Reassurance please

[[Pi...]]

At 19 months, I have seen no improvements at all and I am so desperate and scared. Tinnitus, terror, total insomnia, burning, twitching, weakness, limbs are heavy, flashing lights in vision and blurred vision, no cognitive abilities or memory, bloating, constant diarrhoea and urination, deep deep depression and looping, terrifying thoughts. I’m so scared I’m going to die from this or never heal. Can anyone offer me hope please?

[[pi...]]

I’m so sorry @[Pi...], this process can seem daunting and unending. It seems you did a very rapid taper. This is a huge shock to the nervous system. For some people, recovery can take time, much longer than we wish or need. There is hope! I have seen many people heal and recover even though it was a long and challenging journey. Recently, there was a Success Story written by someone who did in fact have a long recovery. I’ll try to find it for you. 

Try to replace the fear with trust, trust that your body will heal. 

[[pi...]]

Here it is:

 

[[Ye...]]

Hello friend @[Pi...]!, all this seems like a science fiction movie, I know. I was taking Klonopin and I stopped taking it suddenly and for 16 months I have had the same heightened anxiety from the beginning that doesn't let me interact with other people. I've barely left the house in all this time. And I've been like this for 16 months. 

It is clear that the body will recover. It is not known how long it will take, friend Pickle Purr, but at some point we will begin to notice it, sooner rather than later. 

A lot of strength 💪🏼😘👍🏻

[[WU...]]

@[pi...]I think I would be more reassured to hear a story of someone recovering in a much shorter time!  They said they felt normal between 3-5 years but that is exceptionally long for most people.

It seems most recover within 2 years, give or take, and some can recover very quickly, almost overnight after suffering horribly with no windows.

So @[Pi...] why don't we hold on to the thought of escalating recovery rather than this going on for a long, long time.   I absolutely empathise as I don't have windows, but I do feel I could turn a corner at any time. Why do I think this?  Because it is what I want to happen and because it is what has happened for many others so the same can happen for us.  

 

[[Ye...]]

It is easy to lose hope as the months continue to pass @[WU...] and the most difficult symptoms remain the same from the beginning, without feeling any improvement. 

After 16 months without any change, in anxiety in my case, it is easy and even human, I would say, to stop being optimistic.

Sooner or later I will be able to live again, but it is very normal to wear out as time goes by. It's very difficult to deceive yourself ☝🏻🤷🏻‍♂️

[[Pi...]]

@[WU...]I agree. It is the thought of this taking several years that pushes me to the brink and makes me want to give up, I have come very very close several times recently. If I believed on any level that by the 2 year mark I could be nearly recovered then I would have hope.

[[Pi...]]

@[Ye...]thank you for your encouragement xx

[[WU...]]

15 minutes ago, [[Y...] said:

After 16 months without any change

I'm at 16 and a half months, so about the same as you. No change in intensity either, head symptoms in my case. Have hardly left the house as the feeling is so intense. But we know from others that it gets better, we just don't know when, so just have to endure as best we can, try to find even just one thing every day that makes us smile.

 

17 minutes ago, [[P...] said:

If I believed on any level that by the 2 year mark I could be nearly recovered then I would have hope.

Just believe it, why shouldn't you recover if most people do? That's what I'm saying to myself anyway, even though there is absolutely no sign of improvement, but many before us have felt the same and then gone on to heal. 

[[Pi...]]

@[WU...]i have a lot of head sxs too, can you sleep? xx

[[WU...]]

21 minutes ago, [[P...] said:

can you sleep?

I do sleep yes. I think the trick is to go to bed not minding whether you sleep or not. Even just resting at night is enough.  How do you spend your days?

[[Pi...]]

@[WU...]so happy you can sleep, my head sxs and severe agitation prevent sleep for me and I’m lucky if I get 2/3 hours at most. Days are spent mainly on the couch so no life at all - and my life before was fabulous, I was so lucky. Were you on benzos for long?

[[WU...]]

32 minutes ago, [[P...] said:

Were you on benzos for long?

First prescribed about 25 years ago to "break the cycle" of persistent neck pain. What a laugh eh? I haven't taken it the whole time, its been on and off but prescribed more in the 5 years before I went CT last year. How about you, and what was the reason?

It is miserable not having our previous carefree mobility, even to just go grocery shopping which I never liked but now it would be like having a wonderful day out! 

All the symptoms, the agitation, everything, is all the brain sorting itself out. In some ways it is reassuring, just knowing there is nothing we actually need to do, just let it all happen, however awful it feels, healing is unfortunately a painful process.

[[Pi...]]

@[WU...]Thank you so much for replying, this can be such an isolating experience. Was on it for a year after an adverse reaction to the Covid vaccine. Oh just to be able to pop to the shops or to go back to having a happy, carefree, fulfilled existence , instead of wondering if you are going to make it through the next second 24/7. Seems impossible to believe that the ability to do the most basic of things has been taken away! 

[[Ye...]]

Hi @[WU...]. Well, I started taking it (klonopin) when I was 24 until I was 37. I stopped taking it suddenly and I've been like this for 16 months 🤷🏻‍♂️ I started taking it because of a history of social anxiety but it has nothing to do with what I feel now. Before I could go out on the street, now I can't 🤔🤔 

and counting the months that go by...

Delighted 🙋🏻‍♂️

[[in...]]

@[Pi...] It's not easy and I'm struggling with this myself, but we must constantly remind ourselves/each other that it will turn around! Things will get better eventually. It feels like forever. I know. Feel free to send me a message if you feel like talking! 💯🙏

[[WU...]]

55 minutes ago, [[Y...] said:

I stopped taking it suddenly

Yes me too and that was a bit of shock to the system ! But this doesn't mean we take longer to heal as plenty of others have recovered in similar time frames to those who long-tapered. There is no logic to any of this.

I think one day we will just want to go out again, out of nowhere we will get the urge. That's what I think anyway

[[WU...]]

1 hour ago, [[P...] said:

Was on it for a year after an adverse reaction to the Covid vaccine.

That's tough, but what a strange thing to prescribe. They must have thought it was down to anxiety rather than an actual reaction to the vaccine?  Who knows but it clearly didn't help

[[Ma...]]

@[Pi...] You are not alone at all and please believe in your own healing.

Like you, I struggle daily, most recently with these looping thoughts that come a mile a minute. By night I feel like I have whiplash. The surges, terror, night sweats and sleep disturbances…not for the weak (even though none of us asked to be strong).

JenSwan told me to ‘try to habit myself out if it’, as in instead of giving in to the soul-sucking fatigue just do something, anything. Some days it really does work. Maybe you can try to ‘habit yourself’ into going outside-for 5 minutes. Then keep doing so when you can.

Even though I can’t visualize anything I kind of mantra myself into my healed future by laying down and just repeating what I am going to do-kind of like manifesting. Does it work? I don’t know but it does get me out of the endless hell briefly.

And humming. When the onslaught of brutal looping thoughts are about to take me out, I hummmmmmm. You can’t think when you are humming!

Just keep going. Hopefully a window is right around the corner.

[[Mi...]]

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

Here it is:

I really do not understand some stories. Above there is an example. Celebrating 10 years off benzo and mentioning that it took 3-5 years to complete healing....but when you read the history from the beginning there is 2 months celebration and being able to establish company, fall in love - I'm really glad it was so good. Then 1 year celebration, 2 years...and explaining that second year was good , first one also not bad. Beside this that was success story after 1 year tapering according Ashton manual....

How to compare it with Pickle Purr story? I'm sorry I'm asking this but when serching through stories to help my wife I find such confusing stories from time to time.

Pickle Purr I wish you and all suffering people strenght fight and win.

[[vo...]]

1 minute ago, [[M...] said:

I really do not understand some stories. Above there is an example. Celebrating 10 years off benzo and mentioning that it took 3-5 years to complete healing....but when you read the history from the beginning there is 2 months celebration and being able to establish company, fall in love - I'm really glad it was so good. Then 1 year celebration, 2 years...and explaining that second year was good , first one also not bad. Beside this that was success story after 1 year tapering according Ashton manual....

How to compare it with Pickle Purr story? I'm sorry I'm asking this but when serching through stories to help my wife I find such confusing stories from time to time.

Pickle Purr I wish you and all suffering people strenght fight and win.

@[Mi...] Hi! I'm trying to be sure I understanding what you are asking before I attempt to answer your question - are you asking why do some members seem to move along through this process and their stories seem to lead you to believe that this process is not too bad for them while others are dealing with what seems to be such a difficult process?

[[Mi...]]

Hi Voluntas, I understand that everyone has different way of going through recovery, that's clear. But sometimes there are people who has really horrible symptoms, no windows, and are actually getting worse with the time, finding it so difficult to believe that healing takes really place (usually people after CT or rapid taper). And when they get advices from people who admit it is normal and most of us went through this horror, it is ok - they do need support. But if you go deeper and check the story of people who advise...sometimes you get surprised that it was not that terrible, they often could go out, see friends, watch simple TV programs, and what was in a/m example - establish company and even fell in love:) after 2 months after stopping 1 year tapering process... I'm sorry I write about it, I wish everyone the easiest recovery but I'm desperate to find some help for my wife and when I see such an examples and on the other side poor Pickle Purr or my wife, and many others....I simply get a bit rancorous....hope you know what I wanted to tell. Thank you for trying to reply.

[[jo...]]

17 minutes ago, [[M...] said:

But if you go deeper and check the story of people who advise...sometimes you get surprised that it was not that terrible

I'm not sure about that. Some people have it worse for sure, but it's at the very least terrible for everyone going through this.

[[vo...]]

@[Mi...] You are very intuitive about what you see people posting and commenting. Everybody seems to take a different path through this process. I will say that I am 13 mos. into withdrawal and I've never had a window that I know of. I tapered in 2 weeks because I was unaware at the time, of the dangers of a rapid taper. I just wanted off benzos. Throughout the day my symptoms either go up or down. For some reason I'm fortunate that they aren't horrible first thing in the morning - I like to go to the gym and I just try to ignore whatever symptoms I have going on at that time. There are days I just can't go because the symptoms are intolerable. That distraction does a world of good for me. 

I don't generally talk about my symptoms unless I'm letting someone know that I'm experiencing the same symptoms they are and I don't try to dwell on them as I find it only magnifies them. If they want to read my symptoms, they can go to my profile. That's what works best for me. Distraction of any kind 24/7, works best for me and I read on BB it works for others as well. Someone on BB commented that no two snowflakes are alike and neither are we, through this process of withdrawal and I thought that was a perfect analogy.

[[Mi...]]

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

I'm not sure about that. Some people have it worse for sure, but it's at the very least terrible for everyone going through this.

Of course, fully agree with it. Nobody should ever suffer because of meds.