Xyrem and sleep +pain....really upset

[Misfit Toy]

I took Xyrem for the 1st time this past Saturday night. The whole process is scary, as you are to not eat 2.5 hours before, take pain meds or any kind of med like Klonopin which I am on. They overlooked that. I took it and slept 4 hours like I was dead. Then I woke up....felt hyper and took the 2nd dose. You are supposed to set an alarm for 2nd dose which I found strange, but your body actually just wakes up a few hours later...no alarm needed.

When I woke up, I felt exhausted. I had slept, but I was drained. According to the company ( I called today) this is normal. For the first week. However....I also felt agitated, had pins and needles in my right hand and felt outside of myself. I was extremely anxious as the day went on.

The good thing about it was I didn't feel so so tired as the day went on and I had NO PAIN. I have fibro bad and it was down to a reasonable number. No stiffness, etc.

For those who do not know what Xyrem is....it's GHB. The date rape drug in less amounts. It knocks you out like anesthesia.

I called my doctor because I was out and felt like I was going to have a panic attack. My thoughts were racing. My doctor is not overly experienced in Xyrem and told me to stop it. Which, is actually logical. I came home and looked up Xyrem and found there are so many side effects of anxiety, nausea, vomiting, memory loss....which I had because I felt doped on it. It's a CNS depressant. Weight loss is huge and some people love this, but I am small and weigh 120 pounds. I can't afford to lose 20-30 pounds which is the norm with this drug. People lose their appetite and also....it helps you to burn fat. While you sleep, you burn fat on it and have night-sweats.

I called the pharmacy that deals with Xyrem, Jazz pharmaceuticals. Anxiety happens in 6% of all people and suicidal thoughts, also. She told me to cut my dose down. But, if you cut your dose down, you will only sleep 4 or 5 hours......and then still have possible anxiety.

To be honest, I have never taken a drug so scary. You must be lying down when you take because it knocks you out in 15 minutes, you may sleepwalk and the biggest side effects are weight loss and nausea along with tremor. Plus, several people urinate in their sleep. That whole thing scares me. Plus, you have to wake up in the middle of the night to swallow down a second dose. Many people do not like the whole process, even those who actually do okay on it. It's scary for most who are on it.

So, it's a day and a half later and I still have major anxiety. The drug helped my pain majorly and I could wear shoes I shy away from due to pain.

I am depressed. Every single medicine has a set back or side effect that is not tolerable. I take Fentanyl for pain, I develop a migraine, which is common. I did IGG therapy, my liver enzymes went through the roof and my immunologist does not want me on it again. As much as possible, he wants me to stay away from it because the side effects for me are horrendous.

Cortef...I had major anxiety....like being on Xyrem!

So, all of these drugs that are supposed to help make me sick. I have horrible pain, don't sleep well and feel hopeless. The very things that should help don't or make me sicker.

I am upset, sad and unsure of where to go. I need to treat pain and sleep. Most narcotics I can't even take. The whole thing is depressing. Those that have anxiety on Xyrem take anxiety meds like Benzo's but I don't want to do that....God, that's the last thing I need, an addiction to Ativan and then horrible withdraw. Or, take an SSRI to counteract the anxiety, but they cause me horrible exhaustion and GERD.

I hate this. I hate this life.

 

[minkeygirl]

Sorry you had such a horrible experience. You can file an adverse event report with the CDC.

I don't believe in taking one drug to stop the side effects of another either, so I don't blame you, especially if it's benzos.

I'm sure you've tried Lyrica for the FM pain.

All I can tell you is that hopefully you'll happen on something that you can take that will help. What else can we do but grit our teeth and keep going?

 

[caledonia]

Are you taking any essential fatty acids such as fish oil? The omega 3's will cause production of the body's natural painkillers (called eicosanoids or prostaglandins). If you try this, you should take pharmaceutical grade fish oil, such as Sears Labs Omega Rx (that's what I take). Molecular distilled would be the next best, and health food store grade would be the worst choice (may contain various impurities).

You may also need to take a bit of GLA to stimulate eicosanoid production. GLA can be found in a bowl of steel cut oats. You can also take borage oil, black currant seed oil or evening primrose oil, but the amount in a capsule is way too high - it could eventually cause production of bad eicosanoids thus causing more pain. There are various ways to cut down the amount if you decide to go that route.

Any more, I just take the fish oil and no GLA. This gives me significant pain reduction from multi day migraine like headaches due to changes in the atmospheric pressure. I used to have to take 4 ibuprofins every four hours. Now I rarely need to take any painkillers at all, and if I do, it's just two, one time.

I've noticed that worse my adrenals are, the more fish oil I need. At one point I was taking two teaspoons per day. Now I only take 1/4 tsp per day as my adrenals have improved from methylation treatment.

My BF is also taking it - he does one teaspoon per day and it stops his arthritis pain.

Essential fatty acids also have many other benefits such as heart and brain health, better mood and PMS reduction.

 

[Insomniac]

Perhaps medical marijuana is legal in your state. I tried it. It did not help me but I wonder if it would work for you. It's one of those very individual things.

It seems less risky because when I tried it the side effects of lowered blood pressure and tiredness were a million times easier than prescription drugs.

I found this positive article on it by a woman with both CFS and a past cancer.
http://www.ncf-net.org/forum/2014winter2.htm

Maybe it is good that you tried Xyrem. There was no way you could know these effects without trying it.

Re: Omega I take Solgar's flax seed oil capsules. They are the first Omega-3 oils that I can properly digest.

Sleep is a hellish problem to deal with in this illness. ATM I am trying hight dose glycine mixed with herbs, theonine and alcahol. Next week I will probably be on something else.
I hate it.

 

[Misfit Toy]

@caledonia - I have been on fish oil for about 4 months now with no results. I am taking Barlean's Omega Swirl. I have noticed nothing in pain reduction. IT's weird. I see how people have great results. I am wondering if it's because I have fibro, Sjogrens and Intercostal Neuralgia. I am not sure. I take 2 heaping teaspoons a day...morning and night. My adrenals are low and not up to snuff from illness, pain and lack of sleep and depleting hormones. Also, my liver, I am sure.

@minkeygirl -I am glad someone agrees that taking meds to counteract meds seems strange to me. It just does. Especially benzos and antidepressants which all effect me.

@redrachel76 -pot is not legal here and when I have tried it off the street, it's so much more potent now that it's too much for me and I become paranoid.

Ultimately, one of the biggest problems is my chemistry is so different everyday that at one time something could work or it could backfire. All having to do with hormones and body chemistry that is just beyond messed up.

 

[minkeygirl]

@Misfit Toy I remember years ago when I was all enough to volunteer, another volunteer got put on a heart medication that caused some bad side effect (I forget what) and they gave her more drugs. That made no sense to me then and even less now for those of us with the issues we have with meds.

It's all trial and error and unfortunately, we have to suffer through some miserable days to find what works. We are just not normal.

 

[Misfit Toy]

I keep looking at narcolepsy pages and then I think....why am I looking here? Narcolepsy is not CFS is not CVID, is not sensitivities, is not an immune disorder, is not any of what I have and I am comparing myself to some of them who have no problems with it. Although, almost all who have fibro will say that after a while, there fibro came back. Not as bad, but it didn't last with Xyrem.

Yes, we are not normal. Or, I am not.

 

[Nielk]

@Misfit Toy -

I too have many side effects with all these drugs.

For the past 2 years, I have been taking 150mg of Trileptal. It is not a narcotic or sedative. It feels more like I am sleeping naturally with no side effects. It's an anti-epileptic agent. It is not addictive. The doctor who prescribed it said that at a very low dose, it can help with sleep. My sleep is far from perfect but, I can live with it. This is just my personal experience.

By the way, Xyrem made me psychotic.

 

[soxfan]

@Misfit Toy- I consider you brave for even giving the Xyrem a try. My Lyme doctor wanted to put me on it years ago when my insomnia was so bad but I was terrified to take it.

@minkeygirl You are right that we have to suffer through some horrible days to find out what works. I have had many many of those over these 10 years and I am definitely NOT normal.

Most of the time I feel strange and bizarre and I don't even take any meds except for my thyroid. So many of the meds for sleep made me feel even worse off than I already do normally.

 

[Misfit Toy]

@Nielk -Can I just say thank you so much. I am sorry you felt psychotic, but I am not alone. I am not alone with Xyrem and CFS. You felt it, too. I don't think they report it enough. Do you have pain at all? I am going to look into your medicine. I am so happy you let me know you felt nutso too, on it. I am not as alone in feeling.

@soxfan -Well, you are right to be terrified. I was, too, but did it anyway.

 

[minkeygirl]

@soxfan My brain is so off the only option is trial and error with things, most of which are for sleep.

I just discovered that Lyrica, which I got to try for sleep) really helps me when I started getting really angry. I won't take it all the time because of the weight gain (it makes me want to eat constantly) but when I feel myself really getting mad I take one.

@Nielk Interesting about Trileptal. when I google it it also says for Bipolar disorder.

@Misfit Toy Another thing to think about is baclofen. It's a muscle relaxant and anti spasmodic. I took it and it was like I was on speed but hey, why not give it a shot?

What I do when I am trying something is just ask the pharmacy for 1 or 2 pills. Throwing $3 down the toilet is easier than $10.

 

[caledonia]

@caledonia - I have been on fish oil for about 4 months now with no results. I am taking Barlean's Omega Swirl. I have noticed nothing in pain reduction. IT's weird. I see how people have great results. I am wondering if it's because I have fibro, Sjogrens and Intercostal Neuralgia. I am not sure. I take 2 heaping teaspoons a day...morning and night. My adrenals are low and not up to snuff from illness, pain and lack of sleep and depleting hormones. Also, my liver, I am sure.

If you're taking the regular Omega Swirl, you're getting 720 EPA and 720 DHA per day.

One teaspoon of Omega Rx is 1800 EPA and 900 DHA. I was taking two teaspoons per day at one point. So that would be 3600 EPA and 1800 DHA. So quite a bit more.

You may need a mega dose to combat high inflammation. Even when I've tried a good cheaper brand and doubled up, it was not as effective as the Omega Rx. There is something super effective about this particular brand. When you get into mega doses, it's important to get pharmaceutical grade, so you're not getting mercury or other impurities.

Also, you may need some GLA to kickstart prostaglandin production. The omega 3's will make sure the prostaglandins tilt towards making the good pain killing prostaglandins, and not the bad pain producing ones. I don't think I explained that thoroughly before. So if you're not making prostaglandins at all, it doesn't matter how much Omega 3 you take, probably nothing will happen.

Also, you should notice a pain relief effect from fish oil almost right away. I would think within a few days or weeks. If it's been four months, I don't think it's working.

 

[August59]

I keep looking at narcolepsy pages and then I think....why am I looking here? Narcolepsy is not CFS is not CVID, is not sensitivities, is not an immune disorder, is not any of what I have and I am comparing myself to some of them who have no problems with it. Although, almost all who have fibro will say that after a while, there fibro came back. Not as bad, but it didn't last with Xyrem.

Yes, we are not normal. Or, I am not.

I know this post is a little dated, but just trying to clarify that narcolepsy is considered an "autoimmune disease" in that the bodies immune system attacks and destroys "hypocretins" or "orexins" in a region of the hypothalamus (or hippocampus???)

Oddly enough these are the "neurotransmitters" targeted by the new sleep medication by Merck - Belsomra!!

 

[flitza]

I took Xyrem for the 1st time this past Saturday night. The whole process is scary, as you are to not eat 2.5 hours before, take pain meds or any kind of med like Klonopin which I am on. They overlooked that. I took it and slept 4 hours like I was dead. Then I woke up....felt hyper and took the 2nd dose. You are supposed to set an alarm for 2nd dose which I found strange, but your body actually just wakes up a few hours later...no alarm needed.

When I woke up, I felt exhausted. I had slept, but I was drained. According to the company ( I called today) this is normal. For the first week. However....I also felt agitated, had pins and needles in my right hand and felt outside of myself. I was extremely anxious as the day went on.

The good thing about it was I didn't feel so so tired as the day went on and I had NO PAIN. I have fibro bad and it was down to a reasonable number. No stiffness, etc.

For those who do not know what Xyrem is....it's GHB. The date rape drug in less amounts. It knocks you out like anesthesia.

I called my doctor because I was out and felt like I was going to have a panic attack. My thoughts were racing. My doctor is not overly experienced in Xyrem and told me to stop it. Which, is actually logical. I came home and looked up Xyrem and found there are so many side effects of anxiety, nausea, vomiting, memory loss....which I had because I felt doped on it. It's a CNS depressant. Weight loss is huge and some people love this, but I am small and weigh 120 pounds. I can't afford to lose 20-30 pounds which is the norm with this drug. People lose their appetite and also....it helps you to burn fat. While you sleep, you burn fat on it and have night-sweats.

I called the pharmacy that deals with Xyrem, Jazz pharmaceuticals. Anxiety happens in 6% of all people and suicidal thoughts, also. She told me to cut my dose down. But, if you cut your dose down, you will only sleep 4 or 5 hours......and then still have possible anxiety.

To be honest, I have never taken a drug so scary. You must be lying down when you take because it knocks you out in 15 minutes, you may sleepwalk and the biggest side effects are weight loss and nausea along with tremor. Plus, several people urinate in their sleep. That whole thing scares me. Plus, you have to wake up in the middle of the night to swallow down a second dose. Many people do not like the whole process, even those who actually do okay on it. It's scary for most who are on it.

So, it's a day and a half later and I still have major anxiety. The drug helped my pain majorly and I could wear shoes I shy away from due to pain.

I am depressed. Every single medicine has a set back or side effect that is not tolerable. I take Fentanyl for pain, I develop a migraine, which is common. I did IGG therapy, my liver enzymes went through the roof and my immunologist does not want me on it again. As much as possible, he wants me to stay away from it because the side effects for me are horrendous.

Cortef...I had major anxiety....like being on Xyrem!

So, all of these drugs that are supposed to help make me sick. I have horrible pain, don't sleep well and feel hopeless. The very things that should help don't or make me sicker.

I am upset, sad and unsure of where to go. I need to treat pain and sleep. Most narcotics I can't even take. The whole thing is depressing. Those that have anxiety on Xyrem take anxiety meds like Benzo's but I don't want to do that....God, that's the last thing I need, an addiction to Ativan and then horrible withdraw. Or, take an SSRI to counteract the anxiety, but they cause me horrible exhaustion and GERD.

I hate this. I hate this life.

Don't know if you're still taking it or interested in it, but I thought you might like to hear my experience. I have ME/CFS . It was more fibromyalgia about 8-9 years ago when I had a sleep study that showed that I have narcolepsy as well. I was prescribed Xyrem but was started at a significantly lower dose than 4.5 mentioned in some articles.

I think I started at 3, two times a night. At times it's has had to be increased up to 4. I did not experience the side effects that you did, other than the sudden awakening. It had enormous beneficial effects for me over the years. Sleeping deeply and feeling refreshed, pain reduction among others.

Since you are small, it seems that perhaps the initial hefty dose may have contributed to the side effects.

Just a thought.