6-12 month thread....

[[li...]]

Life and Coop-

Roller coaster. I am on it. I'm having mostly very manageable days. I had 6 window-like days, mild symptoms, fine. For the last five days I've been cycling in and out of a variety of awful symptoms. I'll get maybe 12-24 hour breaks before the next wave comes in. I slept deeply for 8 hours and woke up in sheer terror. I feel sick, I feel terrified, my anxiety and intrusive thoughts are immense. Yesterday I was fine. I hope, Life, that your theory on rapid cycling in and out of waves is correct. I hope this is a sign of healing.

I'm tired and I'm scared.

 

Peace2

 

It is totally what happened to me. First couple of months big waves with some windows. Then 5-6-7 months rapid cycling ( which scared the shit out of me)! I felt like unstable as crap. Then 8th and 9th months bigger windows with some waves here and there. The waves were not as deep in 8/9 months. Just what happened so far to me. I do see a pattern. Makes sense that rapid changes would be the case as the brain fights to stabilize.

 

life

[[Fr...]]

I like that theory LIFE.  So glad you're feeling good!

 

Lisa

[[be...]]

Hi all,

The bad wave is gone,whew. When I read all of your posts I get so excited because I can read about your healing that's going on. Even though you might not feel it, I can read that you are all changing for the better.

If you are keeping a journal go back and read your notes, you'll see. Just like my nerve pain, when I have a wave I will swear that it's not getting any better, but then I look at my notes and last month I was taking Tylenol everyday and more when in a wave. I don't take Tylenol everyday now and I rode out this wave with just a few. The waves are getting easier but we forget how bad they use to be as we heal.

I still have fear of the nerve pain because I'm scared it will get out of control, but then I look back and I realize the pain is so much better.

Next month I will be a year off and I know I still have a long way to go but I'm not rushing it because I now know I have to go slower to allow for healing. I was putting to much pressure on myself to heal.

The waves will get shorter and the further out you get it seems like the faster the healing goes.

Healing is happening, please don't believe the benzodiazepine lies.

Many prayers to all of you, you are all so brave and strong.

Love and hugs

[[Co...]]

Free and Peace...I am on the same carnival ride.  ...3 days ago felt as though I had never taken a benzo in my life...no s/x ..none. The 24 hours before that..one of my worst waves...14 hours of near panic fear. Felt exactly like acute all over again The past 3 days...cycling from sunbreaks to acute s/x ...in the same day...sometimes in the same hour....I am starting month 8 on Wed so I am hoping Life 's theory holds...bumpy but windows closer together. ....Free,  I have never had a 6 day window...yay!  for you ...I am trusting the process..on the ride,  but someone needs to pull the lever to stop this and let us off.

....I went shopping this morning...complete d/r d/p...brain electric zaps ( they scare me ) and manageable anxiety...as uncomfortable as those s/x are,  last year I couldn't go shopping without white knuckling all the way through. ..so I am taking that as progress.

.....We seem to be in the same space ...having some days like acute, at the same time some s/x like sleep and intrusive thoughts are getting better....I am in complete desperate hope that in 2 more months the 'acute ' like days will be much further apart.

.......thinking of everyone...we are one day closer.....coop

[[Fr...]]

Great to hear from you Beulah!  I'm glad that last wave is past now, for you.  I have been having a better day too and do see what you mean.  I looked at an old post that came up and saw what you talk about - healing and improvement.

 

So happy to hear the nerve pain is easing up.

 

I'm still hoping I can eat cake and ice cream one day again.  Can't yet, one tiny cup of ice cream precipitated that last wave and it wasn't worth it - no way.  Even the hubby said, no sweets at all until you've been healed for a year - as he eats his cookies

 

Lisa 

[[Fr...]]

Coop - I'm sorry your window didn't hold for longer.  It IS good news though that you are doing way more than a year ago.  We really have to chart our days to see how much we have progressed.  I write everything down on my day planner and keep all the pages so I'll believe I had windows when feeling awful.

 

You definitely sound chipper:)  Keep healing and feeling better.

 

We all will get through this.

 

xo,

Lisa

[[Ha...]]

Here I sit on the couch. I have gained 7 lbs! OMG! SO now I have this metallic taste in my mouth AGAIN and joints hurt. My calfs are hurting and my wrists, I need to go to the store but I am to lazy. All I Want to do is sleep and do nothing! This is not like me. I am rally having a hard time. Coop you have one day more free than me, I thought for sure it would be allot easier than it is now. BOY I never signed up for this!!!

 

HUGS TO ALL WE WILL HEAL!!!

HAPPY! :tickedoff: :tickedoff: :tickedoff:

[[He...]]

Hi Friends!  Whew, I have finally gotten back home from a week long trip for basketball camp with my husband and daughters' team.  I am not able to log on from my phone, but I am able to read as a guest so I've been keeping up on this thread.  I know that there have been some VERY tough days for many, but I can see the healing that is happening from your words.  As for me, I have been doing pretty good, with only a few waves throughout the week that lasted maybe 30 minutes at a time.  My waves at 2 days shy of hitting the one year mark consist mostly of feeling like something is wrong or off, some anxiety, some nausea.  Today has been a bit wavier, probably because of the relaxing after being on the go for the week.  I am struggling with nausea and some surges of anxiety, but it's not unbearable.  Waves are considerably less at 12 months out!  I am feeling some loneliness with my family all out doing different things this afternoon, but it's not turning into depression like it did a few weeks ago.  I have noticed that it is getting easier for me to be by myself.  I did not do well with that before, and because of my job and my girls' sports schedules I wasn't much alone.  It's nice that I'm able to begin to feel comfortable being alone again!  I used to enjoy being by myself a lot.  I was nervous about the nighttime situation while at team camp because I had to sleep in a little dorm room by myself.  We were only in there to sleep, basically, but I was worried that I would wake up in the middle of the night in a panic.  It didn't happen and I was able to sleep without any anxiety.  Another marker of healing because I would have been freaking out a few months ago. 

 

Whoot, WOW!! Great job on not taking that valium!  That is a true sign of healing, right there. 

 

Lisa, Hang in there.  Months 4 and 5 were terrible for me.  It has gotten SO much better and it will for you too.

 

MommyR, I also had low D and was prescribed 8000u per day for 8 weeks.  Coincidentally, symptoms of low D can be increased anxiety and insomnia.  Both of these things improved, especially the insomnia, after I started supplementing D. 

[[Co...]]

Hi all....a question about head zaps ( feeling of electrical shock ..or momentary burn in my head). I had this once in awhile early on while taking ativan and infrequently during acute. Today I had a few in a row. So of course now I am anxious about them

...Is anyone experiencing this still...just need a little reassurance to arm myself with against the Benzo voices. ...thanks dear friends....coop

[[Ha...]]

Coop I had several last week!!! We are the same time off seems were about the same!!

[[Co...]]

Whew!!...that 's a relief!...not that I want anyone else to have them...do they scare you too?...I am still so vulnerable to health fears..I think that is going to be the last one to let up for me. I so appreciate your reply.......

.....Happy, we have been so similar in s/x and progress from the beginning. I am thinking we are both going to be in a such a good place in two more months. ....thanks again Happy...really helps....wishing you big sunbreaks....coop

[[Co...]]

Happy...I have been laying around all afternoon too...and am having shin pain ....still so much better than a year ago while still tapering....you cant get the energy to go to the store...I cant get the energy to go to the kitchen and heat up soup...We would be great roomies in the Benzo Healing Abbey...lol

......feel better Happy...coop

[[Fr...]]

uhhhhh guys - I keep going in and out of waves and windows and am sooooo tired.

 

This morning, awful internal anxiety until, about noon-ish, during all that a bike ride and eating breakfast helped but it was still there and awful, by noon or one it lifted and most of the afternoon was fine - some moments were a wide open window,

 

now tonight, took another bike into town and ate dinner, felt something coming on, took another bath and on the couch the nerve stuff, head pressure, tinnitus and internal agitation is severe again.  I feel like jumping out of my self.  I'm scared the tingling head pressure and tinnitus will get worse again.  I really don't want to keep taking Elavil and get addicted to that.

 

This is so hard.  I thought I was over this intense stuff.  For a few weeks there, matters seemed a bit improved.  What is going on?  I hope this leads to a way better baseline. 

 

Lisa

[[No...]]

This is kind of a summary ... I jumped the end of Oct last year ... long, slow taper ... all through taper I was on the "rollercoaster" ... constant "wave" (I used the 1 to 10 scale where 10 is screaming, 6 to 7 is loud, 4 - 5 is moderate, etc) running 6 - 10 ... until mid Jan this stayed the same ... then I went into I believe "acute" which lasted until mid Apr ... constant 8 - 10 ... unrelenting ... then things suddenly dropped to 3- 5 with cycling up 7 - 8 ... so this breaks down months 1 - 3 no real change from taper, months 4 - 6 acute ... months 7 - 8 improvement ...

 

I suppose this shows a significant improvement in my baseline ... based on my one and only complete window a couple of weeks back I would say I am 40 to 60% along the healing curve ...

 

The last two months have seen the "cycling" grow shorter ... hours rather than days ... lots of respite ... I would say that none of my "symptoms" have completely disappeared ... they still take turns showing up and going away ... rather I would say the "tone" of my experience of the symptoms has significantly improved ... I have not had a bout of "I can't take this anymore" ... "I need help, right now" ... "I am not going to make it" ... all the benzo lies ... for about 2 months ...

 

What I am experiencing now is the "limbo" syndrome ... yes, more waiting, but a lot more comfortable, no "distress" ...

 

This biggest thing for me right now is my short "stress" fuse ... almost like my startle response ... anything, anywhere, anytime, can set off a large stress response if I do not catch it right away, turn away from it, shrug, and let it go ... I am calling this "stress startle" ... for those familiar, the exact opposite of Benson"s relaxation response ...

 

This is "mental" work ... I am aware of it ... so I have choices ...

 

Hope this helps a bit ...

 

This is damn hard work for each of us ... unrelenting ... and it gradually gets better ... this "phase" changes I experienced were not dramatic, things for me just gradually changed and my awareness caught up with the changes ...

 

Take Care.

[[Fr...]]

Nova---thank you for that description---it really does help and gives me encouragement.  I am mid month 5 and just have to hang on till this eases up.  I will be happy with an easing up at this point and then waiting if it's a bit easier which it must become here soon.

 

Thank you, and I'm glad you're feeling better, 60 percent is really good - you'll be there soon,

Lisa

[[No...]]

Lisa ... you are in a "cycling" place ... and it is confusing and very distressing ... I am in it as well ... not right now ... but have been in and out all day ... as you mentioned you do feel there has been improvement ... and there has been ... I have no "solution" for this cycling ... just finding whatever I can that soothes or distracts me for a while ... I do not know Elavil ...

 

Are you able to get into a place where you can just "slow down" ... exaggerated slowness ... the tea drinking ... the raison business from mindfulness ... moving into a "sensory" place for a while where you distract from the cycling ...

 

I am here for a while ...

[[...]]

Thanks Nova, that's a great summary, I appreciate it!!

[[No...]]

Lisa ... the mindfulness stuff doesn't "fix" anything ... it will act like a distraction ... moving your focus away from the cycling for a while on to something else ... on to something else that is sensory ...

[[Fr...]]

Nova - I finally had an easing up while watching a movie.  When it's bad it's intensely bad.  You mentioned earlier that you are out of the - I can't take this anymore phase.  So even though you are having cycling, is it less than in intensity for you?  The head pressure is bad on and off and burning happens in my nerves.  Then it goes away and on and off.

 

Elavil is a tricylic AD that has been around since the 1950s I think.  It's used for nerve pain, prn at low doses.  I only use it when it gets really bad.  Other people here use it, but I worry if used too much it gets addictive to the body too and could cause wd.  Doctors say it won't but who really knows.

 

Thanks for you help.  I looked up the relaxation response and it helped a bit.

 

Lisa

[[...]]

Lisa, I'm so glad to hear that the symptoms let up!!

 

I hope today is wonderful!!

 

Come on, we're on the same timeline...time for us to be healed!!! I'm SOOO ready!!

 

[[wh...]]

Thanks everyone;' Hope you are all having a good day.  Your thoughts and concern mean so much....no one else understands this hell.

I had a headache and some body pain but fear was not debilitating.

I understand the pacing and racing thoughts you all talk about....this acute phase is horrible.  I try to just go about my daily life but there is always this constant fear and worry about everything.  My brain is so scattered; my feelings are not clear;......does it stop soon I just need to be able to sit quietly and feel some peace.  My emotions are so blunted and confused. 

 

I had a busy day yesterday; went for a run; went swimming; (had to overcome my extreme fear of water) but I did it....I floated..

Wow.  I wasn't going to let all of this get in my way of living life....this is not something you can just think your way out of tho...

 

So I had a good day; the worry and fear were there but somehow not at the forefront....I laid down to sleep and I couldn't ...

intrusive horrible thoughts and scenarios would not leave me alone.

What the hell....I thought maybe I had progressed and things would be ok...but here I am on the couch shaking and confused.

Is this normal for withdrawal.  It's relentless.

Love and strength to all of you. 

I'm sorry to be a downer....I have faith that we can all get through this

 

[[...]]

Whoot, my prayers are with you!!

 

Just wanna point out that I "never" liked roller coasters....and I still don't! Could someone please stop this "ride" and let me off!!!

 

Oh, and by the way...I want my money back! I feel ripped off!!!! 

 

[[Fr...]]

Having a rough morning here too - awful internal anxiety.  Off to church.  I will pray for us all to feel better real soon.

 

Lisa

[[...]]

Sorry Lisa! I'm saying a prayer right now!

 

Feel better!

[[No...]]

Lisa .... yes, the intensity level is lower ... as I experience it ... I do not feel so "lost", "helpless" or "tangled up" in the symptoms ... I feel "grounded", more like I am "watching" this go on ... this does not "fix" anything ... the process is still happening ... something like I have "changed the channel" from "suffering me" to "healing me" ... sort of like I am watching the "rollercoaster" rather than being so terrified "riding" it ...

 

Take Care.