12-18 month support

[[Co...]]

Green,.  Yes.  How can these drugs continue ue to be prescribed when they make us so sick for so long?. My doctor is very suportive...but he does not agree that w/d can last 2 years  however he accepts that I do.

.....I know that every drug tracks thier adverse reactions reports and there is that national site to report adverse reactions to any drug....yet they continue to be some of the most frequently prescribed drug. .

....I read in some research that the manufacturers of one of the benzos...maybe valium buried some of the testing results that indicated how dangerous benzodiazapine is....and then re-wrote the research....I am sure pharmacy makes huge unbelievable profits on this stuff . And most doctors drink the kool-aide...not believing that they damage people

  Hope you are feeling better Green.  ..coop

[[No...]]

Hi Coop ... how are you doing today? ... hope you got some rest ...

 

I went down to the market on the bus ... glad to be home ... cool and rainy out there today ... things haven't tripped the lousy meter yet so I can take that today ...

 

Hope you have a quiet day ... 

[[Sk...]]

Hi ... having a lousy day ... croaky throat ... swallowing misfiring ... and air hunger ... all the usual culprits these days ...

 

So ... I have given up on Wednesday ... will get through til bedtime and try again tomorrow ... the only good I feel today is that I am one day closer ...

 

 

Nova, what's up with the swallowing?  You say misfire.  Mine feels like I get nervous when anything goes down and throat tightens up a little?  What is yours?

 

When I had trouble swallowing, I noticed a connection with what I ate and taking aways some foods, helped diminuish it. I don't know if this applies to you guys, it's an awful symptom.

 

Sky, it is awful.  So far it hasn't happened enough times that I'm making connections yet.  I will keep that in mind.

 

Are you getting any relief on the fatigue?  poorly phrased.  do you have any more energy lately?

 

Sue, I am having my period so in these days anything can happen. My main problem hasn't been fatigue, I guess it will come back when the worst of my  period has passed. It's as if wd, prioritizes things ! 

 

I am starting to believe that in my tolerance phase, the saddest period of my life, I had started having many wd symptoms. I clearly remember having faux asthma, it was awful; I had to make a choice at times, either breathe or eat, but not the two things together.

 

Now, I have trouble breathing, but it's entirely anxiety, my lungs are free.

 

Have a quieter day everybody.

 

 

[[be...]]

Morning all,

 

Got up this morning feeling pretty good. I thought I would wake up to the jackhammer anxiety...I put to much garlic in the taco salad yesterday and was revved up all evening with anxiety.

We bought some nice buckwheat pancake mix yesterday along with some real maple syrup..had a nice breakfast along with some sausage this morning...the syrup isn't doing me any favors..I only used a small amount on my small pancake...sugar is still doing me in..along with garlic...be still racing heart.

 

I think I'll just go graze in the fields with the cows...these food intolerances need to take a hike.

 

Be Well.

[[Sk...]]

Coop--I realize you are completely resistant to my take on just about anything, but because I think this might help you or somebody who's following your story, I'll stick my neck out and recommend Cognitive Behavioral Therapy.  If your insurance won't cover it and you don't think it's worth paying out of pocket, try the cheap route and just buy Feeling Good by Dr. Burns.  He lays out the techniques of CBT in easy to follow stories.  His book has been the gold standard on this for many years.

 

Yes, you and the others in withdrawal really do have something medical going on, but you've had it checked and there's not much the docs can do.  Googling for more medical details is counterproductive.  CBT shows you how to dissect your own thought process and break the loop that keeps dragging you down over and over.  It should help you calm down about it and stop aggravating it.  I think this is what your doc was saying when he talked about learning to control it.

 

I'm pretty sure this is what Drew hinted his therapist was trying to tell him, too.

 

I'm really glad you're still posting and hanging in there.  When you said you were going to stop, I feared you were giving up and would end up reinstating, and I'd just hate to see all the healing/suffering time you've put it go to waste just when you might be on the verge of feeling so much better.

 

 

Coop, I really have to agree with Finally on this one. You have been to many doctors, and you just don't seem to get the peace or reassurance you are looking for.  There is always some new symptom popping up. You are running yourself weary. And each time you put yourself through the stress of having  a medication offered to you, and that is always unpleasant.

 

While you wait to find the right CBT doctor, hopefully soon, you could try to make do with some websites that offer support and online courses.

http://www.getselfhelp.co.uk/links2.htm

 

I had looked into these myself, but with my cognitive issues, I could not understand much of what was said.

 

Coop, I find you are going through a lot, hang in there, of course you would not reinstate. Hang in there, I wish I could take this away for you.

 

[[dr...]]

Green,.  Yes.  How can these drugs continue ue to be prescribed when they make us so sick for so long?. My doctor is very suportive...but he does not agree that w/d can last 2 years  however he accepts that I do.

.....I know that every drug tracks thier adverse reactions reports and there is that national site to report adverse reactions to any drug....yet they continue to be some of the most frequently prescribed drug. .

....I read in some research that the manufacturers of one of the benzos...maybe valium buried some of the testing results that indicated how dangerous benzodiazapine is....and then re-wrote the research....I am sure pharmacy makes huge unbelievable profits on this stuff . And most doctors drink the kool-aide...not believing that they damage people

  Hope you are feeling better Green.  ..coop

 

 

The medical community is very slow to change even when there is hard science to show a different plan of treatment is better.  For example, two scientists found that ulcers were caused by a bacteria?.  antibiotics can get rid of most ulcers now.  It took the medical community almost fifteen years to really start following that plan instead of telling people not to eat spicy food, reduce stress, etc....  So how can we expect thme to change when they don't ahve hard proof in front of them?   

[[be...]]

Coop, while I don't know much about CBT therapy is was recommended to me by my doc in my first withdrawal..I chose not to go that route because I felt I was to ill to participate in any kind of therapy...instead I decided to holdup in my house till I was healed.

 

This is hard coop...the hardest thing I've done in my life..I'm afraid you think you are being a whimp..that we are handling withdrawal better than you..we're not...this is hardcore suffering for all of us...you're not alone.

So many times I've told my husband that I can't do it anymore..but I do...every single rotten day I go through the motions of living a normal life...knowing their is nothing normal about my life...it's a withdrawal life that I have to live with until I'm healed.

 

Behind closed doors..I'm the biggest whimp...I've been humbled by this experience..but not brave.

Yes..we are all sick...withdrawal sick...but we are healing everyday and healing is hard.

 

Hugs.

 

[[dr...]]

Just a little bit of copy/paste of seeking sanity's post to reinvigorate some suffering buds...

 

 

Hi BBs,

 

I'm literally days away from my two year milestone and I have so many things to report but the most amazing thing happened today and I just wanted to share!

 

After repeated attempts over the past three years since I've been tapering (10 month taper, jumped in May 2013), I was finally able to work out at the gym today on the treadmill.

 

I have been so exercise intolerant during my taper and post-withdrawal period.  I have tried, at least twice a year during this period to go back to working out with no success.  Usually, any intense exertion would land me in bed for 2 or 3 days afterward.  All my muscles ached, as if I'd been run over repeatedly by herds of tiny reindeer and the exhaustion in the aftermath would be so deep, it was as if I had to use up my cells to run my body.  It crossed my mind frequently that I might have chronic fatigue/fibromyalgia, at the very least my mitochondria seemed to be very, very impaired.

 

Not today though - I hopped on the treadmill, did alternating walk/run sequences (4 min walk, 1 min run), 5 cycles in total.  25 minutes all in all.  No fatigue.  No muscle pain.  Was able to keep up without problem.  Got my heart rate up to 170 repeatedly without issue.

 

Those of you who may have followed my progress here from my sparing reports may know that I was too ill to even post during the first 18 months off the benzo/z-drug.  Shockingly - well to me at least - I became progressively more ill from months 2 to 16.  In month 16, I went to our local Daytox for a 6 week round of auricular acupuncture, 4 X per week.  In month 18, I got slammed by a really intense wave, with the emergence of crippling muscle pain particularly in my neck and shoulder.

 

Something happened in month 19 though - I got my cognitive powers back.  Suddenly I could write and talk and even post to support other BBs here on the boards.  Went for a further round of whole body acupuncture in month 21 and late in month 22, I had my first ever windows!

 

More windows in month 23 - some lasting entire days.  Now in the last half of month 23, I've recovered enough to work out at the gym without consequences!

 

This has truly been a miraculous day.  I'm so ready to post a success story and start (!) a blog on May 23rd, my two year anniversary.  I never thought I'd be in withdrawal, never thought I'd get so sick and become protracted in my withdrawal.  I never thought I would heal at some points in this process.  But here I am, healing, getting my life back, looking so forward to the prospect of designing my life as SeekingSanity 2.0.

 

To all those of you in the trenches, I just want to say that the best is yet to come.  If I can heal, anyone can.  Sending all my love and healing energy your way,

 

 

SeekingSanity

 

[[be...]]

Thanks drew, these recovery and healing stories are so important to us all!!!!!

[[He...]]

Hi Everyone! 

I'm taking a break from doing laundry after being gone all this week as a chaperone for middle school Outdoor School and wanted to check in, offer some encouragement.  Someone, I forget who exactly  , asked for more stories of people getting on with their lives after surviving withdrawal...so here is a bit of that.

 

I spent Monday - Wednesday hanging out with 50 6th, 7th, and 8th graders, including my younger daughter, at the Oregon coast.  It was a GREAT time!  I even got to watch as she tried surfing for the first time.    I slept in a room with several people, on an air mattress that would be flat in the morning, but I could sleep just fine (although I woke up sore from the darn air mattress  )....SUCH a far cry from the debilitating insomnia that I was dealing with before.  There were some chaotic times, but they didn't induce anything more than regular anxiety.  No panic, no triggering of a wave. 

Wednesday night I was dropped off in the city that my older daughter was competing in the state championship tournament for track and field.  I spent yesterday, Thursday, watching athletes from all over Oregon competing.  It was a proud moment watching my daughter up on the podium receiving her medal for placing 7th in the javelin!!  We got home late last night and I am spending today washing clothes and repacking so we can take off this afternoon to go down to Reno for a basketball tournament that both my daughters are playing in.  Whew!!  I have zero unnatural anxiety about all of this.  I only feel some slight nerves, almost more pleasant anticipation coupled with "I hope I get everything done".

 

I am not 100% healed yet.  I still have some physical stuff going on, mainly what I call "the squeezes". I sometimes get pressure and tightness throughout my rib cage and sometimes into my head.  It definitely seems to be in the cartilage and fascia, rather than in my heart and brain.  It will occasionally bring a feeling of boatiness with it, and I will still sometimes have the thought of "I may pass out".  However, it used to bring that horrible rush of panic and trigger complete health anxiety..... now I feel it, am uncomfortable and more focused inward, but I don't panic with it.  I will be very happy when "the squeezes" finally leave for good! The physical stuff seems to be the last to fully heal.

 

This is a long, hard path and there is no way out but through.  There IS an end to it, however.  I can be a witness to the fact that there IS an end to this path.  I promise you.  Just keep getting through each day and live your life.  I think it's important to do as much as you possibly can, to live as normally as you possibly can, in spite of the symptoms.  I truly believe that doing so helps with the healing process. 

 

Love to you all!  I suppose I need to get back to my laundry and packing. 

Big hugs! HH

 

 

 

 

[[Co...]]

Beulah...I love you...thank you so much for that... I feel lIke I am a complete idiot...

....I love what you said.. .This is my life until I heal...I think I am dying every day..  Riinstatement is not a risk because in so many ways it made me worse...You are right....2 months ago I could have gone to therapy....wanted to go to therapy.  Now it's back to getting the dog out and doing little things with my daughter.  And I feel like such a heel ...she sat with me for 2 hours at the pulmonologist's.  I have taken such a huge leap backwards..  but you are right.  This is my life.. I can only live it the only way I can.  And I am such a mess  ...I get up every morning and take my dog out and clean my house.. all the while absolutely sure I am 2 seconds away from a catastrophic health event. I know it's not rational.  I know the doctors are telling me that I am ok..  I can not control this except in the moment....sometimes for 5 minutes I am not analyzing my sx.  I just don't know how I got lIke this.  It doesn't matter how I got like this.  I have to see it through.  It's not even that I have to see it through ( who knows how long this will be) , I have to have a life with and in spite of it. 

    B, you seem to have a good middle of the road way of going about it... when it feels right you push a little. .. when it doesn't you follow your inner voice. ..Nova has that zen approach as well. 

  . Thank you so much Beulah for your honesty and understanding....everything you said is exactly where I am..

....Wishing you nothing but the best of days. . coop

[[dr...]]

great update HH!  I was just mentioning to my fiance even though I have had headache and migriane stuff all week there is no irrational fear or waves of anxiety with it.  oh...maybe an hour here or there but nothing I can't handle.  It is just a headache...ha...who would have thought just having migraine type symptoms could be better than the other stuff...

 

On another note....I left my phone in my car and walked to my workplace. I had to run back and get it. I relized then that it wasn't a "chore" to back and get it.  No walk of death feelings or anything making me feel like I didn't want to get up from my desk. 

 

 

HH-one question-not taking anything away from your daughter but since when do they give medals for 7th place?  what happend to win, place and show?

[[Co...]]

HH and Drew..  the healing stories are beautiful..  and we certainly need them here today.  Thank you so much for taking the time to post them.  ..

  HH.  You sound wonderful.  I bookmarked your post for further encouragement.  I am so so happy for you.  Love to you.  coop. 

[[He...]]

great update HH!  I was just mentioning to my fiance even though I have had headache and migriane stuff all week there is no irrational fear or waves of anxiety with it.  oh...maybe an hour here or there but nothing I can't handle.  It is just a headache...ha...who would have thought just having migraine type symptoms could be better than the other stuff...

 

On another note....I left my phone in my car and walked to my workplace. I had to run back and get it. I relized then that it wasn't a "chore" to back and get it.  No walk of death feelings or anything making me feel like I didn't want to get up from my desk. 

 

 

HH-one question-not taking anything away from your daughter but since when do they give medals for 7th place?  what happend to win, place and show?

 

:laugh:  I hear ya, Drew.  In this case, this is the State Championship tournament....so they give medals to the top 8.  Athletes had to qualify out of the district championships from all around the state to even get here, and then out of those competitors only the top 8 make the medal stand.  A regular tournament, I agree...but this was 7th out of ALL the 1A high school javelin throwers in Oregon.  ;D 

[[be...]]

HH..thanks for the update. You are really living it up...good for you..I must say I'm a bit jealous.

Keep living!!!!

[[Co...]]

Sky.  Thank you...No I will not re-instate...the rescue dose made my life miserable....You are very steadfast about seeing it through with sx until it's over...I respect that so much...I hope your day opens up to bright sunbreaks....coop

[[No...]]

HH ... great news ... thank you for the post and the encouragement ... yep ... the only way out is through ... and we are all getting there ... 

 

[[No...]]

Hey Coop ... here's a news flash for you ... you are not your feelings ... I hear you feel like a heel, you feel like a health catastrophe waiting to happen, you feel limited, you feel a prisoner to this process ...

 

Okay ... that's fine ... we all feel stuff like this ... and we certainly cannot control our feelings ... they are just there ... whatever they are ...

 

And feelings do not determine our reality ... our feelings are not in control ... they come up and they do their little dance and then they move on ...

 

And ... even though we may not "feel like it" very often ... we are strong ... we are resilient ... we are determined ... and for now we are sick .... and we are healing ... we are the survivors ... we are not getting left behind ...

 

So ... when you can, if you can, make an old coot smile ... keep telling us how you feel ... and then tell us a little something about Coop today ... maybe something a little kick ass, or funny, or stubborn, or determined ... something that tells me/us that this strong, passionate, loving woman is feeling her oats ... and is shining her light ... because aware of it or not - you shine your light for all of us here every day ... and ... kick ass might be a stretch ... and it would sure bring some smiles all around ...

 

As a dear Buddy keeps telling me ... Carry On ... 

[[Co...]]

Nova,...what a great thing to do on a Friday morning...to the market on the bus...I hope you found yummy things for the weekend...what are you cooking?...Beulah and I want to know.. your menus kick our appetites into gear.

....I am one tenth more sane this afternoon....sort of beat up from yesterday....laying low.  Getting brief moments of peace cycling in and out.  trying to build a fence around my mind.. ..writing on BBs helps me. ...I have had a bizzare positive thing happen 2 nights in a row...wake up at 3am...completely happy and peaceful...feel totally like who I used to be.  Go back to sleep....wake up in a cortisol rush and back in acute. It is not alot, but it's all I have right now...I will take it. . The pulmonologist was correct I think in his explanation and reccommendation to not talk and be quiet.. My cough seems less frequent and I am less fearful.. breathing and esophogeal spasms and chest tightness is better...

....Nova...how is your day now that you are back and scuttling around your house..  How is the swallowing thing?...

. ..carry on dear friend....coop

[[Co...]]

Nova....I just read your post ...wow...thank you so very much...How blessed I am to have such friends here....

....You are so right....it's only feelings. ...I think I might be finding at least enough ground for one foot.  I am finding that place in my mind where I can resolve to do at least some things as I would normally.. that fake it until you make it thing.....I know we all get 'out of our minds'  sometimes...you all just do it with so much grace...

  .My daughter wants me to go to a small BBQ this afternoon .I am going to go even if it's only for 10 minutes.. it means so much to her and she needs a different experience and image of her mom than panicked running to the doctor.. I promised her something healthy and normal today.

..You are dear Michael...we all love you here.  Your support touches me and has helped me so many times...love to you...coop

[[No...]]

Coop ... 

[[be...]]

Nova, please toss us a bone...what's on the menu...our tastes buds are waiting.

[[Co...]]

Beulah...for the first time in a week I had lunch. 

    sour dough toast fingers with honey and butter

....apple slices ....Gatorade...

.I am sure Nova has something much better going on..

.......coop

[[No...]]

Beulah ... one bone coming up ... hmmm ...

 

I just finished some oven baked fish with homemade hash browns with onions and some honeyed carrots ...

 

For you adventurist types ... how about waffles topped with a pile of fruit ...

 

Or ... grilled cheese and onion sandwiches ...

 

Or ... nachos with everything under the sun ...

[[Co...]]

Nova...oh my goodness.  Oven baked fish. hash browns..  sounds so good......oh, and the nachos. I think I do have an appetite.