20 mths off Ativan / 10+ mths off Quetiapine (Seroquel)

[[Re...]]

 

I receive kind messages asking how I am doing, so I wanted to share an update here for anyone who asked and for anyone who might benefit from my experience. I will start with the "positive" and that is I sleep every night. I wake up here and there and rarely sleep through the night 8 hours straight, but I sleep at least 5-6 hours without waking now and then when I do wake up, it's only for a few minutes and I fall back asleep typically sleeping 8-10 hours most days. I didn't sleep for 14 months so I am extremely grateful to not be tortured with no sleep. I can do some work part-time now from home although I am in bed doing it much of the time still shuffling around in my pajamas all day long and rarely leave the house. I did have some friends over recently but I stay away from people since I am still so symptomatic and avoid being exposed to germs. I cannot drive yet but I can and have done ride-sharing here and there. It is not easy going out but I do it sometimes. Knock on wood, I have not paced in six months so hopefully, fingers triple crossed, that part of this experience is over. I rarely feel intense increased internal akathisia at this point so I am hoping that goes completely soon.

While I do not discount that healing has happened and that I am nowhere near as severe as I was at this time last year, I am still suffering so and it is frustrating. Including the interdose withdrawal, I have been suffering for around 26 months or so. I have lost count. When I do a final post here one day I will calculate exact numbers. But this has been a long journey for me, I understand some have been struggling for longer, but I guess we just keep going until the moment when things click and start to dissipate. There are big debates in groups on whether everyone heals or not -- the fact is that healing IS POSSIBLE. Even after years. I have read the stories and talked with the buddies who have had that experience. The idea of fully healing feels like a distant dream to me sometimes, and I'm cautiously optimistic. I've come to realize that life and health don't come with guarantees. Life's unpredictability is just part of the human experience. It's not intended to frighten anyone; it's simply a reality we all must face—a fact we all have to navigate—a common thread that unites us.

 

My worst symptoms are ear ringing, sound sensitivity, skin burning, and inner vibration. They seem to increase after eating which is perplexing. My body feels like it is made of electricity, not flesh and it is insane that this can even happen to a person. I will say the skin burning has decreased and the inner vibration is nowhere near where it was before when I could feel it through my palms and the bottoms of my feet like someone was shaking me. I have picked up a new symptom of recurring geographic tongue and red tongue/tongue pain that started out of the blue in the last couple of months all of a sudden. I have tried to cut out a bunch of foods and eat low histamine but it does not seem to help. I am getting really bad headaches now (different than the head pressure from before) and I now require reading glasses that I did not need before this. I do not think it is a coincidence. I still have a frozen shoulder (7 months now), ear popping, TMJ pain, terrible body odor, extreme fatigue, eye floaters, ear pain, muscle spasms (face, hands), etc etc etc-- it is almost as if all of my symptoms are from the sternum up literally right in my face. It sucks! Every day I do not want to go on, but I do. When you have as many symptoms as I do (80 in total since the beginning), you start negotiating in your mind. "If I could just get rid of the tinnitus and inner vibration, I feel like I could manage everything else." Honestly, I'd be thrilled if just one of these symptoms eased up!

I am doing my part: avoiding chemicals, vitamins, supplements, and prescriptions and I am not doing any treatments that could act on my nervous system -- even things you would think are benign like a red light sauna. I tried all of those things then cut them out once I got off of everything. I do not drink caffeine, or alcohol or take any substances recreationally. I tried many things to beat withdrawal and nothing worked, it only made me worse so for me, this is what I choose. I know some people try to biohack drug damage, that is their choice. They continue to doctor shop and leak money on unnecessary tests, try naturopathic remedies, etc. I have found the people who have the fewest complexities in the healing process are those who choose not to take so much as chamomile tea. Everyone is so different and risk/benefit tolerance is as well so you have to do what makes you comfortable. Living like a monk isn't fun, but I am willing to do it to regain my health!

I am hoping that by the 16-18 month mark, I will start to turn a corner. The average time in this being off all drugs I have found is 12-18 months, maybe 24 on the outer limit. Obviously one can experience this longer that is just the "average" I am aware of. Although I am 20 months off of benzos, I am only 10 and some change off of Seroquel, and supposedly you count from the last drug you came off of.

For anyone toying with the idea of taking antipsychotics, just so you know, antipsychotic-induced akathisia rates are extremely high -- up to 35-45 percent. You can look that up online in peer-reviewed studies. As someone harmed by an antipsychotic in benzo withdrawal, I know firsthand how dangerous these drugs can be and how little doctors know about akathisia or prescribing other chemical substances in benzo withdrawal.

While I am not in a place to declare myself a success story, I do acknowledge that I found my way off of these drugs. So if you are off and keeping your life clean and giving yourself a chance to heal being so clean, that is a huge accomplishment in and of itself. If you are still tapering, you can and will make it. Just keep going!

I do feel grief over lost time. A friend of mine has achieved milestones in life --  earning a master's degree, getting married, and having a child  -- all during the time I've been in withdrawal. I can only hope that the future brings greater prosperity for us all and that the adage "what goes down must come up" rings true in my life, bringing gains after enduring such deep losses emotionally, spiritually, physically, socially, and financially.

Although I'm still facing physical struggles, I'm glad to be out of the medical and mental health systems. Honestly, good riddance! I was misdiagnosed and didn't need to be there in the first place. Don't let anyone convince you otherwise if you know the truth about who you are and what is happening to you in withdrawal from these drugs. Keep advocating for yourself and fighting for your truth in the maze of gaslighting and misinformation on prescribing and deprescribing. Do not give up!!

One day I hope that we will all cross this finish line. Until then, buddies, all we can do is survive one moment at a time.

 

Edited May 18 by [Re...]

[[jo...]]

It sounds like you have had a really hard time but are making significant improvements, and have a very good understanding of your body and minds current situation. Keep going!

[[Li...]]

Thank you for another information- and insight-packed update @[Re...].   By carefully documenting and sharing your experience you are contributing to our knowledge base about psychotropic medication-related injury and protracted withdrawal syndrome. 

Although it may not always seem like it to you, it’s clear from your posts that you have made significant progress since you first joined BenzoBuddies.  It’s also clear you are doing whatever it takes to support continued progress toward recovery. Congratulations and well done!

[[...]]

I was missing your posts. Thanks for this update. Wishing you continued progress @[Re...]

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5 hours ago, [[L...] said:

Thank you for another information- and insight-packed update @[Re...].   By carefully documenting and sharing your experience you are contributing to our knowledge base about psychotropic medication-related injury and protracted withdrawal syndrome. 

Although it may not always seem like it to you, it’s clear from your posts that you have made significant progress since you first joined BenzoBuddies.  It’s also clear you are doing whatever it takes to support continued progress toward recovery. Congratulations and well done!

Thank you @[Li...]. I value the wealth of knowledge and support you share on this platform. I don't plan on maintaining my membership indefinitely. So I want to share specific insights from my personal journey to hopefully benefit future members.

[[Re...]]

6 hours ago, [[j...] said:

It sounds like you have had a really hard time but are making significant improvements, and have a very good understanding of your body and minds current situation. Keep going!

Thank you @[jo...]. I appreciate the kind message. It's been really tough for me, no doubt. I truly hope, as we all do, for the clouds to break one day and to see the sun again.

[[Re...]]

[[...]]

Rebecca,

Stay clean, eat clean and your brain will heal, I only had maybe two 20 minutes (pass out) naps a day for 3 1/2 years.  I understand, I paced 24/7 for over 5 years. It was severe Akathisia with terror filled anxiety. All buddies on here told to not take another drug and I listened.  And others on here took other meds to fix their Akathisia and they got worse, if it’s possible.  So I refused every drug they tried to give me.  They blamed all my side effects on my “condition” of which I had no condition. It was all from the drugs and I knew it. I was totally disabled.  I will say a prayer for you and suggest you pray. I am totally healed and loving life.  It will happen for you,too I know it!  BELIEVE

 

[[Co...]]

Hello @[...]. Welcome to BenzoBuddies.

[[...]]

Rebecca,

After going back and reading your full story , it really hit my heart. 
I thought it was me writing it, I had all that you have.  You are not alone. 
Very few buddies get all the side effects you have.  I know because 13 years ago this forum saved my life.  Just knowing that I wasn’t alone was a relief( if there is such a thing in that state of mind). 
I only had about 2 or 3 buddies on this forum as bad as I was.  And I was on here for years.  The good news is the amount of improvement that you have shown is amazing.  I know you are one tough woman because I know how deep you have reach inside of yourself to survive this. YOU WILL HEAL!!!!
My best bud on here and myself both survived. He is fine tooo.

I hope you have support, it’s a big help.  Another friend you trust that is going through this or a family member that believes your not crazy. 
My whole family thought I was nuts, not a good feeling when you have no control over it. 
Distract,distract,distract daily.   Just like you stated you just try to survive one day to the next.  That’s the key SURVIVE!!  Don’t let the Doctors win. 
I don’t know if 29 is your age but if it is you have so much of life ahead you.  
They poisoned me at an older age but I did heal just the same.

God Bless You

YOU WILL HEAL

 

[[...]]

The more I read your posts the more I know you have figured it all out.

Someone was either your angel and advised you properly, or from trial and error you realized that anything made you worse. For me it was a combination of both. Proud of you!

I would have told you what you are currently doing is the ticket.

Take nothing!

You got this, just “survive” everyday. Most days I prayed for darkness, I knew another day was gone. Loved the short days in winter, weird thing.

God Bless

 

 

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Edited May 19 by [Re...]

[[...]]

Rebecca,

You are living my story!  The memories of that horrific experience do get easier to reflect back on as time goes on. Unfortunately, after suffering so long, not coming on here anymore was a choice I had to make.  Most of my close friends on here had moved on. 
Recently a close friend came to me to help them withdrawal, that is why I logged on. 
I saw your Akathisia story and it touched me. I know how strong you are and you will make it. This experience has changed my life, I know I am a better person having survived. The empathy I have for others going through this is immeasurable. 
I wish I could tell you some magical solution but as you know there is none. 
SURVIVE

Faith in a good outcome was all I had, along with my faith in God. The will to live can be a powerful tool. I had no success stories of Akathisia to fall back on, but fortunately you have found others that survived. 

I prayed as often as I could even while pacing.

What caught my attention was your 80 side effects. That was the number I used all time when I counted up everything I was suffering from. 
 

God Bless