6-12 month thread....

[[...]]

Hi Rose;

Lunesta is what got me in this mess. I too am audio sensitive. Any little little noise sets me off. Not all the time mainly when I'm in a wave like I've been for days. I also have ear ringing ( tennitus )that also comes and goes. But it's all better than it was few months ago, although still horrible.

 

Hang tight, jrod

[[Co...]]

ItsMyLife....your description of month 7 is absolutely spot on..you captured it in words perfectly. .Month 6/7 is tough for many of us. I felt like I was in acute all the way through month 7. At 8 months there were gradual subtle erratic improvements. At month 8.5 improvements became more consistent. I am in. bad wave today after a wide open great window yesterday. My baseline has been holding for the most part at 70-75% . I still get waves but they usually lift by 24 hours. I don't get windows in row. My windows are like my waves, lasting about 24 hours and then returning to baseline usually and a wave sometimes.

... You have a great attitude...You are going to get better..it just takes time and time and more time. You have come through a long way. You will get to the end of this.. keep it going ..coop

[[No...]]

Hi Rose ... for a long time almost any conversation could set me off into an anxiety and "vibration" event ... at times even speaking with my wife ... and especially a phone conversation ... and an unexpected "outside" noise could shoot me over the moon ... is this the quality of disturbance you experience? ...

 

I do not experience headaches ... many, many others do/have experienced them ...

 

My wife and I discussed the "conversation" issue when I became aware of it ... took a bit of time to connect all the dots ... "recognition" of a symptom pattern  and giving voice to it were helpful for me ... the few "face to face" folks that know me understood the issue once it was explained to them ... those that did not became "confused" and dropped away ... I would get up and walk out of a room ... being in that room and trying to process "conversation" could devolve into a cacophony of voices for me ...

 

This is isolating for me ... and I do not "like" it ... and it is where I have been and still occurs way too often ...

 

I believe this has to with "processing" ... during healing my sick brain is/was so engaged with healing that too much "incoming" got it "confused" ... this also happens for me in a car ... if I am moving "slow" things are okay ... when the speedometer goes up I am not able to process the incoming information and "shut down" occurs ... often experienced as a side effect ...

 

I actually "tested" this two days ago ... we have a bridge over the harbour here ... an older bridge with high structural girders ... at 70 km per hour I got shot over the moon ... intense vibrations, anxiety, almost sick to my stomach ... at 50 km per hour nothing ... happy as a lark ...

 

It was the attempt of my brain to process seeing those girders "whizzing" by and trying to make sense of them and feel safe ... when not "whizzing" - oh we are on a bridge ... all is okay ... same bridge ... same car ... same passengers ... different speeds ...

 

I believe the same "process" can occur ... and for me does occur at times ... with "noise", including conversation ...

 

Just my poor old brain getting confused and also getting better ... things have improved for me significantly over the months ...

 

And I am with you on the "recliner" ... wore out my old one these past three years ... new one coming next Wednesday ...

 

Hope this helps a bit ... welcome to this group ...

 

Good Healing ...

 

 

[[Co...]]

Well...my window was true to form...lasted 24'hours and ...the window is closed and the blinds are down. I was prepared ( as much as anyone can prepare for the disheartaning plunge from happy to black depression)    .Today was as awful as yesterday was awesome .. Way below baseline ..I haven't had this horrible of. wave in weeks. Having said that, I also had some major stress today. I can not handle stress very well yet. Yesterday there was a problem with my credit card but it was cleared up within minutes and then it was ok. Today...bigger stress...with depression back in the pits.

....I have. a medical appointment tomorrow and I am already freaking out. Its just a routine Wellness visit,  but because I am in a wave full of health fear,my brain is convinced that going to see my doctor tomorrow is the start of a downward spiral of scary medical interventions. It is completely organic fear. I never got freaked out about seeing the doctor until benzos.

.......I am discouraged and in that dark corner of the cave. Cognitivly I know it is all w/d...In my feelings it is overtaking me today.  Huge all day health fear..black depression..hopelessness...cog fog ...d/r...Hoping tomorrow is better...holding on to HealingHope 's statement that her best healing was at month 10. ...

...Sorry buds for the bleak post, but I think honesty is important...even when things start to get better bad days still drop us below our baseline sometimes.  Really stinks...Time Time and more Time...

...Wishing everyone rest and peace tonight. . Coop

[[No...]]

Hi Coop ... sorry to hear you are in the "wave" soup today ... this is so blanket-blank frustrating sometimes ... it was a pleasure to read about your "window excursions" these past couple of days ... I kept thinking "where's Coop?" ... oh yeah ... she is out and about "enjoying" being in life ... Yippee!!!!! ... hang on there Buddy ... this up/down, open/closed, back and forth is just our healing rhythm ... nothing lost ... so much added over the last couple of days ...

 

[[No...]]

Woke up at 12:30 AM ... broken sleep ... oh well ... at least my fingers can type ... sort of ... I know the drill ... up for awhile and then back for a few more Zzzzz ...

[[Co...]]

Thanks so much Nova...your term " rhythm of healing " is actually very reassuring and calming..rings true. It does seem to be a pattern of a good day..then a bad day...then a string of baseline days and back to start again...

....You are a treasure Nova.. hope you get many hours of peawceful sleep tonight...will chat again tomorrow....coop

[[je...]]

Add me to the wave club, the one no one wants to be in. I have a migraine with intense pressure, burning and revving feeling. Coop, I hope your wave let's up for you!

Hi Nova

[[No...]]

Jrod ... yep, better than a few months ago ... and still "messy" ... that's me too ... take care ...

[[No...]]

Hi Jenny ... burning the 2 AM oil again ... not in a wave ... sorry you dropped back in ... I am okay ... "nibbles but no bites" these last couple of days ... riding the "Baseline Express" ...

 

[[Co...]]

Nova...looks like I spoke too soon...obviously if it is 230am where you live, you are not getting hours of peaceful sleep...I hope you can go back to sleep after a bit...chop wood...carry water..coop

[[dr...]]

Just popping in for a quick hi. Trying to stay off the boards as I'm trying to break my mind from thinking about this 24/7.  I seem to be in a holding pattern. Not feeling good but not getting crushed.  Just passing the time feeling crappy.  Much different than my taper which was more wavy and I had more good days but higher levels of crapoiness. I'm now just in a steady slog.  Oh well...I just repeat that I'm healing a million times a day and none of these symptoms will harm me.

 

I hope everyone who is suffering more than usual gets some relief.  The rest of us just need to stay strong and pass the time.

[[Co...]]

Jenny...seorry to hear that you are in a wave too. ..Head pressure with headache...uhggg...my thoughts are with you. ...We will get past this Jenny..better days are not far off. Wishing you sleep for this night.  Coop

[[No...]]

You got it Drew ... these symptoms will not harm us ... "slogging through time" ... we will get there ...

[[Mo...]]

Hi Everyone,

Checking in...

 

Coop- Drat and double drat!  I loath medical appointments now.  Infact, I wish I could check in with my detox Dr. but I just don't want to face him.  Yes, it's organic.  I had to go for something a few months back and had to tell myself if I didn't get a grip I would become someone I didn't want to be.  The cave.. I know the cave so well, but it likes to morph into the belly of a whale below the ocean or a black box in space.  It's going to pass.  It always does.  I speak with total authority on the matter.  The bleaker and darker the cave, the easier it is to promise it will go way.  Before I went on vacation I went to my cousins ER (she's a nurse).  I went to her ER because I couldn't go to any ER near me or they would know my story...haha  I had to go where no one knew me and I could be normal.  The reason I went was because a doctor had hinted I might have a kidney stone and no way could I face vacation with a kidney stone lurking.  My cousin had a full CT scan done of my lower organs which got rid of some other fears too.  It all worked out.  So be a good soldier.  You are healthy.  The appt tomorrow is going to be great. 

 

Life - I am so happy stress hasn't ruined your window.  Yay!!  My family loves to keep the ex's. My aunt is best friends with my uncle's ex wife.  It took awhile, but everyone is friends now. 

 

Nova -  Sorry you aren't sleeping.  Love your wife's joke about dragging your knucklesl.  She sounds like my husband.  Yesterday I told my husband I was going to start a club called "Temporary Mental Insanity'.  He said, "yeah, you can call it TMI!".. get it.. Too Much Information because that's how I roll..haha.

 

GMIT- 15 day window.. AWESOME.. Are you still feeling bad because of the stress?  That breathing panic stuff is horrible.  I hope it has subsided.. hugs

 

JRod - So nice to have another voice.  Congratulations on coming this far in recovery AND working.  I am always amazed at people who work during this process. 

 

Rose - Nova gave a great description of what he goes thru.  Recovery can take a long time.  I remember reading a blog from a lady who checked in every 6 months. The progression was slow but still healing was taking place.  It's hard I know, but the time will pass no matter what. 

 

Jenny - I'm sorry you are in a wave.  I will post what a moderator wrote me..she said, 'When I was tapering, a friend of mine kept posting:  Your symptoms WILL abate.  I'll tell you I clung to those words like a baby with a blanket and read them over and over again.  This helped me get through the rough spots.'.. I will tell you too.. Your symptoms WILL abate..

 

Free - Hanging in there?

 

itsmylife - I'm sorry you are wavy.  This is definitely a minute, hour, daily walk.  I would go on the boards and just ask for someone to promise me the bad would pass and good would come again.  They would always promise and I extend you the same.  Things will tip again and the good eventually out weigh the wavy yuck. 

 

Peace - Thinking of you the most.  The zombie thing seems to have lifted.  Yesterday spooked me because I was sitting at the computer and it felt like my head was trying to float off.  I jumped up and went into my husband's office.  That's when he cracked the TMI joke. 

 

My short term memory is also affected.  Can't focus at alllllllll.  Vacation was fun but has definitely set me back a bit.  No 100% hours showing up.  My waking is also still off, although I slept until 5am but woke with the yuck and this really weird heat that flushes around my face and ears.  Emotionally I am kinda flat, which feels freaky too.  Again, it's much better today then yesterday. 

 

Today, I pulled the benzo card for the first time.  I had to go into the school office and could tell they were feeling like I was flaky, so I pulled the director aside and told her what I am going thru.  It did not feel good to divulge my secret...kinda like letting one more person in on this was going to carve the damage deeper into my psyche.  I'm pretty sure I was pulling off the normal thing before vacation, but something need to be said and I don't want to burn a bridge with them.  She was very kind and gave me some dates to try to have things done by.

 

Last night my counselor and I had discussed quitting the website project thing, but the weight of failure was greater then trying to catch up.  We talked about goals going forward and where I wanted to be.  I would love to wake up earlier then my family and have some alone time, but I can't burn the candle at both ends.  I'm not there yet.  If I get the 3am wake up call and don't go back to sleep until 5am, I have to finish sleeping.  I would love to get up at 6am, walk on my treadmill and have some coffee with devotions before my kids roar awake, but right now we wake up, have our day and then we all go to bed.  That's it.

 

For the next two weeks I am going to pretend having a 'real' job.  No working from home.  I enrolled my kids in VBS (half day bible school) and will be going into the school office to work.  That means we all wake up, eat, get dressed and be productive.  It will be a good test for me.  I'm really looking for some of those 100% baseline hours to return, but we shall see. 

 

In conclusion I would like to state that I cleaned my living room, washed laundry and the bathroom floor in zombie mode.  My children then destroyed 'said' clean living room, put on every item of clothing they could find because they played in the water and then got out and then played in the water and then got out.. and the potty training 3 year old pee'd on the floor.  There you have it.. the house is a wreck, but it's ok.  Last year at this time I was on a couch and very, very ill. 

 

Today my son and I decided we would have a halloween party with a bouncy house.  My husband asked if we had one last year.  I said, 'no I was too sick'.. he said, 'oh yeah, we lost a year didn't we'.  Yup, but not this year. 

 

MommyR

[[No...]]

Hi MommyR .... thanks for your "update" ... I cannot imagine managing/surviving a full household ... kudos to you my friend ...

 

"Yup, but not this year." ... I am hoping for it ...

 

Take Care ...

[[Co...]]

MommyR....what a wonderful post...thank you so much for taking the time to write such a lovely letter to us. I am clinging to every word you wrote..especially " not this year ".. .that will definitely be my beacon mantra from noe through month 24. I am very close to your jump date ( mine is Dec. 3). It gave me great reassurance to read your s/x..and healing progress as mind is practically mirror image of it. In my wave yesterday I was temtlpted to be consumed with doubts and raging health fears. Your post reassures me that it is w/d...it is w/d...it is w/d...

....Today seems as though I am returning to a livable baseline...a shaky 70-75%.. better than a crushing wave. It is shaking out that I get one wonderful window about once every 7-10 days and the swme with a black depressing wave, but as you point out.  still so much better than this time last year when I was in bed.  all day....and shaking with anxiety and so lightheaded I was breathless. ....

.....Mommy you and Peace and Jenny and HealingHope are such Mighty Girls...wonderful devoted mothers...I can't imagine going through this while being present for young children. I live alone so nobody is directly caught in my miserable days. ...

....I love your sense of humor it puts a lighter slant on this. I also amtrying to go back to scholar this Fall...to volunteer in my grandsons ' classrooms...I have Bern practicing as well with getting out more and establishing a meaningful routine. I have Bern going to PT 3x a week and yoga 1x a week. .in my former life this 'routine ' would not have even caused me to blink ...but right now it is like a victory. This is like learning to live all over again. ..but not this year..

....Mommy...have a wonderful day with your little ones. I am a retired Montessori infant/ toddler teacher...peeing on the floor.  was my life for many years...it always made me laugh inside how some kiddos were shocked and aghast to find the puddle forming at their feet while others were oblivious...believed it or not I sorely miss those precious years both with my own 2 children and the beautiful children who became part of my school over the years. Now I am retired due to RA but I have the happiest memories ( when I can slog through the w/d mud to reflect on them(....

....Thanks again Mommy...love to you...coop

[[je...]]

Coop- thank you for your kind words. I bet you were a wonderful teacher, no wonder you miss helping out with your grandsons class-- you will get there !

Mommy-- nice post, thank you! My kids went to vbs too and they loved it, I took them to 2 this summer with the last one being last night. I can totally relate to wanting to wake up and be more productive. Since I don't always sleep good at night sometimes I will sleep in and I need that extra sleep, but I wish I could wake up early everyday too.

Woke up today and most of the head pressure is gone, migraine is gone. Still can't tell how I feel, but I'm hoping today will be a better day.

Lisa- haven't heard from you, I hope your doing okay?

Peace, Nova, Drew, jrod, gmit, life, Beulah, and anyone else I missed have a wonderful day 

[[be...]]

Good morning all, looks like a lot of waving people here.

I've had a rough couple of days with the leg and groin pain.

Last night I was having pill cravings, my brain was screaming give me a pill, I took a Tylenol.

This morning I'm in hyper slow motion mode, if that makes any sense. I feel like my brain is going a lot faster than my body is able to keep up. I reached for a bottle of water in the fridge and my arm just flew out like a streak of lightning knocking things down in the fridge. I think they call this some kind of jerks.

Last night I was obsessing about " why did I ever take another benzodiazepine", I just have to let it go.

My granddaughter is coming over today and I will enjoy her loving and caring spirit so much.

We are all another day closer...yesterday's pain is gone.

Hugs and Healing to all.

 

[[Co...]]

JENNY....so so glad that your migraine is gone and the head pressure is eased. Wishing you a better day. 

....BUELAH.....what a wonderful phrase: ...." yesterday 's pain is gone "...I will be holding on to that one today too.....Interesting that you mention leg and groin pain...I have been having that for about 6 weeks too. I didn't attribute it to benzos as I thought it was RA...although a new s/x for RA.  I have been doing PT for it...and it helps.....Hope this lets up for you Beulah...you are so right...we are one day closer....happy healing to you friend.....coop

[[Mo...]]

A quick check in here before we head to Temecula for water play.  My son's kindergarten friend lives there.

 

It's so interesting to get a glimpse into people lives.  Getting to know each other like this, it seems we learn who the spirit of the person is instead of the outer shell that houses us. 

 

Coop - I too thank you for your gracious words.  They make me feel important and that somehow, I help this rotten process.  I have missed some of your posts and didn't realize you had grand kids or RA.  To me you are a Joan of Arc figure.  Slender, tall, reddish hair.. maybe short or shoulder length.  Strong limbs.. Yes, I do this kind of stuff.  I imagine how everyone looks and lives.  My buddy who has left the boards turned out being asian. Never would have pegged it.  You started this support group and reached out to me all those months back to comfort me.  I could hear concern in your words for yourself but also this strength.  Somehow I pictured you a surfer or boogie boarder who loves the energy of the water only to be trapped inside your house.  I even imagined when you go to PT, that some how that meant you were an athlete trying to get back to sports.  Did you say one time the sprinklers came on and the sound had you cowering under the covers?  Someone said that.  You live alone thru this?  Yup, Mighty Warrior.  I had you pegged right.  So wonderful to know you were a Montessori Teacher.  Laughing because my son does that freeze thing and then looks up at me with wet pants.  I ask him, 'Why didn't you go in the potty?".. He says..'Because I didn't' with a frown on his face.  I don't get mad.  I fully believe you will be helping in your grandson's class.  It sounds trite I know, but looking at where we have come from to here.. why would the progression stop, right?

Be encouraged for your appointment today.  Go and come home and relax.  It's just a check up.  We all need to get a check up.  It's a good thing.

 

Beulah - I don't know if I am overstepping here, but I read your signature and it says you healed after two years from your first round of benzo.  Obviously you went back on, but the healing after two years.  Were you 100%.  To have that knowledge that healing is going to come must be powerful.  Is it worse being on them again or is the recovery the same?

 

Jenny - I am glad you are migraine and head pressure free.  So you and I are on the same page when it comes to getting up and sleeping.  It is what it is until it isn't.  Our sleep is important.  I didn't want to sign my kids up as crazy as that sounds.  I go back and forth between wanting them here and wanting to get personal stuff done.  Somehow during this vacation I want then here with me.  I will be glad to get some pure window hours back.. waiting, waiting..

 

Nova -  Did you get any sleep?  I don't do a great job at managing the household, but I will take the kudos.  I do look at things different right now.  Kids at home means messy house, stuff half done.  My husband said, either be a great house keeper or a great mom, but try not to live with one foot in both worlds.  I'm trying!! 

 

Have a healing day everyone.  I am driving an hour away for water play...eek!

 

MommyR

[[be...]]

Coop, I was in bed for two months straight because the groin pain was so bad. A lot of days I can't sit without pain. The saddle region is so so sensitive. I really don't think there's anything the drugs won't attack. Hope your saddle pain gets better.

[[li...]]

Hi everyone, I'm so proud to be part of this wonderful little thread! mommyr great to read your posts. Coop, jenny, beulah, nova,peace, drew -- sorry to hear that you are all struggling today. I must admit that I am struggling a bit too. It seems that the sadness from my brothers absence is somewhat weighing on me. Its not a deep wave and I am trying to figure out if its a wave or just plain life. I do not have the overwhelming feeling of dread although I am struggling with bits and pieces of that dread appearing. I finally said " If its a wave , so what!" and that has helped a bit. This brother thing has caused tension with my wife too. Complicated.I will let you all know where I end with this incident but I am on the line here. Its funny but when I feel bad I have less of an inclination to hang around the boards. I wonder what that is all about?

 

Life

[[No...]]

Good Afternoon ... Evening .. Morning ...

 

Well got them planters built ... more all over exercise than I have had in many months ... feels okay ... kinda stiff and sore a bit ... but hey ... when you wake up those sleeping tendons and things they might be a little grouchy ...

 

Take Care.

[[Co...]]

...Oh my goodness....another window today...I can not even believe it!!. My baseline was a little shaky this morning when I got up...and it morphed into another window...smiling at the dog window. I think this is the first time since April that I have had a window within a day of the last window.. I am stepping into month 9 on Sunday. All of you 6/7 month buddies ...stay strong it does get better. ..I just wish I could shine this sun on every single one of you.

.      My physician 's appointment was great. My pdoc gave me so much encouragement for getting this far with recovery. He says that he does not often see people getting completely off.  That most can not do it and end up going onto another similar medication ( we have all heard that sad story). ...So we should ALL pat ourselves on the back and know that we are succeeding at a very difficult endeavor. He is pretty benzo wise and acknowledges that w/d requires at least 12-18 months. He does not ever try to get patients on another medication if at all possible.

.......Hold on my friends we are all going to get our lives back..and our smiles...and our joy.

............sending love to every one of you. Thank you so much for all of the support and encouragement. .. I could not get through this without you....coop