes, I wonder about the Serotonin discontinuation syndrome as well. Thankfully getting off of Pristiq is not as bad as Effexor. Getting of Effexor really changed me. My depression went from being up and down to a huge lack of motivation and severe apathy. At least with being up and down, my ups were nice. 

 

Thanks so much Rabitt for your reply. I will talk to my doc about switching stimulants. Makes sense and I will just take weekends off. Which stimulants did you find to be the most beneficial? I know you prefer no meds now, but when you were using them what were your thoughts?



#4 lilbrez51

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Posted 24 March 2013 - 03:16 PM

Hi, I have found that switching every 6 months or so makes a big difference. I had been pushing for quite a while to be able to try Desoxyn and I was finally approved! I have been taking it for 2 months now and Love it. This drug is so smooth, there are no ups and downs from it. I have actually been able to sit through a whole movie and stay awake. The only problem I am having is that it can effect your B/P. I have had no other problems. I just thought it might be worth your time to ask your Dr. to try it.
Good Luck, lilbrez51

#5 DeathRabbit

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Posted 25 March 2013 - 09:27 AM

I just saw this Rabbit thank you!!!

 

I just had my MSLT Friday into Saturday. I was off my stimulants for 4 days. WOAH I guess things can always get worse. Not only did I fall asleep in 4/5 naps, I fell asleep in between each and every one lol. What a miserable experience the MSLT is :)

 

You are right about everything you said. Regardless of how much I meditate, eat right, exercise, and pin a medicine to my conditions, not every day is going to be great.

 

Yes, I wonder about the Serotonin discontinuation syndrome as well. Thankfully getting off of Pristiq is not as bad as Effexor. Getting of Effexor really changed me. My depression went from being up and down to a huge lack of motivation and severe apathy. At least with being up and down, my ups were nice. 

 

Thanks so much Rabitt for your reply. I will talk to my doc about switching stimulants. Makes sense and I will just take weekends off. Which stimulants did you find to be the most beneficial? I know you prefer no meds now, but when you were using them what were your thoughts?

Well I guess the adderall worked for the longest (8 months). Then I switched to focalin and it only really seemed to work for 2-3 months. THose are the only two I've tried so I guess I don't have a very good recommendation for either.



#6 dasikins

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Posted 29 March 2013 - 12:59 AM

Hi, I have found that switching every 6 months or so makes a big difference. I had been pushing for quite a while to be able to try Desoxyn and I was finally approved! I have been taking it for 2 months now and Love it. This drug is so smooth, there are no ups and downs from it. I have actually been able to sit through a whole movie and stay awake. The only problem I am having is that it can effect your B/P. I have had no other problems. I just thought it might be worth your time to ask your Dr. to try it.
Good Luck, lilbrez51

 

 

Oh yes Desoxyn. I am sure at some point I will try that in the next how many years of my life. If nothing else because it's so taboo :) Thanks for the tip!



#7 dasikins

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Posted 29 March 2013 - 01:01 AM

Well I guess the adderall worked for the longest (8 months). Then I switched to focalin and it only really seemed to work for 2-3 months. THose are the only two I've tried so I guess I don't have a very good recommendation for either.

 

Oh well. I just got my results back and I am officially diagnosed and apparently with flying colors! It was the most miserable experience the MSLT. I kept falling asleep in between the damn naps!



#8 jenenpaz

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Posted 17 July 2013 - 08:45 AM

Hi fellow sleeping beauties. Xyrem has made a big difference in my life. I'm able to get 8 hrs of deep sleep and I wake feeling refreshed and ready to start the day. This alone helps alleviate some of the depression. I take effexor xr and Pristiq and control my depression fairly well with the two. I also take 10mg of adderall 2x a day for eds. It's important to try to get some kind of balance as the depression and eds play off of each other.

#9 lkl

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Posted 21 July 2013 - 03:54 AM

 I take effexor xr and Pristiq and control my depression fairly well with the two.

Do you take Efexor XR (Venlafaxine) and Pristiq (Desvenlafaxine) at the same time? That seems a bit unusual, since they are essentially the same medication, as Pristiq (Desvenlafaxine) is the active metabolite of Efexor (venlafaxine). That is Efexor, gets converted into Pristiq in the body. But I guess the more important thing is that your depression is under control.



#10 drago

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Posted 28 July 2013 - 11:43 PM

This sounds stupid, but have you ever tried having a 'wailing wall'?

 

Dunno where I got that particular term, but since strong emotions wipe me out (I don't have cataplexy, but strong emotins make me very, very, physically tired) I tend to bottle up things. Every once in a while I need a day where I yell and scream, cry, make no sense, and generally lash out at the cruelness of the world... then promptly fall asleep.

 

For some reason, this significantly reduces my apathy and depression. It also makes me feel better about my symptoms.

 

drago







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