6-12 month thread....

[[pe...]]

I chose toasted marshmallow for my new room. Our house is a rainbow of colors and I wanted a light warm room. It's a fancy word for off-white, I guess. I'm excited for it. There's a bed frame from my paternal grandmother's house sitting in our garage. It's the bed I slept in when I visited her house as a little girl. She was an angel to me. My own mother had a lot of issues and finally left my family when I was 16. I was heart broken, but my grandmother cried with me at her kitchen table and said, "I wish I could have been your mother." So, having her presence in my room with me will be perfect.

 

Hello to our newcomers and to my old friends.

Nova, you are my hero. Accomplishing survival, is a lot in this struggle and it's all we can and all we have to do. It's maybe a bit intense, but another bb (maybe Parker?) said something like - all you have to do to get better is stay alive. I pat myself on the back for that almost everyday. I made it through another day.

 

Coop, Mrs, Lisa - I'm sending some warm thoughts, peace and love your way. This is such a very hard thing we do. And the doubt is unbelievable. I have three doctors now who all believe it was the meds, they believe it more than I do most days. I followed up with the neurologist today. She is such a dear. My MRI looks good. She wants me to do an EEG on Friday which I'm not too stressed about. But she thinks it's 'protracted benzodiazipine withdrawal'. Those were her words and she looked me in the face and said, "My gut tells me you're going to get better. It's going to take longer than we want, but you'll get better. Protracted withdrawal can take two or more years." We talked about meds and she said no way. She said there are no meds for what we're going through. There are some things that help some people in withdrawal but she wouldn't let me try anything with my history of bad reactions to medications. It's just a gamble and the brain really needs a break. She said exercise was important for brain health and challenges like puzzles and sudoku. She also mentioned the Mediterranean diet and trying to cut out gluten, dairy, corn, soy, caffeine.

 

My point is that even if we don't believe it, doctors do. I have print outs from three different doctors talking about benzodiazipine withdrawal symptoms. Where's that class action lawsuit? I'm ready to sign up.

 

Hope you all get a bit of rest tonight,

Peace2

 

 

 

 

[[...]]

Good evening all!

 

Hope everyone is finding relief in one way or another!!

 

:smitten:

[[mi...]]

Thanks Jenny for the welcome. I also thankyou for responding to my ? about the brain sensations. It is a really tough one for me. I have other s/x I can deal with, this one though has put me in bed more than anything else. I can function with it most of the time, but it is just so relentless that I just melt into a puddle of pity!! Then up I come again and then,,,,well I know you know. I hope our out of control party goers meet up somewhere else soon.

 

God bless and hugs to you jenny

 

 

[[je...]]

Peave-- your Dr sounds amazing. Did her words give you some comfort? They certainly gave me some. Your room sounds amazing, let us know how it turns out. Jenny 

[[li...]]

Hi everyone! It is so hard for me to keep up with all the threads. Wow, our family has grown and that is simply awesome!  :thumbsup:Ii am so sorry that I am reading so much suffering on this thread. I have been hit with allot of stressors lately and right now feeling the pressure. I think that it is normal life stuff but I do not like to be under this much stress. I know that I am not healed yet either although I know God has and is healing me. I know that he will heal all of us. Sometimes while going through this process it is easy to loose emotion and even question God being there. I know he is.

 

Lets all keep understanding some basic facts.

 

1. Studies on BB have shown that the average "healed" period for benzo w/d is 14 months

2. There is a big difference between months 6,7 and the turn around month for many of 8 months.

3. Compere your symptoms today with what you were feeling just 3 months ago and judge your baseline only in months.

 

I am so sorry for this hardship we are all going through. It is simply so hard with the ups and down. Something that has helped me immensely is to force myself to stay present through practices in the Power of Now book. I am praying for all of you that we all exit this cave as soon as possible and that we all make it out with our heads up high and our focus on the beauty of this world. This is the hardest thing that many of us have ever gone through but we will make it through.

 

I know one thing for sure -- if we have come this far we are closer to the exit of the cave than we are from the entrance. One foot in front of the other. We are all going to heal.

 

As to a funny note  -- I know that  have been spending way too much time of BB. I sent a business associate an email today and I signed it as "Life". Go figure! He thought it was cool. Fake it until you make it!

 

Life

 

 

[[mr...]]

if we have come this far we are closer to the exit of the cave than we are from the entrance.

 

So good, and so very true Thanks for this

 

Mrs.

[[li...]]

yes, Mrsalw, ... It is true. fI pray you feel much better. I know you will. time in this process takes so long but it does heal!

 

Life

[[Co...]]

Just checking in....my wave lifted and I am back at a good 70-75% baseline. The 6 mg of atenolol finally nudged my b/p back down to a respectable 125/ 70...not great but it should be even better by morning. Who knows what turned the day around...nothing that I did or didn't do...all of a sudden the fear,  intrusive thoughts and health fears were just not there...no rhyme or reason...same as when they appeared...crazy stuff

.....I feel a little beat up and really tired but I survived yet one more wave...5 more months until through month 14....sounds so long...but I have already done 15 counting my taper and I am still here...and better...so onward and forward..

......Mommy...so glad you are feeling better too...Nova,  keep teaching us...Mrs...you are going to get better and you are doing a brave and steadfast job with your w/d. You are in. tough place right now but it wont last forever no matter what the Benzo Beast is trying to tell you..just keep it going the best you can one day at a time.

...Peace...so glad your mri is good...love it that you have such good doctors...how wonderful to have your grandmother 's bed..you are sounding better.

...Lisa...your windows are coming...and I want to be there to celebrate with you when it does. I cant wait for Christmas to hear from everyone how much better this Christmas is for each one of us...

....Green...thank you for being here and supporting and encouraging us...I am happy for you that things seem to be on the upside for you again...you have worked so long and hard on this hike up a 1000 mile mountain...

...Minnie...welcome...and bravo! to you...a flight weeks into taper! ...amazing the undeniable pull our grandchildren. have on our hearts and souls. My grandsons have been huge in keeping me moving forward. I got out of bed on some of my worst days. to be at birthdays,  plays,  spring programs and best of all.  ...Saturday brunch at my house. You are doing an awesome job.   

with this misery Minnie...you are going to get there. I came to  the same resolve that you did.....I might die but I am going to go out living. You have loving hearts and a world of support on BBs....you will get your life back too

 

.....goodnight all....sending wishes for really great sunbreaks for all of us tomorrow, most of us have had a tough day today...hopes for peaceful sleep in Mommy 's healing kitchen....coop

 

[[mi...]]

Hi coop....you are an amazing person. I read this thread from begining to end. You are such a soothing voice to everyone, even though you have suffered so much.

 

Your grandchildren are lucky to have you. I love my grandchildren so much, I just could not even consider not going to welcome the new one into the world.

 

I hope this evening finds you feeling well. I have been on the sidelines cheering you on. You are almost there. A few more lavender soaks!!

 

Goodnight, I hope we all sleep well

[[Mo...]]

Catching up... Laughing at Life's post about signing his BB name..LOL. It reminded me of a friend who had a newly potty training child at home.  He was in a meeting and asked where the potty was.. Haha

 

Peace- I love how the room sounds and your precious grandmothers bed.  What a comfort to have that with you.  The doctors are so right on with you.  How very special you are missy. 

 

Coop-  it seems to blows it and out with the wind doesn't it.  I hope you are fast asleep.

 

Lisa- hang in there.  It will come.  Life and Peace had some very true statements. 

 

Jenny, GMIT, Mrs, Minnie...everyone

 

Tonight I went to biblestudy.  The group there knows our situation from my sharing.  We prayed for everyone.  There is a scripture...peace and sleep for those he loves..

 

Tonite that's my prayer for us all,

 

MommyR

[[...]]

Good morning all!

 

Here's hoping everyone is feeling relief!

 

:smitten:

[[Sk...]]

Hi, everybody I hope this day is better for all of us !

 

@the ladies. I was reading over at the brain injury website that when in an injury people tend to gain weight because of water retention. I was wondering if that could be what many of us are having now.

 

I do have a benzo belly but I am huge in general and I just do not eat enough for such a weight gain.

 

I know it is not first on our list of complaints  but still I have so many things making me feel awkward. I am next to bald as well, it would be nice to be a little slimmer and dress more like a human and less like a refugee !

 

Have a nice day everybody !

 

 

[[Gr...]]

Coop and Mrs - I too sit here in tears and hope that the dark days and pain will go away here in the next few months.  Coop - I'm so happy that life is improving for you, so so happy and appreciate your input and encouragement.

 

I am having trouble navigating what's causing what.  I realize that the dark thoughts are a wd symptom due to brain chemistry being off.  All the counter efforts I am trying haven't helped much - such as positive affirmations.  I've even been writing them down over and over to distract and to try to rewire my brain.

 

MommyR, thank you for you sweet words.  How I'd love to be in your kitchen, taking in all the love and warmth.  You are such a kind soul with a delightful spirit.  I hope your complete healing happens for you real soon.  You sound well on your way to being completely whole again.  Your kids will love having their mom back fully in body and soul.

 

Does anyone else look at their life and see such a loss?  I look back at who I was and miss that person.  I had so much energy and vitality.  I was just watching Sex and the City for the hundreth time to distract myself partly and also because I can live vicariously that way too.  I know it's trivial and vain but I used to wear funky cool artistic clothes like Carrie.  That was me, artsy and cool and kind.  Now I am so sick I don't wear makeup, don't wear anything much, in fact usually go around in my husband's undershirts and boxers in the house for comfort and laying around, barely get my hair cut anymore and am letting it go gray because it's too hard to sit in a salon chair or know which day I might be up to that.

 

I'm just venting here a bit about dumb stuff.  I'm mourning my lost life.  I can barely work on my artwork anymore due to discomfort.  My legs burn and my neck and brain feel inflamed.  I still worry that I might have lyme disease because of the stiff neck and neurological issues.  For only being on 5mg valium, I don't understand this degree of illness.  I'm scared and sick and know that my brain chemistry is off so I'm not even thinking right and yet this is who I am with this condition.

 

Does anyone relate to any of this or is it just me ?  I don't even care about my looks going south, if only my brain felt right and the pain would subside and I could sleep soundly.  This feels tortuous to me.  One worry I have is that I don't know if all this is wd.  So many worries and yet are they all chemically caused?  I worry that as winter comes on with cold season that I can't even handle a cold.  I'm already so miserable.

 

Enough of that.

 

I do need support of any kind.  This is probably a bad wave.  I've never had  a wave last this long.  I'm tired of the dark thoughts and needing a break.

 

Nova, how are you doing?

 

Love to you all,

Lisa

 

Lisa, it's not fair for those of you who took such low doses to be having such a hard time. Funny, though, that's how I started my awful tolerance in 2004, on  a very low dose.  that's why I had no idea what was happening to me.  We both know how sick you can be, how bad it can be, in tolerance.  And we will never have to do that again.  We are off this devil's med forever, and are only going to get better and better with each passing day.  There will be some bumps in the road to this wonderful recovery, like the wave you're in now, but at this stage, this far out, the worst is over and you're only going to get better.  Everybody gets better.  We know that  And you will, too.  Feel better, friend.  I know you will be cool, artsy, and funky once again.

 

sue

[[Gr...]]

Lisa ... I was in tolerance two months after I started K and spent all of 20 years there and did realize it until the last year ... took me almost a year to get things together enough to start a taper ... no support ... just Ashton and some books ...

 

Some days my attitude is better than others ... not fighting much anymore ... just too plain useless ... and sometimes fighting it helps a little for a while ... but most often fighting it is probably just another side effect to be endured ... some days my "acceptance" bucket gets so full I have to empty it and start over ...

 

 

Nova, I can hear how tired you are.  Don't fight it, just rest as best you can, ride it through.  When my acceptance bucket gets full, I find myself on my knees begging God to make it stop, or just give me the strength to deal with it better.  And I'm not particularly religious.  This crap gets really, really bad.

 

I'm in a lull myself, and feel it's just a little calm before the storm.  Hang in there, it will pass.

[[Gr...]]

Hi everyone...I have read this thread for beginning to end, and what a wonderful and brave little family you have become!!

 

I just wrote a somewhat winded story and at the very end I pushed something and it was GONE...oh well it is less frustrating than the benzo fight, get all happy in a window and poof it is gone.

 

My story is about the same as all of you except for my time off. I c/t in detox on feb 2nd. then five wks into acute, due to 3 trips to the er doc reinstated me on ativan 1 mg for 1 mo. ( not stabilized) 2mg for 1 mo. (still not stabilized) started 3 mo. taper. Last dose july 24th. My dr. knows nothing about benzos. He told me a month ago that all these s/x could just be the new me!! Thank god I have bb and know better.

 

After acute, about 6 wks. things improved some. I still have these s/x,

 

my worst, head pressure w/ strange sensations

ringing in ears , awful

benzo belly, has eased some

sweating, mostly at night

anxiety in body, unzip and run type

a few more that come and go

 

Have never had a full window, am so thankful for all of youflew there again in may that have. Have had about 10 days since acute that have been almost a window. Turned a corner about a month ago where I was grounded to earth again that was wonderful!!

 

Like all of you I try to enjoy any life event that I can, we have all missed alot. Everyone here is so brave and so giving of kind words and encouragement Bless you all!!!

 

I have forced myself to do things that I just refused to believe I was to sick to do. I was blessed with a new grandson last July. I flew from seattle to denver in dec. no meds wow! Then I went again in may, this time I went to help. Ended up in the er with h/palps and b/p elevated, so be it, I survived and was able to be of some help to the first time mom and dad.

 

We went to wyoming for 2 wks last month. I was not going to go ( I was concerned for hubby, wanted him to have a break). Ended up going and grabbed all of the fun time I could manage. Some faking, some okay, but I was there with my hubby and that was enough. If someone told us we would not be here tomorrow ( not benzo related lol ) I would do my dam.....t not to be in bed. I know about being in bed though and nothing I can do at that moment, aside from a fire could move me. I am just saying we all are winning when we can and that is enough....Take care fellow bbs, keep posting you are all helping the silent readers more than you know.

 

Hugs and Healing wishes to all! 

 

 

Welcome, Minnie!  Anyone who feels the need to unzip her skin so her anxiety ridden soul can run screaming down the street is a good friend of mine.  You should feel at home here

[[Gr...]]

I chose toasted marshmallow for my new room. Our house is a rainbow of colors and I wanted a light warm room. It's a fancy word for off-white, I guess. I'm excited for it. There's a bed frame from my paternal grandmother's house sitting in our garage. It's the bed I slept in when I visited her house as a little girl. She was an angel to me. My own mother had a lot of issues and finally left my family when I was 16. I was heart broken, but my grandmother cried with me at her kitchen table and said, "I wish I could have been your mother." So, having her presence in my room with me will be perfect.

 

Hello to our newcomers and to my old friends.

Nova, you are my hero. Accomplishing survival, is a lot in this struggle and it's all we can and all we have to do. It's maybe a bit intense, but another bb (maybe Parker?) said something like - all you have to do to get better is stay alive. I pat myself on the back for that almost everyday. I made it through another day.

 

Coop, Mrs, Lisa - I'm sending some warm thoughts, peace and love your way. This is such a very hard thing we do. And the doubt is unbelievable. I have three doctors now who all believe it was the meds, they believe it more than I do most days. I followed up with the neurologist today. She is such a dear. My MRI looks good. She wants me to do an EEG on Friday which I'm not too stressed about. But she thinks it's 'protracted benzodiazipine withdrawal'. Those were her words and she looked me in the face and said, "My gut tells me you're going to get better. It's going to take longer than we want, but you'll get better. Protracted withdrawal can take two or more years." We talked about meds and she said no way. She said there are no meds for what we're going through. There are some things that help some people in withdrawal but she wouldn't let me try anything with my history of bad reactions to medications. It's just a gamble and the brain really needs a break. She said exercise was important for brain health and challenges like puzzles and sudoku. She also mentioned the Mediterranean diet and trying to cut out gluten, dairy, corn, soy, caffeine.

 

My point is that even if we don't believe it, doctors do. I have print outs from three different doctors talking about benzodiazipine withdrawal symptoms. Where's that class action lawsuit? I'm ready to sign up.

 

Hope you all get a bit of rest tonight,

Peace2

 

Oh, Peace, I'm rocked, you found a doctor who spoke the truth.  I suspect most of them know, and the cat's out of the bag now, thanks to sites like this, and enough people speaking up and going public.  It feels so weird, validation from the medical profession, yay, and now we still have to deal with withdrawal, and there's not much we can do except eat clean and walk.  which we kind of knew already. I don't like to be negative, but I quietly revised my healing timeline to two years.  I'm hoping for reduction of lots of s/x by 12-14 months, but I have to be realistic.

 

Thanks for sharing that.  Hope all is well.  I knew that MRI would be fine.

[[Gr...]]

Just checking in....my wave lifted and I am back at a good 70-75% baseline. The 6 mg of atenolol finally nudged my b/p back down to a respectable 125/ 70...not great but it should be even better by morning. Who knows what turned the day around...nothing that I did or didn't do...all of a sudden the fear,  intrusive thoughts and health fears were just not there...no rhyme or reason...same as when they appeared...crazy stuff

.....I feel a little beat up and really tired but I survived yet one more wave...5 more months until through month 14....sounds so long...but I have already done 15 counting my taper and I am still here...and better...so onward and forward..

......Mommy...so glad you are feeling better too...Nova,  keep teaching us...Mrs...you are going to get better and you are doing a brave and steadfast job with your w/d. You are in. tough place right now but it wont last forever no matter what the Benzo Beast is trying to tell you..just keep it going the best you can one day at a time.

...Peace...so glad your mri is good...love it that you have such good doctors...how wonderful to have your grandmother 's bed..you are sounding better.

...Lisa...your windows are coming...and I want to be there to celebrate with you when it does. I cant wait for Christmas to hear from everyone how much better this Christmas is for each one of us...

....Green...thank you for being here and supporting and encouraging us...I am happy for you that things seem to be on the upside for you again...you have worked so long and hard on this hike up a 1000 mile mountain...

...Minnie...welcome...and bravo! to you...a flight weeks into taper! ...amazing the undeniable pull our grandchildren. have on our hearts and souls. My grandsons have been huge in keeping me moving forward. I got out of bed on some of my worst days. to be at birthdays,  plays,  spring programs and best of all.  ...Saturday brunch at my house. You are doing an awesome job.   

with this misery Minnie...you are going to get there. I came to  the same resolve that you did.....I might die but I am going to go out living. You have loving hearts and a world of support on BBs....you will get your life back too

 

.....goodnight all....sending wishes for really great sunbreaks for all of us tomorrow, most of us have had a tough day today...hopes for peaceful sleep in Mommy 's healing kitchen....coop

 

Yeah, Coop, beat up and tired, that's exactly how I feel after this last one.  I've stopped calling them waves, they last too long.  I'm either in the hole or out.  Anyway, beat up and tired, but not uncomfortable today, and for that I'm grateful. Have a wonderful day.

[[pe...]]

Greenice- I don't really get windows, the whole thing feels like a wave. I'm in the hole, it's just a matter of how deep. I'm glad you're getting a break from symptoms. I hope it doesn't take two years, but knowing it could is helpful in a way. It's good for me to stay open either way so I'm not disappointed with my progress at certain months. I hope, hope, hope it's better for us south sooner!

 

I'm tired. Terrible dr. That's my story. Did I mention I'm tired?

 

Peace2

[[Co...]]

Green and Peace...I Reframed my timeliness out yo 2 years too..after the 6 month crash in to reality debacle. Having said that,  I am following Life,  HealingHope and PianoGirl's posts and stories. Life and HH have made great improvement in months10-14...and PianoGirl talks about the biggest part of her healing happening by the end of year one with finishing touches and tying up loose ends in the second year. I am trying to believe that 2 years foes not mean 2 solid years of total misery...with good reliable improvement by month 14. I hope I am not living in denial with unrealistic expectations again...that 6 month disappointment ruined me for a few weeks. I like the idea of not defining waves and windows as separate and apart experiences ....its all a mountain to me...I am either making my way to the top....stalled and 'resting ' on the trail or hiking back down a ways to find a better trail to the top. ...Today I had to back track a little to find a better trail ..now I think I am resting ..

....My head pressure came back this morning....with anxiety and up and down b/p...I had to take 6 mg of atenolol again and my go to hot bath with lavender epsome salts...b/p is good again. This head pressure thing freaks me out and I cant stay out of the anxiety spiral...I know the goal of w/d is to be benzo free...not medication free, but I don't want to be on atenolol..even 6 mg which is practically nothing ( its the perfectionism thing ...I have struggled with it most of my life). ....having said that...once I see my b/p coming down (118/70 now) the anxiety gets better..but not always the head pressure...boy, I want to fight and flail against this one even though I know 'resting ' with it...letting it 'be ' ...would get me further.....obsession ...I know.

....So I am going on about my day ...4 more months...seems like nothing compared to the time I have already put into this...and even with current s/x it is still so so much better than months 5-7 ......

....HH...if you are out there come on and tell us again how you are at one year and a little more

....Thinking of everyone...off to the library to do a little 30 minute story time for 3 year olds ...really looking forward to it but slightly terrified as I haven't done anything with a group of mommies for more than a year...feeling rusty and some anxiety...cross your fingers for me

...Wishing everyone a better day....see you tonight....coop

 

[[Co...]]

" this far out the worst is over and you can only get better from here "....Thank you Green....yes we all heal...we know we all heal. Benzo Beast's biggest lie is the one that says, "you are going to be the one who does not heal ".....do not believe this...ever..coop

[[No...]]

Hi Folks ... tired, yukky and surviving ... can't come up with a shorter summary ... essentially just passing time ... concentration is pretty low ... "thinking" not happening ... reading not so bad ... tough getting and staying "engaged" with anything right now ... "mood" is pretty good ... no energy ...

 

Another day ... closer to being done with this ... chop wood, carry water ...

 

Take Care ...

 

Good luck tomorrow, Life ... all will be well ...

[[mr...]]

Stopping by to say hi.

 

Today is better than yesterday. I offer praise up for that

 

I am most certainly lurking and will probably be back later today

 

Thanks again for welcoming me  Take care,

 

Mrs.

[[Gr...]]

Hi, everybody I hope this day is better for all of us !

 

@the ladies. I was reading over at the brain injury website that when in an injury people tend to gain weight because of water retention. I was wondering if that could be what many of us are having now.

 

I do have a benzo belly but I am huge in general and I just do not eat enough for such a weight gain.

 

I know it is not first on our list of complaints  but still I have so many things making me feel awkward. I am next to bald as well, it would be nice to be a little slimmer and dress more like a human and less like a refugee !

 

Have a nice day everybody !

 

Sky, I'm also  gaining weight like gangbusters. I'm afraid to exercise because of the cortisol thing.  I don't know.  Have to see where this goes.

[[Gr...]]

Greenice- I don't really get windows, the whole thing feels like a wave. I'm in the hole, it's just a matter of how deep. I'm glad you're getting a break from symptoms. I hope it doesn't take two years, but knowing it could is helpful in a way. It's good for me to stay open either way so I'm not disappointed with my progress at certain months. I hope, hope, hope it's better for us south sooner!

 

I'm tired. Terrible dr. That's my story. Did I mention I'm tired?

 

Peace2

 

Peace,

 

I'm struggling, too.  Usually I'm upbeat, and when I'm not I can fake it.  Not today.  I think Coop is right, and it's what I've thought for a long time, that we're going to feel a lot better at the 12-14 month mark, and fine-tuning is going to go on for a couple of years.  How much better at 12-14 is the burning question.  And no one has the answer.  It's individual to all of us.  Life took benzos many years, felt awful, and is working by now.  I took them lots of years, did a cold turkey, and at the end of my ninth month I can get into the shower  pretty good every morning (that's a new positive development, lol)  I'm laughing and I don't know why, because this Sh** is SICK!

 

anyway, feel better

[[je...]]

Hi Guys,

 

Yeah, I have had to come to the harsh realization that I will not be healed at 1 year, and my new goal is 2 years. But I have to say if Im not drastically  better by the 2 year mark, I will be devastated! Im already kinda crushed that Im almost at 1 year and not healed..... Sorry everyone is having a hard time today, your all in my thoughts