Xyrem problems…and solutions

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This topic contains 34 replies, has 12 voices, and was last updated by  hopingforsleep 6 years, 8 months ago.

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  • #18762

    sleepymoon
    Participant

    Hi folks…I don’t post over here very often because I get more caught up in the Narcolepsy boards, but I have pain too.

    I’ve been diagnosed by two different rheumatologists. One said ankylosing spondylitis. The other said Hah! It’s fibromyalgia. If you ask anyone with ankylosing spondylitis, they usually say it’s both. Whatever it is/isn’t, I have been in a LOT of pain. But I also have narcolepsy and a great sleep-certified neurologist who knows enough about Xyrem to prescribe it for me when I asked for it.

    I had real bad tendinitis (tendinosis is what they call it when it gets so bad you’re incapacitated) in both my arms/elbows. So much pain!! I had pains in other parts of my body, of course. Neck, chest, back, feet, etc. My theory at the time was that lack of restorative sleep was responsible for my repetitive motion injuries (tendinitis) and the only way to fix it was to get some restorative sleep. After reading up on Xyrem and hearing a lot of people with narcolepsy rave about it, I was desperate to try it out. I am grateful that my doc was willing. It seemed like he was just waiting for me to ask. He doesn’t like to push meds on people.

    Well, I had tried a lot of NSAIDs for pain, and only ibuprofin and Mobic worked for me okay. The rheum put me on sulfasalazine for AS and that made me sick (anorexic/skin and eye photosensitive reaction). I had already started taking Xyrem, but at that point (allergic reaction point) I stopped taking everything except Xyrem and Provigil.

    This is when I noticed that my pain in my arms was decreasing…they were getting stronger BUT I was starting to have muscle spasms and a general tightness in my neck. My blood pressure was going up up UP, especially during PMS. And that’s when the spasms got worse, too. My body was shaking, too. I wasn’t sure if it was from being so weak and skinny, or if it was a side effect of Xyrem.

    Now I am VERY hesitant to call those things “side effects” to Xyrem. I started taking magnesium and potassium, and all my “side effects” went away. Here is a thread I started on magnesium on the Narcolepsy board:

    https://www.talkaboutsleep.com/message-boards/viewtopic.php?t=16629

    What I believe happened to me was that I was already deficient of magnesium/potassium, and taking Xyrem made me need them even more. Plus I used to eat right before bed so I could fall asleep, but w/Xyrem I can’t do that anymore. I noticed I started craving chocolate real bad at night and even bought some bittersweet chocolate chips to keep by my bed. I was eating them after my doses, and noticed I’d sleep much better. Magnesium is in chocolate.

    So now I don’t crave chocolate w/Xyrem. I take 150mg of magnesium glycinate and 99mg of some cheap potassium supplments. And my docs want me to take Slow-Mag because it’s gentler on the digestive tract, so I am, but only 2/day because they also contain calcium. Ordinarily I recommend getting potassium from foods but I am not finding a way to eat enough fruit in the day to satisfy my daily requirements, so I supplement. As I am desperate to gain weight, I’m eating heavier foods along with fruit juices and some fruits.

    I would recommend magnesium by itself, but I noticed on really hot days, it wasn’t helping…in fact it was going right through me and the pain would come back so quick. Potassium seems to help me absorb the magnesium better. I have read that deficiency of both goes hand in hand. Anyhow, there’s a ton more info on magnesium at the link I posted. I hope you guys on Xyrem will find it helpful. Sorry I didn’t post it sooner. I really should have.

    Oh…one last thing…since I started the magnesium/potassium, my periods have been much better. Previously, I had to raise my dose every time I hit my period because I couldn’t sleep. Now I don’t.

    #119940

    Thanks for sharing this, Sleepymoon.

    I’ve been ready to stop Xyrem because of the joint and nerve pain I’m experiencing. I did begin taking magnesium: 200 mgs. of glycinate and, later, two Slo-Mag. It hasn’t made a difference.

    I know I’ve had low levels of potassium before. But I now eat foods containing potassium. It seems to be a sufficient amount.

    I have to call my doctor’s office because I had blood work last time. I will see if they looked at electrolytes.

    I’m in such worse pain, and I have tremendous weakness, that I’m ready to give up on Xyrem.

    #119941

    sleepymoon
    Participant

    If you’re low in potassium, it’s likely the magnesium won’t help. I’m actually taking 99mg potassium w/every magnesium tablet I take. Try that? And drink plenty of water. How is your blood pressure?

    #119942

    I bought some of that cheap potassium, 90 mgs. I was going to only take one per day. Maybe I’ll take two, starting tomorrow. But I take the Slo-Mag without food, and I have a sensitive stomach. I may have to play around with it.

    I think I drink enough water, though I may need to increase.

    Blood pressure has been a little high, but my PCP wasn’t worried about it. Last time I saw my Lyme NP, and it was normal. It has been questionable, though.

    The mineral issue makes so much sense. I know I have low levels normally due to Lyme (it seems to love magnesium and potassium!), and these pains came with the Xyrem. I was thinking of some as nerve pains, but tendonitis seems to fit more. I’m having tight muscles and cramps, too. Makes SO much sense!

    They seem clueless at the Lyme office about this, though. At any rate, I said I was staying on the Xyrem. I was going to quit, but I’m going up to 6 ml. x 2, where I started.

    I can’t tell you how much I appreciate your input!

    #119943

    sleepymoon
    Participant

    One more question SleepySteph…are you getting enough direct sunlight? It’s my understanding that if you don’t get enough Vitamin D, you can’t absorb magnesium well.

    The National Institute of Health recommends “Ten to fifteen minutes of sun exposure at least two times per week to the face, arms, hands, or back without sunscreen is usually sufficient to provide adequate vitamin D”.

    http://www.ods.od.nih.gov/factsheets/vitamind.asp

    So that is another concept to consider. I really hope something finally helps with your pain. I’ve been in so much pain this year, and now I’m feeling so much better I just want to fix everyone else. Heh. I do understand about having a sensitive stomach. Prior to starting the magnesium, it seemed like I wasn’t able to digest most of my food. Magnesium helps a lot with enzyme processes, apparently. I’ve been taking it since the middle of March, and for the longest time I was taking it (with potassium) every couple hours, which freaked my doctors out. Now I’m taking it about every 4 hours as my symptoms are really starting to improve. But also I realize PMS is coming again…that’s another thing that causes me to need more. Grr.

    Are you taking “Slo-Mag” or “Slow-Mag”? Just curious. I’m taking “Slow-Mag”, that my doc recommended.

    #119944

    Thanks for continuing to check back here. I have had more questions.

    Oh, I do take Slow-Mag. Just a spelling error.

    Once I get back on my Lyme treatment (off for various reasons), I’ll have to figure out when to take the minerals. I know mag can block some drugs. Maybe it just depends on the form. It’s so confusing!

    I’m going to up my mag to two 200 mgs. of glycinate plus two Slow-Mag at night. I’ll take two potassium tablets, one each with the glycinate.

    I’ve tested low for Vitamin D. Interesting. And some of my meds have me photosensitive. May have to add in more of that, too. And maybe I can get some sunlight.

    And what about calcium? What it’s relationship to mag?

    I went up to the 6 ml. X 2 last night. I’m exhausted. I’m still not getting enough sleep, and I definitely wasn’t at 4.5!

    I’m rather poor financially, and I’m supposed to be taking a mondo amount of drugs and supplements. I have to talk to the doctor and tell him I need the very basics. And I know these minerals are basics!

    I’m very grateful to you for sharing this information. I guess you’re kind of a magnesium missionary now! 🙂

    Steph

    #119945

    sleepymoon
    Participant

    LOL Magnesium missionary!! Hehe. I guess you could say that.

    Low Vitamin D…ah.

    When you say “photosensitive”, do you mean bright light bothers your eyes or do you mean your skin gets a rash from sunshine? If you are low in Vitamin D and bright light only bothers your eyes, then by all means put on some sunglasses and go outside to get some Vitamin D!! You can’t expect to absorb all the magnesium and calcium you’re taking if your aren’t getting enough Vitamin D.

    I’m glad you’re taking magnesium glycinate…it is one of the least toxic forms…meaning it won’t cause you diarrhea like some of the cheaper forms, such as magnesium oxide that are harder to absorb.

    Another thing you should probably know…you can’t absorb large amounts of magnesium all at once. I hope you are taking the two 200mgs at separate times. And the Slow-Mag is probably best at 2 separate times…but then again, it doesn’t say that on the bottle.

    All I know about calcium is that I’ve read magnesium levels affect calcium levels in a good way. Magnesium is needed to put calcium in your bones and to keep it there. If you’re low in magnesium, you might be developing osteoporosis. I read one study that measured how much magnesium and calcium women consumed and compared it with how much they retained. Women who had low magnesium levels also had low calcium levels, even if they supplemented with calcium. But high magnesium levels meant higher levels of calcium as well. I really don’t understand why the calcium recommendation is higher than the magnesium recommendation. I predict that’s going to change in the near future. After all the research I read, it seems like magnesium is finally becoming better recognized as really important.

    Sorry I don’t have links to this info today, but that is something you can research fairly easily if you want to. I really hope you find the magnesium helpful and that it enables you to tolerate the Xyrem better and get better sleep. Magnesium also might help with your disrupted sleep.

    As far as digestive issues…do you ever drink aloe vera juice? That can be really soothing. I’ve also been taking acidophillis with bifidus and FOS…my OBGYN put me on that to help rebuild my digestive flora.

    How do they treat Lyme disease? That sounds really interesting (and horrible, sorry you’re dealing with that).

    I’ll keep checking back for sure. 😀

    #119946

    Thanks for everything! You are a wealth of information.

    I’m managing with the glycinate. I’ve never had aloe juice. It sounds nasty! I take probiotics. What is FOS?

    I don’t notice any effects of the minerals. I still have lots of tendonitis throughout my body and muscle cramping.

    I can get sunburn more easily, and then there’s the cancer fear. I get some sun, and I take a vitamin tablet. I drink organic milk, too, with Vit. D.

    Lyme: High dose, long-term antibiotics. I’m allergic to many, unfortunately. Also, antimalarial for another tick-infection I have. I’m having lots of complications, so I’m off of most of the treatment, just taking some supportive supplements.

    I’ve had it for 21 years. I’m just getting proper treatment. 🙁

    I do take the mag at separate times.

    I hope I don’t have to go off the Xyrem. There’s only so much mag I can take. I’m in severe financial duress, and I often have to charge meds. High debt, and so many meds/supplements I need. Hubby, too, as he has diabetes. I would still take the mag and potassium, but I may not be able to take Xyrem.

    I deeply appreciate our conversations here!

    #119947

    sleepymoon
    Participant

    Wow. You really are in a pickle. And your hubby, too. My goodness. I’ll try to keep thinking up helpful things. At least you are getting treated now. How did you manage all those years?

    And no, aloe vera juice doesn’t taste that bad. I can drink it straight…it’s so soothing, when I have stomach irritation I crave it, taste and all. And sometimes on fine days I mix it in my other juices. It almost tastes carbonated. LOL

    FOS…I don’t know. I was just looking at the label of the acidophillis bottle and it said it had bifidus and FOS in it. My OBGYN recommended this kind, so…I dunno. I’ll look it up some time. Hmm.

    #119948

    I don’t know how I managed. Just a day at a time, holding on to hope. It’s getting thin, though.

    The pains are so bad; I think I’m going off Xyrem within the weekend. I’m sure it’s an adverse reaction.

    Will keep taking the minerals, though. They’re low in Lyme.

    #119949

    you probably have trigger points as well. They contribute to a large majority of pain even in healthy people. They also refer pain to other areas of our bodies. I have alot of these trigger points myself. I bought a book called Trigger Point Massage Therapy Workbook, Second Edition, and it teaches you to massage out your trigger points your self, to relieve your pain. Its a great book. Worth looking into!

    #119950

    Thanks for the tip! 😀

    #119951

    Rio
    Member

    Hi, I have fibro too but usually post on the narcolepsy board since that is my most recent Dx and how I found TAS 😀
    @sleepysteph wrote:

    I can get sunburn more easily, and then there’s the cancer fear. I get some sun, and I take a vitamin tablet. I drink organic milk, too, with Vit. D.

    Ironically, burning easily (or even just more easily then you used to) could be a sign of low D. And low D is a known risk factor in cancer. I too was clinically low (scary). My doctor Rx’d supplemental D3 (a LOT of it) as well as some daily sun.

    Thankfully, my levels are now within normal limits after only a few months of supplementing. I don’t always get daily sun though…too hot. Btw, my Mg levels are in range now too but still not optimal according to my doctor’s standard.

    Lastly, I noticed a question regarding Ca/Mg relationship. My understanding is that Ca trumps Mg when they are taken together. In order to get the benefit of Mg it should be taken between meals without Ca. Ca is best absorbed with food and some Mg.

    #119952

    sleepymoon
    Participant

    Well! I went to see a holistic MD (my insurance covers this!) recently, and he supported my taking the magnesium as my “cure” for pain, but he is concerned about why I need to take it so frequently. He wants me to increase my intake of malic acid…so I have been and decided to google “malic acid”. And one of the first things that pops up is this site: http://www.healingwithnutrition.com/fdisease/fibromyalgia/magnesiumstudy.html

    He also ordered bloodwork to check my Vitamin D and what I think he called my “intracelular” magneseium or something. I’ll see him again in a month. It was a most interesting visit. We are going to work on increasing other nutrients that will help my magnesium levels increase. This is going to be interesting…working with a doctor who understands these things. 😀

    #119953

    Rio
    Member

    Great link Sleepymoon 😀

    Thanks for possibly tweaking my doctor’s protocol. I am hoping it is the missing link to getting my Mg levels to stay up.

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