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Community AnchorEffexor

Hi Blakely! Congrats for being able to taper multiple drugs. Since you've had experience with it, no doubt you'll be a good source of support for your husband. What drug is he currently tapering? I personally am not knowledgable about sodium oxybate, but from what I read it can cause withdrawal symptoms. I'm sure Based Psychiatrist has more knowledge about it and how best to taper off. I'm sure a Hyperbolic taper would be a wise course of action. Glad you're here! 🙂

Venlafaxine (tapering) - Current dose 17.92 mg
Trazodone - 50 mg
Levothyroxine - 25 mcg

“Your brain and body know how to heal. Trust the process and keep going.”

Please Note: I am not a healthcare professional. Any advice given is based on personal experience and that of others in the lay withdrawal community.

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BasedStaff6mo ago

Community AnchorEffexor

Hi Blakely, welcome to the community! And what a journey you've already been through. Sodium oxybate is a pretty unique medication. Before we get started, are you mainly looking for support around the tapering side, the insurance battle, or both? Your closing words are exactly the spirit of this place. Glad you're here. 😎

Creator of Taper Community, here to help you.

Blakely6mo ago

Welcomer

Thank you Catina and BP! His goal is coming off of 20mg of Valium/Diazepam that he has been on for 20 years. Luckily he has found a doctor recently that is willing to go extremely slowly. I liked the Ashton Manual. Hyperbolic tapers make sense. After that he wants to go off of Adderall. He cut that back from 70 to 30mg about 4 years ago. My biggest concern with Xyrem is I don’t know if I actually need it anymore. And I recall from switching medications in the past that I didn’t know until several months later that I needed to switch back to it. I would slowly become more exhausted and my epworth sleep scale would slowly get worse. Then I would go back on the Xyrem and it would improve after several months of sleep recovery. I wish I could know without having to just try it and cost months of physical decline. My body has been healing ever since the original injury. I can tell it’s better now than even 5 years ago. Just don’t know if it’s ready yet. I don’t think you’re supposed to be able to repair the damage… but I can tell from my sleep patterns that they have become more normal over the last decade, slowly. Edit to add: I’ve had a lot of experience dealing with insurance. I am just getting tired of the battle.

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Catina6mo ago

Community AnchorEffexor

"His goal is coming off of 20mg of Valium/Diazepam that he has been on for 20 years. Luckily he has found a doctor recently that is willing to go extremely slowly. I liked the Ashton Manual. Hyperbolic tapers make sense.

After that he wants to go off of Adderall. He cut that ..."

— @Blakely

These are great goals to have, and I'm glad he is armed with the proper knowledge AND support from his doctor. Both of these make all the difference! What type of "injury" did you have?

Venlafaxine (tapering) - Current dose 17.92 mg
Trazodone - 50 mg
Levothyroxine - 25 mcg

“Your brain and body know how to heal. Trust the process and keep going.”

Please Note: I am not a healthcare professional. Any advice given is based on personal experience and that of others in the lay withdrawal community.

Blakely6mo ago

Welcomer

How do I quote you to reply? My body shut down after having the Gardisil vaccine. Went from completely healthy to autoimmune disaster. I was reactive to everything. Developed Narcolepsy+ Cataplexy. Same story as some of the other girls that were on both the placebo (aluminum adjuvant) and vaccine sides of the vaccine trial. The aluminum adjuvant they used for that vaccine was stronger than other vaccines and had hot lots where the quantity far exceeded the required amount. Unlucky. But, like I said, I’ve noticed my body healing in the over-a-decade since. I have become slowly less reactive to my environment. Less debilitated, etc. Have been working on detoxing. I don’t think the body is supposed to be able to fix narcolepsy… but I also know sometimes it does some miraculous things. Edit to add: been a long time since I researched it, but the difference is they added a sulphate group to the aluminum which made it more acidic and apparently more potent. That’s my vague memory of what happened.

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Catina6mo ago

Community AnchorEffexor

"How do I quote you to reply?" — @Blakely

Take your mouse and highlight the area you want to quote. Click on the window that pops up that says "quote & reply."

"My body shut down after having the Gardisil vaccine. Went from completely healthy to autoimmune disaster. I was reactive to everything. Developed Narcolepsy+ Cataplexy. Same story as some of the other girls that were on both the placebo (aluminum adjuvant) and vaccine sides of..." — @Blakely

Wow, that's terrible! It's crazy how these drugs can set off a health disaster. I'm glad you've been slowly healing. ❤️

Venlafaxine (tapering) - Current dose 17.92 mg
Trazodone - 50 mg
Levothyroxine - 25 mcg

“Your brain and body know how to heal. Trust the process and keep going.”

Please Note: I am not a healthcare professional. Any advice given is based on personal experience and that of others in the lay withdrawal community.

Blakely6mo ago

Welcomer

Thanks! I think I’m almost normal at this point. Cataplexy attacks are super rare now, when they used to be all the time. The only question is, is it just an extremely well managed illness because of the Xyrem or is it actually repair?

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Catina6mo ago

Community AnchorEffexor

"The only question is, is it just an extremely well managed illness because of the Xyrem or is it actually repair?" — @Blakely

If we only knew, right? Maybe Based Psychiatrist will have more input on this. I'm not familiar enough about it. What I do know is that our bodies are designed to heal and are always working to achieve homeostasis again.

Venlafaxine (tapering) - Current dose 17.92 mg
Trazodone - 50 mg
Levothyroxine - 25 mcg

“Your brain and body know how to heal. Trust the process and keep going.”

Please Note: I am not a healthcare professional. Any advice given is based on personal experience and that of others in the lay withdrawal community.

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BasedStaff6mo ago

Community AnchorEffexor

"My body shut down after having the Gardisil vaccine. Went from completely healthy to autoimmune disaster. I was reactive to everything. Developed Narcolepsy+ Cataplexy. Same story as some of the other girls that were on both the placebo (aluminum adjuvant) and vaccine sides of..." — @Blakely

Wow what a story. So sorry this happened to you, but almost all types of recoveries are possible.

"I think I’m almost normal at this point." — @Blakely

Above statement proven 😄

"The only question is, is it just an extremely well managed illness because of the Xyrem or is it actually repair?" — @Blakely

I think that the idea of medications causing repair is flawed to be honest, and ill explain why. I look at it more like patching a hole in a bike tire (very specific reference, maybe just because I like bikes). If i pop my bike tire on a ride, im going to use some pretty creative techniques, aka anything I can, to get the tire inflated again so i can get home. But I wouldnt say that this shitty patch job "saved" my tire or even "managed it". Its just a means to an end. Same with medications, they just patch up a problem. But in this patch, we introduce new chemicals to our brain and we adapt to them. Now if your goal is to taper the med, youre going to be battling with both some withdrawal (albeit im unsure the degree of withdrawal of Xyrem) as well as potentially narcolepsy symptoms. Thats why its very important you go at a slow pace so you can adapt to these new doses, which i see you already know. Overall I think that we should all aim for less chemical intervention, with respect to the outliers. Not sure if that answered the question, happy to go more in detail or to use less biking metaphors

Creator of Taper Community, here to help you.

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BasedStaff6mo ago

Community AnchorEffexor

"What I do know is that our bodies are designed to heal and are always working to achieve homeostasis again." — @Catina

This is literally everything. Every time someone tries to convince you otherwise theyre scamming you

Creator of Taper Community, here to help you.

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Catina6mo ago

Community AnchorEffexor

"I think that the idea of medications causing repair is flawed to be honest" — @Based Psychiatrist

AGREED! Drugs don't "heal" or "cure," they mask and/or manage symptoms.

Venlafaxine (tapering) - Current dose 17.92 mg
Trazodone - 50 mg
Levothyroxine - 25 mcg

“Your brain and body know how to heal. Trust the process and keep going.”

Please Note: I am not a healthcare professional. Any advice given is based on personal experience and that of others in the lay withdrawal community.

Blakely6mo ago

Welcomer

Sorry I’ve been gone. I didn’t actually mean that the medicine did anything to heal the problem. I was wondering if my body had naturally repaired itself independently of the medicine because many of my symptoms used to be stronger closer to the crash event and have become progressively better over time. The Xyrem dose has stayed the same, so it’s not related to the medicine. For example, I used to have frequent cataplexy attacks. If I laughed, I might drop something or even end up on the floor (slow meltdown, it was actually fun, ROFL without the rolling). Now it’s maybe once a year and I have to really be cracking up to even get slight weakness. I’m not nearly as exhausted as I used to be. My “Excessive Daytime Sleepiness” is much better, almost normal at this point. Whereas originally I’d sleep for 22 hours a day and still be exhausted. In the middle years I needed stimulant medication to keep me going during the day so I wouldn’t crash, now I don’t need them, just basic caffeine (under 200mg). I’ve been strongly prioritizing repair vitamins in liposomal form, like liquid glutathione.

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Catina6mo ago

Community AnchorEffexor

"I didn’t actually mean that the medicine did anything to heal the problem. I was wondering if my body had naturally repaired itself independently of the medicine because many of my symptoms used to be stronger closer to the crash event and have become progressively better over..." — @Blakely

Got it! Thanks for clarifying. It sounds like you have a really good pulse on your health. I'm glad things have improved for you!

Venlafaxine (tapering) - Current dose 17.92 mg
Trazodone - 50 mg
Levothyroxine - 25 mcg

“Your brain and body know how to heal. Trust the process and keep going.”

Please Note: I am not a healthcare professional. Any advice given is based on personal experience and that of others in the lay withdrawal community.

Taper Warrior - Hi, I’m Blakely

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