Xyrem Side Effects – Increased Blood Pressure and Heart Rate

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  • #8095

    80sMusicLover74
    Participant @80smusiclover74

    I’m hoping to get some feedback from others who have taken Xyrem and experienced the side effects I’m dealing with. Immediately after starting Xyrem, my blood pressure and heart rate increased substantially. After hunting around online, I found that a lot of people have experienced this.

    I only took Xyrem for 3 weeks and had to discontinue because of the side effects, mainly because I became severely depressed.

    It has been 4 days since my last dose of Xyrem, and my blood pressure and heart rate have not normalized yet. My blood pressure is starting to come down, but my heart rate is still crazy high. My resting heart rate is normally between 65 and 68. On Xyrem it went up in the 80s and 90s, and the tiniest bit of activity mcauses a rapid heart rate increase.

    I am very concerned that it is still so high four days after quitting Xyrem. I will be contacting my doctor on Monday, but I would love to hear from prople who have taken Xyrem and had these side effects. In particular, if you had these side effects and stopped taking Xyrem, how long did it take for your BP and heart rate to return to normal?

    Thanks for your help!

    #8099
    Ferret
    Ferret
    Participant @ferret

    I have never used Xyrem BUT I do know that it has a very high salt content. Four days is not a lot of time for it to get back to normal. Above all, I would suggest you drink lots of good old fashioned water to flush the excess salt out of your system and limit your consumption of caffeine in any form in the meantime.
    I’m sure others will chime in soon. I would be most interested to hear what advice your Doctor has to give you on Monday.

    #8113

    tinyelephants
    Participant @tinyelephants

    Hi,

    I took Xyrem for a little bit. I discontinued as well due to the side effects, but my blood pressure, although it did become high on it (and as @ferret mentioned) due to (I’m assuming) the extremely high sodium content, I stopped because I was having psychotic episodes. So much so, in fact, that I sought therapy because I couldn’t differentiate what was real and what was not and if you’ve ever experienced that, I can’t even begin to describe what that feels like to be inside your own head. I’ve now been diagnosed as a schitzophrenic and since discontinuing the medication, immediately the thoughts stopped, but the psychiatrist wouldn’t lift the diagnosis. I’m stuck with a stigma from a side effect.

    I can say that only four days isn’t a long time at all, especially if you’re spending your time worrying about your blood pressure lowering. That’s sure to keep it high. Your body could have been starting to get used to the Xyrem perhaps too, which might be contributing; maybe like a small withdrawal effect. I’m not sure since I’m not a doctor, but please don’t worry. Let your doctor tell you what you can do and you’ll be fine. The more you worry, the more stress you’re putting on yourself.

    I’m sorry you went through the depression and blood pressure stuff on Xyrem. I was so excited to start taking it, as I heard so many people say it was such a “game changer” for them. For me, all it did was give me a month of torment in my own mind.

    Let us know how your appointment goes and welcome to the group!

    #8116

    80sMusicLover74
    Participant @80smusiclover74

    Thanks for the feedback. I had assumed that the high sodium content was what caused my BP and heart rate to increase. But I thought if that was the cause, it should start to correct itself fairly soon after quitting. I have been drinking a ton of water and also eating potassium rich foods. I think the sodium threw off my electrolyte balance and caused my potassium level to get a bit low, because I was getting lots of muscle cramps, which is a sign of low potassium.

    I will come back and let you know what I find out from my doctor. I’m trying not to worry too much about it because I know worrying will only make it worse, but it’s hard not to be a little freaked out by such a dramatic elevation in my BP and heart rate, especially being as physically fit as I am.

    #8118

    80sMusicLover74
    Participant @80smusiclover74

    Wow, tinyelephants, the psychosis must have been terrifying. I’m sorry you went through that. From reading people’s experiences with Xyrem, it seems like psychiatric side effects like depression and anxiety are a lot more common than what was reported in the clinical trials.

    #8120

    tinyelephants
    Participant @tinyelephants

    Thanks, yeah. I’d say glad it was me than someone else, but I’d be lying horribly really. It still lingers a little, like someone planted those memories in my head. I don’t know, I can’t really explain it. It was an experience, that’s for sure.

    I think it’s funny too, every time I would call Xyrem to tell them about the side effects they would insist it wasn’t their medication and that I should UP my dosage right away. I wonder how many people like you and I call in to ask a Jazz Pharmaceuticals pharmacist about a side effect and gets the same response, I’d bet a lot. I wonder how many of those people actually get told to stop using the medication, I know I never did, in fact I stopped using it myself and Jazz harrassed me by phone AND by mail for the next month trying to get me to renew my prescription and when I did everything in my power to ignore them, they started calling my husband’s phone.

    I think you’re right. And if I’m not mistaken, I do remember reading, on here in fact, that a lot of Xyrem’s side effects (specifically ones you mentioned) are very underreported in the clinical trials. And even now I think.

    #8122
    Ferret
    Ferret
    Participant @ferret

    Xyrem is a huge money maker for Jazz Pharmaceuticals and they didn’t even invent it. If you google what it cost when it first came out and what it costs now, you will be dumbfounded at the percentage increase per year. I am appalled to hear of the harassment that you endured tinyelephants. It would have been fun to have recorded those conversations and then to have contacted jasonm since he’s a lawyer without much time or enthusiasm for Jazz. Many of us well remember some of the horror stories from patients prescribed Xyrem on the now defunct Narcolepsy Network forum.

    #8129

    attackingbutterfly
    Participant @attackingbutterfly

    Xyrem seems to have a 2-day delay for me. Takes two days at a given dose to start taking effect. Miss a dose two days in a row and then I feel it. So expect to wait that long.

    The full neurological effects though take 3-months to wear off. I really hope it doesn’t take that long for the increased heart rate to wear off. Yet it might be this long.

    Now, doing the sort of checking I do… Hypothyroidism has a fair amount of reduced heart rate. Hyperthyroidism is more often associated with increased heart rate. Upon checking though, turns out hypothyroidism does sometimes cause increased heart rate, and hyperthyroidism does sometimes cause reduced heart rate.

    You might ask your doctor for a full run of all of the thyroid tests. At a minimum both the TSH and Free-T4. If you end up on a substantial dose of Levothyroxine (50mcg or more), it might be worth retrying Xyrem. I’d tend to advise against this as increased heart rate is just a little dangerous. OTOH this may make Xyrem far more useful to you…

    Xyrem is a huge money maker for Jazz Pharmaceuticals and they didn’t even invent it. If you google what it cost when it first came out and what it costs now, you will be dumbfounded at the percentage increase per year. I am appalled to hear of the harassment that you endured tinyelephants. It would have been fun to have recorded those conversations and then to have contacted jasonm since he’s a lawyer without much time or enthusiasm for Jazz. Many of us well remember some of the horror stories from patients prescribed Xyrem on the now defunct Narcolepsy Network forum.

    Yeah, the first report of synthesis is dated 1874. Yet somehow they claim to have managed one or more patents on it… Perhaps their magical procedure waving their hands and reducing the likelihood of use of the illegal purpose?

    #8131

    tinyelephants
    Participant @tinyelephants

    @ferret

    It was awful. Something happened with my insurance, so that was the perfect timing to stop taking it, since it was horrible anyway. They were trying to convince me to give them the soon to be new insurance information (which I didn’t know yet) so they can call and get me my refill. But I kept telling them that the original prescription wasn’t written one of their doctors, so my insurance isn’t going to cover it. They called me every day for weeks while my new plan was being set up, multiple times a day between 8am and 6 or 7pm. I finally stopped answering my phone and they would leave so many messages. Then all of a sudden came the text messages from my husband at work that Xyrem was calling him. I was so embarrassed. That went on for a couple of days, he can’t ignore his phone like I can, he does IT security and he needs to be in compliance in his workplace, which includes not having his phone going off in the middle of his building haha. Then the letters in the mail. These people are nuts, I’m certain.

    #8135
    Ferret
    Ferret
    Participant @ferret

    @jasonm Please read this thread Jason and let us know what you think about this harassment of a patient by Jazz Pharmaceuticals. I would also like to know if anyone else has experienced this upon deciding that Xyrem was not a good choice of medication for them personally. Anyone?

    #8148

    80sMusicLover74
    Participant @80smusiclover74

    Xyrem seems to have a 2-day delay for me. Takes two days at a given dose to start taking effect. Miss a dose two days in a row and then I feel it. So expect to wait that long.

    The full neurological effects though take 3-months to wear off. I really hope it doesn’t take that long for the increased heart rate to wear off. Yet it might be this long.

    Now, doing the sort of checking I do… Hypothyroidism has a fair amount of reduced heart rate. Hyperthyroidism is more often associated with increased heart rate. Upon checking though, turns out hypothyroidism does sometimes cause increased heart rate, and hyperthyroidism does sometimes cause reduced heart rate.

    You might ask your doctor for a full run of all of the thyroid tests. At a minimum both the TSH and Free-T4. If you end up on a substantial dose of Levothyroxine (50mcg or more), it might be worth retrying Xyrem. I’d tend to advise against this as increased heart rate is just a little dangerous.

    Interesting that you brought up the possibility of either hyperthyroidism or hypothyroidism. Before I went to see my doctor, I had found a couple of posts on the Talk About Sleep forum from people saying they had to reduce their Levothyroxine dose after they started Xyrem. I also saw several discussions about how the side effects people were experiencing (rapid heart rate, excessive sweating, increased appetite, weight loss, etc.) were the same as the symptoms of hyperthyroidism.

    The Talk About Sleep website was taken down recently, which is a bummer because I would really be interested in reading the entire posts. They still come up in search results, but the website is gone, so all I can see is snippets.

    Anyway, I came back to provide an update after my doctor visit. I saw my doctor on Wednesday, exactly one week after I quit Xyrem. She agreed that my symptoms were suggestive of a low potassium and/or magnesium level, and ingesting a large amount of sodium can definitely cause those other electrolyte levels to drop.

    She didn’t want to do anything right away to treat my high blood pressure because she said taking a diuretic might just cause more problems, especially if my potassium level is already low. Plus, my blood pressure hasn’t been dangerously high, so there’s no need for immediate treatment. So she ran labs and is having me continue to monitor my blood pressure and heart rate. She told me that if the sodium in the Xyrem was the cause, it might take another week for my blood pressure and heart rate to get back to normal, but it should gradually go down. (and if my lab tests show a low potassium level, taking a prescription dose of potassium supplement for a week should correct it).

    Fast forward to today. Now I suspect that there might be something else going on besides the high sodium/low potassium issue, because my blood pressure is finally coming down, but my heart rate isn’t coming down along with it. In fact, the opposite has happened. My resting heart rate has increased even more over the last couple of days. That could still be due to low potassium, which can affect heart rate without necessarily increasing blood pressure. However, the collection of symptoms I’ve had does make me wonder if my thyroid has been affected.

    I did ask my doctor about doing a thyroid panel with my lab work, but she didn’t think Xyrem could have affected my thyroid in such a short time of taking it. If my potassium comes back normal, I will ask her again if she will run thyroid labs.

    I will let you know what happens.

    As for Jazz Pharmaceutical, it’s criminal that they were somehow able to get a patent on GHB and charge such an exorbitant price for it. And like others have said, they didn’t tell me to stop taking it when I reported my side effects. They just told me to drink a lot of water and reduce my dietary sodium intake. They also told me depression and anxiety are rare side effects, and most people actually have an improvement in their mood on Xyrem. Yeah, right. I don’t believe that for one second.

    #8162

    tinyelephants
    Participant @tinyelephants

    @80smusiclover74

    Could the Xyrem have given you some kind of anxiety, that could cause your rapid heart rate and you thinking about it could be causing yourself kind of mini panic episodes. Haha, I HAD to chuckle when you wrote that they said depression and anxiety were rare side effects and that they didn’t have you fooled. These folks at Jazz are brainwashed to believe their product is the panacea and that everyone saying it isn’t so needs psychiatry. {excuse me –cough– *bullsh*t* –cough– excuse me}

    I’m glad you got somewhere with the doctor. I hope she gets you all fixed up soon. I’m also glad your bp wasn’t into dangerous levels (of course) and that your doctor has a proper plan in place. 🙂

    I had no idea Talk Sleep was gone. I never posted but I was sneaky and created a login just so I could expand some of the interesting answers I had questions to, even if they were 10 years old. This makes me sad a little. Thanks for mentioning it, I wouldn’t have known until I went looking and probably would have taken half an hour to figure it out haha.

    #8165
    Ferret
    Ferret
    Participant @ferret

    Talk About Sleep has been dormant for a very long time. At least they left it up for a number of years so people could read the archives. Another invaluable resource gone… just like Narcolepsy Network. But, Narcolepsy Network wouldn’t even give us access to the archived material, it just disappeared and I’m still more than a little teed off with them. Just shows how much they really cared.

    #8227

    attackingbutterfly
    Participant @attackingbutterfly

    Interesting that you brought up the possibility of either hyperthyroidism or hypothyroidism. Before I went to see my doctor, I had found a couple of posts on the Talk About Sleep forum from people saying they had to reduce their Levothyroxine dose after they started Xyrem. I also saw several discussions about how the side effects people were experiencing (rapid heart rate, excessive sweating, increased appetite, weight loss, etc.) were the same as the symptoms of hyperthyroidism.

    I’ve experienced an inverse, Levothyroxine effecting the activity of sodium oxybate, not sodium oxybate effecting Levothyroxine. I can see an indirect mechanism for this though. One of the adverse effects of sodium oxybate is it can cause weight loss (major problem in a third-world country, not a problem in a first-world country). Levothyroxine dose is tightly tied to weight, lose significant weight and the dose will need to decrease.

    I did ask my doctor about doing a thyroid panel with my lab work, but she didn’t think Xyrem could have affected my thyroid in such a short time of taking it. If my potassium comes back normal, I will ask her again if she will run thyroid labs.

    I was suggesting the opposite. Many of the adverse effects of sodium oxybate are also (less common) symptoms of hypothyroid conditions. I suspect all of sodium oxybate’s adverse effects are actually attributable to hypothyroid conditions interfering with the molecule.

    If this is so, then your experiencing an adverse effect would mean you need some Levothyroxine. Trick is, using this as a test of thyroid condition gives very different results from the existing thyroid tests. Problem is excess Levothyroxine has its own hazards, so I have to be careful in what I advocate here.

    The one effect which might match hyperthyroidism is people who fall asleep in less than 5 minutes on sodium oxybate.

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