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Starting Xyrem


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#1 Mmartens3

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Posted 10 May 2013 - 03:02 AM

So I am the process of getting my first shipment of xyrem from the SDS pharmacy. I have gotten a couple of phone calls and will receive one more tomorrow to go over a checklist and schedule my first shipment. The doctor provided a voucher so my first month will be free. In the meantime they will be working with my insurance which is Cigna- actually Medco for prescriptions. Does anyone here have Cigna / Medco who is receiving xyrem who can give me a heads up about what to expect as far as coverage?

Also, I was told I would have to get up in the night to take a second dose. Does everyone do that? I can't imagine most people actually doing that.

What about side effects? Are there some side effects that I might expect at first that would level out after a few nights? Or certain side effects that I should definitely stop taking xyrem if I notice it? I guess I will get some of these answers when they call back tomorrow but I would like to know from someone who has had personal experience.

Thanks

#2 Hank

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Posted 10 May 2013 - 08:35 AM

The nurses with the Xyrem Success Program are really helpful. Everyone responds differently and they will help you with the "cooler heads prevail approach".

 

Asking about side effects here will usually get responses of people's worst experiences. I think a good approach is to manage what you can and then see how you respond. When I started on Xyrem, I did not worry about what "might" happen and just dealt with what "did" happen.

 

So, a few good tips when starting out:

Don't eat for at least 2 hours before your first dose. Cut back on liquids also. If you have a heavy or fatty dinner (eg pizza, steak) consider 3 hours before first dose.

Mix your Xyrem and leave on your night stand, set your alarm (I used my Iphone on airplane mode and put it  under my pillow).

Take Dose 1 once you are in bed, turn off the lights and wait for sleep.

I found using an eye mask and a sound/white noise machine helpful. Relax before bedtime- maybe a warm shower. Don't fall asleep to the TV or computer.

The response you have to the initial low dose is not the same as your response to the higher dose. It takes time to adjust.

Just keep everything calm and quiet and relax.

Consider a small dim night light in the bathroom in case you get up during the night. You do not want to have bright lights on.

Take your 2nd dose. That dose does more for you, since the first dose is still in your system.

 

If you have any side effects that concern you- call a Xyrem nurse first. She can help you determine what to expect and help you make decisions.

 

I discontinued Xyrem after 6 months, but I am still benefiting from the time I was on it (4 months later). It did reduce Cataplexy and almost eliminated EDS. In many ways, it was a miracle drug for me and I would like to try it again in the future.

 

Also, if signing for deliveries at your home is a problem, your Xyrem can be sent to a 24 hour Kinkos/FedEx location. They sign for it and hold it until you pick it up. I preferred that so I did not miss any deliveries.

 

I hope you have a good experience and see improvement in your symptoms.



#3 DeathRabbit

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Posted 10 May 2013 - 09:22 AM

Yeah my advice is to not read the Xyrem diary thread I made earlier, lol. But seriously, don't ruminate too much on side-effects ,especially the psychological ones, because it's likely to psych you into having them, especially if you are predisposed to anxiety. Placebo effect can be pretty powerful; in double-blinded studies, they've given people in serious chronic pain just some normal sugar pills, promising they were in a study for some radical new pain treatment, and more than a few were going "Thanks, doc! I dunno what you gave me, but it fixed me right up!" They've also had studies where hey gave placebos, and some of the more distrusting members would start developing bad side-effects to sugar pill, lol.



#4 napper3

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Posted 11 May 2013 - 07:58 PM

I first started with only adderral. It worked ok enough to get through a day, but barely. I then added xyrem and discontinued due to increased blood pressure and other side effects. I've just started provigil today. I didn't notice anything the first half if the day, but the second half I actually feel alive and functional. I think new meds r worth a try. Each person's chemistry is differerent as far as meds working. But with xyrem its important to read all possible side effects. I have a few issues they are determining if xyrem is the cause. I did stay in touch with my dr and the xyrem nurse. To add, the thing I'm finding the hardest to deal with is feeling isolated and I am trying to figure out how to connect to other people with narcolepsy.

#5 h.wynn

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Posted 12 May 2013 - 10:29 AM

I have a dubbel alarm clock. I keep it set for my xyrem 11pm and 3am. I only have one side affect that bothers me but not enough to stop the xyrem. Being an adult and never having this problem befor. Its bed weating. It tends to happen if I take the second does too early. That being said a good waterproof mattress pad is cheeper than a new mattress. I would sugust that you get one better safe than sorry.

#6 e.lena

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Posted 12 May 2013 - 07:46 PM

I started Xyrem in January and finally started taking the therapeutic dosage in May (4.5 g 2x per night). My first night in January was unforgettable. It was like my brain was a computer that had been rebooted and was downloading thousands of programs at one time. I used to have very vivid dreams as a child, but stopped dreaming at night around age 10. I'm 33 now, so I thought I was losing my mind when the vivid dreams bombarded me for the entire night. Luckily my boss is really understanding, so she let me have the next day off.

 

I am extremely sensitive to medication which is why it took ~ 4 months to titrate the dosage. The side effects in the beginning for me were edema (7 pounds in 2 days), extreme dehydration, vertigo, nausea, felt less intelligent. They were bothersome for a few weeks, but my body eventually adapted. The dehyration is still bothersome, so I always have water with me and Aquaphor for my lips so they don't crack.

 

The benefits: I admit I did have a lot of trouble getting used to sleeping like a "normal" person. Now, I don't ever want to return to sleeping for days straight with no dreams and no rest. I still have to take dextroamphetamine during the day, but only 20-30 mg instead of 50 mg. I can drive my car now without having to pull over. I only live 7 miles from work and I used to have to pull over at least once per day. It still takes longer to assimilate information, but I often wake up in the morning with solutions to problems that surfaced at work the day before.

 

I admit there were days that I wanted to quit in the beginning, but I knew there would be a light at the end of the tunnel since I started having restful sleep starting night 2.

 

 

 



#7 DeathRabbit

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Posted 12 May 2013 - 07:57 PM

I think if I could have restarted my titration and gone at a snails pace, I might could have done it. But I'd have had to quit my job because on the low doses I woke up after the 2nd dose reached subtherapeutic level. I felt like in some ways my mental clarity got a tad better, but I just plain was getting enough hours of sleep cuz I was literally drunk with sleep each day. It's like I shifted my EDS for cognitive to physical/emotional symptoms. The cognitive symptoms (memory loss, no focus) made me suck at my job, but they were easy to hide and I'm good at making it look like I'm working hard by now, even when I cant. The irritability and mood swings, as well as the stumbling around and dropping stuff was much harder to hide.



#8 Mmartens3

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Posted 15 May 2013 - 09:29 PM

I just got my xyrem today. I will be taking my first dose tonight. I am starting at 2.25 grams. Anybody have any side effects from that dosage? I am a little nervous about all this.

#9 Mmartens3

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Posted 16 May 2013 - 07:23 AM

Ok, so I did not start it last night. We had a string of tornados run through the general area. One town was devastated, several people killed many injured. My family was up late watching the weather reports and preparing to hide in the bathroom. There was a report of rotation close to us but it did not turn out to be a tornado. Our town did not get hit. we didnt get to bed until after midnight so I decided not to take the xyrem since I had to get up early this morning and I didnt know if it would make me groggy in the morning by taking it so late. I will start it tonight.

#10 N50+

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Posted 16 May 2013 - 06:22 PM

Mmartens3, we must live in the same area cuz we had the same weather last night. I take xyrem and woke up when the very heavy rain hit but was back asleep in no time.
I take my 1st dose at 9, 2nd at 12:00 midnight. I use my iPhone with a vibrate alarm so as not to wake the spouse. I take it, chase it with a swig of water and I'm sleeping almost as my head hits the pillow.
Like others, I was on xyrem once before and made some mistakes like stopping other meds that I wasn't supposed to and had to stop. I have been back on xyrem after a year off for about 6 weeks now.
Best advice is listen to your body and don't worry if you have to titrate up slower than what they say. There is no rush. Get used to a dose, get comfortable with it then go up .25 or .5 or whatever works for YOU. The best effect is had once you reach the higher doses but that is no reason to get there faster than you are capable of.
You will do just fine.

#11 Megssosleepy

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Posted 17 May 2013 - 11:28 AM

Ive been taking Xyrem for almost a year.  I had a rough start but am soooo happy I stuck with it.  All the side effects except one went away with time.

 

I don't use an alarm to wake me for my second dose, I wake myself up pretty much 3.5 hours on the dot every night since my first dose.  I get out of bed go to the bathroom, and then take the second dose and fall right back to sleep.

 

My advice... give it time, don't over think, and go to bed with a clear head.  If i catch myself thinking too much I stop and start counting to 1-10 and then back 10-1 (I hardly ever make it back to 1)

 

Like N50 said, go slow tirating... your body will let you know when its time to take more.

 

Also... the way it is in the beginning is nothing like it will be... it took ME 3 months at the max dose to finally get adjusted and sleeping amazing.  I finally am paying of my sleep debt and feel so much better. I can't say I feel like a normal person, but I only take 5mg of adderall in the morning and thats it!  I make it through my day without falling asleep and I no longer have microsleeps or SP!!

 

Stay Calm and good luck! :)



#12 Mmartens3

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Posted 17 May 2013 - 11:28 PM

So that was not a very relaxing way to go to sleep last night. I couldn't turn my head without getting dizzy. And when I had to get up to go the bathroom I got so dizzy, I almost threw up. When I got back to bed, I just laid very still until the dizziness and nausea dissipated and then fell asleep. All this happened in about 20 minutes. It seemed to have strong effect on me even though it was just the starter dose. I woke up four hours later to my alarm and didnt realize any time had passed at all. But I was apprehensive about taking the second dose because I didnt want to get sick again so I only drank half of it. It wasn't effective at all and I continued to stay awake for most of the rest of the night. Needless to say, I didnt feel very refreshed today. I called the dr and he said that I could just take the first dose for a week or so until I am tolerating it better. Maybe I will sleep longer if I don't have to wake up to the alarm.

So off I go to put myself through it again. Goodnight all.

#13 Mmartens3

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Posted 18 May 2013 - 08:02 AM

Ok, so last night was much better. I took my medicine and just tried to relax and go to sleep. I got a little it of a headache but not too bad. I just drifted off to sleep without getting dizzy or sick. I only had the first dose though. I went to bed at 12:30 and woke up at 5:00. (The baby started crying). I dozed a little after that but just light sleep. I don't feel very rested today. I actually feel pretty crummy. So I definitely need the second dose. I am still gonna wait on that though.

#14 DeathRabbit

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Posted 20 May 2013 - 09:36 AM

Yeah, that second dose is crucial. The half life is about an hour to an hour and a half. So after about 3-4 hours, it's gonna be virtually all gone. And X has a bad habit of leaving you awake and unable to sleep when it wears off, kind of like when you go to bed drunk.



#15 Mmartens3

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Posted 20 May 2013 - 10:56 AM

Death rabbit. Yes you are right. It seems like I have a harder time sleeping the rest of the night since I am only taking the first dose. So I am not really getting any more sleep. I will try taking both doses soon. Saturday I got a horrible migraine (during the day and then into the evening) and I wondered if it was a side effect of xyrem. i have never gotten a migraine before.

#16 DeathRabbit

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Posted 20 May 2013 - 10:58 AM

I had bad headaches as well, but I get them whenever I'm sleep dperived. My guees would be Xyrem---->Lack of sleep---->headache



#17 Mmartens3

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Posted 20 May 2013 - 11:13 AM

I do get chronic headaches but they are usually nerve related and originate at the base of my head in the back. It is usually remedied by stretching and ice. I have never considered them to be migraines. This one was different. It was one sided, it did not start at the back and I got dizzy and nauseated. It was bad. I have never felt like that before. I hope it doesn't happen again.

#18 Mmartens3

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Posted 20 May 2013 - 11:49 AM

Thank you, everyone for your advise and encouragement. I found it helpful and comforting.

#19 Mmartens3

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Posted 20 May 2013 - 11:51 AM

Megsosleepy, thanks for sharing your experience. It gives me hope that things will get better. I am glad things are better for you.

#20 Mmartens3

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Posted 20 May 2013 - 11:55 AM

N50+ yes, we must live in the same area. I am glad I didn't do my first dose that evening.it would have complicated things. We were back and forth in and out of the bathroom with our four kids, pillows and a mattress. Crazy. I am glad we didnt get hit.