There must be someone out there who has been through this and healed??

Almost six months off Ativan. Stupidly I took Quetiapine for sleep, which was recommended by a psych. I hadn't slept in two weeks, tinnitus was terrible at the time from the benzo detox, and I was not thinking clearly enough to refuse.

 

I had no problem tapering down from 125mg to 50mg within the first four months of being on it. Then things got rough due to horrendous nocturnal panic attacks and insomnia due to the taper, so I started compounding doses and going slower. I got down to 34.5mg. It wasn't easy but doable even with bad benzo withdrawal symptoms. Then I tapered slightly down to 34mg at the end of January 2023, and it felt like all hell broke loose. My body felt like it was convulsing, spasms, and twitches, I felt like my skin was plugged into an electric socket for days, and I developed an inner vibration that spread from chest to whole body. I honestly don't know how I survived that. I crawled on the floor, screaming for help in pain for at least four days straight. I am still in disbelief that something like this happened to me.

 

I had to go to the ER where they admitted me to the medical hospital, switched me to liquid, tapered me down to 30mg, and observed me for one week.

The hospital ran every test under the sun on me blood (cortisol, hormones, electrolytes etc etc etc), MRI, EEG, EKG -- I am healthy as a horse. I have to say I am grateful that I went and it did not result in additional harm. Every doctor wants me off of all psych medications due to paradoxical reactions. They want me to continue tapering the Quetiapine 10 percent a month to be off sooner rather than later.

 

Overall, symptoms began to improve when I left the hospital. Strangely with this new round of symptoms that emerged, the head pressure I had felt from the benzos for months left, and some of the jaw pressure subsided. Some other symptoms also improved. I had my first ever three-day window the three days after I left the hospital. Then it was back into a wave again... Although I have been able to force myself to start working out an hour 3-4 times a week with a friend who comes and helps me. I am still in bed most of the time. I went to the dentist and got a manicure which felt like a miracle. I have gained a little weight but not much. (I have been pretty skeletal.)

 

Symptoms are not gone yet, but thankfully, with the dose reduction, I stopped having jerks in the middle of the night and severe heart palpitations. Muscle spasms have greatly improved. After taking the medication, I also stopped feeling like I was falling down a black hole. The inner vibration is the most troubling, but skin burning is horrendous. I have been taking oatmeal baths with coconut oil and many cold showers. I put an ice pack in my pillowcase and hug it to my chest to sleep. I wonder if the Quetiapine is creating these symptoms or making them worse because I notice when I take it at night, the symptoms ramp up into the mid-morning. The inner vibration wakes me up sometimes. I thought tinnitus was terrible...think again... I cannot even believe that I am typing this right now. Is this my life? Will I make it out of this??

 

Now I have TERROR now about continuing to taper. ABSOLUTE TERROR. It feels beyond PTSD. It is this constant fear hanging over my head at all times. Like I cannot think of a good or positive thought about tapering. I cannot fathom maybe I might feel better off the medication, not worse, or that symptoms might be better from here on out. I am just incapable of thinking of anything positive. After a brutal benzo detox, I am so pissed that I am in this position. It feels like turning the volume up on hell to another level and going through something worse than I have already been through. And the crushing depression that comes with it.

 

I wish I didn't know what I know about potential side effects. I speak with the known benzo coaches weekly to discuss safe tapering and get support and encouragement. I've heard and read horror stories online, which certainly doesn't help. It only makes things worse. I have a friend in a 12-Step program who has tapered 44 psych drugs in 10 years and has tapered eight alone in the last 1.5 years, and he has told me to call him daily. He CT'd 6 mg Klonopin at a detox place, reinstated, then slow tapered, so it's not like his CNS is in great shape. He drinks Valerian tea every night for sleep. He doesn't even remember all his symptoms during these tapers, but he wants off all meds and is now tapering an anticonvulsant as his last one. He keeps feeling better and better and has a great attitude about this process. He keeps telling me I am closer to my goal and how great that is.

 

I have not been poly-drugged regarding being on many meds at once. However, I have been concerned about how many medications I have been put on and off over the last 24 years, specifically over the previous 2-5 years. I never had any issues starting or stopping medication until this Ativan detox. I have told my doctors all the facts about the meds I have taken during this time and before it-- the neurologist, neuro-psychopharm, internist, and addiction medicine specialist. The neuro-psych knows about tapering and methods and has been super supportive. However, I don't trust doctors anymore. One doctor told me I might not feel the next tapering difference and reminded me to stay positive.

 

I don't have a choice but to taper off this medication because I cannot stay on it...I would greatly appreciate the information if anyone has any advice, thoughts, or practical tools-- anything helpful or hopeful.

 

Thanks in advance, buddies. I know there must be someone out there who has been through this and more on the path to recovery.

Anyone?

I don't have much to say since I am right in the thick of it, but your 3 day window is hugely encouraging. I'm pretty sure it means healing is happening. I think the benzo coaching is great as well as all of the other help you are seeking out. You will get through this. Hoping you get another nice window soon.

🙏

Check out Jennifer Leigh blog. She's been through this and has healed. She offers help and lots of encouragement. I have been at this for 6 years now after heading down all kinds of rabbit holes while I remained ignorantly taking all kinds of meds to counteract the side effects of other meds. Doesn't mean it will take you years. Not at all. Gotta have faith and belief in yourself. You can get through this. We are healers but we need incredible patience. Good luck.

Was she on other meds as well? I thought she only CT’d Klonopin. I've spoken with her a few times.

 

Was she on other meds as well? I thought she only CT’d Klonopin. I've spoken with her a few times.

 

I'm sorry. I'm not sure of that.

Hello Rebecca,

how do you get 1 to 2 months?

Best regards