Jump to content


Photo

Starting Xyrem On Tuesday - Need Advice


  • Please log in to reply
11 replies to this topic

#1 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 291 posts

Posted 26 October 2013 - 11:23 PM

To make a long story short, my diagnosis was changed to narcolepsy-cataplexy and I'm starting Xyrem on Tuesday.  I was told to start at 2.25g x 2, and that I didn't need anyone to monitor me.  I currently live alone.  Is this wise?  I thought it might be a good idea to take a nap on it first in the middle of the afternoon so somebody can watch me, but the Xyrem people said this was an unnecessary precaution.

 

I've been very sensitive to meds in the past, hypersensitive you might say, so my doc said I could start at 1.5g x 2 or even 1g x 2 if I was nervous about it.

 

When I asked the Xyrem nurse if I could go to the bathroom and empty my bladder when I wake up for the 2nd dose, she kinda discouraged it.

 

I was told I can't drink a glass a water before the 2nd dose if I'm thirsty because that would increase the chance of bedwetting, and that if I had to go to the bathroom -- well, she didn't come out and say it, but the impression I got was that I might be so dizzy that I would have to crawl ... carefully.  Wouldn't it be better to empty my bladder?  I have an ensuite bathroom so it's not far.  Wouldn't my sleep quality be better on an empty bladder and without thirst?  All that salt is just bound to make me thirsty.

 

I have a brand new bed, brand new mattress, and a brand new floor, and I don't want to urinate all over the place.  So, I thought maybe I should go out and get some adult diapers?  Good grief -- the final indignity.  My shipment arrives next week and was looking for any advice from previous users.

 

This all seems very restrictive.  Nothing to eat or drink after 8:30pm.  First dose at 11pm, second dose at 3am, and I cannot drive until 9am.  My other sleep doc said I should never go to bed hungry, but you can't seem to do that with Xyrem.  I would always have a light snack before bedtime, like a greek yogurt or something.

 

So, my final question is ... is all of this scare mongering?  Why don't they test it on us in the hospital under observation if it's this dangerous?  Your thoughts?



#2 Kimpossible

Kimpossible

    Member

  • Members
  • 44 posts
  • Gender:Female
  • Location:Central Virginia
  • Interests:When I had energy, I liked to knit, read, write, and make stained glass panels. I have 4 dogs who try to keep me out of my bed.

Posted 28 October 2013 - 03:39 PM

This really has nothing to do with your questions about Xyrem, as I am wondering about some of the same things you are.  My doctor wants me to start taking it soon - I'm trying to adjust to Nuvigil first.  I also eat before I go to bed because I often wake up in the middle of the night hungry.  I have to pee in the middle of the night usually too.

 

Anyway, I've been pondering the bed-wetting thing as well.  I am at least covered in one sense because I've already got a waterproof mattress pad.  I bought it when I got a Tempurpedic mattress.  It's not the kind that makes noise or is crinkly.  So, if you don't have one of those, I highly recommend it.  I've got aging dogs, so I'm prepared for their incontinence too.  lol.  

 

I'm interested to see what other people write about your questions.  Thanks for posting them!



#3 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 30 October 2013 - 10:20 AM

So.. How was it?  Been waiting to hear the results all week :)



#4 Ferret

Ferret

    Member

  • Members
  • 852 posts
  • Gender:Female

Posted 30 October 2013 - 02:32 PM

I'd like to know too I.H....and I sure hope that somebody responded to your queries with an instant message.  

Hank would have been the perfect person to set your mind at ease but I don't see him posting at all these days.

We can only hope that this is the med for you...keeping fingers and toes crossed for you.



#5 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 291 posts

Posted 30 October 2013 - 08:06 PM

Thanks.  Shipment didn't arrive yet.  First there was an insurance holdup.  I told them I would stop my other sleeping pills, but now they want to double check with my new doctor.  Had to stop the Vyvanse -- it was stopping the circulation in my fingers and toes and they were turning blue.  Back to modafinil for now.  Good grief.  Doctor did say that it would take time to see results, but that for some people, Xyrem is a game changer.



#6 Chemist

Chemist

    Member

  • Members
  • 319 posts
  • Gender:Male
  • Location:Indiana, US
  • Interests:Chemistry, Medicine, Science, Computers, Traveling, Not Being Tired

Posted 02 November 2013 - 12:28 PM

They do make waterproof mattress protectors. I'd probably go that route over diapers. As long as the mattress is protected, who cares if you pee all over your sheets. You can just toss those in the washer and they're good as new.

 

 

[...]  Had to stop the Vyvanse -- it was stopping the circulation in my fingers and toes and they were turning blue.  Back to modafinil for now.  [...]

 

By the way, I recall you were the one who had issues with sensitivity to stimulants. I did find out later what sympatholytics would be better to use in someone with the issues you have, which sound like either a supersensitivity to epinephrine/norepinephrine or an overactive sympathetic nervous system leading to excessive epinephrine/norepinephrine release. Those are labetalol (a mixed alpha/beta blocker), phentolamine (nonselective alpha blocker), clonidine, and guanfacine (both alpha-2 agonists). Just thought I'd mention it in case you ever start having issues with modafinil or want to try switching to other stimulants so you have options to discuss with your physician that don't involve a risk of hypertension.



#7 Hank

Hank

    Member

  • Members
  • 1,484 posts
  • Gender:Male

Posted 02 November 2013 - 06:27 PM

I'd like to know too I.H....and I sure hope that somebody responded to your queries with an instant message.  

Hank would have been the perfect person to set your mind at ease but I don't see him posting at all these days.

We can only hope that this is the med for you...keeping fingers and toes crossed for you.

Glad you are trying Xyrem- I hope it works out well for you.

 

Xyrem has a lot of salt and made me pee several time during the night. It can be disorienting to get up while on Xyrem. If you need to, consider picking up a urinal at the pharmacy, do you don't have to get up at night. If you do, just put a towel on the floor to spare the carpet from drips. I wish I had been told not to get up- I had a few nasty falls as a result.

 

The lower doses of X are unpredictable and not what the higher doses are like. Take it slow. Make bedtime relaxing. Communicate with your doctor and the X nurses.



#8 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 291 posts

Posted 03 November 2013 - 02:51 AM

They do make waterproof mattress protectors. I'd probably go that route over diapers. As long as the mattress is protected, who cares if you pee all over your sheets. You can just toss those in the washer and they're good as new.

 

 

 

By the way, I recall you were the one who had issues with sensitivity to stimulants. I did find out later what sympatholytics would be better to use in someone with the issues you have, which sound like either a supersensitivity to epinephrine/norepinephrine or an overactive sympathetic nervous system leading to excessive epinephrine/norepinephrine release. Those are labetalol (a mixed alpha/beta blocker), phentolamine (nonselective alpha blocker), clonidine, and guanfacine (both alpha-2 agonists). Just thought I'd mention it in case you ever start having issues with modafinil or want to try switching to other stimulants so you have options to discuss with your physician that don't involve a risk of hypertension.

That's very kind of you Chemist -- thank you.  The problem I was starting to see was peripheral vasoconstriction or peripheral vasculopathy -- very serious.  I think they have vasodilators for it.  The modafinil seems to do it too.  Here is the warning:

 

WARNINGS

Peripheral Vasculopathy, including Raynaud’s phenomenon

 

  • Stimulants, including Ritalin and Ritalin SR, used to treat ADHD are associated with peripheral vasculopathy, including Raynaud’s phenomenon. Signs and symptoms are usually intermittent and mild; however, very rare sequelae include digital ulceration and/or soft tissue breakdown. Effects of peripheral vasculopathy, including Raynaud’s phenomenon, were observed in post-marketing reports at different times and at therapeutic doses in all age groups throughout the course of treatment. Signs and symptoms generally improve after reduction in dose increase or discontinuation of drug. Careful observation for digital changes is necessary during treatment with ADHD stimulants. Further clinical evaluation (e.g., rheumatology referral) may be appropriate for certain patients.

PRECAUTIONS

Information for Patients
 

  • Circulation problems in fingers and toes [Peripheral vasculopathy, including Raynaud’s phenomenon]
  • Instruct patients beginning treatment with Ritalin or Ritalin SR about the risk of peripheral vasculopathy, including Raynaud’s Phenomenon, and in associated signs and symptoms: fingers or toes may feel numb, cool, painful, and/or may change color from pale, to blue, to red
  • Instruct patients to report to their physician any new numbness, pain, skin color change, or sensitivity to temperature in fingers or toes
  • Instruct patients to call their physician immediately with any signs of unexplained wounds appearing on fingers or toes while taking Ritalin or Ritalin SR
  • Further clinical evaluation (e.g., rheumatology referral) may be appropriate for certain patients

MEDICATION GUIDE

What is the most important information I should know about Ritalin?
 

  • Circulation problems in fingers and toes [Peripheral vasculopathy, including Raynaud’s phenomenon]: fingers or toes may feel numb, cool, painful, and/or may change color from pale, to blue, to red
  • Tell your doctor if you have or your child has numbness, pain, skin color change, or sensitivity to temperature in the fingers or toes.
  • Call your doctor right away if you have or your child has any signs of unexplained wounds appearing on fingers or toes while taking Ritalin.


#9 Chemist

Chemist

    Member

  • Members
  • 319 posts
  • Gender:Male
  • Location:Indiana, US
  • Interests:Chemistry, Medicine, Science, Computers, Traveling, Not Being Tired

Posted 03 November 2013 - 03:03 AM

Yeah, the vasoconstriction is in line with what I mentioned in my last post and the drugs specified should help control that sort of thing. I actually experienced full blown Raynaud's phenomenon when I first started Remeron and was also taking Adderall. My hands had huge blotches of white, red, and blue all over them and started going slightly numb while I was trying to take an exam. I just squeezed blood through them every so often and ignored it for the most part. That side effect lessened after a few days but I might still try switching from mirtazepine to trazodone or adding clonidine. Even off all medications my hands and feet are always moist and freezing.



#10 Chase

Chase

    Member

  • Members
  • 3 posts

Posted 04 November 2013 - 12:22 AM

Hi, I have been on Xyrem for a few years now. I, too, am someone who reacts differently to some medications. Clearance times seem to be off with me- things that should be gone out of my system can hang around too long and other things clear too fast.

I don't remember what dose that I started out at, but I do remember that was a terrible week or two because I could not sleep at all on it. I was so exhausted until I upped the dose and was then able to get some sleep. I thought, "great, another thing where I react the opposite from what I should". A couple of years later I had only a few hours to sleep one night, so I took a really low dose - and slept well. That was when I new that it was my anxiety over taking Xyrem that had kept me from sleeping to begin with.

I cannot tell you how you will react to Xyrem, I can only tell you my experience. For me, I found that the lower doses were no problem with walking around, or going to the bathroom. I would not go to bed until it had stated taking affect on me, which took awhile. I am NOT suggesting that you do this - it really is wise to start off in bed since everyone can be affected differently - and why the nurses and info they give you tells you to. I am just sharing what I did based on how it affected me.

I wish the Xyrem lasted longer for me - it clears my system fast, so I take my second dose as soon as they say you can. I wish I could sleep for four hours on that first dose! I always have to get up at the time of my second dose to go to the bathroom. Being close by definitely helps. I have always drank extra water with it. I mentioned this to my doc the other day, and it was commented that I was diluting the dose, but I am not sure that it would have that affect. I plan on calling and asking about that because in my mind the extra water is not like food that would interfere with absorption. So I don't know whether I should be or shouldn't, but I have been. I have found that cold water makes it taste better than room temp. A lot of people use a sugar free drink mix to add flavor, but the fake sugar is, in my opinion, very bad for the brain. I tried caffeine free herbal teas, but found later that those were diuretics and I didn't need that! So I just got used to drinking it with only water.

Now, the story changed when the doses got stronger. Now I do need to be in bed before it kicks in. I still go to the bathroom, but trying to do anything extra is very nauseating and not worth attempting to do. I would hate to try and walk a far distance to the bathroom, it is a real sickening feeling to move around on the higher doses. I imagine much higher and I'm not sure about even trying to go to the bathroom. But there is no way of knowing at what dose level you will feel like this, hence the need to start off with being in bed even at the lower doses and warning you about going to the bathroom.

#11 supertired

supertired

    Member

  • Members
  • 54 posts

Posted 04 November 2013 - 08:06 AM

Chase,

 

Did it make you feel more rested the next day? 

 

I don't read much about how Xyrem affects EDS for its users.

 

That is my main symptom. Although minor compared to hallucinations and catoplexy, it is enough for me.



#12 Jillybean1688

Jillybean1688

    Member

  • Members
  • 5 posts

Posted 05 November 2013 - 09:05 AM

I've used Xyrem for 3 years. I started on 1/g x 2/night. I felt the effects right away. That night my mom helped me use the restroom between doses just because I wasn't used to the side effects.

 

It took a long time to get in a groove with Xyrem. I now take 4.5 x 2/night and sleep about 7-8 hours each night. I don't follow the rule of no eating before bed. Sometimes I wait 2 hours after eating to take my first dose and sometimes I forget. I sleep just the same.

 

I might suggest having a friend or family member spend the night with you the first few nights if you're feeling anxious about it. I stayed at home for a week when I first started. Then I lived alone. Let us know how it goes!!