12-18 month support

[[Mi...]]

Hi guys, haven't posted in a while.  My 12 month mark came and went, I thought about memorializing it here but didn't really feel like it if you know what I mean.  It's been 13+ months and I'm still hanging in, fighting the good fight. 

 

Read a bunch of older posts and just wanted to say a couple things.  Reassurance to a few folks I guess....

 

Yes my neck and shoulders have been killing me again for the last few months.  I know SX are responsible for an increase in my chronic pain. 

 

Yes I still have days where I'm wicked itchy...and it's not topical.  The itching comes from within the muscles and no matter how much you scratch it doesn't help.  Right now my right bicep is burning and itching.  Yesterday I would get random feelings of ice water trickling down my wrists and ankles.  This morning my eyes were watering out of the outside corners and making the skin feel raw and burnt.  (this is one of my least favorite on and off symptoms since it actually hurts like a sunburn on the side of my eyes)  What else, let's see....oh yeah, a burnt feeling in my mouth, like I scalded it on hot soup.  Um....breathing through my mouth or nose burns my sinus's like I have a sinus infection, or like the air is too cold or dry......just more BS....goes away for months, might come back for 2 hours.  Just more goofy crap that I tell NOBODY about.  (a great quote from someone (Michael?) like 6 pages ago..." words can be quite elusive describing these adventures"  <------  LOVE IT!!!!  : )

 

To answer someone else's concerns, DEREALIZATION.....yes I still get this during waves.  Not nearly as bad as the first 6 months. Feeling that detached used to really freak me out, like somebody drugged me and I was wasted against my will.  The hardest thing about dealing with DR is when it happens in a social setting.  Playing it off like everything is fine is one of the hardest things I've ever had to get good at.  Being that spaced out plus nervous at the same time is the worst feeling WD has to offer in my opinion.

 

So anyway, I am so due for a break.  In the last 30 days I haven't had any windows that lasted a full day.  I just know I'm going to hit a new baseline soon though, couldn't be happier about that. 

 

Someone else mentioned something about "I can make plans without dread or fear"  THAT IS BIGTIME.  I love when I feel that way, and I hear you.  That is great!

 

This post is all over the place but I don't care, I don't think you guys mind either.  I just wanted to check in, let you know I still lurk from time to time, and address some older posts I read tonight.

 

 

 

[[je...]]

Hi Mike,

I get the itching too. Its so intense and like you said its not topical. I think it may have more to do with the nerves in my case. I've just started getting some mouth sores, they come and go like every sx . anyone else get this?

[[Mi...]]

Oh yes you're right, definitely has to do with nerves.  The CNS controls so many things it's not even funny.  Sometimes I think of my CNS as a demented carnival prize wheel; a couple times a day someone "steps right up" and delegates what weird and wacky sensations go through my body.  I will eventually burn that carnival wheel and smile down upon it as it smolders.  *inaudible evil laugh*   

[[He...]]

Oh yes you're right, definitely has to do with nerves.  The CNS controls so many things it's not even funny.  Sometimes I think of my CNS as a demented carnival prize wheel; a couple times a day someone "steps right up" and delegates what weird and wacky sensations go through my body.  I will eventually burn that carnival wheel and smile down upon it as it smolders.  *inaudible evil laugh*   

 

Yes, this.  :thumbsup:

[[Gr...]]

Hi, you guys.

 

I feel bad, I started this thread and then disappeared.  I had that terrible one year wave.  Honestly, all chest stuff, full blown panic attack, it just went on and on, and then I crashed, probably from exhaustion, all the fatigue and depression.  If you guys hadn't posted on this, I don't know what I would have done.  I read everything up to here, someone said, Sky, I think, this is as hard as it's been since acute.  I have to agree. 

 

It's so weird, I feel awful, have all these worries about protracted, and at the same time my mind is a clear as it's been in a long, long time, more the old, real me.  I'm struggling with that rigor mortis kind of pain in the neck, back, all over, I think it's sleep related, I have bad insomnia, think I'd be doing a lot better if I could resolve the sleep issues, but my thinking is fairly clear, and that's a gift.

 

So I think I've adjusted to the new normal, long wave 12-14 or 15 months, with some windows?  Is that it?  Okay. 

 

 

 

 

[[Fi...]]

Susan--sorry to hear you've had it so bad recently.  I do find it comforting though, that so many people seem to get hit with a bad wave at this point, hopefully right before they see some major healing.  Knowing other people are going through it helps fight off the mental harpies saying, "There must be something else wrong with you, otherwise you'd be well by now."  If this is par for the course, okay.

 

I'm just coming up on 15 months off Xanax and the past month has been different from anything I've experienced so far.  Before, my waves and windows were more dramatic.  Last spring I started logging my days as either good, bad, or mixed.  My husband and therapist encouraged me to do this so that I would see some quantifiable record of my progress.  Only problem was, this method showed no improvement at all!  For six months running I'd have 50% good days, 25% mixed and 25%.  It seemed like surely I must be getting better, so the only thing I could think was that maybe my good days were actually better and my bad days weren't so bad.

 

Then in mid-October I hit an unprecedented string of 13 bad days in a row.  I'd never had that since I started charting it this way.  Finally, I broke out of it, but only for one day, and then went back to nine bad days again.  Now I seem to just be trucking along with one mixed day after another.  I never feel good but I'm grateful that I'm not falling into the pit of despair.  I'm having a lot of the upper back muscle aches people talk about and a lot of fatigue, but psychologically, things look better.  I'm trying to just hang in there and wait this out. 

 

Susan you spoke of early retirement.  I'm 63.  Sometimes I worry that it's taking my brain longer to heal because I'm older.  I'm wondering if I'm going to look back on NOW and be glad I didn't know how much longer healing was going to require. 

[[Sk...]]

Finally, I understand this fear of yours but just ignore it, it's simply not true.

 

I have read about younger buddies, that are in hell and don't seem to be having it any easier and then, older buddies who started tapering at 70 and now are healed.

 

Research this if it makes you feel better, you are already having a bad time without having to think that age may be a problem.

 

Take care, sorry everybody is having such a hard time.

 

 

[[No...]]

WORD FOR THE DAY

 

Friday, Nov. 21

 

I would love to live like a river flows, carried by the surprise of its own unfolding.

 

John O'Donohue

 

"Fluent" from Conamara Blues

 

[[No...]]

Good Morning ... got seven hours sleep and was rewarded with a kinky shoulder and neck ... oh well ... it's Friday ... and only six more Mondays this year ...

 

Leg is mending fine ... even tied my own shoes this morning ... got some revving head and eye stuff going on ... nothing new ... it will get bored and move on ...

 

Age ... I don't see where it really matters much regarding this kind of recovery ...

 

FinallyJoining63 ... nice to see a new face ... welcome ...

 

Have a good Friday, Folks ...

 

[[ga...]]

Green...sorry to hear you have been struggling.  These periods still occur for many of us at this stage.  I notice many have body symptoms.  For me at the 17 month point it is the hit and miss insomnia.  I am so discouraged by the 3 a.m wakeups and not being able to fall back asleep.  For me, 5 hours gets me through the day without much problem.  Any less it is a struggle. I am now on day three of les than 3 hours per night.  Still working long days and just muddling through them thankfully.  I still am hopeful that they will get better.  My hope was when the heart issue was behind me I would relax a bit but I still find my mind kicks into gear in the early morning.  Oh well....just have to put up with it for now and hope for the best.

 

 

[[Fi...]]

Hey guys, I'm waking up feeling pretty good this morning and it helped to realize that--hey!--I have Benzobuddies!  I've been so isolated.  Great to check out all the new posts.  Thanks for saying that age isn't an issue and NovaScotia, I love your saying for the day about flowing like a river.  That is so much the way I've been trying to live and it's really a new concept for me.  Instead of making plans, to just get up every day with a blank slate and see what happens.  I like the river metaphor and actually used it in my best known novel, the idea that while we westerners tend to think of life as a road, choosing which fork to take and all, Asians see life as more of a river, where you're carried along, and the best you can do is steer!  Everybody remember, whatever happens today, good or bad, as long as we stay the course and don't reinstate, we are one day closer to being well, one day further down the river.

[[Gr...]]

Green...sorry to hear you have been struggling.  These periods still occur for many of us at this stage.  I notice many have body symptoms.  For me at the 17 month point it is the hit and miss insomnia.  I am so discouraged by the 3 a.m wakeups and not being able to fall back asleep.  For me, 5 hours gets me through the day without much problem.  Any less it is a struggle. I am now on day three of les than 3 hours per night.  Still working long days and just muddling through them thankfully.  I still am hopeful that they will get better.  My hope was when the heart issue was behind me I would relax a bit but I still find my mind kicks into gear in the early morning.  Oh well....just have to put up with it for now and hope for the best.

 

Gart, I understand completely where you're at.  I struggle with sleep, have all along, but sometimes it gets worse and when that happens I lose my mind, I become emotionally unstable, which is normal, even if you're not in withdrawal.

 

  I can hear you're not doing as well as when your sleep is good.  I was combing through the insomnia thread, and found out my sleep pattern has a name, lol, I forgot it.  But I fall asleep between 4 and 6 a.m., no matter what time I go to bed, and if I'm lucky sleep until 10, 11, 12 p.m., depending on how lucky I am.  And then it gets more complicated with refreshing sleep vs. unrefreshing.  If I didn't have the sleep issue, I'd be doing way better.  But I don't think there's anything that can be done, except wait for it to resolve. 

[[Gr...]]

Susan--sorry to hear you've had it so bad recently.  I do find it comforting though, that so many people seem to get hit with a bad wave at this point, hopefully right before they see some major healing.  Knowing other people are going through it helps fight off the mental harpies saying, "There must be something else wrong with you, otherwise you'd be well by now."  If this is par for the course, okay.

 

I'm just coming up on 15 months off Xanax and the past month has been different from anything I've experienced so far.  Before, my waves and windows were more dramatic.  Last spring I started logging my days as either good, bad, or mixed.  My husband and therapist encouraged me to do this so that I would see some quantifiable record of my progress.  Only problem was, this method showed no improvement at all!  For six months running I'd have 50% good days, 25% mixed and 25%.  It seemed like surely I must be getting better, so the only thing I could think was that maybe my good days were actually better and my bad days weren't so bad.

 

Then in mid-October I hit an unprecedented string of 13 bad days in a row.  I'd never had that since I started charting it this way.  Finally, I broke out of it, but only for one day, and then went back to nine bad days again.  Now I seem to just be trucking along with one mixed day after another.  I never feel good but I'm grateful that I'm not falling into the pit of despair.  I'm having a lot of the upper back muscle aches people talk about and a lot of fatigue, but psychologically, things look better.  I'm trying to just hang in there and wait this out. 

 

Susan you spoke of early retirement.  I'm 63.  Sometimes I worry that it's taking my brain longer to heal because I'm older.  I'm wondering if I'm going to look back on NOW and be glad I didn't know how much longer healing was going to require. 

 

Finally, yes, as Sky had earlier noted, the wave-window game has changed.  That was part of my struggle, I was having a hard time acclimating to the new "normal," if there's anything about withdrawal that remotely resembles normal. 

 

The stiff muscles, which can be severe, scary if you don't know what it is and just wait it out, are new for me in this withdrawal.  I had it bad in tolerance in 2004, so I knew what it was, still new severe symptoms are scary.  And when I get bad fatigue, it scares the hell out of me.  Not only that, it saps all the energy, so I can't do much, and then I start feeling "sick" and get depressed.  And After a year, I'm thinking I should be getting better, not worse. 

 

But we are getting better.  I was very very positive before this 12 month anniversary, and then that wave knocked me upside my head.  Now I'm finding my balance a little better, getting used to the new patterns, and reassuring myself that others have exactly the same thing, as you noted, so it must be okay, or at least I'm as reassured as I'm going to be.

 

Being older.  I've been very worried about that myself, that I'm too old to weather this, recover from it, come back.  I reached out to Eastcoast62, she's wonderful, a moderator here, and she says a lot of us older folks handle withdrawal better than the younger ones, we heal just fine.  She's in her sixties, has healed, and she kindly took the time to reassure me that I will, too.

 

So this thread is good for those of us after the one year mark.  Our waves are different, our symptoms are a little different.  And for me, I'm really trying to get to the next level in setting more goals for myself, in spite of the symptoms.  I babied myself throughout this whole first year, and now it's time to do a little more.  I'm not quite sure what more is though, more of what?  I'll figure it out, lol.

 

P.S.  You're right, I think tracking good days and bad days is going to make you crazy.  and what about days that flip back and forth all day long?  how do we rate them?

[[Gr...]]

Good Morning ... got seven hours sleep and was rewarded with a kinky shoulder and neck ... oh well ... it's Friday ... and only six more Mondays this year ...

 

Leg is mending fine ... even tied my own shoes this morning ... got some revving head and eye stuff going on ... nothing new ... it will get bored and move on ...

 

Age ... I don't see where it really matters much regarding this kind of recovery ...

 

FinallyJoining63 ... nice to see a new face ... welcome ...

 

Have a good Friday, Folks ...

 

 

Nova, you slept 7 hours?  I'm Green with envy, lol.

 

On the age.  Read my reply to Finally.  I just had this conversation with Eastcoast62.  She had a lot to say on the subject.  She thinks we do better, for a variety of reasons, which I can't remember right now, but I'm reassured.

[[Sk...]]

About keeping a track of our days, I think that it should be kept simple and only to find patterns when something goes wrong.

 

I divide each day in 3 parts, morning, afternoon evening, and then next to it I put  ,  and more often lately  .

 

So when I go looking for a general picture, all I have to do is see how many happy faces there are.  Usually I also jot down facts like what I ate, it helped enormously in the beginning. Or my supplements.

FYI I do have smiley faces periods. And it is incredibly useful after the facts as long as you don't get obsessive, which is hard thesed days.

FOr instance, I had a two day wave, and then I checked my log and found out I was getting many two day waves on days when certain things happened .

 

Does it help ? SOmetimes but mostly, it helps me feel slightly efficient. We are so helpless, if jotting these things down every day for a couple of minutes helps me feel accomplished, good for me.

 

Sending healing waves to everybody.

[[Fi...]]

Thanks for the responses, especially about age!  I do think the younger ones haven't necessarily lived through as much as we have.  At this point in my life, I can better grasp the temporary nature of even the worst times.

 

My charting of good/bad/medium days was actually a simplification of my tracking.  Gave up trying to note various symptoms.

 

On fatigue--oh, yeah.  And that's been a symptom more lately in my fifteenth month than I ever had it before.  Drained is the word that comes to mind.  I just lie there thinking surely I've contracted chronic fatigue syndrome or something and when the voice in my head says, "See?  You can NEVER get well," that's when I slide mentally.  I don't think my mental crashes have been as bad as they were a year ago and they don't seem to last as long.

 

Greenice--I'm sort of the opposite of you in that I'm babying myself now more in the second year.  In the first year I didn't even know what was going on so just kept trying to push through my life.  Unfortunately what was on my plate was the fixing up and putting on the market of three houses.  I was an exhausted zombie, painting, cleaning etc.  During that time I was still taking the Xanax thinking it was helping me.  After all, aren't people sometimes prescribed Benzos to help with opioid withdrawal?  I really thought when we'd pushed through and sold the properties and the stress was over, I'd be well.  I had just finished up the third house when I CT the Xanax.  I thought I had hit on the reason I wasn't better and expected to be well quickly.  Ha!  I had no idea that my problems had so much to do with Xanax or how long healing would take.  If I'd known how I was going to be feeling in opioid withdrawal, I might have postponed these real estate projects, but I just kept thinking surely I'd be better any day.

 

This past summer I had to undertake helping my mom move and put her house on the market. More stress.  It was after we got her moved I slid into this long window of fatigue and one bad day after another.  I kind of wonder if it's my body saying, "So take a rest, already!"

 

My to-do list now is very unambitious.  I'm still trying to sort out all the family memorabilia I had to bring home from my mom's house.  I try to just make a couple of decisions each day if I'm up to it.  This is really not a good project for somebody in benzo withdrawal as it's so fraught with emotion!  But I'm slowly making progress.  My sweet husband has finally learned the lingo and knows what to say to me, constantly reassures me that I'm not "doing nothing." I'm "healing."

 

Hey, it's so helpful to know others out there are going through this same thing!  All this time I've been reading the boards, but without actually joining, you can't tell who's who and what their story is so it's not as useful.

 

Hang in there, everybody!

[[No...]]

Sitting here tonight ... just hanging on ... got into a revving cycle about three hours ago and it is not letting up ... been over this "ground" so many times ...

 

Makes me wonder why this stuff keeps repeating itself over and over again ... a seemingly endless loop ... waxing and waning ... day after day ...

 

And there are no alternatives ... the only way out is just to keep going ...

 

Just have to stay up until it releases ... when I try to sleep the vibrations hit and try to "disconnect" me ...

 

[[...]]

Hey Nova,

sorry to hear it's turned difficult for you again. Ive had a continuous cycle of mainly depression but lots of other new and old stuff chiming in. I was sleeping fairly well for weeks 5-7 hrs and lately every two nights I get amped up and can't sleep but 2-3hours making the next morn and day a nightmare.

 

I haven't had a true window (2.5 days)since sept. I get tolerable and fair hours ocationaly but less than before.

 

Yup dealing with this day after day week after week etc..  Not knowing the end date makes the process unbearable. Hope things calm down for you.

[[No...]]

Jrod ... just hanging out tonight ... and I know the sleep issue is really tough for folks ... I am fortunate in that I do not have to fit into a "schedule" during the day ... so I can nap if I need to ... if the vibrations don't nab me while falling asleep ...

 

And we just keep going on ... hope you have a quiet evening ...

 

 

[[Gr...]]

Sitting here tonight ... just hanging on ... got into a revving cycle about three hours ago and it is not letting up ... been over this "ground" so many times ...

 

Makes me wonder why this stuff keeps repeating itself over and over again ... a seemingly endless loop ... waxing and waning ... day after day ...

 

And there are no alternatives ... the only way out is just to keep going ...

 

Just have to stay up until it releases ... when I try to sleep the vibrations hit and try to "disconnect" me ...

 

 

Nova, I'm getting hit heavy, too, you're not alone buddy.  I'm not so out of control, calmer, but that doesn't make the symptoms disappear.  I'm trying to get centered, this may be how it goes for a while.  waiting for a window -- I'll even take a wandow.

 

Also, from your prior post, the crick in the neck and back, that's what I thought it was at first.  For me it morphed into rigor mortis muscles, body wide. 

This whole package happened to me in 2004 in tolerance, bad, unrefreshing sleep, the rigor mortis muscles, headaches, and emotionally all over the place, I swear it's a package, these sx come together.  And while any one is not impossible, the whole bunch of them, together with the depression, it packs a punch, it's distracting, hard to do anything.  So it's back to distraction.

 

I'm ranting again, sorry.  What else do you have going on?  Are you sleeping?

[[Gr...]]

Nova, I just re-read your post.  I know what your sx are.  I'm there with you, the revving.  it's weird, though, how we can all shift into year 2 sx  with synchronicity.  Yeah, this is very, very hard.  I sure do hope we get some breaks

[[No...]]

Green ... just hanging out tonight for a while ... listening to an audiobook ... the tv made me dizzy trying to watch it ... and the jigsaw puzzle was out of focus ...

 

Guess I have the full monty tonight ... not crazy-making ... just damn irritating ...

 

Been having muscle spasms and jolts all day ... mostly in the back and neck and arms ... I guess that is pretty much all over ... funny, though, no anxiety ...

 

Just trying to stay centered and not fall into the deep end ...

 

[[Gr...]]

Thanks for the responses, especially about age!  I do think the younger ones haven't necessarily lived through as much as we have.  At this point in my life, I can better grasp the temporary nature of even the worst times.

 

My charting of good/bad/medium days was actually a simplification of my tracking.  Gave up trying to note various symptoms.

 

On fatigue--oh, yeah.  And that's been a symptom more lately in my fifteenth month than I ever had it before.  Drained is the word that comes to mind.  I just lie there thinking surely I've contracted chronic fatigue syndrome or something and when the voice in my head says, "See?  You can NEVER get well," that's when I slide mentally.  I don't think my mental crashes have been as bad as they were a year ago and they don't seem to last as long.

 

Greenice--I'm sort of the opposite of you in that I'm babying myself now more in the second year.  In the first year I didn't even know what was going on so just kept trying to push through my life.  Unfortunately what was on my plate was the fixing up and putting on the market of three houses.  I was an exhausted zombie, painting, cleaning etc.  During that time I was still taking the Xanax thinking it was helping me.  After all, aren't people sometimes prescribed Benzos to help with opioid withdrawal?  I really thought when we'd pushed through and sold the properties and the stress was over, I'd be well.  I had just finished up the third house when I CT the Xanax.  I thought I had hit on the reason I wasn't better and expected to be well quickly.  Ha!  I had no idea that my problems had so much to do with Xanax or how long healing would take.  If I'd known how I was going to be feeling in opioid withdrawal, I might have postponed these real estate projects, but I just kept thinking surely I'd be better any day.

 

This past summer I had to undertake helping my mom move and put her house on the market. More stress.  It was after we got her moved I slid into this long window of fatigue and one bad day after another.  I kind of wonder if it's my body saying, "So take a rest, already!"

 

My to-do list now is very unambitious.  I'm still trying to sort out all the family memorabilia I had to bring home from my mom's house.  I try to just make a couple of decisions each day if I'm up to it.  This is really not a good project for somebody in benzo withdrawal as it's so fraught with emotion!  But I'm slowly making progress.  My sweet husband has finally learned the lingo and knows what to say to me, constantly reassures me that I'm not "doing nothing." I'm "healing."

 

Hey, it's so helpful to know others out there are going through this same thing!  All this time I've been reading the boards, but without actually joining, you can't tell who's who and what their story is so it's not as useful.

 

Hang in there, everybody!

 

Finally,

 

The fatigue we feel is terrifying.  I had it pretty bad in 2004 while in tolerance.  Sadly, I didn't know what it was and ran all over Manhattan trying to find a doctor who could figure it out.  Only to come to realize ten years later it's a BZD w/d symptom.

 

The fatigue is scary, it impacts activities of daily living.  It's a relief when I hear other ppl who have it, that reassures me it's a symptom, which means it will go away.  I thought it felt like my life force, my battery, was draining of energy.  Just couldn't go, move.  But we get days where we're pretty okay, so I doubt it's a real adrenal or chronic fatigue. 

 

I don't know.    I re-read some success stories and the fatigue is mentioned and it goes away.  I just don't know how long it's going to last.  All of my symptoms seem to have changed at the one year mark.  I'm trying to adjust.

 

Glad your R.E. projects are taken care of.  Opioids, as you probably know, have their own challenges, coming off.  You took so little Xanax.  Are you sure it's not the opioids you're withdrawing from?

[[pe...]]

I'm here to join the party with vibrating, eye twitching, lower back pain and some low key paranoid thinking which is clearly a relative to my regular anxiety. Damn!

 

But like you all, I know the drill and I'm grateful not be battling a deep depression on top of it all. Fingers crossed.

 

With you all,

Peace2

[[mr...]]

Heyo gang,

 

Yesterday and today saw some retouching of a little panic/fear/anxiety, the "unholy trinity" lol. But I just got my "monthly visitor" today, which is common for me to have this sort of 'uptick' right before the ole monthly friend arrives whilst in withdrawal. No concerns here, really. A little annoyed with the dumb thoughts & "withdrawal threats" that it tries to kid me with, but I know better. We all know better. Nova, this afternoon I felt my 'withdrawal self' trying to "undertow" the Real Me for a while. My "morning dread" time is generalky between 3-6pm, and not mornings at all. I think this must be when I have my "second wind" of cortisol or something Anyways, near that time of the month I just remind myself to be gentle in this timeframe. Seems to be quite helpful. Boy, I tell you what...I declare that there will be a day -- soon here, within the next year or so -- where panic will no longer even be a thought. Anxiety will be dead. And fear? Phuh. Laughable at how pathetic its voice sounds to us. Its coming, my friend. We just stay the course.

 

Alrighty, time for Mr and me to enjoy some no-sugar-added ice cream, snuggle up on the couch, and watch us some Gilmore Girls (thank you, Netflix!!!)! Enjoy your evening, folks. And thank you for sharing a part of my 8th day benzo-free with me

 

Mrs.