15 replies to this topic

[Narcguy56]

Hello everyone, I found out I had Narcolepsy about 4-5 years ago now and after a couple years of several different medications, we found a combination that MOSTLY eliminated the cataplexy. But that's about it. Since it's the most obvious and important issue, the doctors seem to think I'm content. But it's not completely gone, and I still get sleepy all day and sleep horribly at night. When I first went to them to start treatment, they told me about Xyrem but said that they did not want to give it to me if I didn't need it, so they were going to try a bunch of other stuff first. After reading so many good things about it, I really want to try it but I think that if I ask they will again say we should try more anti-depressants and blah blah. But, starting college in a few days, I am not at a point in my life where going to the doctor office every month and seeing how new meds affect me is a convenient thing. I only want to try this one because it supposedly works so well, and helps you sleep well at night (I currently wake up at least a dozen+ times a night). So I guess my question is, do you think they will let me try it if I'm insistent?

[sleepylune]

How sensitive are you to new medications? That will make a difference in whether you want to start it now before school or, say, at winter break when you have some time to adjust. It's your health and if you are still tired and sleeping poorly, do what you feel you need to do to take control back. Your doctor should be understanding that you don't want to drag through every day, especially starting school. I personally have had some pretty nasty side effects on xyrem but I'm still feeling so much better overall that it's been worth it. I'm also starting grad school in the fall so I started xyrem in June to allow some time to adjust, and I'm glad I did because it's taken my body awhile to understand what it means to have real sleep. I felt like as soon as I was diagnosed my doctors were pushing xyrem. I was hesitant and did not want to because I was scared and it took me almost 4 years of misery to finally give in. I've seen multiple sleep doctors and they have all pushed xyrem almost immediately so I'm surprised your doctor is so hesitant when you are clearly not getting enough relief on your current medication.

[Narcguy56]

I'm not sure what they think really. My doctors are.. odd. I'll probably go to them and see about starting it during winter break. I can make it through the day with a 15-30 minute nap to keep me from falling asleep at bad times right now. But the night time sleep is the problem. It's torture. I feel like sleeping at night just further exhausts me. Since as far back as I can remember my dreams have always been immediate and lucid, but they're changing now, I can't control them and they're chaotic and feel like they exhaust me even more than I was when I went to bed. I just want sweet, sweet unconsciousness for a few hours ya know? That's one thing I'm worried about by the way. When I take Xyrem.. I'm not going to dream like I usually do am I? That would be absolutely terrifying, with the lucid nightmares/hallucinations and all

[Megssosleepy]

I'm not sure what they think really. My doctors are.. odd. I'll probably go to them and see about starting it during winter break. I can make it through the day with a 15-30 minute nap to keep me from falling asleep at bad times right now. But the night time sleep is the problem. It's torture. I feel like sleeping at night just further exhausts me. Since as far back as I can remember my dreams have always been immediate and lucid, but they're changing now, I can't control them and they're chaotic and feel like they exhaust me even more than I was when I went to bed. I just want sweet, sweet unconsciousness for a few hours ya know? That's one thing I'm worried about by the way. When I take Xyrem.. I'm not going to dream like I usually do am I? That would be absolutely terrifying, with the lucid nightmares/hallucinations and all

I just started taking Xyrem about a week ago... the side effects were mild compared to the terrible time I have had with the 6 stimulate type drugs Ive tried. Like you my sleep at night was so broken, After the first night (terrible experience) I was able to pretty much sleep through the night... i do notice that the dose wears off a little fast, but i have to increase the dose veryyyyy slowly.
And something I do want to mention is... you will still dream, mine are as vivid as ever and make no sense what so ever... but I have not had SP so that's good.
Another thing is that for some reason my Cataplexy has gotten worse, but i think with continued use that will improve as well...
Good Luck!

[Hank]

I started Xyrem 3 weeks ago and have been on the 3g x2 dose for a few days. I will say that this is the most consistently well I have ever felt during the day. For the years between onset in childhood and my recent Dx, I felt pretty well between crashes but that never lasted more than a few hours. With Xyrem at this dose, I am beginning to feel good all day. I am not accustomed to this and it is much less stressful than before. I also went through several other medications while my sleep doctor observed my responses. Eventually, I was ready for Xyrem before she was, so I made my position clear. The frequent med changes, frustrating night sleep and general unpredictability was taking a toll on me. I rarely complain how I feel or I would always be complaining. But, stating facts to my doctor about my condition is not complaining- which is a freedom I enjoy with this accurate diagnosis. Sleep meds that are supposed to work quickly and last 8 hrs were like placebos to me- barely a dent. Physical exhaustion from hard exercise ( or parenthood) is the only thing that has helped me sleep at night. It has been hard to continually exhaust myself when I am already exhausted just trying to get the quality sleep I am incapable of getting. I have only noticed slight changes with C and I hope that will improve with time. The results were a little unpredictable with the 2.25x2 dose, and I was prepared for that. For as long as I can remember, I thought everyone felt like this and - shocker- they don't. I am now just on Adderall 30 mg and no longer need Provigil, which I do not care for. I also happily discontinued the tricyclic for C, which made my mouth feel like I had been licking stamps. If there is a possibility that you could feel better, it is worth trying to know.

[Narcguy56]

I started Xyrem 3 weeks ago and have been on the 3g x2 dose for a few days. I will say that this is the most consistently well I have ever felt during the day. For the years between onset in childhood and my recent Dx, I felt pretty well between crashes but that never lasted more than a few hours. With Xyrem at this dose, I am beginning to feel good all day. I am not accustomed to this and it is much less stressful than before. I also went through several other medications while my sleep doctor observed my responses. Eventually, I was ready for Xyrem before she was, so I made my position clear. The frequent med changes, frustrating night sleep and general unpredictability was taking a toll on me. I rarely complain how I feel or I would always be complaining. But, stating facts to my doctor about my condition is not complaining- which is a freedom I enjoy with this accurate diagnosis. Sleep meds that are supposed to work quickly and last 8 hrs were like placebos to me- barely a dent. Physical exhaustion from hard exercise ( or parenthood) is the only thing that has helped me sleep at night. It has been hard to continually exhaust myself when I am already exhausted just trying to get the quality sleep I am incapable of getting. I have only noticed slight changes with C and I hope that will improve with time. The results were a little unpredictable with the 2.25x2 dose, and I was prepared for that. For as long as I can remember, I thought everyone felt like this and - shocker- they don't. I am now just on Adderall 30 mg and no longer need Provigil, which I do not care for. I also happily discontinued the tricyclic for C, which made my mouth feel like I had been licking stamps. If there is a possibility that you could feel better, it is worth trying to know.

That's exactly how I feel! Been through several different anti-depressants and stuff already. I'm on Provigil and Protryptiline now. Protryptiline keeps the cataplexy tamed unless I do something that requires coordination, like throwing a football or catching a football. Also the protryptiline gives me major cotton mouth as well. Very annoying. But as far as I can tell, the provigil does not do anything. At almost any given time during the day, taking a nap sounds much better than anything else I can think of for entertainment. I don't go out much, don't like to. Just feel like being by myself most of the time. I'm sure it's not 100% the fault of the lack of good sleep, but I'm 100% it's atleast partly at fault. Just have no motivation to do anything really. Hopefully the xyrem will help! Think I'll probably get them to give it to me over Christmas break, so I can adjust to it a little before I start back at school.

[Hank]

It sounds like we have a few similarities in our symptoms and treatment. I was also prescribed protryptiline for C- apparently it is alerting instead of sedating and has been helpful. I started on Adderall XR about 1 year before diagnosis and it has helped with EDS significantly. You mentioned coordination regarding throwing a ball. Do you consider that part of C or something else. I was surprised when I read that "catching a thrown object" can be a trigger for C - and that is a definite trigger for me. A few weeks ago, I was playing frisbee with my son and told him I can catch if I run after it. When he threw the frisbee straight to me, I fumbled with it every time. He called it noodle arms. I would never have considered that as a "problem" or a symptom and focused on other sports (that don't require catching). But it has been embarrassing. Christmas break sounds like a good time to make a change to Xyrem if you are planning. Although I would like to get straight to the goal dose, a slow increase over 2 months seems to be the way. I have waited this long, so a few more weeks is not too much.

[Narcguy56]

It sounds like we have a few similarities in our symptoms and treatment. I was also prescribed protryptiline for C- apparently it is alerting instead of sedating and has been helpful. I started on Adderall XR about 1 year before diagnosis and it has helped with EDS significantly. You mentioned coordination regarding throwing a ball. Do you consider that part of C or something else. I was surprised when I read that "catching a thrown object" can be a trigger for C - and that is a definite trigger for me. A few weeks ago, I was playing frisbee with my son and told him I can catch if I run after it. When he threw the frisbee straight to me, I fumbled with it every time. He called it noodle arms. I would never have considered that as a "problem" or a symptom and focused on other sports (that don't require catching). But it has been embarrassing. Christmas break sounds like a good time to make a change to Xyrem if you are planning. Although I would like to get straight to the goal dose, a slow increase over 2 months seems to be the way. I have waited this long, so a few more weeks is not too much.

I've tried a Ritalin, Prozac, Zoloft, and some other ones that I can't remember at the moment. Ritalin made me angry all the time. Prozac worked a little but not enough to justify taking it. Zoloft didn't really do anything. Haven't tried Adderall yet, may end up trying that eventually for EDS. And yes, football was where I had my first attack. In high school I was starting on the football team my sophomore year and maybe even looking at future scholarships, but I had to drop out because they saw me have a "seizure" and would not let me play until the problem was fixed. It took a year to find out it was narcolepsy/Cataplexy, and another year to find the best medication, and I was able to come back and play my senior year, but I was never able to throw or catch the ball again. Still can't. Something about it just always triggers an attack, even if it's only like for a split second. Same with a bunch of things, like tennis, baseball, etc. Anything that requires aim or coordination. It's very strange. Anyway yes, that's my plan for now, get it for christmas break. Now for the hard part, which is getting an appointment before then lol

[Hank]

What a way to find out you had a problem- on the football field. You/your family/ coaches must have taken it very seriously and I am glad you got the correct diagnosis relatively soon. C began early for me- nobody knew what it was and called it a hundred different things with certainty. I never knew what it was, but I always knew what is wasn't. I have developed ways to work around many of my triggers and prefer to do things that do not cause C. So, I have had little insight that being a bad catcher is a symptom. Occasionally, I would drop things, like a coffee, cup while I was talking- my hand just releases and my arm drops briefly. I did not report this as a bilateral loss of muscle tone since I was only holding one cup. Maybe if I had been a two fisted coffee drinker it would have been suspected sooner. Catching keys or a pen when tossed to me looks more like a clap than a catch. We were visiting with family in Ireland. Someone was showing us his trained falcon and the bird flew straight at me and over my head - I fell over sideways and landed in my wife's lap. It was hard to explain that the bird didn't scare me. I just said I was ducking and lost my balance. This has never caused a car accident thankfully, but if something hits my windshield while I am driving, I tilt over sideways very briefly. I am thankful to have proper medication because I cannot work around all situations that trigger C. I hope you are successful getting an appointment before Christmas. Keep in mind that Xyrem paperwork can take up to a few weeks for the office to complete, so a Thanksgiving time appointment might keep you on track to begin Xyrem during Christmas break. If you haven't already looked at this, here is a link to the Xyrem Success program www.xyrem.com/patient-success-program.

[Megssosleepy]

I have found that my C is a little worse now that I started taking Xyrem, and I know I need a higher dose... the second on only last about an hour last night!!

You both have me thinking about the catching, throwing, and the bugs hitting the windshield I have the same problem. I drive a manual car and sometimes I fear I wont be able to press in the clutch when I get frustrated behind the wheel! Being lost or seeing a group of deer always trigger it!

Have either of you noticed your C getting worse as you get older? I cant figure out if my symptoms are getting worse or if I am just to stressed and that's what's doing it.

And one more thing... I know a lot of people seem to have trouble getting Xyrem but for some reason I got mine 3 days after I requested it. Dr call the pharm they called me and had it over nighted... wonder why some people have all the red tape?

[Hank]

I have found that my C is a little worse now that I started taking Xyrem, and I know I need a higher dose... the second on only last about an hour last night!!

You both have me thinking about the catching, throwing, and the bugs hitting the windshield I have the same problem. I drive a manual car and sometimes I fear I wont be able to press in the clutch when I get frustrated behind the wheel! Being lost or seeing a group of deer always trigger it!

Have either of you noticed your C getting worse as you get older? I cant figure out if my symptoms are getting worse or if I am just to stressed and that's what's doing it.

And one more thing... I know a lot of people seem to have trouble getting Xyrem but for some reason I got mine 3 days after I requested it. Dr call the pharm they called me and had it over nighted... wonder why some people have all the red tape?

I find it so interesting to actually hear that you both have had similar experiences, while it is somewhat different for each of us. I honestly cannot tell if C has gotten better or worse as I have gotten older- I think I have just gotten more adept at working around the triggers that I can. For example, if I am startled, my knees buckle and I do a slow-motion drop. So, for most of my life, I have been very aware/attentive of my surroundings- not nervous/anxious, just aware. This helps with parenting because I don't miss a thing. Fewer things can startle me when I know what's coming. The few months before my Dx was the most severe and frequent ever for me. I had gone through a 6 month taper off Klonopin (a long acting/sedating benzo- misdiagnosis- a mess) which caused a REM rebound and made C unhinged. This was, of course, a very stressful time since my Dx was not yet confirmed. Extra stress seems to add fuel to the fire. So, now that I am diagnosed and treated for the first time in my life, and my stress from not knowing is relieved, C has been milder and less frequent.

My doctor had told me that the Xyrem application would take about a month to complete. Two weeks later I got a call from SDS Pharmacy. I think the wait has to do with how busy the doctor's office is and how thoroughly they complete the forms. SDS called me on a Thursday and I spoke with 2 nurses and a pharmacist, my insurance approved it and I received it on Saturday. Depending on the insurance plan, there may be extra hoops to jump through. Just an FYI that I have found helpful, SDS sends Xyrem by FedEx and requires an adult signature. They can also send it to a Kinkos/FedEx 24 hour store, which happens to be on my way home from work. Kinkos signs for delivery and I just show my ID- the guy at the counter has no idea what is in the box. Narcguy- since you are in college, this might be a good option for you, so you don't have to wait around for delivery. I have a lock box in my house to keep Xyrem since we have 3 children and their friends in/out.

[ImSleepin]

I'm sensitive to medications, so I did have side effects from Xyrem when I first started which I found subsided over time and were lessened by titrating my doses more slowly. I know it's not fun to go to the doctor all the time, but you will have to go every few months in order to maintain your prescription and for the pharmacy to keep mailing the Xyrem to you. The pharmacy will also call you regularly for the first few months to see how you're doing on the medication and to see if you have any questions and you have to have it delivered each month. It's definitely made a big difference for me overall, I'm just letting you know that you do have to keep in communication with them. It's not as easy as going to CVS to pick up a prescription each month.

As for your question about dreaming - on Xyrem I don't remember my dreams... for the most part. They're not as vivid and draining as they were before, or I remember dreaming as the Xyrem is starting to fade out. It's not the same as it was before where you could remember every detail of your dream hours later but feeling like you'd just woken up. I do still have vivid dreams when I nap during the day.

Megs, I don't think my C has gotten worse as I've gotten older, but I think I've become more aware of it. I think that I never knew the signs of it growing up, I just realize it now when it occurs. I do find that some days it's worse than others, perhaps if I'm more tired or stressed.

I think the issue with the delivery of the Xyrem has to do with insurance. When I first had it delivered I was told I could get a 3 day delivery and a couple months ago they called and offered a Saturday delivery. I think it depends on whether the insurance will pay the extra delivery fee and maybe there are other authorizations that delay the shipment.

[Sisu]

I would ask to try it. It really is now the front-line treatment for cataplexy.

I dream, but not like I did. I find that there's no sleep paralysis, what I remember is mostly good dreams, and the dreams are more influenced by my mood when I go to bed. If I use a relaxation tape, that really changes how I sleep and what I dream, probably by redirecting how I feel about the medicine's effects. I don't dream with the lucidity or the intensity that I did, and I thought I'd miss that, but I don't. I still sometimes have memorable, wonderful dreams, but there are no longer the intense trapped dreams, the dreams that I wake up and get up but it's a dream, the dream where there's someone in my room but I can't see them.

Those dreams are gone. Waking up is also different for me, I'm not still sleepdrunk in the morning.

[Megssosleepy]

speaking of dreaming, I had the craziest dream last night!! I cant say it was scary even though it should of been... but vivid doesnt even begin to describe it... but I was asleep. I did think the dreams were supposed to become more "normal" I do agree that the state of mind that I am in will lay out how the Xyrem will effect me. I did have to call the central Pharm yesterday and they were not helpful what so ever... Ive started having a really terrible "female" side effect. Wonder if any other ladies out there have had some abby-normal problems?

Anyhow just real quick, in my dream I was turned into a giant snake but I was myself floating above the snake. By Giant I mean i could fill a house. I had to crawl through all this thick white snake slime, and then everyone around me was turning into some strange animal or slimy thing... I could go on and on but it wouldnt really make sense. lol

I know this was random!

[Sisu]

It did affect my period when I started- I skipped one! I've heard of people having heavier periods, too. But then it got normal again and has been normal since. The nurse was actually helpful when I called the central pharmacy. I called them a lot at first, making sure my side effects were reported. It's important for them to know.

I still have weird dreams from time to time- that one sounds like a doozy! But I never have the sleep paralysis dreams; those are gone.

[Megssosleepy]

It did affect my period when I started- I skipped one! I've heard of people having heavier periods, too. But then it got normal again and has been normal since. The nurse was actually helpful when I called the central pharmacy. I called them a lot at first, making sure my side effects were reported. It's important for them to know.

I still have weird dreams from time to time- that one sounds like a doozy! But I never have the sleep paralysis dreams; those are gone.

I havent had any SP either thank goodness!! that was one of my concerns with starting Xyrem, I worried that I would get stuck in a bad dream. But, Ive found I can wake pretty easily if I need to! I had already finished 2 weeks ago and it randomly started up full blast for 3 days. Today seems better so I am going to hold off on seeing my OBGYN.

Thanks for the response!