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Geekwench
Joined: 17 Apr 2010
Posts: 170
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 Posted: May 29 2011 Post subject: My Experiment in Taking Xyrem w/o Vitamin Supplements |
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I have, for almost 4 weeks now, been taking Xyrem without my usual arsenal of supplements. This originally began accidentally, as I was traveling extensively and just kept forgetting to take my day's supply with me from the hotel. After the first week or two, I decided to try an experiment and just ditch the supplements altogether to see if I noticed anything different.
Well, I definitely did. The first thing I noticed was that I was sleeping MUCH longer on a single dose of Xyrem- I was getting 4 hours, where I would normally get 2.5 to 3 hours of sleep per dose when I was taking the supplements. Initially, this seemed like a good thing, until I realized that there were a couple of additional changes:
1. I apparently don't sleep as well without the supplements, because now, even though I'm getting 8 hours of sleep on two doses, I'm finding myself snoozing the alarm for an hour or more, and I spend my first waking hours drinking coffee because I need it, not just because I like it.
2. When the Xyrem wears off, it's much more jarring when I wake up than it was when I was taking the supplements. With the supplements, it literally feels as if I'm floating under water and bobbing to the surface when I wake up, and once I've "surfaced", I am fully awake within about a minute. Without the supplements, I'm just suddenly awake and the first thought in my head is, "Oh s--t, I'm awake, but I'm SO TIRED. Just a little more sleep..."
The other change I've noticed is that my skin has gone to heck in a handbasket. I'm breaking out, my skin looks dull and saggy, and just generally gross.
So while this was a very un-scientific and originally unintentional experiment, it's back to the supplements for me. I'm curious to see if I will again notice a difference once I've been taking them regularly once more. I may only get 6 hours of sleep with them, but it's a lot more restful 6 hours than are the 8-10 I'm getting now. |
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tree by the stream
Joined: 22 Mar 2010
Posts: 38
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| Posted: May 30 2011 Post subject: |
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Thank you so much for sharing your experience. You know, I never thought about the supplements helping acne --- that is good to know! It does sound as if you are getting such better quality sleep with the supplements. Hmmm, but it would be nice to get this qualtiy and more sleep time, too. I wonder if you took the supplements at a different time - such as earlier in the evening with or without a meal - if this would make any difference as to quality and quantity?
My problem is that I am supposed to avoid B vitamins. I am on the prescription converted folate and I was told to not take B vitamins b/c then the folic acid would 'take the spot' that the converted folate needs. I am finding all this frustrating b/c I am having to stay at a very low dose b/c of side effects. And I am as tired as you are without the supplements.
Do please report back on how you feel after starting them back - very interesting topic. |
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hirschda
Joined: 25 Mar 2010
Posts: 47
Location: Spokane Valley, Washington
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| Posted: May 30 2011 Post subject: |
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This might be my new favorite: Autobiographical Case Study, stories that started as an accident and ended on purpose.
(I am also my own best case study)
This is good information though, as I struggle to take my supplements sometimes (since I already take so many pills, sigh).
I never found the specific post, but I remember you (Geekwench) identifying that you switched from one kind of Magnesium to another... I wanted to ask, then forgot... this reminded me!
1. What was the original kind and what kind did you switch to?
2. Why?
I take Magnesium Citrate... the Tsp/8 oz of water- mix and choke down on an empty stomach. I would love to know your experience with it, and if it has worked. |
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Guest
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| Posted: May 31 2011 Post subject: |
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Last edited by Guest on June 18 2011; edited 1 time in total |
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Willow2007
Joined: 03 Feb 2007
Posts: 1476
Location: Iowa
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| Posted: June 02 2011 Post subject: |
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| I've been on Xyrem for about 4 years. and I've taken it with vitamins, without vitamins, and no matter what I take them with, I don't notice a difference. I don't have BP spikes, no anxiety, nothing is different. Occasionally I don't sleep well, and I wonder in the night why I'm waking up. But the next night I'm back to my regular sleeping. My sleep hygiene is always the same, I stop eating about the same time every night. |
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Geekwench
Joined: 17 Apr 2010
Posts: 170
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| Posted: June 05 2011 Post subject: |
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| dejavu wrote: | I took one of the vitamins that you recommended write after I read your post.
I won't again. |
I'm really sorry that it didn't work for you- which one? |
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Geekwench
Joined: 17 Apr 2010
Posts: 170
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| Posted: June 05 2011 Post subject: |
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| hirschda wrote: | This might be my new favorite: Autobiographical Case Study, stories that started as an accident and ended on purpose.
(I am also my own best case study)
This is good information though, as I struggle to take my supplements sometimes (since I already take so many pills, sigh).
I never found the specific post, but I remember you (Geekwench) identifying that you switched from one kind of Magnesium to another... I wanted to ask, then forgot... this reminded me!
1. What was the original kind and what kind did you switch to?
2. Why?
I take Magnesium Citrate... the Tsp/8 oz of water- mix and choke down on an empty stomach. I would love to know your experience with it, and if it has worked. |
I was taking magnesium oxide, but it causes [forgive my being graphic] diarrhea. I read that magnesium malate is a bit gentler, so I tried it, and I've found that I no longer have the "issues" that I had with the other form of magnesium. I typically take one tablet in the AM and one in the PM- RDA is actually three per day, but I also take a multivitamin, so I'm not too worried about not taking the "full" dose of magnesium malate. |
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Geekwench
Joined: 17 Apr 2010
Posts: 170
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| Posted: June 05 2011 Post subject: |
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| Willow2007 wrote: | | I've been on Xyrem for about 4 years. and I've taken it with vitamins, without vitamins, and no matter what I take them with, I don't notice a difference. I don't have BP spikes, no anxiety, nothing is different. Occasionally I don't sleep well, and I wonder in the night why I'm waking up. But the next night I'm back to my regular sleeping. My sleep hygiene is always the same, I stop eating about the same time every night. |
As I recall, Willow, you also have a number of concomitant issues, though, don't you? Fibromyalgia, apnea, some others, right? Obviously each person is different- I'm just posting my personal experiences.
And for the record, I recommend that anybody who considers supplements to help with Xyrem side effects talks to his/her doctor first, because IANAD. I am simply somebody who takes a trial-and-error approach to see what does or does not work for me.
I think that there are no universal truths where this stuff is concerned. For example, you stayed at a very low dose (2-point-something) of Xyrem for over a year, IIRC. If I had done that, I would have ended up quitting Xyrem because the low doses did nothing but make the room spin and nauseate me- I got NO sleep. Just as our titration experiences were very different, I imagine that a lot of our experiences are different. |
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Geekwench
Joined: 17 Apr 2010
Posts: 170
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| Posted: June 05 2011 Post subject: |
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| tree by the stream wrote: | Thank you so much for sharing your experience. You know, I never thought about the supplements helping acne --- that is good to know! It does sound as if you are getting such better quality sleep with the supplements. Hmmm, but it would be nice to get this qualtiy and more sleep time, too. I wonder if you took the supplements at a different time - such as earlier in the evening with or without a meal - if this would make any difference as to quality and quantity?
My problem is that I am supposed to avoid B vitamins. I am on the prescription converted folate and I was told to not take B vitamins b/c then the folic acid would 'take the spot' that the converted folate needs. I am finding all this frustrating b/c I am having to stay at a very low dose b/c of side effects. And I am as tired as you are without the supplements.
Do please report back on how you feel after starting them back - very interesting topic. |
TBTS- It has only been about a week and I've not been as diligent as I should be, but I've mostly started taking the supplements again. I take a really good multivitamin that requires you to take eight capsules a day, but I have not been managing to take more than 2-4 per day just yet (I've been busy and distracted). I have, however, been making sure to take the magnesium, calcium, potassium and curcumin every day, as well as B-12 and P5P.
I normally split the pills out over the course of the day for a few reasons:
1. I feel like I'm putting so many pills into my body that sometimes I just can't think about swallowing another one without wanting to gag.
2. There is no such thing as a "one a day" vitamin- whether a multivitamin or individual supplement.
I had spine surgery a few years back and the consulting cardiologist on the case (I don't have cardiac issues; I am part of a clinical trial for an artificial disc) was also a nutrition specialist. I tend to be rather organized and detail-oriented, so when I had the surgery, I had my living will and various other documents with me in a binder. One of the documents was a list of all of the supplements I was taking and in what amounts. The cardiologist looked it over and approved of what I was taking and in what amounts, but she also gave me some interesting information.
She had just completed a study of some kind at Harvard Medical School in which they'd done evaluations of vitamins, efficacy, etc., and what they found was that there are very few brands of vitamins that actually are as potent as they claim to be. It was also around this time that physicians started recommending splitting vitamin doses between morning and evening, and for some to be taken with food, while others should be taken on an empty stomach. The reasons for the food vs. empty stomach are different for different vitamins/minerals, but the advice to split your vitamin dosage between morning and night is because for a lot of vitamins, your body can only absorb a certain amount at a time, or may absorb better at one time of day versus another.
So anyway, as a result of the conversation with that doctor, I started taking supplements at different times of day, etc., and I eventually found a really good multivitamin that, if I could remember to take all eight capsules daily, would pretty much be all I would need to take. Since I never seem to manage to take all eight capsules a day, I do at least take the supplements I've mentioned before so as to balance the excess sodium in Xyrem and hopefully to protect against the potential neurological side effects (the excitotoxin thing- I'm still not sure I entirely buy in, but that's why I keep using myself as a guinea pig.  )
I have tried taking the various supplements at different times of day, and what I'd found in the past was that taking the ones that i take specifically because of the sodium in Xyrem tend to work better if taken shortly before bedtime. Basically, when I'm saturating my body with sodium, I like there to be some calcium, magnesium and potassium in there to help balance everything out. I take the curcumin at night, typically, because of the beneficial effects on the liver. The B vitamins, I take either in the morning or at night and haven't noticed much difference either way.
How disappointing that you can't take B vitamins- I do feel as though I have more energy when I'm taking B-12, in particular.
I will definitely post back once I've managed to get myself back onto a consistent supplementation schedule for a few weeks and have had a chance to see if it makes a difference, but even with my relatively spotty supplementing this week, I have noticed one difference- the three days that I managed to take most of the pile of pills, I went right back to my 2.5-3 hours of sleep per dose of Xyrem, but I woke up early and easily in the morning. The days that I didn't, not so much.
Obviously, these are just my experiences and even if my observations are 100% accurate, they're still just my experiences. What works for me may not work for others, but I figure it's at least worthwhile to share experiences so people can try things to see what works or doesn't work for them. |
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