This is what nine months looks like

[[Re...]]

Well...nine months and a little change off of 1.5 mg Ativan taken as directed for two years by a physician I wish I could name publicly. We should all name these doctors publicly. They deserve to be recognized.

 

Hanging out in layperson withdrawal forums in the last months, I have repeatedly heard the same stories of irresponsible prescribing and cessation by doctors, poly drugging, and significant neurotoxic injury as a result. Over and over again, every patient was not given consent or informed consent before the damage. Every patient would have said no to the drug if they had known the possible consequences of taking it -- like losing their job, home, spouse, custody of children, on top of losing their autonomy or health for months or years. Frankly, who would have thunk it? You can lose your home from taking "medication" as directed by a doctor? You can have no history of severe mental illness and be locked up and force-drugged? Oh, yeah! That is just the beginning.

 

Our community should collectively put their foot down so that consent becomes a legal requirement worldwide. I only hope my voice in this forum saves someone else in the future from losing as much as I have lost.

 

Currently, here is what I am experiencing daily, 24/7, without real, meaningful, long-lasting windows:

 

Severe akathisia, pacing up to 12 hours a day

Bilateral tinnitus

Hyperacusis

Internal tremors

Electrical sensations all over the body

Paresthesias all over the body

Muscle pain, numbness, rigidity, and stiffness

Muscle spasms and twitches

Metallic taste in mouth

Extreme food and chemical sensitivities

 

The worst decision I made, other than taking a benzo, to begin with, was taking Seroquel for sleep during benzo withdrawal. Tapering that has created more symptoms than I had initially due to the benzo, and it has increased others to the point that I am completely debilitated and suffering intolerable uncontrollable pain 24/7. And I have been stuck on a dose of a medication that causes akathisia with severe akathisia. Do you want to know what that is like? Having a gun to your head and being locked in a cage too small for you that you are trapped in. Yes, this is my daily life now.

 

Thankfully, I am competent and well-spoken; I can still read and write. I am articulate in expressing what and how I feel. I realized that being competent led some providers to minimize, misdiagnose, or gaslight me. I have been told my symptoms are psychosomatic and that I need therapy. When I had an acute dystonic episode tapering Seroquel and ended up in two emergency rooms, I was told my symptoms were "psychogenic" and sent home. They said it must be "anxiety," not the fact that I was tapering a neuroleptic agent that could cause that. The psychiatrist then told me I had symptoms tapering because I unconsciously decided I was going to. He also told me my eye twitches resulted from a functional neurological disorder. It's interesting; before improper benzo cessation, I never had mania, FND, borderline personality disorder, or any other serious psychiatric illness or recreational drug addiction. I guess they pop up out of the blue, and then doctors put them on your medical records!! I am being sarcastic, obviously. They can all take a long walk off a short pier these doctors.  I fired the ones who were a**holes. And I have armed myself with advocates around me -- some I have paid for -- to avoid further harm. And if I make it out of this mess, I will change those medical records.

 

I have not stopped advocating for myself, even in the worst of circumstances, and I have been through hell and back multiple times. 10 ER visits, a six-day psych ward 5150, and seven days in a medical hospital. Hundreds of thousands of dollars in medical expenses. I read these words, and they don't feel real. Yes, I have DP/DR from the trauma of this experience.

 

I have fought my way to the correct diagnosis FINALLY by a compassionate psychiatrist who understands iatrogenic injury, I have educated my family and friends who believe me, and I have attorneys validating my experience and protecting me with paperwork.

 

I went from being a successful, take matters into their own hands business person with a highly stressful job that I loved and an adventurous life to being cared for by multiple caregivers and my elderly mother. I cannot live alone, work or earn money, socialize, drive, watch TV, listen to music, go to dinner or a concert, read a book, nap, meditate, or do anything functional or enjoyable. I am forcing myself to eat, and I am still underweight. I used to fly across the country to get my hair done, and now I wash it maybe once a week. I do not change out of pajamas and a "good day" is one where I am not rocking, writhing, squirming or pacing while convulsing on the floor crying.

 

This is just some of what I have experienced. I was a woman people admired, and now I am a cautionary tale for all those around me.

So yeah, at nine months, I thought I would be back out in the world. Instead, I am fighting to survive and live again. I guess the good news is I have beat anxiety. I am completely desensitized from what is happening to me at this point. So I guess the benzos did work wonders. (More sarcasm and a huge middle finger to the original provider on this one.) At this point, I wish I had that anxiety back that I thought was intolerable. That, my friends, was childs play.

[[Bo...]]

Can so relate to so much of this…..I’m so sorry for your journey. I’m so proud of you for fighting to make it through this, educating others along the way and not giving in to what labels have been thrown at you so carelessly and recklessly.

 

May the next 9 months bring more better/manageable days than hellish and hopeful you start to get back what has been taken from you, the ability to do what you listed. Most of all hopeful for your full healing and getting love for life back.

 

Keep giving yourself some grace and oats on the back even though it’s hard to give ourselves credit for something we should have never have had to fight thru.

 

I’be had to gather all my Dr and hospital notes for disability case and oh my word I flipped out. On my 3 psychiatrists it mentions informed patient of risks and benefits, side effects etc of all medications. I not one time was given info. I specifically asked could I get addicted (not knowing physical dependence existed), didn’t want my personality to change etc. ‘Oh no, you won’t have any issues with that, yiu don’t have an addictive personality’. That was the extent of any discussion.  No informed consent at all but heck if it doesn’t list it as discussed at bottom of every visit for every Dr. I think it comes down to patient having to initial an actual form bc it can say anything on the Dr notes and also half of what was typed was incorrect. I was appalled at how many of even all the medical Dr notes were incorrect info. I am frustrated I didn’t even know to ask for the detailed notes after appts, I just left with a short one sentence summary, vitals shown and medicine listed. So it’s been frustrating to see how if someone goes off of records in the system that are half incorrect, it’s not good at all. And not good to say you’re doing informed consent when that’s not happening. It should never be a tick box type thought, it’s an important conversation that needs to be had for every medicine given. Anywho, sorry for the rant, but this has been something I’ve become quite passionate about!

 

And heck I can’t wait for the day to get my hair highlighted again !! We will get there! Keep doing what you’re doing and fighting for yourself and to get your life back.

 

 

[[Re...]]

Thanks for the reply. I guess we will see how far I can get. I am losing steam fast and looking at other care options.

[[Pa...]]

Rebecca,

I understand your frustration. I have dealt with this for over three years now. I was doing fairly ok until recently I contracted covid and that threw my life in a loop. I did help me realize how far I have come tho. I was lucky because for the most part I was still able to work. In acute I did have an understanding boss and was able to take a month off without losing my job. Unfortunately I lost my marriage due to this. We still live together but that is so we don’t disrupt my daughters last year in high school. But after that my divorce will be final. My wife has not gor one day been understanding because she believed every Dr that said he can’t be withdrawing, the medicine is out of his system, it must be anxiety. I have been gaslighted by so many Dr’s it’s unreal. On days where I was struggling severely was made even worse by arguing with my wife. I was put on the poison because I had an anxiety attack out of the blue one day. I was going through a difficult time but didn’t think I needed medicine. I was on meds for 4 months only. For a very long time I was so angry at my Dr for doing this to me. I wanted to hire an attorney, and make him pay. And then all the other Drs along the way that said it’s in my head and I need to take this and take that. Which I didn’t touch any of what they wanted to give me. All that did was make me more angry. I was angry for years. But I’m not angry anymore. I don’t blame the Drs anymore. I realized that yes they prescribe this and take you off this. But it’s a lack of education from the manufactures and schooling that needs to be held accountable. One thing I learned This is a Dr that get C’s in med school is still called a Dr. Bottom line is you will heal when you body is ready to heal. It’s unfortunate when we have to go through, what we lose and what we have to rebuild. I’m not very religious but a friend say to me. “God won’t give you any more than you can handle”.

[[Ma...]]

I am in the same boat

 

I have all your symptoms plus

Loss of feeling in body ( I can’t feel full, hunger, you could feed me 20 plates of food and I wouldn’t feel it in my body)

And severe Dystonia.

So severe my posture is completely deformed

 

 

So you have muscle spasms or Dystonia?

[[...]]

nine months looks different for everybody

[[ne...]]

Dear Rebecca, I please know that you are still that valuable and admirable person underneath this all. I find it amazing the way you advocated for yourself and the helpful support you provide to many members here. To be honest I don't feel capable of doing what you did.

 

Yesterday, I saw an interview on Witt-Doerring's channel with somebody who had a very similar experience to your own, and finally did turn a corner around 18 months. Maybe you will find some solace in it.

 

 

Sending you love and strength!

 

[[...]]

Well...nine months and a little change off of 1.5 mg Ativan taken as directed for two years by a physician I wish I could name publicly. We should all name these doctors publicly. They deserve to be recognized.

 

Hanging out in layperson withdrawal forums in the last months, I have repeatedly heard the same stories of irresponsible prescribing and cessation by doctors, poly drugging, and significant neurotoxic injury as a result. Over and over again, every patient was not given consent or informed consent before the damage. Every patient would have said no to the drug if they had known the possible consequences of taking it -- like losing their job, home, spouse, custody of children, on top of losing their autonomy or health for months or years. Frankly, who would have thunk it? You can lose your home from taking "medication" as directed by a doctor? You can have no history of severe mental illness and be locked up and force-drugged? Oh, yeah! That is just the beginning.

 

Our community should collectively put their foot down so that consent becomes a legal requirement worldwide. I only hope my voice in this forum saves someone else in the future from losing as much as I have lost.

 

Currently, here is what I am experiencing daily, 24/7, without real, meaningful, long-lasting windows:

 

Severe akathisia, pacing up to 12 hours a day

Bilateral tinnitus

Hyperacusis

Internal tremors

Electrical sensations all over the body

Paresthesias all over the body

Muscle pain, numbness, rigidity, and stiffness

Muscle spasms and twitches

Metallic taste in mouth

Extreme food and chemical sensitivities

 

The worst decision I made, other than taking a benzo, to begin with, was taking Seroquel for sleep during benzo withdrawal. Tapering that has created more symptoms than I had initially due to the benzo, and it has increased others to the point that I am completely debilitated and suffering intolerable uncontrollable pain 24/7. And I have been stuck on a dose of a medication that causes akathisia with severe akathisia. Do you want to know what that is like? Having a gun to your head and being locked in a cage too small for you that you are trapped in. Yes, this is my daily life now.

 

Thankfully, I am competent and well-spoken; I can still read and write. I am articulate in expressing what and how I feel. I realized that being competent led some providers to minimize, misdiagnose, or gaslight me. I have been told my symptoms are psychosomatic and that I need therapy. When I had an acute dystonic episode tapering Seroquel and ended up in two emergency rooms, I was told my symptoms were "psychogenic" and sent home. They said it must be "anxiety," not the fact that I was tapering a neuroleptic agent that could cause that. The psychiatrist then told me I had symptoms tapering because I unconsciously decided I was going to. He also told me my eye twitches resulted from a functional neurological disorder. It's interesting; before improper benzo cessation, I never had mania, FND, borderline personality disorder, or any other serious psychiatric illness or recreational drug addiction. I guess they pop up out of the blue, and then doctors put them on your medical records!! I am being sarcastic, obviously. They can all take a long walk off a short pier these doctors.  I fired the ones who were a**holes. And I have armed myself with advocates around me -- some I have paid for -- to avoid further harm. And if I make it out of this mess, I will change those medical records.

 

I have not stopped advocating for myself, even in the worst of circumstances, and I have been through hell and back multiple times. 10 ER visits, a six-day psych ward 5150, and seven days in a medical hospital. Hundreds of thousands of dollars in medical expenses. I read these words, and they don't feel real. Yes, I have DP/DR from the trauma of this experience.

 

I have fought my way to the correct diagnosis FINALLY by a compassionate psychiatrist who understands iatrogenic injury, I have educated my family and friends who believe me, and I have attorneys validating my experience and protecting me with paperwork.

 

I went from being a successful, take matters into their own hands business person with a highly stressful job that I loved and an adventurous life to being cared for by multiple caregivers and my elderly mother. I cannot live alone, work or earn money, socialize, drive, watch TV, listen to music, go to dinner or a concert, read a book, nap, meditate, or do anything functional or enjoyable. I am forcing myself to eat, and I am still underweight. I used to fly across the country to get my hair done, and now I wash it maybe once a week. I do not change out of pajamas and a "good day" is one where I am not rocking, writhing, squirming or pacing while convulsing on the floor crying.

 

This is just some of what I have experienced. I was a woman people admired, and now I am a cautionary tale for all those around me.

So yeah, at nine months, I thought I would be back out in the world. Instead, I am fighting to survive and live again. I guess the good news is I have beat anxiety. I am completely desensitized from what is happening to me at this point. So I guess the benzos did work wonders. (More sarcasm and a huge middle finger to the original provider on this one.) At this point, I wish I had that anxiety back that I thought was intolerable. That, my friends, was childs play.

 

Hello Rebecca,

 

Honestly, I don't understand how there is so much ignorance in the medical community. Nor how is it possible that they prescribe benzos beyond a year to children and adolescents, instead of sending them to the therapies that are necessary.

 

I also do not understand, that after the hundreds and thousands of testimonies, they continue to say that everything is mental, that it is something psychosomatic or that it is due to an infrequent hypersensitivity or worse that you have developed mania, psychosis, etc.

 

I once read that people didn't sue because they ended up being cured. At that moment I thought it had a certain logic, but... and all the time you spend until healing and everything you lose along the way, as well as the money you spend on tests, therapies, etc. And worst of all, passing the symptoms, the loss of credibility, losing family, friends, a partner and on and on.....

 

I feel so sorry for you, and for all of us here.

 

No one should have to go through this because of prescription drugs!!!

 

Hoping you start to see an improvement soon!

 

 

 

 

[[Al...]]

Well...nine months and a little change off of 1.5 mg Ativan taken as directed for two years by a physician I wish I could name publicly. We should all name these doctors publicly. They deserve to be recognized.

 

Hanging out in layperson withdrawal forums in the last months, I have repeatedly heard the same stories of irresponsible prescribing and cessation by doctors, poly drugging, and significant neurotoxic injury as a result. Over and over again, every patient was not given consent or informed consent before the damage. Every patient would have said no to the drug if they had known the possible consequences of taking it -- like losing their job, home, spouse, custody of children, on top of losing their autonomy or health for months or years. Frankly, who would have thunk it? You can lose your home from taking "medication" as directed by a doctor? You can have no history of severe mental illness and be locked up and force-drugged? Oh, yeah! That is just the beginning.

 

Our community should collectively put their foot down so that consent becomes a legal requirement worldwide. I only hope my voice in this forum saves someone else in the future from losing as much as I have lost.

 

Currently, here is what I am experiencing daily, 24/7, without real, meaningful, long-lasting windows:

 

Severe akathisia, pacing up to 12 hours a day

Bilateral tinnitus

Hyperacusis

Internal tremors

Electrical sensations all over the body

Paresthesias all over the body

Muscle pain, numbness, rigidity, and stiffness

Muscle spasms and twitches

Metallic taste in mouth

Extreme food and chemical sensitivities

 

The worst decision I made, other than taking a benzo, to begin with, was taking Seroquel for sleep during benzo withdrawal. Tapering that has created more symptoms than I had initially due to the benzo, and it has increased others to the point that I am completely debilitated and suffering intolerable uncontrollable pain 24/7. And I have been stuck on a dose of a medication that causes akathisia with severe akathisia. Do you want to know what that is like? Having a gun to your head and being locked in a cage too small for you that you are trapped in. Yes, this is my daily life now.

 

Thankfully, I am competent and well-spoken; I can still read and write. I am articulate in expressing what and how I feel. I realized that being competent led some providers to minimize, misdiagnose, or gaslight me. I have been told my symptoms are psychosomatic and that I need therapy. When I had an acute dystonic episode tapering Seroquel and ended up in two emergency rooms, I was told my symptoms were "psychogenic" and sent home. They said it must be "anxiety," not the fact that I was tapering a neuroleptic agent that could cause that. The psychiatrist then told me I had symptoms tapering because I unconsciously decided I was going to. He also told me my eye twitches resulted from a functional neurological disorder. It's interesting; before improper benzo cessation, I never had mania, FND, borderline personality disorder, or any other serious psychiatric illness or recreational drug addiction. I guess they pop up out of the blue, and then doctors put them on your medical records!! I am being sarcastic, obviously. They can all take a long walk off a short pier these doctors.  I fired the ones who were a**holes. And I have armed myself with advocates around me -- some I have paid for -- to avoid further harm. And if I make it out of this mess, I will change those medical records.

 

I have not stopped advocating for myself, even in the worst of circumstances, and I have been through hell and back multiple times. 10 ER visits, a six-day psych ward 5150, and seven days in a medical hospital. Hundreds of thousands of dollars in medical expenses. I read these words, and they don't feel real. Yes, I have DP/DR from the trauma of this experience.

 

I have fought my way to the correct diagnosis FINALLY by a compassionate psychiatrist who understands iatrogenic injury, I have educated my family and friends who believe me, and I have attorneys validating my experience and protecting me with paperwork.

 

I went from being a successful, take matters into their own hands business person with a highly stressful job that I loved and an adventurous life to being cared for by multiple caregivers and my elderly mother. I cannot live alone, work or earn money, socialize, drive, watch TV, listen to music, go to dinner or a concert, read a book, nap, meditate, or do anything functional or enjoyable. I am forcing myself to eat, and I am still underweight. I used to fly across the country to get my hair done, and now I wash it maybe once a week. I do not change out of pajamas and a "good day" is one where I am not rocking, writhing, squirming or pacing while convulsing on the floor crying.

 

This is just some of what I have experienced. I was a woman people admired, and now I am a cautionary tale for all those around me.

So yeah, at nine months, I thought I would be back out in the world. Instead, I am fighting to survive and live again. I guess the good news is I have beat anxiety. I am completely desensitized from what is happening to me at this point. So I guess the benzos did work wonders. (More sarcasm and a huge middle finger to the original provider on this one.) At this point, I wish I had that anxiety back that I thought was intolerable. That, my friends, was childs play.

 

So you have had no improvement in your tinnitus? Oh my ....