Discussion in 'Fibromyalgia Main Forum' started by place, Jul 20, 2006.
How has the treatment been going?
[This Message was Edited on 07/20/2006]
One thing I've been reading about that may be of interest to others: When you first titrate up, you may have fluctuating blood pressure for a few days until you get used to it and everything settles down. Some get headaches from that, but it doesn't usually get out of normal range, from what I understand.
I read that it was happening to others and so got a bp cuff and have been keeping track of it. Yes, my bp is fluctuating too. I can tell when it goes down, because I break out in a sweat. I don't like having it go up, but it doesn't seem to get dangerously high. However, I'll be bringing it up at my next appt.
I'm thinking that it might be the hormones kicking into gear, from the restorative sleep revving up the hypothalamus.
Kind of like going thru adolescence all over again LOL.
So far, the benefits are far outweighing the side effects for me.
Place, have you started on it yet?
Just a quick update...
I took Xyrem for about 10 months and my FM/CFS symptoms are still in remission! The last time I took it was 10 February 2006- FIVE MONTHS AGO!
I've talked to several other people who have found that after taking it for a while, our bodies got enough "good sleep" to start healing, and we no longer need it!
The only thing I still take is 2mg of Klonopin before bed for Restless Leg Syndrome.
I had been disabled by FM/CFS for 14 years when I started the Xyrem, so I am a success story..
- julie (is free!)
We sang Life's a Highway
There's only one way you're gonna
get through it
When she starts to twist
be more like Chris
Pull your hat down tight
And just LeDoux it!
Thank you, Julie (free!), for posting that.
I've had sleep problems for about 20 years, so I think I'll be on it awhile, but hopefully not more than a year~ give or take a bit.
I've been taking it for 45 days now, and still have fatigue, but the mental fog seems to be history, YAY!
I'd like to ask you about ongoing 'maintenance' if you don't mind...Do you still have to be very careful about pacing yourself, any diet restrictions that you used to do to manage your condition? I take tons of expensive supplements that basically try to make up for no HGH. I'm wondering when I can start to back down on some of those expenses. I know everyone's different, just trying to get an idea of what to expect.
Daisy, I was going to put you in the title, but I thought you might be sick of answering my questions by now!
That's so funny about the teenage issue, as long as you don't get acne and say "like" in every sentences, it sounds like you'll survive without a mark!
I bet it is the hormon's that you were missing that are now making an apperarance, that just makes me so much more excited to take the drug.
The question to Julie is great! I have the same issues with pacing and diet changes. When can I have my white bread back!
I was supposed to have an appointment this week with my doc to fill out all the paper work but he called just before my apt, to say it had not come in the mail yet!
I was so excited for the apt., then I was really bumed about not moving on with it.
He said he would call when it came in, but I am leaving next week, so it won't be happening anytime in the next two weeks!
Thanks both of you for posting, if this drug works for me, I hope I can take your generousity of your time and "pay it forward" to help the others on this board.
Have a great weekend!
You're probably really antsy by now wondering how you're going to fare with it.
About the teenage thing, I am going thru menopause and figure that's being dragged thru teenage backwards (Ha!) so this is just more to figure out for me.
Seeing as how there's hundreds of people on Xyrem, I'm surprised there aren't more people on the internet exchanging notes.
Julie(is free!) has been very helpful. I'm glad to see it's possible to stop taking xyrem and be symptom free.
I find I'm still living with a feeling of marking time. So I'm comfortable with Xyrem and the sleep it gives me, but still waiting for it to feel routine. (If that makes any sense!)
Hope you have a good two week vacation, Place.
some of the message boards dealing with sleep issues..
I've seen feedback on there about Xyrem ..
Had my first night on Xyrem last nite and I feel a bit wobbly today.. but more mentally together.
The reason I'm posting tho is not to give feedback.. it's too early .. but to mention some hiccups I had in case they can help others.
On my doctor's advice i took 2x 6ml, and after the second dose I got up to go to the bathroom, threw up a bit and then kind of passed out on the floor.
It wasn't a big drama. boyfriend heard me ... but he couldn't wake me for an hour... and then I went back to bed.
Anyway, so clearly I am going to back off the dose and go down to the recommended 4.5ml x2 per nite. I'll try eating earlier as well.
Last nite, i left 2.5 hrs after a meal... which I bolted down.. because of my poor timing...was running late ... but others have suggsted 3 and 4 hrs would be better.
Also, can I suggest those who are working and trying Xyrem take their first dose on a weekend, when it doesn't matter so much if your first night goes a bit awry.
Also, it helped that I had educated my boyfriend. He wasn't alarmed .. he just stayed with me to make sure i didn't vomit in my sleep or whatever.
I REALLY hope this doesn't put folks off. I see it as a teething problem and I plan on sticking with this treatment.
And I am very grateful to those who have posted on this board about their experiences.. it prepared me for what happened esp. as one woman posted about an identical experience...
Sorry you had a not-so-great experience your first night. Good for you tho--you've got the right attitude and approach to make it work for you.
I'm really strict about the 4 hour break from eating, even tho it sounds extreme. A bonus: I'm losing weight that I need to have gone. The few times I've only had 3 hours after eating to the first dose, it's shown up in a longer time to get to sleep, so losing that first strength (the half life being 45 minutes only!)
I think I may have found my best dose (after 7 weeks):
first dose:8.5 ml
second dose: 8 ml
I'll stay here for awhile and if I consistently get to sleep within 20-25 min. like last night, and sleep 8 hours, I'll keep with it. Last night was the first time I've fallen asleep in under a half hour.
And I've finally got to a dose that equals my husband's deep sleep. When I need to wake him from a deep sleep, it's hard, I have to shake him and call his name a few times. I'd swear he's the one on drugs! Hee Hee
I must recommend the talkaboutsleep website....there's a lot of good feedback on there.. and a lot of folks say that it's common to have side effects in the first couple of weeks and then they wear off.
Some of the narcoplepsy sufferers also said it causes swings in blood pressure because of the sodium.
Well guess what I swigged before I went to bed last night?
A bottle of water with REcup..an electrolyte drink heavy on the sodium (i think)....
So basically I gave my body a huge shot of sodium. That could be the culprit.
Anyhow, I am hugely encouraged by the positive effects reported by others.. including the last poster.. adn I will press on.
apparently weight loss is a side effect or so say the folks on the narcolepsy board. Go figure.
2nd nite on Xyrem went off smoothly. No probs, except the 4.5ml gave me precisely 5 hrs sleep.
I will keep titrating upwards and report back in a couple of weeks ..with some more meaningful data.
That's fine with me! Side effects don't all have to be negative. Even tho I do have BP flucuation, it doesn't go out of normal, and my Dr. is not concerned. He says it happens to everyone in a normal day.
I have read the posts at the Talk About Sleep site. The FM forum there is not well supported, but their old posts are very informative. Actually the insomnia, narcolepsy, and FM forums all have a lot of info about xyrem.
One of the main things that I work with is the dawn effect of it wearing off. I almost always wake up after 2 1/2 hours and am very alert. If I stay in bed, I usually go back to sleep and get another hour or so of REM and light sleep. But sometimes, like last night after the 2nd dose, I don't. No idea why. And then I'm usually alert all day, so don't catch up with naps. It's a minor lack of sleep compared to pre-xyrem, so I'm not real concerned.
I just saw your post and wanted to tell you about "maintenance" for me.
I've found that I can live my life pretty much like I did before I got sick. I haven't needed prescription pain medication for ANYTHING for about two months <yeah!> and I've been able to stop the medication that I took to "prevent" daily migraines.
I do try to eat healthy. I follow my own version of a high protien/low carb style of eating, but I'm not fanatical about it. I stay away from sweets and processed foods, but do drink a couple of cups of coffee in the morning and indulge in an occasional latte.
If the Xyrem is working for you, your body should start producing HGH during level 3/4 sleep. One of the risks of supplementing HGH is that it causes cells to reproduce quickly. If you are getting too much HGH through supplementation, it can cause BAD cells to replicate quickly and you can be at a higher risk for cancer to spread more quickly than it may have otherwise - that's the risk that people who take it to "stay young" are taking when they get it from doctors who will prescribe it to anyone who can pay for it.
Unless you KNOW that you are deficient in HGH and have a good doctor to help you supplement it correctly, I would offer this warning.
I take USANA gold pack supplements and that's the only supplement that I need.
My fatigue is under control and I'm doing things that I haven't been able to do in YEARS! I've been off the Xyrem since early Feb 2006, and so far my FM/CFS symptoms have not returned. I've NEVER had any kind of "remission" like this since I got sick in 1991! And I've NEVER felt this well without medication!
Let me know if you have any more questions and GOOD LUCK!
- julie (is free!)
When you're going through Hell, keep going!
- Winston Churchill
WOW, that's awesome! I can't wait!
I don't take HGH, but things like CoQ10, Acetyl L-carnitine, and lots of expensive, high-dose vitamins. I'd like to take a reasonable amt. of vitamins, and not break the bank like I am now.
One thing I do think about: what if whatever causes this to happen reoccurs? (Like catching a flu and then the process starts again.) I want to be able to nip it in the bud. Do you have a stategy in mind for that?
I appreciate you popping in to answer questions--I'm sure your life is busy!
If you don't mind I have a couple of questions for you.
I'm interested in speaking to my sleep specialist regarding Xyrem, I get 0 stage 3 and stage 4,
My question is I am a single mom with a 10 year old daughter, would that be out of the question to take this type of med.
My concern is in an emergency would I be able to awaken?
I believe the sleep is at the core of this disease for me. So I wonder if it's an option for me. Any feedback? Thank-you Ritatheresa
I understand. My husband works nights so I have concerns about that too.
Once a week I ask my husband to wake me about 45-60 min. after falling asleep. My goal is to sleep as deep as he does. I have to touch his shoulder and if I say his name and that's all he starts to stir and then goes back to sleep. But if I talk more, he wakes up. He wakes up for loud noises, I've noticed. This is normal deep sleep.
I didn't match his deep sleep until I got to 8.5ml. (the first dose. I take less for the second dose because I sleep better.) I notice I still wake up if there's a noise or if I need to go to the bathroom. I can walk if I need to, but am careful, knowing I'm not fully alert.
I have minor apnea when lying on my back. If I ever
end up on my back in my sleep, I spontaneously wake up and turn on my side.
So I'm comforable now with taking xyrem, after 8 weeks, but will continue to monitor how deeply I sleep. I think as I heal, I'll need less xyrem, so I want to keep track of that to know when to start backing down on the dose (or whatever happens at that point--I don't really know yet).
While titrating up the dosage, there was a point when I was definitely getting better sleep and was benefiting from it, but the sleep was a lot lighter than what I get now. I easily woke at the least disturbance. Maybe you could reach that point and just take longer to heal?
I'm going to discuss it with my doctor, have a great day, Ritatheresa
I can see your dilemma, but then u have to balance that with the health risks of long-term sleep deprivation.
If you do decide to pursue it.. you might want to have an adult friend/relative sleep over the first couple fo nights until you are comfortable with it...
It's been a godsend for me thus far....
I've been having major anxiety and paranoia issues.
Backed off on the dose a little and that helped. but I'm wondering about this drug.
I mean sleep deprivation is a terrible thing.. but what about suddenly giving the body what I assume are huge amounts of HGH.
Is that safe? Beginning to wonder, and also whether it wouldn't be smarter to wait until more is known about its long-term use in CFS patients.
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