Reply To: Xyrem Side Effects – Increased Blood Pressure and Heart Rate

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.

Reply To: Interesting Tidbit For Those On SSRIs

Hello, @pereise1 – thanks for sharing this info! I have been reading as much as I can & looked up the Med list on this site, and it doesn’t list either of the 2 SSRIs you mentioned (paroxetine or Vortioxetine.) I’m trying to compile lists of the different meds & what they are supposed to do (what symptoms and/or underlying issues they’re used for in regard to PWN) so I can have a better idea of what I might want to try when I talk to my Neuro. Would either of the 2 you posted about go under/with Fluxetine (Prozac) or Sertaline (Zoloft)?

Sorry for the late reply, but yeah, they’re all SSRIs. As for the receptors that they all bind to significantly:

Paroxetine: SERT (0.34nm)
Sertaline: SERT (0.4nm), Neurosteroidogenesis agonist
Fluoxetine: SERT (1nm), 5-HT2C antagonist (72nm), Maybe Sigma-1 agonist, Neurosteroidogenesis agonist
Vortioxetine: SERT (1.6nm), NET (113nm), 5-HT1A agonist (15nm), 5-HT2B partial agonist (33nm), 5-HT3 antagonist (3.7nm)

Reply To: Xyrem Side Effects – Increased Blood Pressure and Heart Rate

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.

Reply To: Xyrem Side Effects – Increased Blood Pressure and Heart Rate

@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.

Reply To: Xyrem Side Effects – Increased Blood Pressure and Heart Rate

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.

Reply To: Xyrem Side Effects – Increased Blood Pressure and Heart Rate

@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.

Reply To: Xyrem Side Effects – Increased Blood Pressure and Heart Rate

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?