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Help, Positive vibes needed, no longer believe I will recover.


[le...]

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In middle of Covid infection so not in best head space anyway, but for  over 2 years seen little improvement in mental symptoms. Especially since covid been thinking this is permanent. With Covid brain haven’t the energy to search for proof that this isn’t permanent brain injury. I know lot people do take 3-4 years to recover, and crazy intrusive thoughts seem a common symptom. But longer it goes on the more hope decreases. I haven’t been badly affected physically by Covid but the depression and anxiety def increased. Haven’t been on holiday or out fir day in over 2 years. Any links welcome.
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hello sweet warrior,

remember when we are in a wave or setback our thoughts can sometimes become negative and dark. you are doing so much better than the last time I responded to you. your tone and attitude are so much stronger. this journey can be so relentless and frustrating but try and remember we are slowly healing. it might even take 4 years but you will get there. I am 2 years out and still get my challenging months. I am very slowly healing so that makes me very happy. I remember that first year of complete hell and I know that I have come so far from that misery. You are not alone. And you will get back on track after COVID. love yourself and be gentle to yourself while you are sick.  :smitten:

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Thanks fir the kind words. Have come to the realisation that not all of us do recover. Think maybe will just have to accept this is my life now. I am very limited in what I can do, will just have try make the best of the half life I currently have. I think mental symptoms much harder to recover from, if things were going improve after everything I have tried they would of by now. Struggled to find  anyone who recovered after this long with no windows.Realising the only way cope with this is to give up fighting, just accept this is my life now.
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In middle of Covid infection so not in best head space anyway, but for  over 2 years seen little improvement in mental symptoms. Especially since covid been thinking this is permanent. With Covid brain haven’t the energy to search for proof that this isn’t permanent brain injury. I know lot people do take 3-4 years to recover, and crazy intrusive thoughts seem a common symptom. But longer it goes on the more hope decreases. I haven’t been badly affected physically by Covid but the depression and anxiety def increased. Haven’t been on holiday or out fir day in over 2 years. Any links welcome.

Hi Leann,

 

Never forget you have been on poison for 12 years which is very long, so you need to give it time to heal, I have been couple of months as needed and had a very Bad W/D and still suffering at month of 6 and half. Repeat with yourself, Healing Going on...But Super slow.. Best of Healing for you

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Oh Leann....you've made progress you just don't see it and thats what makes it so hard. The covid is def affecting how you are perceiving things and that is ok and it is normal. every time I have a med setback I tank with anxiety and depression too. Like really tank. but I realize you are in a place where you would give anything to at least feel a really awesome window - bc lets face it - it gives hope.

 

I work at a hospital and one of the units I round on are stroke patients. On average it can take them at least two years before they really see healing and meaningful gains in recovery. Sure they make gains along the way - but this timeframe is a reflection of just how complex our body is and how much time it takes to recover. Our damage is multi systemic, which is actually worse. So we need time.

 

I read a research article published in like the last 2 years in which they talk about how when receptors regrow, they are actually in an infantile state at first (of course). So imagine asking a baby to do adult tasks...we can't expect infantile receptors to handle full loads! It always helps me to understand the science behind how our bodies function and apply it to our recovery process.

 

there are recovery stories of ppl who never had a window for years and then suddenly the "switch flips" and they feel alive again. So please don't lose hope.

 

hugs

Trina75

 

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Hi Leann!

I just wanted to agree with others that I think it seems like you have had small improvements, and that your attitude is definitely better than where it was :)

I am still so sorry for your intrusive thoughts:(

I know this may sound dumb.....and maybe you have already tried it. But I know you often say that you think maybe you just won't recover. What if you sort of just said "well, maybe this IS how it will be, but I'm going to keep living'? Like instead of letting the thoughts keep you from doing things, just do them anyway and know that they will be there. Like in a way, thinking to yourself "yeah yeah, there they are but I don't fear them, and they won't stop me from trying to engage". I know, I know, it's still VERY hard to do because they are so distracting and disturbing. Not saying this would be easily done! Have you ever seen the movie "A Beautiful Mind" with Russell Crowe? It was based on a true story. If you haven't I would not recommend it if you are sensitive to intrusions!!! But my point is that the guy in the movie John Nash, was a brilliant mathematician and professor. He ends up having hallucinations. And after trying the meds, he does not like them. He decides in the end to go med free. Knowing he will always have the hallucinations. But he keeps living. Even keeps teaching, and has to ask his students when someone new comes through the door "do you guys see this person?" But yeah, it's just inspiring to know that he did it and continued on. NOT EASY! 

Anyway, I guess my point was to try and encourage you to

1. Keep going because there is plenty of evidence that people do heal from benzo damage, and you can too!!

2. Keep going trying your hardest to not let it stop you

And 3.  Keep going because your life has value

:smitten:

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I did see that film he had schizophrenia which can be controlled and helped with medication, this is more extreme anxiety, more meds didn’t help at all, if there was something to make it go away I would take it. I just haven’t found anyone on here with prolonged severe mental symptoms who recovered. I appreciate unless you have constant bad anxiety it is difficult to understand  how it destroys your life. I can cope with lot of physical pain, but know fir others physical symptoms become unbearable, there were only a couple like  me Tweed and Perth but they aren’t on here anymore, Trying to push myself just backfires on me the anxiety just gets lot worse afterwards. Just when you have no idea if or when you will recover, and  there is no one to compare with. It isn’t a life, Trina is right Covid has made anxiety lot worse, have read many people do end up with mental health problems after Covid. Thanks for the response anyway.
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:(

I am truly sorry Leann. I did not have the intrusive thoughts with benzo WD. However, I did have it really bad with post partum with my second child. And it was bad. Hospitalization for it. Of course I was treated with meds for a brief time and then it never came back. But yeah, it was from post partum, so totally different. But I'm just saying that I do know what that is like, and I wish so bad for it to get better for you!!!! I really do. My heart can feel it and remember what that torture was like.

Sending you hugs

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Thank you. Sounds crazy but in some ways wish it was genuine mental illness, could be treated with medication then and I would improve. I do believe it’s chemical damage, as came on very gradually, got worse longer I was off. Just wish was someone else going through it I could connect with. Feeling really washed out physically with the Covid now as well. Thank you for your kind thoughts anyway x
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Thank you. Sounds crazy but in some ways wish it was genuine mental illness, could be treated with medication then and I would improve. I do believe it’s chemical damage, as came on very gradually, got worse longer I was off. Just wish was someone else going through it I could connect with. Feeling really washed out physically with the Covid now as well. Thank you for your kind thoughts anyway x

 

I am 3.5 years off and I’m a setback and the anxiety, fear, fight or flight is something beyond words. I wake in the morning with adrenaline, cortisol, massive anxiety, among new symptoms now too. The anxiety is horrific! I’m debating on a beta blocker. I’m going to see a cardiologist next week who works with my primary care and may discuss it to think about. I’m a mom and just want my life back yet meds also terrify the hell out of me. We just have to keep going.

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Oh Leann....you've made progress you just don't see it and thats what makes it so hard. The covid is def affecting how you are perceiving things and that is ok and it is normal. every time I have a med setback I tank with anxiety and depression too. Like really tank. but I realize you are in a place where you would give anything to at least feel a really awesome window - bc lets face it - it gives hope.

 

I work at a hospital and one of the units I round on are stroke patients. On average it can take them at least two years before they really see healing and meaningful gains in recovery. Sure they make gains along the way - but this timeframe is a reflection of just how complex our body is and how much time it takes to recover. Our image is multi systemic, which is actually worse. So we need time.

 

I read a research article published in like the last 2 years in which they talk about how when receptors regrow, they are actually in an infantile state at first (of course). So imagine asking a baby to do adult tasks...we can't expect infantile receptors to handle full loads! It always helps me to understand the science behind how our bodies function and apply it to our recovery process.

 

there are recovery stories of ppl who never had a window for years and then suddenly the "switch flips" and they feel alive again. So please don't lose hope.

 

hugs

Trina75

 

Trina, thanks for sharing your experience with stroke patients with Leann as it helps me, too. I am at around 58 months post jumping off Klonopin (I rapid tapered 8 drugs in a row, though) and my cognitive impairment, headaches and fatigue are pretty bad still. I need all the hope I can get, too.

So sorry you got Covid, Leann, on top of everything else.

I think it will just take more time, but I hope we both can recover.

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My Mum had couple strokes, but her symptoms largely physical. You can do exercises to regain strength, etc for these, build up your muscles regain mobility? I could cope with physical symptoms. My husband had cardiac arrest and he did crosswords and stuff get his brain working again, But when it’s chemically induced none of recommended brain retraining stuff helped me.Some things just made it worse. Having no control over your brain most scary part.Distraction worked at first, but after couple years not so much. Am recovering from Covid thankfully.
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Hi- You will definitely heal!

 

I am in the same boat as you and in a setback right now and thinking dark thoughts but I was a lot better for a long time . I thought I was healed a few different times already.

 

We all think we won't heal and that we have a serious mental illness/ serious illness etc...

 

My sister got covid and she had depression/ brain fog etc for about a month after and now she feels great again.

 

Remember when we are in this state we do not think clearly.

 

You will be ok! Just rest and hang in there.

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Think it’s because I haven’t improved at all, never had a window. Gives me doubts I will recover... Covid  definitely hasn’t helped.
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Oh Leann....you've made progress you just don't see it and thats what makes it so hard. The covid is def affecting how you are perceiving things and that is ok and it is normal. every time I have a med setback I tank with anxiety and depression too. Like really tank. but I realize you are in a place where you would give anything to at least feel a really awesome window - bc lets face it - it gives hope.

 

I work at a hospital and one of the units I round on are stroke patients. On average it can take them at least two years before they really see healing and meaningful gains in recovery. Sure they make gains along the way - but this timeframe is a reflection of just how complex our body is and how much time it takes to recover. Our damage is multi systemic, which is actually worse. So we need time.

 

I read a research article published in like the last 2 years in which they talk about how when receptors regrow, they are actually in an infantile state at first (of course). So imagine asking a baby to do adult tasks...we can't expect infantile receptors to handle full loads! It always helps me to understand the science behind how our bodies function and apply it to our recovery process.

 

there are recovery stories of ppl who never had a window for years and then suddenly the "switch flips" and they feel alive again. So please don't lose hope.

 

hugs

Trina75

 

Trina I soooo resonate with the message from that research paper!  It totally makes sense that we've had those original receptors our whole life, and then the poison destroys them and when we remove the poison we grow new ones (thanks goodness!) and they need time to mature.  I've thought about it like new skin after an injury - that shin is so sensitive and subject to injury or sunburn for a long time.

 

Don't go to any trouble but I would love to read that research paper.  Any thoughts how I could search for it?

 

Happy healing to you!

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Hi Lean,

I feel sorry for how you feel. Most of my symptoms are mental too. I just reinstated second time and after two months I'm starting my third taper soon after had been two years off. Both times due to supplements that did nothing but harm.

Try not to label yourself as crazy or incurable. Nobody knows what you really have. The thing you really know is that a medication and a virus destabilized you. If you hang in there you body is strong enough to fix itself. Try not to monitor yourself all the time. Push yourself to get distracted as if your life depends of that. BB helps but the cure is in yourself. People will help but they have their own limits so it is mostly on you. It's a baby steps thing.

As the saying says: "if you are going through hell, KEEP GOING!

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Hi Leann - something you mentioned just made me think - you said when you push yourself by doing things it is worse for the anxiety.  That is exactly how it is for the vast majority of us.  When we overtax our system we end up feeling worse and suffer more.

 

Just to mention that I really have never had a true window either.  I've never been completely free of symptoms.  They may recede for a while and I can do things (but not too much) and then they're back.  I have good days when the symptoms are less and worse days when they're really there.  But I have never had one day since this whole nightmare began where I went the whole day without a symptom.  So the no window thing isn't rare.

 

Back to my first point that although you have no physical symptoms you do things and the anxiety is worse.  I have really no mental symptoms but if I sit and talk with someone for 3 hours I stress my brain and my pain and physical symptoms are worse.  So my point is this:  If you really rest your body and do only serene things and pamper yourself physically do you notice an improvement in your mental status?  I guess my thought is that because you don't have physical symptoms you don't have issues doing things, but you might be overtaxing the system anyway and need to rest more.  Sorry for rambling - just thinking out loud.

 

Praying for you my friend!

 

 

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I got lot physical symptoms at first now have some minor  ones remaining ,headache, lot sinus pain, ibs flare ups,  when having bad days nausea off my food. Mental symptoms never let up, nothing makes any difference whether I push myself or sit around doing nothing I will have to push my self to stop checking certain things, even though it’s not OCD, think some things becoming a habit. Just have put up with bad anxiety I feel afterwards. Otherwise I can see will still have no life 2 years from now.

You are lucky not having mental symptoms, they are lot harder to deal with. The Covid didn’t help as apparently it can cause mental health problems.

Distractions did help a lot first couple years, but not very effective now,the Covid has definitely given me depression, made me even more of moaning Minnie! Probably good thing can’t get zopiclone off GP, would seriously thought about reinstating just give me some peace

Thank you for your prayers, he’s not listening to mine so far😢

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I am also over 3 years off and my anxiety comes and goes.

 

I do believe this is still part of the healing process.

 

I had a month recently where I had no anxiety at all and months in between where I was afraid to look in the mirror.

 

Try to stay strong.

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I just cannot understand why I am feeling so bad for so long, and last 6 months seem be getting worse. Mainly just took zop as and when, tiny dose, only had a max of 4 packets a year. Others on higher doses and poly drugged, recovered quicker than me.Can only surmise being made to CT caused this. Will have to force myself to do things that will make me more anxious to try break the mental cycle of the thoughts. Doing nothing just waiting to recover obviously doesn’t work. Just feel I am constantly fighting my own brain. Have totally forgotten what feeling happy feels like. Just can’t imagine recovery will happen anymore
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I just cannot understand why I am feeling so bad for so long, and last 6 months seem be getting worse. Mainly just took zop as and when, tiny dose, only had a max of 4 packets a year. Others on higher doses and poly drugged, recovered quicker than me.Can only surmise being made to CT caused this. Will have to force myself to do things that will make me more anxious to try break the mental cycle of the thoughts. Doing nothing just waiting to recover obviously doesn’t work. Just feel I am constantly fighting my own brain. Have totally forgotten what feeling happy feels like. Just can’t imagine recovery will happen anymore

I feel the same at 3.5 years off and in a setback and worse then ever but my neurologist even said this can take many years. My functional med dr who is benzo withdrawal educated said the same. They all tell me I need to watch my thoughts as much as I can. Also my therapist I do CBT with, they all hugely believe in neuroplasticity. I’m even doing baby steps with the DNRS program. Remember what you tell yourself daily will either lift you up or tear you down. You will heal. I will heal. When? We don’t know. But in the mid period I do think the words we believe are critical, and trust me I have a very high load of mental symptoms. 

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I’m trying exposure therapy to try break the cycle of thoughts. Making me feel like absolute s**t at moment, plus Covid really affected me mentally, have read can affect the brain, Have you done exposure therapy at all, just praying it eventually eases and actually helps. Really bl**dy hard.
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Ha I put myself through exposure therapy on a daily basis and tend to push to hard and regret it. I do what I can when I can and am trying DNRS for the last few months also. I understand feeling like a pile of you know what, but I look at our son and I say I will win this and I WILL DO IT FOR YOU!
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I did try brain retraining course, but seemed to advise completely  different approach than CBT.. Very confusing when different therapies advise different things. Been watching videos from a therapist mainly to do with OCD rather than chemical anxiety , but very helpful. She explains  well why ERP would work. I guess going to ramp things up to start with as you are fighting your own brain. Seems Covid can affect the nervous system, husband felt quite depressed after it as well. Another buddy who took meds as and when really struggling, makes me wonder if unknowingly we were suffering interdose withdrawal over the years, would explain why we feel so bad when only took doses sporadically fir long time?
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