Xyrem not working, seroquel? CES device help anyone?

[cyrusromeo]

I've had severe insomnia for over 20 years, it came on suddenly and a couple of months later I was bedbound with chronic fatigue syndrome. Unable to function beyond crawling to the bathroom and struggled to eat. Have never been a napper, no matter how sick and exhausted I am, need some kind of drug to sleep and feel I've done it all. Illness has been up and down, severe crash this last year and was approved by my specialist for Xyrem 2 years ago. Worked beautifully for a long time and now it seems to have really lost effectiveness. First dose, I may be up an hour later. 2nd dose, 3 good hours. It just isn't enough and I've decided to go off it. (Lots of tweaking and trying different things). Think it may be contributing to some depression, hard to tell when I'm pretty sick with the cfs flare. Anyway, Ambien, all those are not an option for any length-it seems the Xyrem has increased my tolerance a great deal when they used to work. I'm going to switch to Seroquel. Tried it last week and while I'm not looking forward to the 'switchover' hope it will work.
Any experience w this? Also, I've read ads for CES devices that are for insomnia and found almost nothing here. There is one that offers a full money back guarantee. Anyone tried it?
This is a long and varied post, my apologies. I've read some incredibly helpful and insightful posts (somehow my membership went inactive and couldn't post) and I'm so disappointed that the Xyrem just isn't working.
ps Had a script for Trazadone and the folks at Jazz called me, my doctor and wouldn't refill the script until they confirmed with my doc I wasn't taking it at the same time. I know a lot of folks combine meds and I never knew there was an interaction, never mind it came up on their radar with so much concern?
In the meantime, trying one dose of xyrem then one of seroquel. Hoping for some kind of relief here!
Whew! There it is, that's where I am...

[Irishvamp7587]

I have to be quick cause my Xyrem is kicking in...

I had the same issue with Ambien after Xyrem. I've had some issues with Xyrem and have gone off it a few times. I am always terrified of the rebound insomnia. So I've taken ambien. Years ago I took it and it knocked me on my butt. Now, I have to make sure I haven't eaten for about 3 hours and I have to take 20mg (which I know is double the recommended max) and even then it's questionable if it will work.

Then there is seroquel. Again, I took it awhile ago (before Xyrem) and it also knocked me on my butt. Then recently I tried taking it cause I wanted to stop Xyrem and it gave me what I think people would call a paradoxical effect. My heart was pounding and racing so bad, I was terrified, I almost went to the ER, I was so scared. I used to do drugs when I was younger and the pounding heart from cocaine was nothing compared to this. I thought I was going to die, I think Xyrem changed something in my body that makes me react differently to medications.

Lastly, I tried Trazodone. I tried up to 200mg and it was not even close to strong enough to put me to sleep at all.

Ok, sorry but I really must go to sleep. I hope some of that was helpful.

[Perchance Dreamer]

I have a mild case of narcoplepsy and also fibro and CFS. I'm on Xyrem, but have to take supplements in the evening to get a good night's sleep.

My sleep doctor is very mainstream, but when I started going to him, he offered me the rental of an Alpha-Stim, a CES device. It helps me a lot. He said it's fine to use it and take Xyrem.

I think the CES devices require a lot of patience. First, I'd look into renting one before buying it.

Also, you have to experiment with these variables: how many times a week to use CES, what duration, which setting, what time of day, and whether it works best with your eyes opened or closed.

What works best for me for sleep is the following:

- Every 3rd night (any more often, and it's not effective for me).

- 45 minutes duration at a setting of 1. For me using it a long time like this at a very low setting helps more for sleep. Alpha-Stim suggests starting using it around 20 minutes at a higher setting and using it during the day only, but that doesn't work for me.

- Eyes closed works best for me. Most people are fine using it with their eyes opened.

If you are interested in the Alpha-Stim, I suggest going to their web site and calling the distributor. I'd ask if anyone in your area lets you rent one before buying it. If not, ask what their return policy is.

Good luck!