Almost 11 months off / Update

[[Re...]]

 

I'm writing to post an update for anyone who has read my previous posts or messaged me. I appreciate your concern, and thank you for it. I am taking time away from this forum until I have significant good news to report (fingers crossed), so please know that I will reply to messages later. I hope to come back and support others, but I must put my oxygen mask on first.

So here is my update three days shy of 11 months off of benzos. My condition got extremely severe when I left this forum in June. This was due to the Seroquel a psych ward put me on for sleep in benzo withdrawal. Luckily, I found a doctor who knew about akathisia and BIND. This doctor accurately diagnosed me and provided support to my family. They suggested a blind taper off the rest of the Seroquel, and I agreed. Within four days of continuing to taper this Seroquel, I started to experience windows from the akathisia. And by that, I mean 19 days of no pacing with three small spikes and one 12-hour spike that was horrible in between. The day after that horrendous spike, the pacing stopped again, and I just had another 23 days of no pacing, with a current spike happening today. In that 23 days, I had 5 days of sleeping 7-8 hours through the night without waking. I have been nowhere near functional with 20+ other symptoms, however, I am grateful that I had these windows.

I will say this to anyone facing an adverse reaction... If I had listened to online advice telling me to hold the Seroquel and "let my nervous system settle," I might not be alive. This wasn't happening even after holding for six weeks. So food for thought when taking advice online. It can go both ways, as nobody knows what these drugs do or how they do it. It turns out that the drug seemed to be agitating my condition in some way. I had no intuition to listen to having akathisia. Trusting a doctor when the medical system harmed you seems contrary, but I got this referral from other drug-harmed people, and I did not want to be nervous about the taper day in and day out anymore. I am being closely monitored in my home by a caretaker, keeping in close contact with my withdrawal coach, and everyone communicates, including the doctor. I understand I am lucky to have the resources for this, but there are ways to do it with trusted family members or friends if you can put a team together to support a blind taper appropriate to the specifics of your case.

I am still blind tapering, but I may be off of everything. I don't know. I know I am low on the dose somewhere (likely way under 20mg). I have asked not to be told when I am off until weeks later so I do not feel stressed about potential "acute" issues. I am terrified of what comes after this and taking things one moment at a time. I am nowhere near out of the woods by any means, but what I know about this process is that you can be severe one day and then healed the next, so you never know. We must keep hope alive for ourselves and other members going through this nightmare.

I understand how harmful it can be to other members to leave a story untold or not to communicate if you are a severe case. That can be scary to read. So I wanted to let you know where I am at right now. Please send me your best wishes for complete healing.

Much love to all,
Rebecca

 

 

 

[[ty...]]

Happy to hear things are headed in the right direction. I too had akathisia and treated it with propranolol. I tapered off the propranolol, last dose was 8/1…..so far, no return of the akathisia…..I wish you speedy healing. I know aka is true hell. 

[[dj...]]

1 hour ago, [[R...] said:

I'm writing to post an update for anyone who has read my previous posts or messaged me. I appreciate your concern, and thank you for it. I am taking time away from this forum until I have significant good news to report (fingers crossed), so please know that I will reply to messages later. I hope to come back and support others, but I must put my oxygen mask on first.

So here is my update three days shy of 11 months off of benzos. My condition got extremely severe when I left this forum in June. This was due to the Seroquel a psych ward put me on for sleep in benzo withdrawal. Luckily, I found a doctor who knew about akathisia and BIND. This doctor accurately diagnosed me and provided support to my family. They suggested a blind taper off the rest of the Seroquel, and I agreed. Within four days of continuing to taper this Seroquel, I started to experience windows from the akathisia. And by that, I mean 19 days of no pacing with three small spikes and one 12-hour spike that was horrible in between. The day after that horrendous spike, the pacing stopped again, and I just had another 23 days of no pacing, with a current spike happening today. In that 23 days, I had 5 days of sleeping 7-8 hours through the night without waking. I have been nowhere near functional with 20+ other symptoms, however, I am grateful that I had these windows.

I will say this to anyone facing an adverse reaction... If I had listened to online advice telling me to hold the Seroquel and "let my nervous system settle," I might not be alive. This wasn't happening even after holding for six weeks. So food for thought when taking advice online. It can go both ways, as nobody knows what these drugs do or how they do it. It turns out that the drug seemed to be agitating my condition in some way. I had no intuition to listen to having akathisia. Trusting a doctor when the medical system harmed you seems contrary, but I got this referral from other drug-harmed people, and I did not want to be nervous about the taper day in and day out anymore. I am being closely monitored in my home by a caretaker, keeping in close contact with my withdrawal coach, and everyone communicates, including the doctor. I understand I am lucky to have the resources for this, but there are ways to do it with trusted family members or friends if you can put a team together to support a blind taper appropriate to the specifics of your case.

I am still blind tapering, but I may be off of everything. I don't know. I know I am low on the dose somewhere (likely way under 20mg). I have asked not to be told when I am off until weeks later so I do not feel stressed about potential "acute" issues. I am terrified of what comes after this and taking things one moment at a time. I am nowhere near out of the woods by any means, but what I know about this process is that you can be severe one day and then healed the next, so you never know. We must keep hope alive for ourselves and other members going through this nightmare.

I understand how harmful it can be to other members to leave a story untold or not to communicate if you are a severe case. That can be scary to read. So I wanted to let you know where I am at right now. Please send me your best wishes for complete healing.

Much love to all,
Rebecca

Glad you’re doing better.  
 

Not sure who told you to stay on Seroquel if experiencing akathisia.  The antipsychotics are notorious for producing akathisia and that will only get amplified if you’re having problems with benzo withdrawal too.  
 

If you weren’t on Seroquel and getting akathisia just from tapering benzos, then the hold advice would apply based on everything I know and have read.  Getting off benzos puts you at a higher risk for akathisia with other medications.  I got it when trying an antidepressant. 

[[wo...]]

I’m happy to hear this. I think of you often friend. ❤️

[[Re...]]

I found out that I am off the Seroquel. Because I was blind tapered I did not realize that I was off. I am now taking ZERO pharmaceutical drugs or OTC's and plan to stay that way 100 percent for the rest of my life. While I no longer feel trapped every second of every day, I am nowhere near out of the woods. AND focused on healing. When I am closer to being totally healed, I will come back and share my success story.

[[B1...]]

All I have to say Rebecca is I am not very active on the forum but everytime I do come on I come and look to see how you're doing so I am very happy to hear you are off the Seroquel and that the blind taper went well - for a lack of better words. I know you have so much healing ahead of you but I am glad the Aka has dissipated for the most part and you are off all psych meds. I'm sending you all the love and healing in the world. 

[Guest [...]]

Congratulations Rebecca!

I understand you’re only just off the Seroquel, but that’s one major step forward. At least you know it’s all healing from here…

I look forward to reading your success story. 

All the best wishes with your recovery!