Almost 21 months and have not turned a corner - thoughts?

[[Re...]]

I am very concerned about my progress. I have been off of benzos 20 months and three weeks or so now and I have not had one window or day of feeling good. The most challenging aspect of my benzo withdrawal journey was undoubtedly the decision to take Seroquel, as advised by doctors. The neurologist who recommended it said, "It will calm your nervous system." Fast forward to severe pacing akathisia for 14 months.

Had it not been for Seroquel, I believe I would have regained some normalcy by now. After 11 months off everything, I remain committed to my recovery without compromise. I've heard countless stories of setbacks from various treatments, even seemingly innocuous ones like grounding mats. I refuse to jeopardize my progress.

It's disheartening to see others making progress at 6, 12, or 18 months off benzos, while I'm struggling to see any improvement. I am happy that they get their lives back and feel better. But the lack of healing I'm experiencing leaves me feeling utterly hopeless. The conflicting information about where healing begins—whether it's from the last drug stopped or another point—is confusing and frustrating and I am uncertain about what to believe. Understanding when those who have experienced polypharmacy begin to see improvements or turn corners, can feel like grasping at straws. I am very confused at this point about what to think.

Each day feels like an impossible mountain to climb since losing my home and the support of my family recently. The loneliness is suffocating, as if no one truly cares about my well-being or what becomes of me. I have not been able to find affordable housing anywhere in my state and I have not worked in two years due to this injury. I need a cosigner for a place to live and my relative is saying they won't provide that. I took the step of filing for food stamps yesterday. I acknowledge my responsibility for not being fully financially prepared for a prolonged emergency. I could never have foreseen something like this but should have been better prepared.

The ongoing struggle with a frozen shoulder, a result of the chaos of polypharmacy, is a major obstacle. Dealing with this shoulder for eight months without relief is getting increasingly challenging and things like having help driving or with my pet is more costly. Yesterday, I was with someone who had a frozen shoulder, but mine was significantly worse, which left me feeling awful. I keep hoping for things to get better, but they haven't yet. Sometimes I wonder if I'm just fooling myself.

 

 

 

 

 

 

 

 

[[Ct...]]

@[Re...] My heart goes out to you. In addition to withdrawal symptoms, you’ve had one stressor upon another. It must be so hard to maneuver through all of this. Possibly someone can stop by with some suggestions.

[[Ma...]]

Why don’t you start posting in the Long Haulers Group? You might get more answers.

A number of recent Success Stories are 2 years. You’re close!

[[He...]]

Rebecca29, I have read about your situation. I am so sorry. I know how disappointing can be that feeling that only you can’t get better. Did you take some other medications, vitamins or supplements? I found that my heeling began after I stopped all things. I think that the stress in your life is so much and for sure it is a factor. Our fragile nerve systems react to these things. 

[[Ja...]]

Mm seroquel seems the medication that’s handed out like sweets now,.it’s such a predicament to be in as well when you feel absolutely terrible and offered another phyc med for comfort

I was with the phyc nurse this week after feeling mentally done in,I’m very dubious on accepting another med as well,.yea sorry to hear about your situation pal,.you mabie want to enquire about getting seroquel it can cause the exact symptoms you have

I tried it for a few days a couple of year ago,it felt like I was having heart issues and stopped asap.

[[ma...]]

@[Re...]much love to you ❤️❤️❤️❤️❤️❤️

[[PE...]]

8 hours ago, [[R...] said:

I am very concerned about my progress. I have been off of benzos 20 months and three weeks or so now and I have not had one window or day of feeling good. The most challenging aspect of my benzo withdrawal journey was undoubtedly the decision to take Seroquel, as advised by doctors. The neurologist who recommended it said, "It will calm your nervous system." Fast forward to severe pacing akathisia for 14 months.

Had it not been for Seroquel, I believe I would have regained some normalcy by now. After 11 months off everything, I remain committed to my recovery without compromise. I've heard countless stories of setbacks from various treatments, even seemingly innocuous ones like grounding mats. I refuse to jeopardize my progress.

It's disheartening to see others making progress at 6, 12, or 18 months off benzos, while I'm struggling to see any improvement. I am happy that they get their lives back and feel better. But the lack of healing I'm experiencing leaves me feeling utterly hopeless. The conflicting information about where healing begins—whether it's from the last drug stopped or another point—is confusing and frustrating and I am uncertain about what to believe. Understanding when those who have experienced polypharmacy begin to see improvements or turn corners, can feel like grasping at straws. I am very confused at this point about what to think.

Each day feels like an impossible mountain to climb since losing my home and the support of my family recently. The loneliness is suffocating, as if no one truly cares about my well-being or what becomes of me. I have not been able to find affordable housing anywhere in my state and I have not worked in two years due to this injury. I need a cosigner for a place to live and my relative is saying they won't provide that. I took the step of filing for food stamps yesterday. I acknowledge my responsibility for not being fully financially prepared for a prolonged emergency. I could never have foreseen something like this but should have been better prepared.

The ongoing struggle with a frozen shoulder, a result of the chaos of polypharmacy, is a major obstacle. Dealing with this shoulder for eight months without relief is getting increasingly challenging and things like having help driving or with my pet is more costly. Yesterday, I was with someone who had a frozen shoulder, but mine was significantly worse, which left me feeling awful. I keep hoping for things to get better, but they haven't yet. Sometimes I wonder if I'm just fooling myself.

Hi!

Have you tried CBD or THC? I don't know where you live and legal status..it helps me sleep and relax at nights. 

I'm 8 months out and insomnia is my main problem atm.

I also take very small amounts of quentapine and sometimes mirtazapine. Sometimes it helps me sleep sometimes not. It's famous to cause akathisia though.

[[Re...]]

On 06/06/2024 at 09:13, [[H...] said:

Rebecca29, I have read about your situation. I am so sorry. I know how disappointing can be that feeling that only you can’t get better. Did you take some other medications, vitamins or supplements? I found that my heeling began after I stopped all things. I think that the stress in your life is so much and for sure it is a factor. Our fragile nerve systems react to these things. 

I have been off of everything for over 11 months. I don't take anything at all and I am cautious about exposure to anything that could make me worse. I don't dye my hair, do my nails, etc. I am diligent.

[[Re...]]

On 06/06/2024 at 11:05, [[J...] said:

Mm seroquel seems the medication that’s handed out like sweets now,.it’s such a predicament to be in as well when you feel absolutely terrible and offered another phyc med for comfort

I was with the phyc nurse this week after feeling mentally done in,I’m very dubious on accepting another med as well,.yea sorry to hear about your situation pal,.you mabie want to enquire about getting seroquel it can cause the exact symptoms you have

I tried it for a few days a couple of year ago,it felt like I was having heart issues and stopped asap.

I know all about what Seroquel can do. I have thoroughly researched it. All of these psych drugs can cause the same symptoms along with antibiotics.

[[Re...]]

23 hours ago, [[P...] said:

Hi!

Have you tried CBD or THC? I don't know where you live and legal status..it helps me sleep and relax at nights. 

I'm 8 months out and insomnia is my main problem atm.

I also take very small amounts of quentapine and sometimes mirtazapine. Sometimes it helps me sleep sometimes not. It's famous to cause akathisia though.

After a doctor recommended trying a blend of CBD with a trace of THC for sleep over a year ago, I experienced a dystonic episode the same day while tapering off Quetiapine. I would never take anything else after what I have experienced. I am glad to hear drugs have been beneficial for you.

[[Re...]]

On 06/06/2024 at 08:33, [[C...] said:

@[Re...] My heart goes out to you. In addition to withdrawal symptoms, you’ve had one stressor upon another. It must be so hard to maneuver through all of this. Possibly someone can stop by with some suggestions.

Thank you, @[Ct...]. I'm amazed at how I've managed to keep going despite all the challenges. Before this, my life was relatively drama-free, still with obstacles, but nothing of this magnitude. This prolonged period of suffering has been difficult to endure, and that is putting it lightly.

[[Re...]]

On 06/06/2024 at 08:45, [[M...] said:

Why don’t you start posting in the Long Haulers Group? You might get more answers.

A number of recent Success Stories are 2 years. You’re close!

Thanks, Mary. Yes, two years seems to be a milestone for some people. I hope my healing comes on or before the two-year mark.

[[En...]]

On 06/06/2024 at 09:38, [[R...] said:

I am very concerned about my progress. I have been off of benzos 20 months and three weeks or so now and I have not had one window or day of feeling good. The most challenging aspect of my benzo withdrawal journey was undoubtedly the decision to take Seroquel, as advised by doctors. The neurologist who recommended it said, "It will calm your nervous system." Fast forward to severe pacing akathisia for 14 months.

Had it not been for Seroquel, I believe I would have regained some normalcy by now. After 11 months off everything, I remain committed to my recovery without compromise. I've heard countless stories of setbacks from various treatments, even seemingly innocuous ones like grounding mats. I refuse to jeopardize my progress.

It's disheartening to see others making progress at 6, 12, or 18 months off benzos, while I'm struggling to see any improvement. I am happy that they get their lives back and feel better. But the lack of healing I'm experiencing leaves me feeling utterly hopeless. The conflicting information about where healing begins—whether it's from the last drug stopped or another point—is confusing and frustrating and I am uncertain about what to believe. Understanding when those who have experienced polypharmacy begin to see improvements or turn corners, can feel like grasping at straws. I am very confused at this point about what to think.

Each day feels like an impossible mountain to climb since losing my home and the support of my family recently. The loneliness is suffocating, as if no one truly cares about my well-being or what becomes of me. I have not been able to find affordable housing anywhere in my state and I have not worked in two years due to this injury. I need a cosigner for a place to live and my relative is saying they won't provide that. I took the step of filing for food stamps yesterday. I acknowledge my responsibility for not being fully financially prepared for a prolonged emergency. I could never have foreseen something like this but should have been better prepared.

The ongoing struggle with a frozen shoulder, a result of the chaos of polypharmacy, is a major obstacle. Dealing with this shoulder for eight months without relief is getting increasingly challenging and things like having help driving or with my pet is more costly. Yesterday, I was with someone who had a frozen shoulder, but mine was significantly worse, which left me feeling awful. I keep hoping for things to get better, but they haven't yet. Sometimes I wonder if I'm just fooling myself.

You are experiencing protracted withdrawal. Some people go through this for 2 years. It is unfortunate you have to experience this for so long this is a taxing issue to deal with long term. 

You will feel good again. Accept that this is what it is and go with the flow. Dont stress on the symptoms. 

[[...]]

You are a strong lady Rebecca. I do understand that you want to be out of all the pain and stress and have a free life again. You will get there soon. You will write a success story right here on bb!! Hugsss

[[Re...]]

[[Re...]]

13 hours ago, [[E...] said:

You are experiencing protracted withdrawal. Some people go through this for 2 years. It is unfortunate you have to experience this for so long this is a taxing issue to deal with long term. 

You will feel good again. Accept that this is what it is and go with the flow. Dont stress on the symptoms. 

This in-between is so hard. I don't feel better, but thankfully I also don't feel worse. Some symptoms don't seem to change at all. You try to go back to living, but it is so difficult to do the basics. Things like riding in a car or walking to the store. Things you used to do and not think twice about.