18-30 MONTHS AND UPWARDS

[[To...]]

It’s not withdraw after a point and Jennifer Leigh is still not healed and Don Killian got way worse again. You have to be wary of all these people who say it gets better when they themselves are not. Some never get better and stays same after same symptoms.

 

This is what we call “Fake News”... keep going because we KNOW it gets better, just takes awhile 

[[ge...]]

I'm joining the thread after reading through some posts. I have one contact in here who has been a steadfast cheerleader, even on his bad days, and I'm grateful!

 

I'm 2 weeks away from 38. Someone earlier asked if the waves and healing was still slow and progressive. I have recently noticed what I call gunshot patterns. I can go to bed one night, and literally have every symptom return at 4:30am, and then bam at 4 in the afternoon I realize I'm cruising along with no symptoms. My #1 continuous challenge is my body's overreaction to stimuli. Whether it's a walk I take, a massage, or even painting a wall. 2 days later I'm slammed with pain. I've realized the most important thing I can do for myself is distract from it. My first 2 years were the absolute worse. My turning point came with my first window at 20 months, and then the window/wave pattern began. Waves were still hard. As is being 37.5 months and still having symptoms. But...with the exception of my small setbacks, I have 100 other symptoms that are GONE! I also work and run my own business, which puts a lot of strain on my body. I try to eat well, and fail at that sometimes,  but you know what? I never give up.

Who you lean on matters! Realizing we all handle distress differently, try to limit interaction with anyone who brings fear into your bubble! Understand they have their own battle, and I'm certain they don't mean to hurt anyone.

In short, I'm happy to report that healing DOES happen. My gunshot waves are hopefully a sign that my receptors are finally kicking in. I know I don't get on here much anymore,  and that's really because when I'm not in a wave I don't even think of my symptoms anymore! Keep fighting warriors!!! Love to you all!!

[[So...]]

Klungo and GettingThere - Great posts.  This is the trial of our lives and we don't have to go through this alone. Keep up the positive notes.

[[In...]]

I'm joining the thread after reading through some posts. I have one contact in here who has been a steadfast cheerleader, even on his bad days, and I'm grateful!

 

I'm 2 weeks away from 38. Someone earlier asked if the waves and healing was still slow and progressive. I have recently noticed what I call gunshot patterns. I can go to bed one night, and literally have every symptom return at 4:30am, and then bam at 4 in the afternoon I realize I'm cruising along with no symptoms. My #1 continuous challenge is my body's overreaction to stimuli. Whether it's a walk I take, a massage, or even painting a wall. 2 days later I'm slammed with pain. I've realized the most important thing I can do for myself is distract from it. My first 2 years were the absolute worse. My turning point came with my first window at 20 months, and then the window/wave pattern began. Waves were still hard. As is being 37.5 months and still having symptoms. But...with the exception of my small setbacks, I have 100 other symptoms that are GONE! I also work and run my own business, which puts a lot of strain on my body. I try to eat well, and fail at that sometimes,  but you know what? I never give up.

Who you lean on matters! Realizing we all handle distress differently, try to limit interaction with anyone who brings fear into your bubble! Understand they have their own battle, and I'm certain they don't mean to hurt anyone.

In short, I'm happy to report that healing DOES happen. My gunshot waves are hopefully a sign that my receptors are finally kicking in. I know I don't get on here much anymore,  and that's really because when I'm not in a wave I don't even think of my symptoms anymore! Keep fighting warriors!!! Love to you all!!

 

I go to the 4 seasons for the spa, and after the massage the next day I am totally screwed.

[[ss...]]

Has anyone tried to drink this far out? Does it really mess people up?

[[So...]]

Do not drink alcohol, seriously it is not worth it, I drank at five months off and then at 11 months off; now I am 2 years off and in hell. Today I spent the day wishing I would die. I went for a lovely long walk with my husband last night, felt fairly Norma and today I wake up with the worst Benzo flu you could imagine. My waves now either last 4-5 days or a few hours it’s horrible I just can’t even cry because my emotions are so blunted. This life isn’t worth it to me honestly, I can’t keep doing this I’m so tired

[[ss...]]

I haven’t and I’m 27 months off and in torture so wouldn’t tie it to you drinking. I just hear some have and are healed by now and some aren’t.

[[Ne...]]

Songbird, don’t give up. I’m 31 months off the poison k medicine and in windows and waves every other day! The first year seemed like a cake walk compared to the following year and a half. It’s a crazy healing pattern, but we ARE and WILL heal...you have to believe that. I came home from a wonderful birthday vacation in a Florida with my family. Some days were good, others not so much.

I’m discouraged and sad on many days. I feel frustrated and stuck. But whenever I get really down I reach out to a friend or two from BB or come here to this thread and read positive stories.

It’s ok to come here and vent (that’s what it’s here for) but I truly hope people can add something positive every once in a while to keep the group going.

I don’t attend any public group meetings, but I know people who do and the wonderful, positive work

and support that it offers. That’s what we’re here for😉...to help and hold each other up. Keep on keeping on. Reach out when you need it. Wishing everyone here a few days, hours, minutes of peace.

❤️💪😘 New Girl

[[In...]]

Songbird, don’t give up. I’m 31 months off the poison k medicine and in windows and waves every other day! The first year seemed like a cake walk compared to the following year and a half. It’s a crazy healing pattern, but we ARE and WILL heal...you have to believe that. I came home from a wonderful birthday vacation in a Florida with my family. Some days were good, others not so much.

I’m discouraged and sad on many days. I feel frustrated and stuck. But whenever I get really down I reach out to a friend or two from BB or come here to this thread and read positive stories.

It’s ok to come here and vent (that’s what it’s here for) but I truly hope people can add something positive every once in a while to keep the group going.

I don’t attend any public group meetings, but I know people who do and the wonderful, positive work

and support that it offers. That’s what we’re here for😉...to help and hold each other up. Keep on keeping on. Reach out when you need it. Wishing everyone here a few days, hours, minutes of peace.

❤️💪😘 New Girl

 

Can you briefly explain the first year being better then year 2.5? Thank you, I am having a hard time lately and would like to hear your reasons for saying that

[[Ho...]]

Songbird, don’t give up. I’m 31 months off the poison k medicine and in windows and waves every other day! The first year seemed like a cake walk compared to the following year and a half. It’s a crazy healing pattern, but we ARE and WILL heal...you have to believe that. I came home from a wonderful birthday vacation in a Florida with my family. Some days were good, others not so much.

I’m discouraged and sad on many days. I feel frustrated and stuck. But whenever I get really down I reach out to a friend or two from BB or come here to this thread and read positive stories.

It’s ok to come here and vent (that’s what it’s here for) but I truly hope people can add something positive every once in a while to keep the group going.

I don’t attend any public group meetings, but I know people who do and the wonderful, positive work

and support that it offers. That’s what we’re here for😉...to help and hold each other up. Keep on keeping on. Reach out when you need it. Wishing everyone here a few days, hours, minutes of peace.

❤️💪😘 New Girl

 

Exactly my story at 26,5 months. Did you go downhill from a certain point? For me it was around 21 months off where I felt a switch to the other and even darker side. But it can’t last forever! Never give up. Stay strong and keep us informed.

[[So...]]

Thank you guys, thank you New Girl for the kind words. If I didn’t have a wedding to be in next week I wouldn’t be so stressed out I think. I overdid going on a long walk and that night I just got hit with the worst wave. Honestly I don’t think I hit acute until 11 months off the Benzo now honestly. The first year off wasn’t that hard. The second year has been hell on earth, probably the culmination of a lawsuit and my sister almost dying, it just broke me down. I am seeing improvements but it’s so incredibly slow. However I remember last year at this time I couldn’t even walk or stand up without my heart racing, I couldn’t go outside or go shopping, I couldn’t even really sit up without feeling sick, so to be able to go do things now and go out and sometimes even enjoy things is progress, I just compare myself to that first year after I jumped where I truly thought I was going to get off easy with symptoms, I travels to New York, I did so many fun things and then to be in hell at two years out it just makes me sad, I know things have to get better though.

[[ss...]]

Are people on here saying it gets worse at 2.5 years? Mine seems to be getting worse and fatigue and motivation is worse.

[[In...]]

I tend to doubt things get worse without triggers or exposure to drugs, bad diet or even chems in the air. As some have wrote, stress may have brought on a wave.

 

I have massive symptoms and issues at a 17 month mark that's way worse than last year but I have been exposed to Chems and other stuff that tossed me into consistent setback.

 

The first time i did this it never got worse that far out without a trigger. However, if you just CT's or finished a taper. month three and six tend to be rough.

[[Ne...]]

Not really sure how to explain how I got worse the second year off. All i know is that immediately after I was completely off the k, I didn’t feel great but didn’t have all the symptoms that I started to have in year 2 up until now. It certainly may be due to not keeping as strict of a whole, clean diet, not exercising as much, or just the daily stress of work. I can’t put my finger on it exactly, but I know the insomnia, fatigue and health anxiety persist. Maybe it’s true that we get worse right before getting better. I only know that time is the only answer. We have to soldier through, and we WILL come out on the other side. Attention all buddies: we must keep going😂. We’re going to have some bad days, but are brains are healing in some random, nonlinear way. It takes time, in some cases, a lot of time.

But it’s all good. Please keep going in the direction of healing...that’s what we must do. We’ve got this.

😘👍🙌💪✅❤️

New Girl

[[In...]]

thank u... i am having a hard time

[[pi...]]

thank u... i am having a hard time

 

wow its truly gut wrenching to see so many of you having a hard time this far out. I understand the misery well at this point of feeling trapped in a time tunnel where there is no sign of an end. I have a friend with lupus who is trying to get me to move from the "just waiting till this all ends and I can get my life back together" to "living with it" - people with chronic disease have been the most sincere and understanding in my experience and i feel like i have seen them for the first time since this whole ordeal. she introduced me to the spoon theory which was her way of thinking through her approach, which is interesting and helpful if trying to explain limitations to friends and family (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/, https://en.wikipedia.org/wiki/Spoon_theory)

 

For some reason, the "living with it" approach petrifies me and i freeze up if i seriously consider it. I'm stuck on thinking 'i just have to wait for my stop off this crazy train and then i will smell the fresh air and life will start again' just wait, bide my time, distract - this was my mantra through years of pain. Plus how do i start, there parts of life i just cant do with this broken down wretched body, no, im waiting for my stop.

 

I think the hard lesson for a lot of us is to just start anyway. We just have this huge unnatural sickening mountain we have to climb. yes its a denial of natural justice and fairness from the world but its our hand.

 

For those who need hope though, theres plenty here. Ive been remarkably better since month 20 - yes the the cruel irony is the closer you are to normal, the more frustrating it becomes, and the harder it is to tell whats benzos and whats just normal life again (its like feeling mentally tortured all the time, cause your sure this isn't normal, but its not so clear anymore - it medical jargon, it feels 'insidious' like its lurking in your mind and body deep down and rears its head every so often. i like feeling better but living with that feeling of 'its just under the surface' is terrifying)

 

sorry im getting lost here. ultimately though i think there huge reason to be positive. we will heal, we will smile and laugh and enjoy the basic pleasures of human existence again, each minute of each day and we will see the beauty of life and be moved to tears by it in those strange moments like we did before. Just stay the course all. And we will all be here to help each other along as we go. After 2 years of healing i know im healing. I understood it theoretically from the evidence but now ive seen it, i know it. We just have further to go.

 

:thumbsup:

[[In...]]

I was doing better but I constantly get stuck in setbacks that make it worse than the time before. Each time I start to make a little progress, either I have a dental appointment or I am breathing in some chemicals that put me right back where I started from and sometimes worse. I am constantly starting over.

[[ge...]]

I think everyone's brain and timeframe is different. It's easy to compare, especially when we struggle. But, whether it's a chemical,  a diet, a stressor.. the reality is it just takes time. Its impossible to eliminate everything.  And I have friends who do way better with diet and such, but still suffer. I'm 37 months, and I can finally wear shoes that I couldn't wear in December. My feet would burn so bad from my pain. Lots of my symptoms have improved! Yes, I'm still having waves, but they are manageable. The first day is usually the hardest, but mostly because I have windows that I'm completely free, so the contrast is hard.

 

I wonder if the drug makes a difference too. I see alot of people saying their first year was better than the second. Me, I personally had no relief for 20 months. Then windows started but were still not great. Health anxiety only kicks up now when I'm in a wave. Lots of symptoms are gone. Pain continues to torment me in my waves.

 

I hope each of you find relief soon, hang in there. Thanks for being here.

[[ss...]]

My agitation and fear has gotten horrendous at 27.5 months and don’t know why it’s really getting worse.

[[ge...]]

My agitation and fear has gotten horrendous at 27.5 months and don’t know why it’s really getting worse.

 

If you could attach your story in your signature, it may help people relate and respond to you.

Like which drug? Time frame of withdrawal?

[[In...]]

I think everyone's brain and timeframe is different. It's easy to compare, especially when we struggle. But, whether it's a chemical,  a diet, a stressor.. the reality is it just takes time. Its impossible to eliminate everything.  And I have friends who do way better with diet and such, but still suffer. I'm 37 months, and I can finally wear shoes that I couldn't wear in December. My feet would burn so bad from my pain. Lots of my symptoms have improved! Yes, I'm still having waves, but they are manageable. The first day is usually the hardest, but mostly because I have windows that I'm completely free, so the contrast is hard.

 

I wonder if the drug makes a difference too. I see alot of people saying their first year was better than the second. Me, I personally had no relief for 20 months. Then windows started but were still not great. Health anxiety only kicks up now when I'm in a wave. Lots of symptoms are gone. Pain continues to torment me in my waves.

 

I hope each of you find relief soon, hang in there. Thanks for being here.

 

My worst is extreme sensory disturbances. Its as if my CNS is so overactive that a tic tac will have me pacing in circles till I come down. I never had panic or anxiety though this, mostly my bad SX was akathisia. My akathisia was severe.

 

I was doing better 6 months ago but I came in contact with chems "environmental toxins" and its like I am starting over again. However, I am seriously kindled. The burning and nerve pain subsides over 12 motnhs and then if someone puts a magic marker in front of my nose it comes back again and sticks around for another 6 months it seems. I am being sarcastic regarding the marker but it seems that extreme.

[[Ho...]]

I can relate to most of you. My cycling has changed dramatically. Some moments 15-30 minutes completely non-functional only to come back to almost 100% an hour later. It’s hard to plan and forecast anything. But the short lasting waves are the lowest I have ever experienced. Is this normal this far out? I need to work, but almost impossible like this. I agree with you Pinkyandthebrain. Living with a disease is the best we can do, although it is dissapointing to wake up every day like this and go to bed with this. I am still counting the days/weeks. One week bad in a row is something I handle better than 3 hours acute acute, 2 hours functional, 2 hours moderate and again and again. Sigh, go to bed with hopefully a better day in front of me tommorow. 

[[Tr...]]

40 months. Many symptoms have disappeared, but still nervous and so much stress.

 

Can you also experience this?

 

Anna

[[ss...]]

Translator 200 do you function and enjoy life for the most part? Or is it still really bad?

[[bo...]]

I'm going to jump in on this thread for support. I am only 14 months off yesterday. I too get really worried about whether or not I will ever feel normal again. At fourteen months, it seems like my main symptoms are a sense of massive confusion and anger in the mornings that sort of follows me around all day. I go through moments of sadness and feel like crying often because of the anger and the confusion and the feeling like my head is just floating. The biggest problem for me lately has been anger at my family for no reason to the point where I get scared even being around them. I don't like being at home. Has anybody experienced this? I know nobody has done anything wrong, that's the problem.

 

I worry that I'm stuck with this anger at this point (it seems to be really triggered by stress or negative thinking). I just hope it lets up this summer with some time off from work. But having more time off may make it worse too. Who knows. All we can do is listen to people who have gotten better and hope. I have spoken with Michael Priebe, Baylissa, David Powers, and Jen Leigh. I have read countless success stories. I'm still scared every day.