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Eds Is Worse Since Starting Xyrem


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#1 jlmmjr

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Posted 06 July 2013 - 12:48 AM

Hello All, 

Hoping for someone to tell me I have something to look forward to. 

 

I'm about 6 weeks in on taking Xyrem and after about week 3 I started noticing that I was having major sleep attacks--like I've ever had before. The best way to explain it is I feel as if I've taken another dose of xyrem!  About 1-3 hours after I wake up and regardless of if I eat breakfast or not, all of the sudden I am so sleepy that I can't stay up. The first time this happened to me, if I would have been driving, I would have wrecked the car. Thank God I was at home and ran to the bed to lay down. Since then I've added a short acting ritalin and an extended release to my day, but it isn't helping at all.  I NEVER had sleep attacks like this before Xryem. NEVER. And this is happening anywhere from 6-8 hours after my 2nd dose. So it's supposed to be impossible for the Xyrem to still be in my system. 

 

Anyone have problems like this? And does Xyrem get better??? 

This is literally my last ditch effort. I have tried every treatment possible over the past 4 years and am desperate for a somewhat normal life. For the past year I didn't use any treatment at all and was suffering in my life, I can't be like this--worse than I was. 

Thanks. 



#2 doinmdirndest

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Posted 06 July 2013 - 02:34 AM

if you have not been prescribed Adderall in amounts exceeding 60mg/d you and your doctor have not explored all options.

I can offer articles to give a hard copy of to your doctor that medically validate such prescribing.

conventional wisdom in the medical community today holds true that such prescribing is inadvisable.

I am no doctor, but the fact that w/o my own high dose wakefulness promoting regimen i'd be f.'ed tells me this belief held true by

most md's treating eds is inevitably flawed, to some degree.


you must have a strong mind and good, if not outstanding, cardiovascular heart health to safely take high doses of traditional stimulants.

I can only presume you know what you are talking about when you say you have tried all treatments possible. likely more accurate would be 'conventional' treatments, such as nuvigil.

I hope your doctor is not one of the many not willing to step outside the boundaries of conventional treatments if your case profile matches my own.

one of the articles is 'PHARMACOLOGICAL ASPECTS OF HUMAN AND CANINE NARCOLEPSY' by dr Emmanuel mignot. giving a copy of this article to my doctor was a 'game changer' when I requested high dose stimulants. pg. 37 or so is where you find a section acknowledginging the need a few of us have for high doses. this article may be easily found and downloaded for free in the full text version from the Stanford website. if this proves not do-able, write back w/my email from my profile contact information and i'll send a link that downloads it.

there is another from 1968 that no online access exists to. 'ON THE TREATMENT OF NARCOLEPSY' by dr Robert yoss, a pioneer in the treatment of excessive daytime sleepiness. it suggests common sense criteria for determining correct doses when prescribing stimulants that are apparently forgotten today. the patient's type of work and body weight, for example. email me a fax# and i'll get this one off to you.

use patience and strength. if no contraindications to them exist in you for stimulants in higher doses you can eventually prevail over excessive daytime sleepiness-if they are well tolerated in you.

lastly, do not allow adrenaline from awareness of your situation when you are at your doctor visit cause behavior resemling wakefulness and normalcy that does not exsist in you after the adrenaline wears off. and don't let it incite a long-winded presentation. verbosity when requesting high dose amphetamines from your doctor cannot succeed, and it can result in any exsisting such regimen being stopped, as it inevitably resembles overstimulation.

you should appear tired and you should use as few words as possible. have the relevant information underlined or highlighted, page it's on up, and give your doctor the copy of the article for staff to place in your file.

if this turns out to be an unsuccessful approach to getting the prescription you need, you need another doctor.

I hope that this helps.

good luck \

#3 doinmdirndest

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Posted 06 July 2013 - 03:22 AM

I left out something very important about traditional stimulants: medication 'holidays', or days when you take no stimulants. this is needed to avoid tolerance building up, I do not know how to determine how many days or how often these 'holidays' (more like jail stays to me) should be included into your schedule. I would not advise asking your doctor's advice on this matter until after your doctor grants your request for high dose stimulants, perhaps in your next visit.

this could make it a 'tougher sell' to get your medicine; it can wait.

it's probably a tough sell to begin with, perhaps very tough depending on your doctor.

#4 Hank

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Posted 06 July 2013 - 08:27 AM

Hello All,
Hoping for someone to tell me I have something to look forward to.

I'm about 6 weeks in on taking Xyrem and after about week 3 I started noticing that I was having major sleep attacks--like I've ever had before. The best way to explain it is I feel as if I've taken another dose of xyrem! About 1-3 hours after I wake up and regardless of if I eat breakfast or not, all of the sudden I am so sleepy that I can't stay up. The first time this happened to me, if I would have been driving, I would have wrecked the car. Thank God I was at home and ran to the bed to lay down. Since then I've added a short acting ritalin and an extended release to my day, but it isn't helping at all. I NEVER had sleep attacks like this before Xryem. NEVER. And this is happening anywhere from 6-8 hours after my 2nd dose. So it's supposed to be impossible for the Xyrem to still be in my system.

Anyone have problems like this? And does Xyrem get better???
This is literally my last ditch effort. I have tried every treatment possible over the past 4 years and am desperate for a somewhat normal life. For the past year I didn't use any treatment at all and was suffering in my life, I can't be like this--worse than I was.
Thanks.

I discontinued Xyrem 6 months ago after being on it 7 months. I am still benefiting from having been on it. My EDS is almost 0.
You said these sleep attacks are happening 1-3 hours after waking up. This is also 6-8 hours from dose 2.
The Xyrem safety info says not to drive sooner than 6 hours after dose 2.
It does sound like you titrated on the quick side. Quicker than most anyway.
Starting Xyrem is a process, not an event. It is heavy duty and your brain needs time to adjust.
Relaxation is very important. Be as easy on yourself as possible. Reduce any extra stress until you adjust through it.
That was, I think, one of the snags for me. I started Xyrem during a very stressful year. I would try it again, but would be a whole lot easier on myself. Don't make too many changes at once or too fast.
You are starting to get restorative sleep. Sometimes it is 2 steps forward, 1 step back. My body reacted in some unusual ways. My sinuses drained, my lips stopped cracking, my skin looked shiny. I think my body was just jolted by the contrast of suddenly having deep restorative sleep. Even positive changes were mysterious because I was just not accustomed to positive- miserable had become my normal and I plugged along regardless.
At some point, as I began to get some relief, I began to feel the full weight of my symptoms. When I had no break from them, it almost seemed less noticeable. But as I had windows of feeling well, the contrast of well and miserable was disorienting.
I am currently taking only morning coffee for EDS, since discontinuing Xyrem. I do not know how long that will last but it is a gift.
I hope you get some relief soon.

#5 jlmmjr

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Posted 06 July 2013 - 08:38 PM

Thanks all,

 

doinmdirndest--

Yes, I have tried all treatments. I had a horrible reaction to Nuvigil (it was as if I had a stroke or suddenly developed MS--after stopping this medication, it took 6 months for the symptoms to go away). I have been on every stimulant, burned through all of them and hated how I felt (long story short). I even tried holistic approaches. Nothing. So after 3 years I stopped all medicine and just suffered through. Lack of health insurance didn't help. I'm that weird person that always has strange reactions to meds. Lucky me! 

 

I was reluctant to try Xyrem, but I have to be able to stay awake and live. My doc did have me at the max dose by week 4, btw. I was excited at first, sleeping was good and I did feel better. However, week 3 I started feeling more tired during the day and by week 4 I felt worse than I ever have with N. I was hesitant to add any stimulants because they bothered my heart in the past (not to the point of causing damage or needing treatment). But so far, I feel like adding them has brought some balance. HOWEVER, this Ritalin is barely doing anything for me. I'm sure he'll increase the dose and I'm willing to try anything. I have to live! I need to work and take care of my daughter. I just wondered if anyone else had experienced an increase in EDS with Xyrem? Honestly, I never had attacks like this before.  

 

Hank, 

Yes, I am not driving any sooner than 6 hours after taking dose 2, if you note, I said that anywhere from 6-8 hours AFTER taking dose 2, I get a sleep attack.  This is at a point when I should be safely driving to work or sitting at my desk doing work and then it comes back, off and on throughout the day, but not as bad as the first time. And I know what you mean about positive experiences.  I don't know if you ever saw a movie with Val Kilmer where he was blind but had surgery to fix his vision and it freaked him out and he wanted to be blind again, that's how I felt at first.  I wasn't sure if I could handle "normal".  Thank God I work from home, but occasionally I have to be at a meeting or at my boss's house early and I can't afford to screw up this job. A work from home job (with no set hours) is a narcolpetic's dream. 

I'll give it some more time and see what the doctor says. Just as with everything else N related, it's complicated and ever-changing.  I've read in several places that it has taken some people several months if not a year to see the best result. Fingers crossed. I just didn't expect to feel worse. :( 



#6 jlmmjr

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Posted 07 July 2013 - 11:13 AM

Hank, 

I realized I should have said 1-3 hours after I GET up, not wake up. I typically lay in bed for about an hour or so and read before getting up. So I'm looking at between 5 and up to 9 hours after taking last dose when this kicks in.  I don't expect to fly out of bed without woozieness,but I also didn't expect to feel worse.  Something else that's odd is it feels worse with movement. I've heard people saying that they get this weird weighted feeling and while I'm sitting down or laying down, I'm ok. But as soon as I try to move, I feel like I'm moving at the rate of a sloth. I feel heavy and like I'm maneuvering through extra thick syrup.  

 

 

I guess I can suffer through anything as long as it's temporary. If this will pass, I'll keep on keeping on. 



#7 jlmmjr

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Posted 07 July 2013 - 11:28 AM

btw, last night I took my 2nd dose at 5:30. It's now 12:20 and I can barely keep my eyes open. I shouldn't be feeling this tired, this long after a dose, should I?  The promising thing this morning is that I did have a bit of productive time between waking and getting a sleep attack. But now that the sleep attack is here, I'm useless. It's going to take me 10 minutes to type this. My doc said he's never heard of any residual Xryem staying in a person's system for more than the 4 hours (and the 2 hour buffer period after).  But it feels like there is a little bit left in my system that sneaks back up.  It's not as bad as when do take Xyrem, but it's a close second.  Though, it would be me that would experience some crazy side effect with the drug that could give me back my quality of life!  

 

This is a new doctor for me, and already he's been more diligent than the other one I saw for a year.  Let's hope he stays attentive. Not that I would wish N on anyone, but it'd be nice to have a sleep doc that had N so they'd understand all this. Or at least make them live for a month in an artificially induced state that resembles N. :) 



#8 Hank

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Posted 07 July 2013 - 11:57 AM

What you describe is similar to what I experienced on Xyrem. I felt like I was missing a cog in my gears. Or, like when the video and audio are not quite synched- it felt like I was on a slight delay.

 

While being on Xyrem was not pleasant for me, my EDS now is almost non existent. And my Cataplexy is managed with Effexor. 

 

I think the only way to know what works for me is to give it a good honest try. Then, decide when to fold 'em and when to hold 'em. With Xyrem, I eventually decided to fold. I will definitely try it again in the future if my symptoms re-serge, but for now I feel as close to well as I have ever felt.

 

Your body is going through so many adjustments, it is hard to always know what is causing what. Eventually, you will decide if you are seeing benefits and if those benefits are worth it. I really wanted Xyrem to be a seamless experience with no downside- but it was not quite the case for me. It was more like driving standard shift than an automatic. It required a lot of adjustments and was not the "cruise control" experience I had hoped for. It definitely has been for others and hopefully may be for me again in the future.  

 

For some, the more time that passed, the better they have felt. For others, staying longer at a lower dose did the trick. It can be a lot of trial and error. You will be the best judge of what works for you. 



#9 jlmmjr

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Posted 07 July 2013 - 12:51 PM

All you say is true. I wish I would have read up more on Xyrem before taking it, to know what to expect because I naively thought that I'd take it, get real sleep, and wake up feeling rested. I am glad to know that many people experience increasingly better results as time goes on. I just hope I can maintain until that possibility.  I did try to lower my second dose to see if that would help how I felt in the few hours after waking, but no luck. I could go right to sleep on 2.25 for the second dose (I can't fall asleep on anything but the 4.5), but I realize that it wasn't good sleep.  Being on the 4.5 x 2 seems to get the most sleep for me.  Oh well, thanks so much for the advice, I do feel hope knowing that other's experiences have been like mine and they saw improvement.  Now, I wait. 



#10 Megssosleepy

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Posted 12 July 2013 - 03:15 PM

Xyrem is really tricky stuff, I have now been on it for a year... crazy to think that it has been this long.  I do still have EDS and I still have stomach issues due to the the Xyrem and not having a gallbladder.  With that being said I also feel sooooo much better than before I took it.  It took me a long time and I made many adjustments before settling on 4.5x2 and it took 4 months or so to get to that point!

 

Try to give it a fair shot... 6 weeks is not long at all, and I feel like things will start turning around for you!