12-18 month support

[[Co...]]

Beulah...I so get it. When we can not concept heart to heart with the ones we love it is just crushing. I am so glad your family supported you through it . It is so great to start hearing these kinds of posts from BBs who I met in acute. ..I am far from where you are today, but you and HH turned around right around month 20. That had given me the motivation I need for a double down on committing to keep going until month 24. ....I am just getting ready to step into month 17 ( April 3) and have been hit hard the last 2 weeks of this month...seems more like months, but it isnt.

  .. ..So glad to hear from you ...really gave me hope ....so happy that you are enjoying your family again.  .coop

[[be...]]

Coop- Just to let you know months 17 and 18 were hard on me. I felt changes coming on so quickly that everything was so overwhelming. I did a lot of re-entering and waves changing all over the map....I think it paved the way for the healing that's taking place.

Suffering = healing....I don't know, but I'll go with it.

You're getting there my friend, keep up the good work.

[[Co...]]

Thanks Beulah...this has been a hard one.. like early acute. So much anxiety and 2 days with 'call 911' panics and health fear from hell.  after a 5 day window at the beginning of the month. I thought about reinstatement but knew that was just a dive deeper into hell.

.....Today I think it is lifting. I have had some hours today of very quiet sx.  Holding my breath but your post and HH's and Sasquatch's have really given me the push to keep the faith in the process. ...seriously...your post was huge ...

.....Some days I still can't believe this.

. Thanks again Beulah.  I know you are just going to continue ue with better and better days....and boy have you earned them.....coop

[[je...]]

HH and Beulah thank you for your encouraging posts!

Coop, my anxiety is back after a few day break. I hope we both get a break soon. Thinking of you 

[[Co...]]

Jenny, thanks for posting about your anxiety...so sorry yours came back too, but it helps to know that once again it's just w/d. I had about a 4 hour sunbreak but it's starting to close.  Hoping for the best for both of us.

....Wasn't it great to read Beulah and HH and Sasquatch...they are all past 18 months and feeling a turn around...so hopeful.

.......Jenny, I hope you get out from under this one...take care...coop

 

[[dr...]]

Just pooping in to say hi....those recent good posts are so encouraging. I read life's at least five times a day.  I had a quiet weekend w the headache on Friday and wonkiness on Saturday.  Did well just acknowledging my symptoms are all just withdrawal including the migraines and they will all leave or reduce in intensity as time goes by.  No panics which was good. Morning palps and crazy anxiety is my norm again but that will fade too.  Looking forward to it.  Goodnight my friends

[[Co...]]

Great to see you Drew...Glad to hear you are holding your own....I have also been trying to keep my zen in the midst of sx....sometimes I can really float above it.  Other times not so much ....have a peaceful night....coop

[[Co...]]

A note of envouragement...I just re-read Cool Canadian's success story.....He started seriously feeling better at month 18....Wishing everyone a restful night.  coop

[[No...]]

Good Morning ... spent yesterday in sort of la-la land ... neither here nor there ... just floating around ...

 

Its Monday ... another weekend in the books ...

 

Have a good day, Folks ...

[[No...]]

Hi ... well ... after another snowstorm on the weekend ... went out this morning ... went down to a shopping centre ... hung out and watched the machine thingie melt snow ... should have brought a chair ... several folks were hanging out doing the same thing ... nice sunshine, no wind ... several coffees ... pleasant way to spend a morning ...

 

There is a heck of a lot of water in snow ... 

 

Went and had some lunch and came home and started a loaf of bread ... kind of a "fuzzy" day today ... vision a little out of wack, some boatiness ... nothing exceptional ...

 

Good to hear the improvement posts over the weekend ...

 

Have a good day ...

[[Co...]]

Hi Nova...you are sounding on the upswing. I really hope so.

....I just can't believe you are still getting snow. We had a beautiful day...good thing because rain is coming all of the rest of the week. ...

....How did you tolerate the coffee? I hope you enjoyed them.

...I thing my poor brain is trying to find the baseline again...slowly . The surges of raw anxiety and rampant health fears seem to be come and go as opposed to constant. They are intense in the first half of the day and fade to manageable in the afternoon ...I will take it for now.

    Glad you got out for a walk Nova.  Carry on friend...I am following right behind you...coop

[[sa...]]

Well, my five day window came to a close. back to raging tinnitus and nausea. It felt so good to be normal for a while. I really thought I was healed and the windows would just keep coming.  My last windows like this were back in November. I hope I don't have to wait 5 months for them to come visit again.

 

I did a lot though -- went out to eat twice, visited some friends, took a bunch of walks.  I feel like we are all very close. One of these days we'll just wake up and be ourselves again.

 

It's really hard to fell this way now. So close. When When When...

[[Co...]]

Sas. ...the exact same thing happened to me this month...also month 16 for me. I had 5 wonderful joyous happy days that were completely sx free.. heaven. I thought for sure I was on my way to having my life back. ANNND...it closed. I was so disappointed. I have been in a wave for awhile, but it feels like it's trying to lift again. I agree with you.. it can only be a good indication of healing. Just over the weekend 3 BBs on this thread posted stories of healing between the 18-22 month mark. They are all still having some sx but picking up thier lives again and feeling consistently well.

. ..I am so happy for you that you had that stretch of windows...they will come back ...for both of us...coop

[[No...]]

Hi Coop ... I only drink decaf ... and it has never bothered me ...

 

Our temperature is going up, so the deep cold seems to have gone ... and we are getting a bit more snow tonight and tomorrow ... probably more like a thick rain ...

 

Had a fairly quiet day ... some head and sinus stuff ... and some boatiness ... nothing exceptional ...

 

Good to hear you are having a better day ...

[[Co...]]

Nova...you are sounding good...yay...

[[sa...]]

Coop,

 

I hope a nice window opens for you. Maybe we start getting windows at a higher frequency now. Lets hope. I'm feeling pretty wavy tonight. I think I'll go to be and try again tomorrow. I had a long meeting at work today and was having a hard time keeping it together. I'm sleeping really good these days, so it's a good escape.

[[Gr...]]

Good morning -- afternoon, everyone.

 

I took some asha - something, I can't look for that spelling right now.  I took it early, like 1 a.m., it's supposed to wind the brain down, reset it to go to sleep earlier.  and I did sleep, from 3:30 until 11 a.m., only one wake up. 

 

Guys, I was doubting myself -- maybe Nova's post triggered these thoughts. I've been thinking, could I possibly be making this up?  Is it psychosomatic?  Isn't it crazy that most people seem to be moving on with their lives, and I've still got this crazy shit going on? After 16 months?  It wasn't wave thinking, it was just me, sort of stunned myself that this could still be happening, and questioning, that maybe there is something wrong with me mentally?  I've been having a lot of doubts. 

 

Then I thought of Baylissa, she is very normal,  a counselor herself, and this happened to her, and she came out on the other side, wrote a book, helped a lot of people.

 

And then I started thinking about this guy from here, I guess I can say his name, I'm not saying anything that he didn't post publicly on here, Tex67, he had an "early" success story, less than a year, went back to work, and when I looked him up today, unfortunately, he had reinstated and was doing a very quick taper, starting all over again.  which made me think of More Chocolate, another 7 month success story, and she came back at 16 months with an awful wave, and then finally another success story at somewhere less than two years.  So that kind of validates what I believe.

 

But I'm having trouble with my level of function.  I don't seem to be doing as much as I think I should be.  Other people seem to do more.  People are back to work.  they get on planes, go on vacations.  I still have a major problem sleeping anywhere but my own bed.

 

I guess it's all individual.  I guess I do some things that other people are looking at me and thinking, wow, I'm not doing that.  Or we have some people still mostly on the couch, real all-the-time fatigue.

 

Guys, this is HARD.  and it takes a damned long time.  I've been putting one foot in front of the other for a long time, and now I want it to be over.

 

Hope you all have a better day.

 

Green...I didn't know tex reinstated...and he is tapering again?  Guess we have no choice even if we ever wanted to(which I won't).  I know of no reinstatement that worked on this board yet.  I also read of morechocolate.  I didn't want to mention it.

 

I too was having thoughts of me having no way to avoid protracted last night.  Nothing on this journey has been easy for me.  From years of tolerance, to a horrendous taper that was very slow by all accounts(26 months), and now very symptomatic.  I assume I am a really bad case and I'll be one of the 3-5 year peeps.  I just hope I continue to see improvement as time goes by.  right now that doesn't seem to be the case.  I really don't want to be posting here for that long and I will be pleasantly surprised if I heal earlier.  I thought I'd be better at six months which I was but nothing really has gotten too much better.  No big corner has been turned.  Hopefully, you ahead of me can really see some acceleration soon and I'll be more optimistic.  No pressure   Sort of in this resignation zone today.

 

Drew,

 

as hard as it is, we cannot project the healing timeline.  I have read that in a number of success stories, and I've always done a lot better when I stick to living life as best I can, when I accept where I'm at, and just live.  The minute I start projecting about healing, worrying about how long this will take, how bad I feel, what's still wrong with me, I do a nose dive.  This is easier to do, of course, when I'm feeling better!  Quite challenging when symptoms intensify.  absolutely impossible in a wave.  But that's the pattern.  the wave ends.  symptoms slowly get more manageable. hopefully we get a little improvement in baseline.  and we hang on for as long as we can until the next time.  It gets a lot easier in the second year.  and we really don't know it's two full years.  Life wrote a success story at 18.5, I think it is?  People do heal earlier.  don't be discouraged.

[[Gr...]]

Good morning -- afternoon, everyone.

 

I took some asha - something, I can't look for that spelling right now.  I took it early, like 1 a.m., it's supposed to wind the brain down, reset it to go to sleep earlier.  and I did sleep, from 3:30 until 11 a.m., only one wakeup. 

 

Guys, I was doubting myself -- maybe Nova's post triggered these thoughts. I've been thinking, could I possibly be making this up?  Is it psychosomatic?  Isn't it crazy that most people seem to be moving on with their lives, and I've still got this crazy shit going on? After 16 months?  It wasn't wave thinking, it was just me, sort of stunned myself that this could still be happening, and questioning, that maybe there is something wrong with me mentally?  I've been having a lot of doubts. 

 

Then I thought of Baylissa, she is very normal,  a counselor herself, and this happened to her, and she came out on the other side, wrote a book, helped a lot of people.

 

And then I started thinking about this guy from here, I guess I can say his name, I'm not saying anything that he didn't post publicly on here, Tex67, he had an "early" success story, less than a year, went back to work, and when I looked him up today, unfortunately, he had reinstated and was doing a very quick taper, starting all over again.  which made me think of More Chocolate, another 7 month success story, and she came back at 16 months with an awful wave, and then finally another success story at somewhere less than two years.  So that kind of validates what I believe.

 

But I'm having trouble with my level of function.  I don't seem to be doing as much as I think I should be.  Other people seem to do more.  People are back to work.  they get on planes, go on vacations.  I still have a major problem sleeping anywhere but my own bed.

 

I guess it's all individual.  I guess I do some things that other people are looking at me and thinking, wow, I'm not doing that.  Or we have some people still mostly on the couch, real all-the-time fatigue.

 

Guys, this is HARD.  and it takes a damned long time.  I've been putting one foot in front of the other for a long time, and now I want it to be over.

 

Hope you all have a better day.

 

 

Green,

I have all these same thoughts too. Like when I was in that long wave of anxiety--I thought this MUST be the real me, this is who I am now. I got very depressed about and thought I cannot live my life this way. Guess what... that wave has lifted and now I have no anxiety.. at all. So, who is the real me? I think this is the real me, because when Im not in a wave I feel better than ever. This w/d is just a complete mind f#$! It takes our normal rational mind and turns it into a bunch of crazy, negative thoughts that are NOT the true us. Jenny

 

Jenny, I love you.    Thank you!  I had to go to Bliss John's book, I was having such horrible thoughts.  I didn't realize how bad my mental symptoms were until I read them (she has a list).  I had everything, racing thoughts, paranoia, rage, DP, DR -- and so much more.  I am so glad to hear you are feeling better.  How is your energy?  They say that's the last to come back.

 

Re Tex67.  I don't know what to think about that.  I'm kind of horrified that after suffering like this anyone could start taking them again.  Then I was thinking maybe he had a bad wave, left the forum too soon, and had no support?  I don't know.

 

I'll bet there's a lot of people who reinstate.  We have to give ourselves a lot of credit.  This is unbelievably hard.

[[Gr...]]

Green,.  Doubting is such an ongoing mind trap in this procesz. I have big bouts of it too. I constantly ask myself if I am just wrapped up in some kind of self imposed denial.  maybe I do have some functional anxiety and/or brain disorder. Then I remind myself that everyone on here sounds just like me. And in a window it all goes away. Your post from Dr. M in Canada was hugely reassuring to me...and someone posted a video from Ian Somebody who had worked for 20 years with people w/ding and he clearly says 2 years is the norm. Then I think of HH who turned a corner right at 22 months and though she is having some anxiety on the 6th day of 12 hour day tours around NYC...with teenagers , she is having a good time....after surviVing the loss of her house and moving. ...I remember Tex  too...sorry to hear he is tapering again. ..Sometimes I think I should just go in to the doctor and beg for every possible test just for reassurance.  But in a window I don't feel that. I am trying to look at my goid days and windows as " who I am " and " just me" instead of thinking the opposite.  that this mixed pathetic bag of anxiety and craziness in a wave is " just me " and "who I am"...The crappy problem is that in a wave I can't think rationally. Jenny said similar, that when she is not in a wave she feels normal. Somebody on another thread ( can't remember which) said that she feels " perfect" when not in a wave. For me, this has been such a damn long wave. I feel like I am back in tolerance and early acute. HH said her last wave was 6 weeks long....This has to be w/d because I just couldn't have 25 fatal illnesses all at the same time.  And what are the chances that a bunch of people on a forum would have the same 25 fatal illnesses. 

......Green, I think you are doing a lot of things . You are still having sx and plowing through a wave. Yet you go into the city and go to shows, making big dinners for your kids. holding up a bunch of us here on BBs...keeping your house together.. shopping...I don't think we are doing much less than others here. I know the working peeps make me feel completely wimpy, but we can not compare ourselves to others.Those of us who are working are having waves and sx as well...many say if they could they would take a leave of absence...but I am with you there, I simply would not be able to work through this.

......What choice do we really have except to do the best we can on a given day. If there was anything that would make this better I would be the first one in line to take it...the only thing we can do is live through this crap

......It will get better Green...and we are really close to that 24 month mark. 3/4 of the way...done. ..How did the rest of your day go?...I hate it that any of us has to suffer like this...I am right there with you...love to you...coop

 

Coop,

 

you hold up more people than you realize.  You and Nova are our rocks here, kind and steady.

 

This wave -- boy, is it ever weird how we're so in sync with waves? -- this was brutal.  We talked about it?  I have to say, it was one of the worst --  I guess since the bad one we had at one year.  remember the post that said we get bad waves a cyclical milestones, 1 year, 18 months?  we're not quite 18, but this was a monster wave.  wow.  mental and physical sx for me.  I guess that's the nature of a wave -- physical symptoms, and the mental symptoms make it impossible to cope?  and the mental symptoms are really bad. I couldn't even come on the thread, I didn't trust myself to talk to people.  racing thoughts, paranoia, I was bursting into tears, without warning, throughout the day.  I mean I'm in Dunkin Donuts, paying for coffee, and I start sobbing?   DP/DR. 

 

let's hope that's it for awhile.

[[Gr...]]

Good morning -- afternoon, everyone.

 

I took some asha - something, I can't look for that spelling right now.  I took it early, like 1 a.m., it's supposed to wind the brain down, reset it to go to sleep earlier.  and I did sleep, from 3:30 until 11 a.m., only one wakeup. 

 

Guys, I was doubting myself -- maybe Nova's post triggered these thoughts. I've been thinking, could I possibly be making this up?  Is it psychosomatic?  Isn't it crazy that most people seem to be moving on with their lives, and I've still got this crazy shit going on? After 16 months?  It wasn't wave thinking, it was just me, sort of stunned myself that this could still be happening, and questioning, that maybe there is something wrong with me mentally?  I've been having a lot of doubts. 

 

Then I thought of Baylissa, she is very normal,  a counselor herself, and this happened to her, and she came out on the other side, wrote a book, helped a lot of people.

 

And then I started thinking about this guy from here, I guess I can say his name, I'm not saying anything that he didn't post publicly on here, Tex67, he had an "early" success story, less than a year, went back to work, and when I looked him up today, unfortunately, he had reinstated and was doing a very quick taper, starting all over again.  which made me think of More Chocolate, another 7 month success story, and she came back at 16 months with an awful wave, and then finally another success story at somewhere less than two years.  So that kind of validates what I believe.

 

But I'm having trouble with my level of function.  I don't seem to be doing as much as I think I should be.  Other people seem to do more.  People are back to work.  they get on planes, go on vacations.  I still have a major problem sleeping anywhere but my own bed.

 

I guess it's all individual.  I guess I do some things that other people are looking at me and thinking, wow, I'm not doing that.  Or we have some people still mostly on the couch, real all-the-time fatigue.

 

Guys, this is HARD.  and it takes a damned long time.  I've been putting one foot in front of the other for a long time, and now I want it to be over.

 

Hope you all have a better day.

 

Sue,  your doubting yourself is a symptom, I hate saying this, but it is. We have this sense of guilt for feeling sick and we carry it like a cloud over our heads.

 

Coop, has pretty much said it all.

 

Sue, if you have scientific approach, what you are saying, is this you, is impossible. It's just too many of us, from too many places, having the same things. Even if you want to go with what your therapist thinks, and many buddies who decide to quit coming here, that we are conditioning each other by focusing too much, even allowing that, it still does not make sense. Think of all the time I could not come to the thread, simply because I was too sick to post and read. In that period, I kept having the same things you were having.

And if we were triggering each other, don't you think that Baylissa, Dr Jennifer, Colin, would give warnings on spending too much time here ?

 

YOu did not say any of these things I am mentioning, I am just being the devil's advocate.

 

COnsider that HH, she felt so sick until right before her trip, practically. SHe is so much ahead of you too. What comparisons are you making ?  Some  people have taken 3  and something years to heal.

 

We are all different and it goes against everything we have been brought up to believe. We are brought up to look at others, to compare and compete with our peers even if we are not supposed to, it's what we end up doing.

 

Here we can't do that if we want to get out of this ever.

 

Coop, pretty much said it all but you got my hairbrained lecture all the same.

 

Sue, we are about to celebrate our 17 month or what ? You are in a terrible wave, I can't imagine what you are going through, I am so sorry. But when you have your windows you feel really well.

 

Sending healing thoughts your way.

 

Hope something of what I wrote made sense.

 

P.S. I have already told you this, but sometimes I read what you are do every day and wish I could do as many interesting and pro-healing things as you.

 

Sky, my friend.  Yes, it was a very bad wave.  And yes, self doubt is a mental symptom.  Yes.  Waves are like a cult, they brainwash me.  I forget everything I know about withdrawal.  The therapist planted the seed, but it wouldn't have taken root without the wave, without all of my mental symptoms, which were pretty bad.  I felt too bad, and too mentally erratic, to even come on the thread.

 

I know you're right, how would we all have the same symptoms?  And, when we get here and find out that the "sickness" and "malaise" and ailments we had while on benzos are all the same, tolerance.  we didn't even know each other then.  we had no clue benzos caused all of this.  that we learned here, putting two and two together.

 

Thank you for being supportive.  How have you been feeling?  Do you still deal with fatigue?

 

talk tomorrow.

[[Co...]]

Green...you are not crazy...w/d is crazy.. We could all write our personal One Flew Over the Cuckoo 's Nest...this is so long and so difficult I don't know how any of us emerge with our minds. All the success stories say it all just comes back...our old selves ...and all of the w/d nightmare fades. I hope so because I feel traumatized from this trek through hell in army boots.

......Green, we still have 6 months ( or less) ....so much healing will happen in that 6 months. I noticed in some of the early success stories that many were written by BBs who were also taking an adjunct medication like an AD or non'benzo antianxiety.

.....I have had much more fatigue in year 2. Actually some things were better in year one. I had much more energy. My body didn't hurt as much and unbelievably my sleep was better. Other things are so much better in year 2. My windows are much better, I can hold conversations with people, my concentration, for the most part is better, my endurance is better and I am not in bed all day.

.....You are going to heal Green. This has been the worst wave of year 2 for me...I hope that means healing is only a few months off...for both of us.

......coop

[[No...]]

Hi Folks ... got some sleep ... woke up ... AND IT IS SNOWING ... they really are out to get me ... 

 

 

[[No...]]

Green ... I probably know what you have been going through ... especially not wanting to come on BB ... not trusting myself ... and that is okay ... not much unusual in that ...

 

Messy, yes ... disturbing, yes ... unusual, no ...

 

We do what we can, when we can ... and turn another page ... 

[[Gl...]]

Hey guys, after a bad encounter with Gabapentin that rekindled my benzo wd symptoms I'm mostly okay again.  I'm blessed to be able to say that.  My general anxiety levels are higher but I'm living life again and not sick all the time.  It's great to say that.  It took me 54 days to recover from that Gabapentin crap, that stuff was a nightmare!!!!  Beyond words.  Glad I'm feeling better and my energy levels are higher and more natural, and healthier.

[[Co...]]

Glyn.. I was encouraged to read your post. At nearly 17 months in one of the worst waves I have been combing the ' other medications' board looking for something that might offset anxiety and dizziness. I was seriously considering adding a 'safe' drug. Most of the posts ultimately ended up concluding that either the adjunct med if it helped , it only helped temporarily and  resulted in tolerance and yet another w/d. Some of the adjunct meds also had an added layer of sx. Your post underscores all of that. I am so sorry you went through that. I am not a zealot regarding all medications but it seems that all the medications used for depression and anxiety have a heavy price to pay for short term relief.

....thank you for the post and I hope you continue to feel better....coop