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dogwizards
Joined: 21 Mar 2010
Posts: 12
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 Posted: February 27 2011 Post subject: Need help with Xyrem & supplements; will it help the sha |
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I've roamed around these boards quite a bit from time to time and have been amazed at the information I've found. With a drug like Xyrem, where most people have never even heard of it, it's so nice to be able to come here and get detailed information.
I know there are at least two wonderful threads about taking magnesium and potassium supplements when on Xyrem, but I'll be darned if I can find them. I ran a search for magnesium and gave up after wading through 13 pages of results. Can anyone give me links to those threads? I see my sleep doc in about 2 1/2 weeks and want to be able to research this beforehand so that I can talk to him about it.
Also, my only side effect worth mentioning is the shakes. My hands shake most of the time, but it's much worse at different points in the day, and there are also points when I'm pretty steady. It's bad enough that it's almost impossible for me to take photos a lot of the time. I've been on Xyrem for close to a year now and absolutely love it, so I will just continue to shake if there's nothing to be done for it. I'm wondering if supplementation could help, though.
Also, the other day, my legs kind of went crazy when I was brushing my teeth in the morning. I leaned forward to spit out the toothpaste, and my right thigh muscle just danced. I had my weight on my left leg at the time and discovered that if I switched my weight to my right leg, my left thigh muscle did a jig. It seemed to decrease quite a bit and then disappear when I stood up straight. It was just the weirdest thing - I could see the muscle shifting from knee to hip, almost like a wave in the ocean. It was moving very fast and felt a lot like it does when the doctor checks your reflexes by hitting below your knee with the little hammer. I hiked up and down four HUGE flights of stairs the next day with 7-year-old Cub Scouts (the flights were so big, it was more like eight flights of regular stairs), and on the way down, my thighs started in again, but not nearly as intense. It was enough to make me hold onto the railings on both sides and hang back from the boys, though. I was afraid I would have to go back up a flight and take the elevator down, because I felt like I was going to tumble down the stairs. I made it, but it was spooky.
So I don't know if the leg dances could be related to the shakiness or if additional vitamins might help with any of it, but I thought I'd throw it all out there. Any ideas? |
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yawningdog
Joined: 03 Dec 2004
Posts: 1756
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| Posted: February 27 2011 Post subject: |
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Calcuim, 1000
magnesium, there are discussions of which is best but, you can start with just magnesium. I currently take malic acid. start about 250. This stuff will give you the runs, really nasty runs when you get too much.
potassium, you can only buy this in 99 doses. It is easier just to eat or drink about 400-500 a day by eating a banana or drinking 8oz of OJ.
I got these suggestions from the American Heart Association because I was having blood pressure spikes when I started Xyrem. They are recommending not only cutting sodium but upping your intake of these three.
Not sure on the logic, your body uses these to help remove extra sodium from your system. Something like that. |
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Willow2007
Joined: 03 Feb 2007
Posts: 1476
Location: Iowa
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| Posted: February 27 2011 Post subject: |
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You need to be careful in how you get potassium. Potassium if you get too much, causes cardiac problems. Better to get it from as natural a choice as you can. Eat a banana every day, but if you aren't on diuretics, which a doctor prescribes, I would be very careful of potassium.
There are a lot of posts about these vitamins. It would be hard to find any specific ones. good luck.
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dogwizards
Joined: 21 Mar 2010
Posts: 12
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| Posted: February 28 2011 Post subject: |
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Would eating just one banana a day be enough? If so, that's easy enough.
I already take 1200 of calcium every day, split into a dose in the morning and one at bedtime. Is there any particular time of day to take the magnesium? With or without other vitamins? |
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yawningdog
Joined: 03 Dec 2004
Posts: 1756
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| Posted: February 28 2011 Post subject: |
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I take mine in the afternoon. I take synthyriod in the morning and that can't be taken with other vitamins, they absorb the thyroid.
I take mine all at once but, it hurts. I just tried yesterday taking them 15 minutes apart and no stomach pain, still belching after I take them but not feeling sick is good. |
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Geekwench
Joined: 17 Apr 2010
Posts: 170
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| Posted: April 29 2011 Post subject: Re: Need help with Xyrem & supplements; will it help the |
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| dogwizards wrote: | I've roamed around these boards quite a bit from time to time and have been amazed at the information I've found. With a drug like Xyrem, where most people have never even heard of it, it's so nice to be able to come here and get detailed information.
I know there are at least two wonderful threads about taking magnesium and potassium supplements when on Xyrem, but I'll be darned if I can find them. I ran a search for magnesium and gave up after wading through 13 pages of results. Can anyone give me links to those threads? I see my sleep doc in about 2 1/2 weeks and want to be able to research this beforehand so that I can talk to him about it.
Also, my only side effect worth mentioning is the shakes. My hands shake most of the time, but it's much worse at different points in the day, and there are also points when I'm pretty steady. It's bad enough that it's almost impossible for me to take photos a lot of the time. I've been on Xyrem for close to a year now and absolutely love it, so I will just continue to shake if there's nothing to be done for it. I'm wondering if supplementation could help, though.
Also, the other day, my legs kind of went crazy when I was brushing my teeth in the morning. I leaned forward to spit out the toothpaste, and my right thigh muscle just danced. I had my weight on my left leg at the time and discovered that if I switched my weight to my right leg, my left thigh muscle did a jig. It seemed to decrease quite a bit and then disappear when I stood up straight. It was just the weirdest thing - I could see the muscle shifting from knee to hip, almost like a wave in the ocean. It was moving very fast and felt a lot like it does when the doctor checks your reflexes by hitting below your knee with the little hammer. I hiked up and down four HUGE flights of stairs the next day with 7-year-old Cub Scouts (the flights were so big, it was more like eight flights of regular stairs), and on the way down, my thighs started in again, but not nearly as intense. It was enough to make me hold onto the railings on both sides and hang back from the boys, though. I was afraid I would have to go back up a flight and take the elevator down, because I felt like I was going to tumble down the stairs. I made it, but it was spooky.
So I don't know if the leg dances could be related to the shakiness or if additional vitamins might help with any of it, but I thought I'd throw it all out there. Any ideas? |
Disclaimer: IANAD (I am not a doctor)
A classic sign of magnesium deficiency is muscle twitches and spasms. http://en.wikipedia.org/wiki/Magnesium_deficiency_(medicine)
You might do well to supplement with magnesium, [possibly] potassium and [possibly] calcium. Potassium is much more bio-available when obtained through foods, but since we can't eat for two hours before taking Xyrem, I take a potassium supplement (along with magnesium, calcium and some others) at bedtime.
It is quite difficult to overdose on over-the-counter potassium unless you're taking a pill the size of a cookie- most potassium supplements tend to be 99mg, which is 3% of the RDA. Instances of potassium overdose tend to be in cases where it is injected, where a prescription form is used, and/or where there is renal insufficiency/failure. There are various conditions and medications that can interfere with potassium excretion, per http://en.wikipedia.org/wiki/Hyperkalemia, so check those, as well. But basically, if you're taking one potassium supplement at a typical dose and don't have renal failure or other conditions that cause potassium buildup, you're not going to O.D. on potassium.
The reason I take these particular supplements at bedtime is to help to provide a little balance to the large amount of sodium I'm about to ingest (try to be as hydrated as possible when you take Xyrem, as well- hydration helps your body flush the excess sodium). If you look at the DASH diet (Dietary Approaches to Stop Hypertension), it is heavy on these nutrients. I wouldn't take excessive amounts of any of them, but some supplementation might help with your shakes and muscle spasms, if that's what you're describing. And, of course, you should call your doctor to make sure this is okay for you to do- the advice of people on the Internet is overall about as reliable as a 30-year-old car with a bad transmission. I have seen people who claim to be medical professionals making statements that are wrong, even nonsensical, and I've probably done the same myself. That's why I would recommend checking with your doctor, who is an actual person you actually know who has an actual medical degree. I hope.  |
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Geekwench
Joined: 17 Apr 2010
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