Officially off xyrem

Yep, told neurologist today it wasn’t working out for me and she agreed. So I am dropping it. She said it was fine to just drop it and I don’t have to taper down or anything but I am nervous after my experiences in the past with just trying to drop things, even if it’s at the lowest prescribed dose. But I’ll see how it goes…I’ll give updates.

I’m going to go back to seroquel as a sleep aid but I’m gonna try it a bit differently. I want to go down to 25 mg bc when I was attempting to wean off it that still made me sleepy I noticed and I never initially tried 25 I was given 50 right off the bat. And I want to try to take it only as needed to avoid developing that dependence again bc seroquel rebound insomnia is real hell. Hope it works!

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Seroquel is good for a sleep aid, but what about your hallucinations, you should really be taking a antipsychotic dose of something appropriate, when you are troubled by physical manifestations of demons, and also something to help you function during the day.
You really need to discuss new medications with a psychiatrist.
The older generation antipsychotics are effective for hallucinations, and some only have a short half-life so you won’t feel to drugged during the day.
Dystonic reactions and TD are more common with some of them.

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Thanks for reminding me I need to start my vraylar today! Maybe if this one doesn’t work I’ll try haldol but the TD risk is really concerning to me. And weight gain.

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I’m on haldol and no weight gain. As for TD no signs yet and I’m on max dose injection.

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Haldol often cause less weight gain than some of the newer antipsychotics.
I would hate you to get TD from it, it is a real possibility if you intend to take it for a long-term. I have read that young females are more subjectable to TD, but it may not be true.
TD usually occurs when a high dose is taken for a long time, but some people are unlucky and get it a at low dose.
Good luck with the Vraylar, I have not studied that drug but I hope it helps you.

Since alcohol is almost the only thing that makes me sleep well. And since alcohol and Xyrem are almost the same I brought up Xyrem up in my appointment with my pdoc (with the knowledge that Xyrem does way less harm than alcohol on sleep-issues).
I’m first going to trial a CPAP machine, if that doesn’t help I will probably ask for Xyrem for a good and restful night of sleep.

In the US xyrem is very tightly regulated & difficult to be prescribed. I am not sure you can be prescribed it unless you are diagnosed with narcolepsy.

The sleep did feel very similar to alcohol sleep for me. Strange and unnatural and not particularly restful. For people who it works though it’s supposed to feel like the most restful sleep of their life apparently.

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