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#1 Hank

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Posted 09 March 2013 - 02:44 PM

I have recently gone through a medication overhaul and I feel like this is the right approach for me for now.

 

Following a long push for a diagnosis, I was diagnosed with Narcolepsy with Cataplexy. I had been tried on multiple medications and doses to the point that it was difficult to tell a symptom from a side effect or drug interaction.

 

I was on Xyrem from July to January. Xyrem did manage Cataplexy effectively and almost eliminated EDS. Although I have been discontinued on Xyrem, I am still benefiting from almost non-existent EDS- really a miracle drug for me. While on Xyrem, I moved from Adderall to Nuvigil/Provigil.

 

While on Xyrem and Provigil/Nuvigil, my personality was just not the same. My symptoms were reduce and almost eliminated, but I began struggling with Depression and Anxiety. This was new for me and a real problem. I was also struggling with reduced appetite and weight- I had great difficulty maintaining and gaining weight and I looked way too skinny.

 

I switched to Effexor XR (SNRI) which is effective for Depression/Anxiety and also reduces Cataplexy. I am also on Trazadone at night for sleep. I am not currently on any medication for EDS (thank you Xyrem) and managing that with lifestyle adjustments.

 

i have my personality back- I have a sense of humor again. Wahoo. I have a healthy appetite. I have started running again. I sleep a solid 8+ uninterrupted/restful hours of sleep with Trazadone. Cataplexy is well managed. Overall, I feel like I do not have this illness.

 

I do not know how long the benefits of Xyrem will continue to last. It seems to have dug me out of a deep hole from a massive sleep dept. For right now, I am thankful for whatever I have for as long as I have it. If and when my crushing sleepiness returns, I will certainly consider another try with Xyrem- even though I did not respond well for the long haul, it was well worth the try.



#2 MINItron

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Posted 09 March 2013 - 04:43 PM

It's great to hear that you have gotten your life back, even if it is only temporary. Is there a possibility that the depression/anxiety were caused by the Vigils and not the Xyrem? Or maybe the combination? Perhaps in the future you might be able to take Xyrem without a Vigil, and avoid the personality problems. 

 

Maintaining your weight while on Xyrem seems to be something that many struggle with. I wish they would put me on it so I could lose some weight. hehe



#3 munky

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Posted 09 March 2013 - 09:11 PM

"LIKE!"

 

For both of you.

 

Hank: So very glad to hear you've found a combination that seems to be working for you! I hope it stays that way for at least a very long time!

 

MINItron: The bit about Xyrem and weight? I'm with you on that. I have been surprised, though, by how Nuvigil has affected my appetite. Adding that was the only change to my life/medication regimen, and I find I just can't eat as much anymore, at least not on the days I'm taking it. The 2-3 days every week that I don't take it, I eat as much as I ever did--though I'm trying to be better about that--but the days I'm on the meds, I just don't have as much of an appetite.

 

Don't get me wrong, even when I'm eating too much, it's generally healthy food. We cook at home, don't do a lot of eating out, and don't eat a lot of processed foods. We've always got some kind of fruit in the house for snacks. I'm not a big fan of fruit, with a few exceptions, but I've found a liking for dried fruit, so I eat a lot of that. But my weight's been pretty much stable for a while, until I started taking the Nuvigil. In the few months since I started taking it, I've lost 7 lbs! Not a huge amount, I know, but more than I'd managed in the previous couple of years--including the summer I played Rugby--so it made both me and my primary care doctor very happy. I still have another 75 lbs. or so to lose, though.



#4 DeathRabbit

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Posted 10 March 2013 - 01:47 PM

I think the salt in Xyrem really check mates your digestive system and causes serious malabsorption issues. Despite eating 2500 calories a day, I felt like I was wasting away, losing about a pound a week on average. And it's completely retarded because if we could just use actual GHB, it wouldnt be an issue. How the hell can you ban GHB anyway, it's a natural neurotransmitter. I guess were all technically brewing a schedule 1 narcotic constantly. They should throw us in jail. I even suspect the salt has some thing to do with the anxiety, as massive salt intake is known to cause mania and hypomania. Hence why people go insane when they drink sea water.



#5 Hank

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Posted 10 March 2013 - 03:02 PM

It's great to hear that you have gotten your life back, even if it is only temporary. Is there a possibility that the depression/anxiety were caused by the Vigils and not the Xyrem? Or maybe the combination? Perhaps in the future you might be able to take Xyrem without a Vigil, and avoid the personality problems. 

 

Maintaining your weight while on Xyrem seems to be something that many struggle with. I wish they would put me on it so I could lose some weight. hehe

It has been hard for me to tell a symptom  from a side effect from an interaction. I tried Provigil for several months a year ago (while I was also on Adderall, but not yet on Xyrem). I used only Provigil on the weekends. I discontinued Provigil because I did not like the way I felt on it- foggy, unreal, distant. This past November (while on Xyrem), I discontinued Adderall  and  tried Nuvigil and I went downhill fast into a deep depression with over-the-top anxiety. So, I agree that the Vigils are the likely culprit there.

 

Xyrem was a wonder drug, but the weight issue and lifestyle adjustments to take it were not a good fit for me now.

 

I hope nobody will be discouraged by my comments as a reason not to try these medications. This illness and these medications are not "one size fits all". I have had to try on a lot of medications to find ones that fit- at least for now- until I grow out of them. I am encouraged that I actually feel better than I can remember - I did  not think it was possible- Wahoo. Be encouraged by that.



#6 DeathRabbit

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Posted 10 March 2013 - 07:52 PM

I know Xyrem itself nearly caused a complete nervous breakdown. They had to put me on lamictal and Xanax to stable my mood, even months after stopping. I'm betting it was a multiplier effect that the Vigil had on the Xyrem in your case.

 

On another note, the lamictal seems to have almost erased my brain fog and chronic migraines. Now I'm just sleepy all the time. Which I can deal with. It's the complete zomibified achey head feeling that was ruining my life.



#7 Hank

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Posted 11 March 2013 - 06:50 PM

I know Xyrem itself nearly caused a complete nervous breakdown. They had to put me on lamictal and Xanax to stable my mood, even months after stopping. I'm betting it was a multiplier effect that the Vigil had on the Xyrem in your case.

 

On another note, the lamictal seems to have almost erased my brain fog and chronic migraines. Now I'm just sleepy all the time. Which I can deal with. It's the complete zomibified achey head feeling that was ruining my life.

I am really glad for you that the brain fog has lifted for you- life is more fun without that for sure.



#8 ZombiePrincess

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Posted 14 March 2013 - 07:39 AM

Hi Hank. I just wanted to say that I can really relate to your experience with Xyrem. It's been a miracle drug for me too but I also had major anxiety/depression issues for the first time. I tried everything from Cymbalta, Effexor, Lexipro, and most recently Prozac. Nothing seems to have helped and I've just had to learn how to manage it on my own. The depression seems to have ceased but I still struggle with anxiety; however I've recently discovered Adivan which has helped a lot.

I personally believe Xyrem is absolutely responsible for the positive and negatives of my condition with N. but I also think you might be on to something about the sleep debt being paid so I think I might try to take a break from Xyrem to see if the effects continue without the depression/anxiety side effects. Thanks for the post!

#9 Hank

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Posted 15 March 2013 - 11:35 AM

Hi Hank. I just wanted to say that I can really relate to your experience with Xyrem. It's been a miracle drug for me too but I also had major anxiety/depression issues for the first time. I tried everything from Cymbalta, Effexor, Lexipro, and most recently Prozac. Nothing seems to have helped and I've just had to learn how to manage it on my own. The depression seems to have ceased but I still struggle with anxiety; however I've recently discovered Adivan which has helped a lot.

I personally believe Xyrem is absolutely responsible for the positive and negatives of my condition with N. but I also think you might be on to something about the sleep debt being paid so I think I might try to take a break from Xyrem to see if the effects continue without the depression/anxiety side effects. Thanks for the post!

ZP- Please be careful with Ativan and educate yourself. It is a Benzodiazapine. Discontinuing Benzos requires a long slow taper of 6+ months. I had been prescribed Klonopin for a misdiagnosis of Narcolepsy. While it did help me sleep at night, it took 6 months to get off it and another six months before I had my brain back. There are safer alternatives. Many people never get off Benzos because of what I experienced. If I had known, I would never have gone through it. http://recovery-road.org/