12-18 month support

[[Gr...]]

Hello.  My name is Susan.  I took Xanax for more than a decade, maybe 13 years,  on a daily basis.  Over the last 10 years I have, at various times, been very, very ill from tolerance, attempted three times to get off benzos, kindled, and finally did a cold turkey on Nov 15, 2013.  And I'm still standing, I'm alive, lol  . And I'm getting better.  I see a lot of improvement from this time last year.  However, I still have symptoms, I still get waves. 

 

When I started this journey, I never dreamed I would still be getting waves and symptoms a year out, but I am.  If someone had told me that then, the way I was suffering, I don't think I could have handled it.  I suspect my healing will take approximately the two years the addiction specialist docs say it takes, hopefully with improvement along the way.

 

This thread is primarily for those starting or into that second year, still getting symptoms, but everyone is welcome.  I thought it might be nice to talk about symptoms, what's gone, what's left, and what we're able to do now, what we still can't do, how we're handling the reentry process, is it better to push ourselves, baby ourselves, whatever comes to mind.

 

So, me, my sx.  The last two months I've had really rapid cycling, DP/DR/heavy cog fog, head pressure.  I have sleep irregularities, intermittent heavy fatigue, nausea, vertigo, dizziness.  Some GI issues.  Memory loss, cognitive issues, don't remember much of what I read or see on T.V.  I never really get windows, symptoms just lessen in intensity.  I have exercise intolerance, which scares me.  The fatigue scares me, too, I'm afraid it's adrenal fatigue, I'm afraid it's going to take years to go away.  If anyone could weigh in on that, much appreciated.  And just recently I've had some uber anxiety and panic.  That's a little better this evening, though.  And until recently that was a sx that had gone away.

 

Level of function.  I took an early retirement before I jumped, so although I planned to go back to work part time, and I need to financially, I have some savings and I'm babying myself until I feel better.  If I had to, it would be terribly hard, but I might be able to do two days a week.  I really would not want to, though.  When I say I wouldn't want to, I mean I would love to go back to work, I like what I do, but I think it would be a terrible hardship, trying to function.  I also have very bad memories of dragging myself to work for many years while in tolerance, so I'm a little gun shy, I want to be sure it's not going to be a nightmare. 

 

I can drive almost anywhere.  I ride my bike every day (have a bad time with anything aerobic, even walking)  I'm pretty strong on the bike, though.  I can do 9-10 miles a day.  I do light cleaning, dishes, laundry, cook dinner for my sons and me.  I still have trouble with bathrooms and vacuuming and the kitchen -- actually, the housework is too much for me.  I can't do a lot of things in one day.  So if I ride my bike, prepare dinner, dishes, and a little light housework, I've kind of had it.  I make lists and try to do housework piecemeal, but it doesn't get done as it should. 

 

I go to most stores, not the mall (but I always hated malls)  I can make decisions, pay bills.  I'm involved in Al-Anon, I go to support group meetings, and have light social activities with some of the women.  I can speak at the meetings, share in a group (that took practice)  The support group was a great opportunity to get back in the world, to practice dealing with people again, speaking in the group really helped my self confidence.  I occasionally go into the city, to see theatre, dance, and while I'm not thrilled with the crush of the crowds, I get by. 

 

It would be nice to hear where others are at, at this point in recovery. 

[[je...]]

Hi sue,

Thank you for starting this thread, I think it is much needed for us along this time frame to have some support. As you know I've been dealing with nerve pain, POTS, difficulty swallowing, fatigue, head pressure, and benzo belly-- all these sx  seem to cycle in and out. I dont really get windows either, my sx  just lesson in intensity. I can't wait to hear from others and see how everyone is doing. Thanks again, Jenny

[[Gr...]]

Hi sue,

Thank you for starting this thread, I think it is much needed for us along this time frame to have some support. As you know I've been dealing with nerve pain, POTS, difficulty swallowing, fatigue, head pressure, and benzo belly-- all these sx  seem to cycle in and out. I dont really get windows either, my sx  just lesson in intensity. I can't wait to hear from others and see how everyone is doing. Thanks again, Jenny

 

Jenny, I was doubtful when I started the thread, but after I wrote the first post, I agree, there is a need for this, for those of us in this time frame. 

 

I'm so sorry about the nerve pain.  Is there any research on what causes it, why it happens?  And is there anything you do for relief?  Hot or cool showers?

 

I wanted to ask you about the fatigue, and your energy levels on days when you don't have bad fatigue.  Are you functioning at anything close to pre benzo levels?

[[je...]]

Not much helps the nerve pain, a hot bath is nice but very temporary, I dont really know what causes it but its a horrible, painful sx . I have had good energy levels this past week, but I do get fatigue waves were I'm just wiped out and can't get off the couch. I would say I'm functioning at a pre benzo level- I drive, do all the housework, run errands, cook, grocery shop, take care of my kids etc etc. BUT if I over due it with stressful situations, social stuff, being in the heat too long I will be wiped out and in bed for a few days. I can accomplish a lot, but if I add just 1 extra thing to my plate, I'm done.

[[Gr...]]

Not much helps the nerve pain, a hot bath is nice but very temporary, I dont really know what causes it but its a horrible, painful sx . I have had good energy levels this past week, but I do get fatigue waves were I'm just wiped out and can't get off the couch. I would say I'm functioning at a pre benzo level- I drive, do all the housework, run errands, cook, grocery shop, take care of my kids etc etc. BUT if I over due it with stressful situations, social stuff, being in the heat too long I will be wiped out and in bed for a few days. I can accomplish a lot, but if I add just 1 extra thing to my plate, I'm done.

 

If overdoing it can put you in bed...thing is, you have kids, you really have to function at that level.  the glue on the stool isn't cured yet?  Or do we need to be treating this like adrenal fatigue?  Is the special diet necessary?  The fatigue is my special concern because, like you, I had it in tolerance.  Reality, it took three years to get better back then.  But I was benzo clueless then, I was taking "as needed," until I started taking way higher doses, and at some point I stabilized.  I never got off the pills, so the three years is not reliable.

 

I hope we get some people on here that know more.

[[No...]]

Susan ... thank you for starting this thread ... got to get my morning going ... I will chime in later in the day ...

 

BTW ... time to let the "Nova" tag go ... my name is Michael ...

 

[[He...]]

Good morning Sue, Jenny, and Michael! 

 

I'm glad this thread is going, nice work on getting it started.  For me, the beginning of the 2nd year was really rocky, with big up and down crashing waves.  Months 12 - 14 were pretty unstable, but my windows felt 100%.  At 15 months it started to level off and stay mostly consistent and good.  Today I am 16 months, 5 days and I can still feel some things around the edges, but it's probably only 25% of the time.  It's little things, like yesterday morning I woke and the world seemed somewhat dark and scary for a bit; or my chest tightness will pop up out of nowhere; or I get achy with a chill, almost like I'm spiking a fever but I'm not.  Not too bad, at all, just still uncomfortable at times and I would quite like to be done!   

 

I hope you all have a good day!  I have Awards Chapel this morning so I have to speak in front of a crowd...one of my least favorite things to do. BUT I'm not shaking with anxiety like I used to do, even when I was ON benzos!  I really think we end up so much stronger and healthier after this process!!

 

I never would have made it through if it wasn't for BB and, more specifically, our group.  I thank God that I found this place or I would have thought I was crazy and reinstated.  Now I am stronger than ever.

 

Love to you all!

Amy

 

   

[[No...]]

Good Morning ... new thread ... okay ... been off just over a year ... and I am in the best "space" I have been in for a very, very long time ...

 

For me, I am now seeing "possibility" in my life ... essentially, no longer "lost" in the morass of the drug ... let's call it "freedom" ...

 

Certainly not done with my recovery process yet ... got some ways to go ... don't know how long it will take ... only know that it will be done someday ... and the bottom line, yes, I would like to be finished with this stuff ... and my body/mind isn't ready yet ...

 

I colour myself a "success" ... got off the drug ... weathered acute ... now moving through "re-entry" ...

 

I retired from my job a couple of weeks ago ... more "freedom" ... no children ... no pets ... one wife ... we each have no extended family ... we have a few friends ... my wife has another 20 months to go until she retires ... then, well, we have no plans ... only horizons to dream about ...

 

Side effects ... nothing that seems to last and last and last anymore ... have not experienced anything like a "window" since last July ... weathered an 8 week wave that ended a few days ago ... mostly cycling ... some sleep disruption, anxiety, sweats, head pressure stuff, and lots of what I can only call no stamina ... regularly feel all the air has been let out of my "tires" ...

 

So ... lots more "chop wood, carry water" in the forecast ... some weight to lose ... lots of body "tone" to recover ... getting back in touch with my "rug" stuff ... lots of walking ... and looking for some "community" involvement ... and there is no "rush" here ... one day at a time ...

 

And ... the elephant in the room ... what happened 25 years ago that got me tangled up in this drug process? ... that is a biggie for me ... I now have enough "focus" to begin exploring that "event" ... and not enough "stamina" or "focus" to engage it yet ... so, I have taken it down off the shelf ... it sits over in the corner ... waiting ...

 

So ... that should suffice for an "intro" ... let's all get on with this "re-entry" stuff ...

 

Michael

 

[[Gr...]]

Good morning Sue, Jenny, and Michael! 

 

I'm glad this thread is going, nice work on getting it started. For me, the beginning of the 2nd year was really rocky, with big up and down crashing waves.  Months 12 - 14 were pretty unstable, but my windows felt 100%.  At 15 months it started to level off and stay mostly consistent and good.  Today I am 16 months, 5 days and I can still feel some things around the edges, but it's probably only 25% of the time.  It's little things, like yesterday morning I woke and the world seemed somewhat dark and scary for a bit; or my chest tightness will pop up out of nowhere; or I get achy with a chill, almost like I'm spiking a fever but I'm not.  Not too bad, at all, just still uncomfortable at times and I would quite like to be done!   

 

I hope you all have a good day!  I have Awards Chapel this morning so I have to speak in front of a crowd...one of my least favorite things to do. BUT I'm not shaking with anxiety like I used to do, even when I was ON benzos!  I really think we end up so much stronger and healthier after this process!!

 

I never would have made it through if it wasn't for BB and, more specifically, our group.  I thank God that I found this place or I would have thought I was crazy and reinstated.  Now I am stronger than ever.

 

Love to you all!

Amy

 

 

 

Hi, Amy, thanks for stopping by.  you've been a tremendous inspiration to everyone on 6-12.  Somehow you've managed to maintain your life throughout this process.

 

I'm almost at month 12, but what you describe, big crashing waves, is what it feels like.  And the rest, the mild flu, anxiety around the edges, is my baseline, very manageable, really.

 

I read a pretty good article from a PAW site.  It said waves tend to be hard in 30 day cycles, 30, 60, 90, 120, 180, 1 year, 2 years.  that makes a lot of sense to me.  I remember noting to myself that I seemed to get hit hard consistently a few days before the 1st of the month.  And Jenny said a lot of people get hit hard around the first year anniversary, and so we have.

 

You're so right, Amy, I shudder to think how I would have managed without BB.  Enjoy your day.

 

[[...]]

I have a few months to go, but would like to hear how you are all doing! Can I join in?

 

Dea 

[[No...]]

Dea ... hop right in ... the water is fine ... I sense we are all talking about "post-acute" ... and "re-entry" ... and the "numbers" (months out) are certainly variable ... we are all unique ...

 

[[...]]

Thanks! I truly appreciate it!

 

[[Co...]]

Sue.  .this is great! ...Thank you so much for starting this. I think this is exactly what will get our little band of friends to that month 18 mile marker and well I to re- entry. It is truly what I need to keepmy  hope and motivation going for the next 6 months. As well,  I think it will be needed encouragement for those coming up behind us.  I have found it immensely helpful to follow my ' month ' mates on a day to day basis. That is actually what kept me going .

.......To me,  crossing a mile marker gives me a sense of accomplishment even though my s/x might be screaming. ...I love the sense of SOMETHING ending ...even if it is just the closing of a 3 or 6 month stretch of misery.

........I wrote a summary of where I am at stepping over month 12 over on the 6-12 thread. Essentially it is so much better, but it didn't really start turning a corner until mid month 11....and that is a shaky prediction of anything that will hold but I am hoping...I have a deeper sense of ' healing happening' and am better able to handle waves ...and my waves are shorter. I have a deep intuitive sense that this is now all about re- entry. .and for me I think that will take the entire next 12 months but I move slowly and cautiously.

....My benzo history is described in my intro to the 6-12 month thread ( beginning post) . ...It is pretty much like most of us...had never taken a benzo in my life...had a sudden onset vertigo originating from undiagnosed Menniers Disease ( inner ear disorder)...was told to stay on the drug...which I did because I thought it was a miracle drug until I entered tolerance ...in about 6-8 short weeks...my dose was increased and my life took a sharp turn into hell for the next 2 years. I tapered for 6 months from 1 mg ( after c/t 1 mg because I didn't know not to)... ....found BBs and that is what is getting me through. I was very close to reinstating at month 6...it is only because of BBs that I didn't. I have met wonderful friends here and am so thankful for them every day...

.........Thanks Sue....I am excited to see how we all progress through this next year...I was hoping someone would start s 12-18 month group....cooperten

[[Sk...]]

THanks for the invitation !!

 

I love that I have yet another place to rant and rave in !

 

Today, I wll do little of both, I feel too sick for such fancy things. I am vibrating so badly and  my palps are in big time.

 

I had two lessons just now, one was a 90 minute thing that agitates my alot. Switching three languages is not simple on the best of days, in wd takes strong willpower. It took wd, to learn that I have an incredibly strong willpower and I am beginning to think this is not the only "gift" wd has given me and that you and I will discover many other "gifts" in the future.

Before wd, I would never have thought I had any strength of will, go figure.

 

Bye, this is too much for me today, my heart is really too much hope it gets better.

 

hugs!

[[Gr...]]

I have a few months to go, but would like to hear how you are all doing! Can I join in?

 

Dea 

 

Hello, Dea.  Of course you can, we'd love to have you.  I wanted to try something more along the lines of not only how we feel, our symptoms, but where we're at in terms of recovery, what we're able to do, what's coming back --  I thought I was in that place, and now I'm getting crushed by the 12-14 month waves, lol.  Just when you think you have a handle on this crap 

 

Welcome, threads have a way of being whatever people need and want them to be.

[[Gr...]]

Good Morning ... new thread ... okay ... been off just over a year ... and I am in the best "space" I have been in for a very, very long time ...

 

For me, I am now seeing "possibility" in my life ... essentially, no longer "lost" in the morass of the drug ... let's call it "freedom" ...

 

Certainly not done with my recovery process yet ... got some ways to go ... don't know how long it will take ... only know that it will be done someday ... and the bottom line, yes, I would like to be finished with this stuff ... and my body/mind isn't ready yet ...

 

I colour myself a "success" ... got off the drug ... weathered acute ... now moving through "re-entry" ...

 

I retired from my job a couple of weeks ago ... more "freedom" ... no children ... no pets ... one wife ... we each have no extended family ... we have a few friends ... my wife has another 20 months to go until she retires ... then, well, we have no plans ... only horizons to dream about ...

 

Side effects ... nothing that seems to last and last and last anymore ... have not experienced anything like a "window" since last July ... weathered an 8 week wave that ended a few days ago ... mostly cycling ... some sleep disruption, anxiety, sweats, head pressure stuff, and lots of what I can only call no stamina ... regularly feel all the air has been let out of my "tires" ...

 

So ... lots more "chop wood, carry water" in the forecast ... some weight to lose ... lots of body "tone" to recover ... getting back in touch with my "rug" stuff ... lots of walking ... and looking for some "community" involvement ... and there is no "rush" here ... one day at a time ...

 

And ... the elephant in the room ... what happened 25 years ago that got me tangled up in this drug process? ... that is a biggie for me ... I now have enough "focus" to begin exploring that "event" ... and not enough "stamina" or "focus" to engage it yet ... so, I have taken it down off the shelf ... it sits over in the corner ... waiting ...

 

So ... that should suffice for an "intro" ... let's all get on with this "re-entry" stuff ...

 

Michael

 

Michael, the elephant in the room, I have a herd of them, and not so much in the way of stamina, either.  But every day my head clears, that's how I know recovery, healing, is happening, and how I perceive the memories, "what happened," seems like an ever evolving story.  On my famous bike rides, my intrusive thoughts have their way with me, but I've noticed of late the threads and loops are more positive, and I'm better able to make sense of the story (Although the loops and repetition is intense and leaves me exhausted)

 

I love that you're seeing the possibilities, because that means when I get through this phase that's what I will be doing.  Winter is coming.  It looks like we'll have plenty of time to grow.  Although, I really need to lose weight, so I hope I only grow spiritually

[[Co...]]

Green,  I think your image for the thread is exactly where many of us are....doing more and seeing progress...venturing into re- entry but still experiencing waves....I had my first 48 hour almost effortless mind window ( probably 90-100% ) the last 2 days. I went out and did a lot with my daughter...2 months ago I couldn't go out for an entire day even while in a window...it would trigger s/x and my window would dim. I couldn't handle stress...I simply felt better but was not that much more functional. Yesterday while out with my daughter I managed a stressful phone purchase ( man, it was like buying a new car) and did have some momentary s/x but they disappeared when the stress let up. Much like Life describes his ability to be happy again in spite of stress. I went on to a very fun lunch and afternoon with my daughter. I could not have done that even 3 weeks ago. ..Last week I went back to the classroom to volunteer..some s/x in the beginning but they all went away within an hour. I haven't been able to be in the classroom for the last 9 months. ...My week had an overall baseline of 85-90%.

....Today my window is closing but I am still more functional then in the past 6 months. My baseline has improved gradually but consistently. After a wave I return to the improved baseline. I think it slipped once in month 11 during a bad benzo flu wave.

.....I love this thread Sue....and you are going yo roll out of your wave ...I am so encouraged that all of us are crossing the year one or almost there...We arr going to be seeing great things on this thread. .....cooper

[[Co...]]

Michael...that is it....seeing ...and for me,  feeling the possibility...even though we are not all the way there yet...so glad to see you on this thread....cooper

[[No...]]

Coop ... yep ... will bounce between the two threads for a while ... I suspect we will have a lot to say about "re-entry" ... and I believe the "stories" will "deepen" as we express how we are each moving into a new chapter of our lives ...

 

This will be where is gets really fascinating ... we have been in kind of a "group mind" for a while ... it is going to be really cool watching all these butterflies emerging from their "chrysalis" ...

 

There will certainly still be some rough times ahead for each of us ... goes with the territory ... and ... there will be a few "storms" this winter ... and ... this will be a healing winter for all of us ... nobody gets left behind ...

 

Have a good evening ...

 

Michael

[[Gr...]]

THanks for the invitation !!

 

I love that I have yet another place to rant and rave in !

 

Today, I wll do little of both, I feel too sick for such fancy things. I am vibrating so badly and  my palps are in big time.

 

I had two lessons just now, one was a 90 minute thing that agitates my alot. Switching three languages is not simple on the best of days, in wd takes strong willpower. It took wd, to learn that I have an incredibly strong willpower and I am beginning to think this is not the only "gift" wd has given me and that you and I will discover many other "gifts" in the future.

Before wd, I would never have thought I had any strength of will, go figure.

 

Bye, this is too much for me today, my heart is really too much hope it gets better.

 

hugs!

 

Oh, Sky, my friend, I'm a-vibrating with ya on the other side of the Atlantic.  The last two days I've been smashed and battered about.  Worst thing, though, is the emotional lability, I seem to have lost my mind on top of the symptoms, laughing and crying inappropriately for no apparent reason.  I've gone off the rails emotionally, I've got to get a handle. 

 

I always get slightly outraged when hit with one of the tsunami waves so far out -- like, why wasn't I told about this?  Apparently this is the 12-14 month wave.  Apparently there are waves for all the months, milestone waves, annual waves, and waves for all effing seasons!

 

I give you a lot of credit, you can lose your mind in three languages.  No, really, it's amazing, your lessons.  It sounds like it's growing, taking off.  You're amazing.  And all without windows!

 

See you tomorrow.

 

 

 

[[Gr...]]

Green,  I think your image for the thread is exactly where many of us are....doing more and seeing progress...venturing into re- entry but still experiencing waves....I had my first 48 hour almost effortless mind window ( probably 90-100% ) the last 2 days. I went out and did a lot with my daughter...2 months ago I couldn't go out for an entire day even while in a window...it would trigger s/x and my window would dim. I couldn't handle stress...I simply felt better but was not that much more functional. Yesterday while out with my daughter I managed a stressful phone purchase ( man, it was like buying a new car) and did have some momentary s/x but they disappeared when the stress let up. Much like Life describes his ability to be happy again in spite of stress. I went on to a very fun lunch and afternoon with my daughter. I could not have done that even 3 weeks ago. ..Last week I went back to the classroom to volunteer..some s/x in the beginning but they all went away within an hour. I haven't been able to be in the classroom for the last 9 months. ...My week had an overall baseline of 85-90%.

....Today my window is closing but I am still more functional then in the past 6 months. My baseline has improved gradually but consistently. After a wave I return to the improved baseline. I think it slipped once in month 11 during a bad benzo flu wave.

.....I love this thread Sue....and you are going yo roll out of your wave ...I am so encouraged that all of us are crossing the year one or almost there...We arr going to be seeing great things on this thread. .....cooper

 

Coop, you've been such a strong support for everyone, thank you so much for that.  You sound amazing, really strong, not afraid of anything. 

 

I love what you said about not only feeling better, but being able to do things

without getting tired and losing the window.  And dealing with the fast talking twenty-something smart phone girl.  Coop, that's getting your life back, getting you back.

 

I am very hopeful, too.  Even with this hard, unexpected wave, as rattled as I got today, I maintained a lot of my gains.  I pulled myself together later in the day and accomplished a few things, less than I would have liked, but enough so I don't feel like I'm at square one.  I don't think I could have done that without the support of you and Jenny and Michael, and everybody here. 

 

Here's to reentry

[[pe...]]

Hi Buddies,

I'm not ready to graduate yet, but just wanted to stop over and say I love you all.

 

[[Co...]]

Green...you are going to come out of this wave. It has only been in the last 7-12 days that I have had times of " seeing the possibility " ...and sometimes feeling the possibilities. ...and today my window was mostly back to baseline...although a decent baseline and I was tired again. I think it is still very up and down and all around but a much gentler ride. I just know the minute I commit that to written word I will be thrown into a wave.. do knock on wood. ...I am definitely not strong...I am just trying to go with whatever shows up on any given day and on some lucky days its mostly good lately. I am able to push myself just a little and venture a few stabs at risk taking but retreat quickly if things start going funky. I think that 2 year time frame for 100% healing is what I am going for but I expect things yo be much better still by mo th 14-16....crossing my fingers.

.....its ok to rest Green...if you put in some couch  time it doesn't  mean. you wont ever get off the couch abasing. Although I have to confess my own aversion to my bed...I have spent so much time in it over the past year I don't want to take rests in the day a y more..but I have so many days ( most) in which I need to rest.

.....I am thinking of you Green and sending you wishes for some sunbreaks tomorrow...coop

[[Co...]]

Peace...you get grandfathered in ...it wouldn't br " Our Gang " without you. ....coop

[[Gr...]]

Hi Buddies,

I'm not ready to graduate yet, but just wanted to stop over and say I love you all.

 

 

Peace, you get an honorary degree.  You re-entered last September.  You went, you saw, you conquered.  And lived to tell about it.  We love you, too!