WHY "low and slow" for Xyrem?

[Geekwench]

So, I see it over and over, but I never see anybody explaining why they think people should go "low and slow" with Xyrem. What is the reason for the recommendation? I'm not saying it's a bad or good recommendation; I'm just curious as to why people keep saying it.

So, why do people say it?

Thanks in advance,

GW

[Willow2007]

There are many reasons. 1. because there is a high salt content in Xyrem, which can cause feet and hands to swell, blood pressure to go up, etc.
2. You can have side effects from sudden increases, your body will adjust better to a slow increase. 3. When you are actually sleeping well, your body makes more HGH, which changes the chemicals in your body, some people need to adjust their thyroid, some people need more calcium or magnesium, etc. 4. After an increase in Xyrem, you should stay at one amount for a couple of weeks (I stayed at 2.25 x2 for over a year), so you can see if its right for you. If you are sleeping well, staying asleep, have lots of energy, why increase and risk more side effects? If the meds are doing what you want them to do, there is no reason to increase and risk side effects, BP increases, etc. The idea is to use the least amount of meds to do what its supposed to do. Lots of people think that increasing will mean they will sleep better. That's not exactly true, because I sleep best at 3.25 and 3.0. If I go past 3.0 for my second dose, I feel drugged for quite awhile in the morning. And it takes weeks sometimes to see if you feel better or if you need to increase it again.
5. What's the rush? If you plan to be on Xyrem for a long time, might as well be gradual and learn what is best for your body. Add vitamins , etc. to see if that helps too.

[Geekwench]

Please don't make assumptions based on my asking a question. I didn't say I was in any rush; I simply asked a question.

And as for the lower dosage, for me, the low doses DID NOT WORK. AT ALL. All I got was headaches, dizziness and various other unpleasant side effects- but no sleep. So, for me, staying at 2.25g for a YEAR would have been nothing but torture. I am educated and intelligent, and I said absolutely nothing that would indicate that I'm looking to "max out" my dose or take more than the bare minimum required to get me to sleep, so again, please don't infer what you think I'm doing with no actual information about my use.

Thank you for answering the question I asked; I appreciate it. But please leave the inferences out, especially since they're quite inaccurate. Extremely inaccurate, as a matter of fact. And I'm already taking supplements, and am not having any problems with Xyrem, which is why I asked the question. I see people saying it over and over without actually explaining why they're saying it, and in your response, the only thing that strikes me as verifiably factual is the salt content comment. Can you provide me with a link to information about why it is "bad" to increase a dose versus staying at one that doesn't work for a long period of time?

I don't mean to sound belligerent, but I admit to being offended by the assumptions you've made about me based on a very simple question. All I was seeking was factual information about why "low and slow" is better than any other dosing approach, because it seems to be something that people keep saying without any actual reasons except that somebody else said it to them.

[Willow2007]

My, my Touchy aren't we?

There were 3 words in my entire post, "what's the rush?" that you are taking as my entire post. I happened to think there was quite a few points in my post that were helpful. THAT;s why one should go slow.

there are a lot of people that think more is better. They go up to 4.5 x2 in a few weeks, then they find the side effects are horrible, then they quit taking it and tell everyone that Xyrem does not work for them.

I was not being presumptuous at all. However, I will be presumptuous from now on. When I see YOUR name, I will presume that you are a grouchy so and so, and I'll not answer your posted questions.

[mich.monica]

I would like to respond to Willow. I also think you did not make any assumptions about the above question.
My Dr. was "in a rush" to give me 4.5 x2 I have no other information about Xyrem other than the Dr and the pharmacy. So, I did what I was told. I was able to sleep soundly but woke up like a hangover for hours. When I went to the Dr. and told him I didn't feel better he just increased my RX.
I am thankful that I found this website. I read a post from Willow one day about the slow approach. I decided to start over at 2.25 x2 and did not increase for weeks. I feel so much better. I am very, very grateful that people are here to tell their story. I know we are not all alike but personal stories are so helpful. I will continue to look for other ideas to make me a functional PWN.
PLEASE BE KIND TO EACH OTHER. I need people to post their ideas, even if they are not scientific. The worst thing to happen is that I won't try the idea.

[Geekwench]

Willow, you DID make assumptions about me, and I called you on it. There is no need to follow up with further snark. The FACT is, you drew unwarranted inferences, and made assumptions about why I was asking the question. I asked a simple question and got only one factual response from you, which was about the salt intake. I am seeking valid, verifiable REASONS for the recommendation, not anecdotal assumption. If you don't know, simply say you don't know- there's no need to make it about being snide to me and making assumptions. I am seeking REFERENCES for this "low and slow" recommendation. I didn't challenge it, I didn't say it was wrong, I didn't say anything EXCEPT that I wanted to know WHY people make the recommendation. It seems to me that you don't have any actual science, just anecdote, so my current opinion of the "low and slow" is that it is a recommendation that is based on somebody's personal experience, not that it's actually based on empirical evidence. Simple as that.

[Geekwench]

It really doesn't matter if you didn't think Willow's response to me made assumptions about me- the REALITY is, Willow DID make assumptions about me, and they were uncalled-for.

I have no issue with sharing information. I have no issue with people even sharing information based on their personal experiences. But when I ask a simple question and somebody chooses to make assumptions about me based on the simple act of ASKING A QUESTION, it ticks me off, and when the person then follows up with even MORE snark, my opinion of that person and that person's OPINIONS is colored accordingly.

Now I feel that Willow parrots things without doing any actual research rather than thinking that Willow is a friendly, helpful person who might provide a useful answer to a simple question. I feel this because of the way Willow responded and the inferences Willow drew, which, again, were unwarranted.

Just because it worked for Willow to stay at 2.25g 2x nightly for A YEAR doesn't mean that it's valid for everybody to follow Willow's dosing. As a matter of FACT, had I stayed at 2.25g for any longer than I did, I would have stopped taking Xyrem altogether, because it DID NOT WORK at that dose. It DID NOT WORK at any dose until 3.75g. I titrated my dose based on MY experience and MY chemistry with MY doctor's guidance. What I did was to start at the 2.25g 2x nightly dose, which was miserable. It gave me a headache, made me dizzy, and did not make me sleep. I then titrated .25g at a time, spending 5-7 days at each titration to see if I got anything other than worsening side effects. The first time I "just fell asleep" was at 3.75g, and I stayed at that dose for weeks and noted the success rate (sleep was success, miserable lying in bed with room spinning was failure). I had a 30% success rate at 3.75g. Now, however, I have a near-100% success rate with 4.25g for the first dose and 3.75g for the second dose.

For Willow to tell people something that appears to be based purely on his/her personal experience rather than actual verifiable fact means that the "low and slow" posts I keep seeing are, as far as I can tell, based PURELY on people's INDIVIDUAL experiences, rather than on empirical fact. And that is my point- none of what Willow lists as "reasons" for the recommendation is backed up by any science whatsoever, just by parroting of opinion as if it were fact.

I have not had problems with Xyrem- my appetite has returned, I'm sleeping well, and I'm no longer lying in bed completely mentally alert while my muscles contract and my head aches and I suffer because the dose isn't high enough to get me to sleep. So, for me, "low and slow" was NOT the way to go, and had I tried to stay at 2.25g because of some specious recommendation that this is somehow a "better" way to titrate, I would have quit Xyrem altogether because, as I said, IT DID NOT WORK at the lower doses. I wonder how many other people have given up on Xyrem because they took one person's experience as gospel and tried to suffer through a dose that was too low to help them sleep, but more than enough to give them unpleasant side effects.

[sleepysusan]

Geekwench, you're the one who asked the question. Be grateful you got any answers at all. With your attitude, you're lucky anyone bothers.

[Geekwench]

[Geekwench]

Perhaps you might take a step back before piling on with more snark. I would assume that we are all adults here, despite evidence to the contrary. Perhaps you might try to back off a little on the emotional responses and re-read things with a cooler head.

I asked a simple, single question and got a lot of assumption about me and my motives in return. Just as it is my right to be offended by somebody making such assumptions, it is your right to post a needless response about my "attitude", but the reality is, Willow DID make more than "three words" of assumption, and your response only furthers my opinion that there is a lot of opinion being presented as fact going on here. I am certain that your opinion of me is equally derisive, since you've expressed as much, so really, there's no need to express it again.

[sleepysusan]

Geekwench, you're the one who has lost her cool! Willow gave you a response that was based on her own experience and understanding. You have taken offense to it for some reason and you just won't let it go. If a response isn't helpful, thank the person for what they offered and then clarify the question. Don't start a war over it.

[Geekwench]

You're projecting. Look it up. Seriously, how about if we all just ratchet the emotion down a few dozen notches? This is a bit ridiculous.

[yawningdog]

Back to the original question, why low and slow.

I believe that the deep sleep gotten with Xyrem, that we have not been getting, comes as a shock to our systems. Human Growth Hormone is released during deep sleep. It effects the pituitary gland which in turn controls all the others. This 'revving up' of our system can lead to a number of side effects.

I suffered from BP spikes when I first started, and I jumped in a 3 and went to 3.75 in a week. I got the vitamin supplement info from the American Heart Association's webpage. I found that I had to stop all stimulants, take the vitamins and get some exercise to finally get over the BP problems. I have stopped and restarted Xyrem a couple of times. Every time I restart, when I up my dose the BP problem comes back.

I have also experienced going hyperthyroid on Xyrem. HGH is the only explanation for me to suddenly be producing more thyroid of my own, making my synthyroid dose suddenly an overdose.

I am not surprised that 3.75 is where you a finally getting it to work. Over 3 seems to be a common therapeutic point. If you find that you start to get a stiff neck or shoulders, you might be getting some of my BP problems. That is how it started for me.

I hope you fly through this with no side effects at all, not everyone has problems but, they do happen.What is unfortunate is that most doctors and even Jazz doesn't have any answers for people. It is only here, with the people that are taking the medicine rather than those prescribing it or manufacturing it, that you can get any kind of help if things start to go wrong.

Currenly, my resting heartrate and bp are slightly higher than they were before Xyrem. That seems to be a permanent change for me.

[Tracy]

[LeslieFromTexas]