8 replies to this topic

[MsMolly]

Well... I have been perusing the forums , reading these recent posts about taking Xyrem (& side-effects, etc) My 1st shipment was delivered 2 wks ago, but I haven't started taking it yet. The horrible side effects SO many people describe basically scare the $*%#! out of me; Especially the neurological stuff (sleep walking, bizarre dreams, etc.).
So now just I came across several mentions of excessively oily skin...! : ( . Probably not a big deal, compared w/other side effects (for most people), but this actually has me in tears atm. : (

I already have THE oiliest skin in the first place(!). I use those blotting papers every 2-3 hrs all day...and 1 blotting paper doesn't do it- I go through 2 each time. Just gross. I was already afraid/creeped out at the prospect of taking it. Just thinking about it gives me a stomachache). But now I really think the "cons" outweigh the possible "pro's" for me.
I am 44 yrs old,, & have had N w/C since I was 16. So I keep thinking, "I've lived with it this long already; why bother trying this stuff now? Especially when I haven't seen much evidence that it REALLY helps. I've only seen a few posts saying it has made a huge difference. It's really hard for me to be optimistic (about taking it). : (.

[sleepylune]

Well... I have been perusing the forums , reading these recent posts about taking Xyrem (& side-effects, etc) My 1st shipment was delivered 2 wks ago, but I haven't started taking it yet. The horrible side effects SO many people describe basically scare the $*%#! out of me; Especially the neurological stuff (sleep walking, bizarre dreams, etc.).
So now just I came across several mentions of excessively oily skin...! : ( . Probably not a big deal, compared w/other side effects (for most people), but this actually has me in tears atm. : (

I already have THE oiliest skin in the first place(!). I use those blotting papers every 2-3 hrs all day...and 1 blotting paper doesn't do it- I go through 2 each time. Just gross. I was already afraid/creeped out at the prospect of taking it. Just thinking about it gives me a stomachache). But now I really think the "cons" outweigh the possible "pro's" for me.
I am 44 yrs old,, & have had N w/C since I was 16. So I keep thinking, "I've lived with it this long already; why bother trying this stuff now? Especially when I haven't seen much evidence that it REALLY helps. I've only seen a few posts saying it has made a huge difference. It's really hard for me to be optimistic (about taking it). : (.

I've honestly had some horrible side effects at first, but now I'm feeling amazing. The first 2 months were rough to be sure, but I stuck it out and I'm glad I did. I really do feel amazing. Once I got my schedule and routine figured out it has been working really well for me. I started grad school a few weeks ago and I'm so glad that I started xyrem and got the side effects out of the way before I started classes. I am able to concentrate in 3+ hour classes and I can sit down and read for a couple of hours at a time, WITHOUT FALLING ASLEEP! I know that I came to this site and have posted many times about my side effects, but that was because my doctor honestly didn't know a lot of the answers. She said that of all her patients, I have been the only one to experience side effects like this. I know reading through all of these posts can be terrifying, but maybe we just don't post the "I feel great" posts enough! We come here when there is a problem and not enough when we are just feeling great and want to share. I hope this helps.

[Megssosleepy]

Well... I have been perusing the forums , reading these recent posts about taking Xyrem (& side-effects, etc) My 1st shipment was delivered 2 wks ago, but I haven't started taking it yet. The horrible side effects SO many people describe basically scare the $*%#! out of me; Especially the neurological stuff (sleep walking, bizarre dreams, etc.).
So now just I came across several mentions of excessively oily skin...! : ( . Probably not a big deal, compared w/other side effects (for most people), but this actually has me in tears atm. : (

I already have THE oiliest skin in the first place(!). I use those blotting papers every 2-3 hrs all day...and 1 blotting paper doesn't do it- I go through 2 each time. Just gross. I was already afraid/creeped out at the prospect of taking it. Just thinking about it gives me a stomachache). But now I really think the "cons" outweigh the possible "pro's" for me.
I am 44 yrs old,, & have had N w/C since I was 16. So I keep thinking, "I've lived with it this long already; why bother trying this stuff now? Especially when I haven't seen much evidence that it REALLY helps. I've only seen a few posts saying it has made a huge difference. It's really hard for me to be optimistic (about taking it). : (.

Don't worry about your skin, mine is back to normal if not drier! So that would be a positive for you!! For me I HATE HATE the side effects of all these drugs, but I got to tell you sleeping alllllllll night is amazing to me, I used to wake up 10+ times a night for now reason at all! Ive only been taking it for 2 months and reading the post scared me at first as well, and thats why my first night was such a mess... if someone had just told me to relax! lol So please just relax the small doses do suck, but think of what Sleepylune just said! Can you imagine if you were one of the lucky ones who could lead a normal life! Once your body is used to it! it will just been like taking a sip of salty water.
Despite the side effect when 10:00pm rolls around I am almost excited to go to bed... and thats with no relief from my EDS (YET)
My dreams have not been bad, very vivid but actually very enjoyable. I had a dream two nights ago that I was out on the town Laughing and having the best time! And met a whole bunch of people and was a wake and a normal 20-something... now thats a good dream! Especally since I do not go out anymore Id rather sleep!
SO GO FOR IT!! The worst that could happen really isnt that bad... feeling hungover? Shaky? a lil panic? Think if it worked!! Its worth the try!

[Hank]

Well... I have been perusing the forums , reading these recent posts about taking Xyrem (& side-effects, etc) My 1st shipment was delivered 2 wks ago, but I haven't started taking it yet. The horrible side effects SO many people describe basically scare the $*%#! out of me; Especially the neurological stuff (sleep walking, bizarre dreams, etc.).
So now just I came across several mentions of excessively oily skin...! : ( . Probably not a big deal, compared w/other side effects (for most people), but this actually has me in tears atm. : (

I already have THE oiliest skin in the first place(!). I use those blotting papers every 2-3 hrs all day...and 1 blotting paper doesn't do it- I go through 2 each time. Just gross. I was already afraid/creeped out at the prospect of taking it. Just thinking about it gives me a stomachache). But now I really think the "cons" outweigh the possible "pro's" for me.
I am 44 yrs old,, & have had N w/C since I was 16. So I keep thinking, "I've lived with it this long already; why bother trying this stuff now? Especially when I haven't seen much evidence that it REALLY helps. I've only seen a few posts saying it has made a huge difference. It's really hard for me to be optimistic (about taking it). : (.

I have been on Xyrem since July. I just started 4.5 x 2 last night. A gradual increase is necessary for your body to adjust to proper sleep. I am 46 and my first C was age 9. It is amazing that I am now consistently alert all day long. No more "crashes" or "waves of exhaustion" several times each day. I am getting consistently restful sleep. Night time has always been a roller coaster for me. I was recently concerned about oily skin. It has improved and I did not have acne. In fact, my skin looks healthier now than before. I have experienced no side effect that compares to living with this illness. I took one vacation day each week for several weeks when starting out on Xyrem. If it would help, plan a time when you can start. I am thankful to be at this point- I did not know I could feel this well. I never knew it was possible. I now know how hard living with N/C has been- but I never knew anything different. I love the difference. Nobody has all the side effects. And the thoughts of side effects play on our fears. Relaxing with a positive outlook really is helpful, so you don't create problems. Give yourself time- conquer you fears now. It has been worth it to me. I cannot allow myself to think what my life would be like if I had felt like this sooner. You will make your decision- but please don't let fears of the unknown stop you. We all express our concerns and fears here- but there is much more than that. The waiting room at an oncologists office is not the place to feel encouraged about cancer treatment. Check out some of the Blogs like Sleepywriter and REMrunner. I have found them very encouraging and both benefit from Xyrem.

[cloudtalk]

I don't really think of xyrem as having side effects. It only lasts in your system for four hours, and you are asleep during that time. But getting deep sleep after years of sleep deprivation is a shock to your system, and you have to adjust your diet because xyrem contains so much sodium. I think people probably get oily skin and night sweats and that sort of thing because they are still eating the same amount of sodium during the day/not balancing it out with the other electrolytes. So that's how your body tries to get rid of some of the excess sodium. I have had acne since I was like 11, and now I'm 25 and have been on xyrem for about a month and my skin looks better than it has in 14 years. Not getting deep sleep messes with everything in your body and life and mind. And you kind of adjust to that, so you can live with it. Xyrem suddenly flips everything around, and it can be really hard for your body/mind/life to get used to. But it will be so worth it if/when it works. Don't think of it as something that has bizarre, horrible side effects, because it doesn't. You might think it does, but that's just because you are freaking out. It's understandable to be scared about xyrem, especially after reading about it on the internet before you've tried it, but there is nothing to be afraid of. Things will just be very different, and that will take time to get used to. I mean, I think I'm starting to come to terms with xyrem. I'm not sure I'm right about this stuff. But it makes sense to me.

[Megssosleepy]

I agree, My doc and the internet made me afraid to take it... made it sound so scary... so the first night I freaked myself out!

On a side note I have even had a small glass of wine two hours before taking it and I was fine and dandy... They just want us to be smart and consistent.

Its not as scary as everyone made it seem... I am not sure why they did that to us! As I said before despite the minor/annoying side effects I actually look forward to taking it! And I also agree change your diet a bit and you will feel better as well!

[MsMolly]

Thanks for all the encouraging replies. It helps a lot to hear from people who've experienced positive results.

Sleepylune, you said the first 2 months were rough for you: Is that the "high end" of how long it could take to know if it's helping or not? While I understand that I may or may not end up having the "ickier" side effects....the thought of enduring them for 2 months is rather daunting : / ....
Does anyone know how long (rather, the longest) one needs to stick with it, to give it a proper chance?

[Hank]

Here's the thing- for Xyrem to work properly requires a gradual process. Some of the "side effects" seems to be a by-product of the gradual process. As I understand it, the initial dose is unpredictable because Xyrem is both a central nervous system depressant which causes Stage 3 sleep. That Stage 3 sleep releases Human Growth Hormone which is stimulating. So, this low dose can cause a short period of deep sleep followed by being wide awake. This is not a true side effect, the low initial dose is just not enough to acheive the desired effect. Once your body adjusts, you move up to the next dose. So, for me, the problem was not so much side effects, but enduring the unpredictability of the adjustments. For example, bed wetting was a concern for me when I read it was a side effect. I thought, great.. I now have a future of "Depends" to look forward to. That has not happened. However, I now understand what happens. During deep sleep, a hormone is released to supress urine production. Without enough deep sleep urine production remains close to that of daytime. So, if your body is producing urine, but you are too groggy to get up, it could happen. But once you are sleeping deeply enough, your body adjusts and can function as it was intended.

Xyrem holds you in deep sleep, which PWN cannot do on their own. While it is holding us in deep sleep, all the benefits of deep restorative sleep begin to happen as our bodies were designed. And it takes time for those benefits to build up night after night. So, from my understanding, many of the side effects are actually the incomplete benefits while we are waiting to achieve the maximum benefit.

My experience during the first 2 weeks on 2.25 x 2 is not my experience now on (finally) 4.5 x 2. My doctor helped me to have a good understanding of the process. This Forum was invaluable. There are many things we can do to improve the process and a lot we can do to mess it up. For me, no food for 3 hours before dose 1 was important in improving the results. My best suggestion would be to keep as much the same as possible each day. Same sleep/wake time. Doses at the same time. Same no food cut off time. Multi vitamins and potassium each day. All these things done consistently will remove a lot of the "could this be from........" concerns and reduce the unpredictability.

The best analogy I can think of is a garden hose. When it has a kink in it, the water does not flow, the plants start to wither, and the flowers/fruit fall off. Once the kink is straightened our, the water spits/spurts out air bubbles in the hose, the hose moves around, the plants get watered. But it takes time for the leaves to perk up, and the plant to recover. It is like that with Xyrem. N causes a kink in deep sleep. The initial low dose of Xyrem causes spurts of deep sleep. And once deep sleep is flowing, it takes a while for our bodies to recover.

So, for me, Xyrem is a medication that allows multiple processes to occurr as they were designed. Xyrem has been a lifesaver so far. I would have loved it if the process was shorter, but the process was worth the effort. I suggest setting your expectation realistically. Life with N is hard- PWN know hard and we do it every day with no ability to change it on our own. Starting Xyrem was somewhat hard, but there was a real hope of dramatic benefit. I committed to the process, sucked up the unpredictability, and I have benefited greatly from it. Nothing works for everyone- and this is a medication that requires user participation for sure. Xyrem requires a commitment to some lifestyle adjustments- but so does N and C. Well worth the trade for me.

[Megssosleepy]

Here's the thing- for Xyrem to work properly requires a gradual process. Some of the "side effects" seems to be a by-product of the gradual process. As I understand it, the initial dose is unpredictable because Xyrem is both a central nervous system depressant which causes Stage 3 sleep. That Stage 3 sleep releases Human Growth Hormone which is stimulating. So, this low dose can cause a short period of deep sleep followed by being wide awake. This is not a true side effect, the low initial dose is just not enough to acheive the desired effect. Once your body adjusts, you move up to the next dose. So, for me, the problem was not so much side effects, but enduring the unpredictability of the adjustments. For example, bed wetting was a concern for me when I read it was a side effect. I thought, great.. I now have a future of "Depends" to look forward to. That has not happened. However, I now understand what happens. During deep sleep, a hormone is released to supress urine production. Without enough deep sleep urine production remains close to that of daytime. So, if your body is producing urine, but you are too groggy to get up, it could happen. But once you are sleeping deeply enough, your body adjusts and can function as it was intended.

Xyrem holds you in deep sleep, which PWN cannot do on their own. While it is holding us in deep sleep, all the benefits of deep restorative sleep begin to happen as our bodies were designed. And it takes time for those benefits to build up night after night. So, from my understanding, many of the side effects are actually the incomplete benefits while we are waiting to achieve the maximum benefit.

My experience during the first 2 weeks on 2.25 x 2 is not my experience now on (finally) 4.5 x 2. My doctor helped me to have a good understanding of the process. This Forum was invaluable. There are many things we can do to improve the process and a lot we can do to mess it up. For me, no food for 3 hours before dose 1 was important in improving the results. My best suggestion would be to keep as much the same as possible each day. Same sleep/wake time. Doses at the same time. Same no food cut off time. Multi vitamins and potassium each day. All these things done consistently will remove a lot of the "could this be from........" concerns and reduce the unpredictability.

The best analogy I can think of is a garden hose. When it has a kink in it, the water does not flow, the plants start to wither, and the flowers/fruit fall off. Once the kink is straightened our, the water spits/spurts out air bubbles in the hose, the hose moves around, the plants get watered. But it takes time for the leaves to perk up, and the plant to recover. It is like that with Xyrem. N causes a kink in deep sleep. The initial low dose of Xyrem causes spurts of deep sleep. And once deep sleep is flowing, it takes a while for our bodies to recover.

So, for me, Xyrem is a medication that allows multiple processes to occurr as they were designed. Xyrem has been a lifesaver so far. I would have loved it if the process was shorter, but the process was worth the effort. I suggest setting your expectation realistically. Life with N is hard- PWN know hard and we do it every day with no ability to change it on our own. Starting Xyrem was somewhat hard, but there was a real hope of dramatic benefit. I committed to the process, sucked up the unpredictability, and I have benefited greatly from it. Nothing works for everyone- and this is a medication that requires user participation for sure. Xyrem requires a commitment to some lifestyle adjustments- but so does N and C. Well worth the trade for me.

This response made me feel all warm and fuzzy... I liked the hose analogy!

I have been looking at some of my "side effects" and I think you are correct... Its my body's way of getting used to getting sleep. I have also noticed my skin has been better then before and my hair and nails are back to growing fast and strong like I remember in middle school. lol

I am pretty sure its time to up my dose again, only sleeping 3 hours on each! I am going to stick it out until I know for sure if its helping my EDS. I have read in some other post that there is no set time to see results, some see it right away others have taken 6+ months. I have not seen improvement with my EDS but I haven't had much SP w/ H and my C is finally getting better. My mood has improved and just the fact that I wake once a night instead of a million times will keep me on it!!