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Never thought things could get so bad after getting off benzo


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I am shocked and dismayed at my recovery process and numb to life from it. I never thought things could get this bad after quitting benzos. I never thought I would become an extreme case on Benzo Buddies. But here I am—an extreme case. I am writing to all of you today to let you know what is happening. I have no idea what to expect next.

 

If I hadn't taken Seroquel (Quetiapine) for sleep under the direction of a top-five hospital, I would be well on my way to healing the benzo injury and living my life again. But now I have to endure an agonizing taper with more physical pain and insomnia.

 

I was desperate because I hadn't slept in two weeks due to a rapid benzo detox. So I went to the hospital, where they suggested taking Seroquel to "calm my nervous system" and get some rest. I was not in my right mind to agree to take this medication. It has ruined my recovery, and getting off is way worse than benzos.

 

I have slowly tapered for six months and developed withdrawal akathisia from it. The aka got worse this week with a modest cut. That cut brought eye pain, twitching, and excessive eye blinking this week. I already had electricity feeling through my body at times (thankfully, this seems to be going away somehow now; I only have a tingling back which seems tolerable), muscle spasms that seem convulsive, jerks, shakes, twitches, inner vibration 24/7. I had none of this in benzo withdrawal. This makes the head pressure, jaw pain, and tinnitus, along with all the other benzo symptoms, seem easy.

 

BTW the tinnitus has decreased by 95 percent by some miracle. I barely hear it anymore, and it is not because I am habituated. That was the reason I didn't sleep for two weeks in the first place. I wish I had known it would go away; maybe I would not have been so desperate to take an antipsychotic off-label. I mean, really, how stupid of me. I had no idea it was an antipsychotic. I am told by docs that "withdrawal symptoms when stopping Quetiapine are uncommon..."

 

I wish I had known that other medications during withdrawal only complicate matters and can worsen them. And that hospitals are not safe places for people in benzo withdrawal. Because there is no data on withdrawal, and doctors don't understand the phenomenon. They do not know how to deprescribe any drug considered "psychiatric," even if it is being used off-label for sleep for someone who is not a psych patient. There are no deprescribing guidelines; they only make guesses and then turn around and diagnose us with incorrect labels. I am sad to say that I no longer trust doctors.

 

I have internal terror and, at this moment, a strange acceptance that this could be it for my life. I have prayed and prayed and prayed and God has left me here in this position. I used to be an active person who meditated and connected with God, did good for others, and enjoyed life. I always had a positive attitude, but that attitude has faded. This process could take everything from me.

 

I know some people have had surprise turnarounds on these sites. It could happen to me, but in this withdrawal game, I have learned there is no rhyme or reason, and those that come out on the other side unscathed or healed are very lucky. I envy those who have had an easier go of this.

 

I am lucky that my family believes me. I am lucky that I have a couple of friends who have stuck by me. Thankfully my doctors know I am not mentally ill. But, unfortunately, unless you have been through the hell of this, you simply do not understand what is like and what is really going on.

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I know reading a strangers words on a forum might not feel like much right now, but know that in this moment, as you are reading this, I am here for you. God is there for you.

 

I'm going through the hard times right now myself Rebecca. I often think the same thoughts, that this is it for my life. I was alone in my bedroom last night, feeling like I was knocking on Heaven's door, unable to sleep and terrorized by horrible thoughts. It's been like this for a long time now.

 

God will never leave you. He has not abandoned you. You are destined for things far greater than you could ever imagine. It is so difficult for us to see it or understand from our limited human perspective while we are on this planet.

 

I know in the deepest part of my soul the hell that this is.

 

Keep fighting the good fight, finish the race, keep the faith.

 

The wound is the place where light enters you.

 

This might sound a bit crazy to you right now. It even sounds crazy to me, but: God is letting you suffer because he loves you.

 

"For the Lord disciplines the one he loves, and chastises every son whom he receives.” (Hebrews 12:5–6)

 

When nobody else will listen, God will listen. I will listen. You are not alone in this battle, no matter how alone you may feel.

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I know reading a strangers words on a forum might not feel like much right now, but know that in this moment, as you are reading this, I am here for you. God is there for you.

 

I'm going through the hard times right now myself Rebecca. I often think the same thoughts, that this is it for my life. I was alone in my bedroom last night all alone, feeling like I was knocking on Heaven's door, unable to sleep and terrorized by horrible thoughts. It's been like this for a long time now.

 

God will never leave you. He has not abandoned you. You are destined for things far greater than you could ever imagine. It is so difficult for us to see it or understand from our limited human perspective while we are on this planet.

 

I know in the deepest part of my soul the hell that this is.

 

Keep fighting the good fight, finish the race, keep the faith.

 

The wound is the place where light enters you.

 

This might sound a bit crazy to you right now. It even sounds crazy to me, but: God is letting you suffer because he loves you.

 

"For the Lord disciplines the one he loves, and chastises every son whom he receives.” (Hebrews 12:5–6)

 

When nobody else will listen, God will listen. I will listen. You are not alone in this battle, no matter how alone you may feel.

 

I cried reading your words. You are a kind soul.

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For some strange reason, medical providers think it's a grand idea to prescribe anti-psychotics to people suffering from benzo withdrawal. My former telehealth Peer called them "comfort meds." My psych NP saw my previous psych practice gave me Zyprexa. She immediately had me stop it. Fortunately, I hadn't been on it too long. Get off one med with physical dependency and horrible withdrawal, to only find out you have another.

 

This tests your faith. It sure has mine. I have had many conversations with God asking why this is happening, not just to me, but to anybody. There is an active #prescribedharm community on Twitter, and it is disturbing to read what has happened to so many people in the name of Psychiatry. There is a psychologist, Dr. Roger McFillin, who is quite critical of psychiatry and mental health treatment. He doesn't mince words, and he's not afraid to confront the psychiatrists who take umbrage at his tweets.

 

God seems so distant, and silent. I'm trying to trust He has a plan for all this happening to me. It may mean using my voice to bring about change. Telling my story and making sure the lawmakers, regulating agencies, and medical organizations are listening. So what happened to me doesn't keep repeating itself. Litigation is an option I am looking into. Whatever it takes.

 

Because God isn't speaking, I am left to figure out what He would do, and what He would like me to do. And using the brain He gifted me with to carry out what I believe He would want me to do. I pray I am right, I ask others what they think. They haven't experienced what I have, it's hard for them to understand.

 

How do we survive this? I have been clinging to the fact it will end. I just wish I knew when. I'm sorry this has happened to you. God isn't finished with us yet. He has a purpose for all this. Some day we will understand. And we will be stronger for it.

 

 

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I have wondered the same thing often.

 

Why is God silent? I am suffering so immensely and crying and screaming inside. I can barely convey my feelings even to others.

 

But then I remember that God's ways are not our ways. His thoughts are not our thoughts.

 

“For My thoughts are not your thoughts,

Nor are your ways My ways,” says the Lord.

“For as the heavens are higher than the earth,

So are My ways higher than your ways,

And My thoughts than your thoughts."

 

Isaiah 55:8-9

 

God is something greater than we could ever imagine.

 

God is speaking whenever you hear a beautiful piece of music, or feel the warm sun on your skin, or hear the sound of a babies laughter. For in all of these things is love, and God is love.

 

We ask: How do we survive this? Through God. Though outwardly we are wasting away, the spirit inside of us is being renewed everyday. Worry about nothing, pray for everything.

 

I don't know exactly how things will work out, but they will. So fight the good fight. Finish the race. Keep the faith.

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I personally don't know the pain you feel at this point. I can completely empathize with everything you are saying here though. It is difficult to not question your faith when you are going through excruciating suffering. Especially when that suffering is caused by a healthcare system that fails us each time. They give you these medications with no real understanding of how they affect a person (or they do know, yet give them out anyway). Then they write you off with other symptoms and give you more mind-altering pills which cause more pain. As a person of faith, I find it difficult to understand how anyone could do this to a person in good conscious without warning the patient of the risks associated with their prescription.... Especially a doctor who likely had to swear to do no harm while they said the Hippocratic oath. 

 

You have been one of the brightest and most positive members to respond to my posts, to give me hope, and to help me pass along to my wife the hope you gave me.... and I use your advice to this day. I tell her as often as she lets me that she will be ok, that she is weening off this poison, that we all love her, and that I love her very much.

 

So now it is time for me to offer you some positivity and some hope. I don't know you, but I can tell you have an inner light.  Keep your mind focused on that inner light. When you struggle and are going through this agonizing pain, remember that it is your god given duty to share your light with those like myself who need it. I don't know what your taper plan is off of this new medication, but check to see if it is too fast and if it is, try to slow it down a bit.

 

It is hard to think that our creator is doing this to you. Many people interpret their faith differently, even in many denominations. I do believe in God, I believe in the good news, and I do believe in evil. I don't think this suffering that you are going through is made by god. God Made us in his likeness and unfortunately, there are many who took their god given talents and do things like Steal, Murder, and Create poisons like these benzos that incapacitate their fellow man. I don't think they do this in the name of God and I don't think it was God's intention for this to be on his earth. I think they do these things as they lose their faith and as they listen to the evil.

 

I am sure it pains God to see all of you and my wife going through this right now. What you need to do is continue to see the light, pray, and as you heal and improve, help others. Warn them of what happened to you and to my wife, and to others here and try to stop this cycle. Find those who plan on a rapid taper, or a cold turkey and warn them in a manner that convinces them to address their withdrawal in a safer way. This is personally my goal, but with the radiance and positivity you carry, even through tough times.... I think you have a god given gift to do this even better than I can.

 

 

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I personally don't know the pain you feel at this point. I can completely empathize with everything you are saying here though. It is difficult to not question your faith when you are going through excruciating suffering. Especially when that suffering is caused by a healthcare system that fails us each time. They give you these medications with no real understanding of how they affect a person (or they do know, yet give them out anyway). Then they write you off with other symptoms and give you more mind-altering pills which cause more pain. As a person of faith, I find it difficult to understand how anyone could do this to a person in good conscious without warning the patient of the risks associated with their prescription.... Especially a doctor who likely had to swear to do no harm while they said the Hippocratic oath. 

 

You have been one of the brightest and most positive members to respond to my posts, to give me hope, and to help me pass along to my wife the hope you gave me.... and I use your advice to this day. I tell her as often as she lets me that she will be ok, that she is weening off this poison, that we all love her, and that I love her very much.

 

So now it is time for me to offer you some positivity and some hope. I don't know you, but I can tell you have an inner light.  Keep your mind focused on that inner light. When you struggle and are going through this agonizing pain, remember that it is your god given duty to share your light with those like myself who need it. I don't know what your taper plan is off of this new medication, but check to see if it is too fast and if it is, try to slow it down a bit.

 

It is hard to think that our creator is doing this to you. Many people interpret their faith differently, even in many denominations. I do believe in God, I believe in the good news, and I do believe in evil. I don't think this suffering that you are going through is made by god. God Made us in his likeness and unfortunately, there are many who took their god given talents and do things like Steal, Murder, and Create poisons like these benzos that incapacitate their fellow man. I don't think they do this in the name of God and I don't think it was God's intention for this to be on his earth. I think they do these things as they lose their faith and as they listen to the evil.

 

I am sure it pains God to see all of you and my wife going through this right now. What you need to do is continue to see the light, pray, and as you heal and improve, help others. Warn them of what happened to you and to my wife, and to others here and try to stop this cycle. Find those who plan on a rapid taper, or a cold turkey and warn them in a manner that convinces them to address their withdrawal in a safer way. This is personally my goal, but with the radiance and positivity you carry, even through tough times.... I think you have a god given gift to do this even better than I can.

 

I cried reading this. I really have no words. Your family is very lucky to have you.

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[quote author=Rebecca29 link=topic=276751.msg3447971#msg3447971 date=1679113422

I cried reading this. I really have no words. Your family is very lucky to have you.

 

God used you to touch somebody else. You gave them hope and encouragement, despite your own suffering.

 

I give and give and give on this forum, but don't think I'm getting anything for myself. But then someone points out how I helped them. And that lifts my spirits some. Take comfort in knowing you make a difference to somebody else.  :smitten:

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