12-18 month support

[[Gr...]]

Green, it kills me that you are not buying tickets ahead now. ..I am so sorry.  Yep.  it breaks our backs and spirits. Man, I hope you DO NOT get the cough with the breathing.  I don't have sore knees...is there anything that benzo doesn't attack?

.Someone who goes to school with my daughter who gets frequent bronchitis always carries Altoid peppermints with her for compromised breathing...she says they are so strong that they open up her breathing...worth a try.  .they are strong enough to wake up the dead...

....Green, I can't tell you how sorry. . and mad I am that you are feeling all of the physical sx and not feeling well...onward to month 24....we just have to keep living our lives ....however marginalized they are right now...

....Thanks Green , here's hoping everyone gets some moments of ' better' tomorrow....coop

 

Coop, after an awful night, tossing and turning, mad, mad vibrations, today is better.  I'm trying so hard to get some of Nova's zen, but I'm a little shaky, wobbly, scared really that the wave is coming back.  We will get our sea legs, we will.  we've dealt with worse,  as you said, we have to figure out the terrain.  and we've done that before.  it wasn't pretty, lol, but we did it.

 

No, the shows I have, as I said, I have the tickets, so I'm pushing.  but it's too much.  I like it when I'm sitting there watching, most of the time, if I dont' get symptoms.  but the getting to and fro is taking a toll, I don't have the energy.

 

There are still things I can buy on the same day, last minute stuff.  otherwise, I'm not making extra plans for now.  It's enough to do what I have to do, therapy, food shopping.

 

Hopefully things will settle down and we can adapt to this new normal, and hopefully the waves will be less intense.  These new symptoms seem very different and at the same time reminiscent of year one.  I remember those crazy vibrations and wildly tossing around in the bed all night, even though I was so tired and so much wanted to sleep. 

 

Morale is low!  We need a success story!

 

 

[[Gr...]]

Good Morning Folks ... slept well ... woke up with the congestion and everything else seems to be still sleeping ... hope it stays there for a while ...

 

Coop ... don't worry about finding that info ... I think we have pretty well covered it here ... it seems to be just another side effect cycle and it will pass ... sounds like you got good help from that doc ... what was said makes sense to me ... you are doing well ... it just doesn't feel like it right now ...

 

Green ... I don't get anything in my kneecaps ... my hips go wonky from time to time ... just something else that shows up and then disappears and comes back for a visit once in a while ...

 

Have a good Friday everyone ... 

 

Hi, Nova.  I've got the wonky hips.  I'm sure the knees will pass when the hips do, lol

 

That congestion?  I get it every night before I go to sleep.  I get all stuffed up.  I thought it was allergies from the change of season.  But then I noticed it only happened when I went to bed.  and it's very uncomfortable. Jenny complained of it, too, and she's in Las Vegas, where there's not too much pollen.  so there we have another off the wall baffling symptom!

[[Gr...]]

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

 

Coop, I am feeling better today, thank you for asking!  But what passes for better is not anything near a window.  It just means I'm not in an anxiety wave, and I'm not fighting the desire to stop the car on the way to the store and take a rest in the back seat!  or spending the whole day on the couch dropping from fatigue.  those are my two wave states now.

 

don't get me wrong, I am very, very grateful for the break.  got my hair cut.  did laundry.  I'm grateful.

 

How about you?  How is the breathing?  The cough?

[[Gr...]]

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.

 

Sky, I'm sorry you're struggling with anxiety.  Seems like it's going around these days.

 

The memories are really coming back, aren't they?  I'm starting to remember tolerance also, and yes, it was horrible -- really criminal, because it was so unnecessary.  that's what upsets me the most, I was so sick and it was entirely preventable, I just didn't know.  Like a Greek tragedy.

[[Gr...]]

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.

 

sorry to hear food is still doing you in.  I relate. Had a small piece of a brownie and went right into palpitations. Is it the sugar or the chocolate? 

[[Gr...]]

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

 

Drew, thank you so much!  Just what I needed to hear.  I've been swearing on a stack of bibles it's two years, and I needed a little reassurance.  Thank you so much.

 

Also, interesting info on the ulcers, treatment with antibiotics.  I a conspiracy theorist, though.  I think the medical community is slow to change because it might cost them money.  I think if you follow the money, it starts to make sense.

[[Gr...]]

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

 

I just reread this.  Drew, bless your heart.  You've done this before.  When there's a whole lot of weeping, wailing, suffering here, you've gone foraging on this site and brought home some very, very hopeful stuff.  Thank you again.

[[Co...]]

Hi Green, ...well this rickety old row boat is about to fall apart plank by plank....hop on in....Nova and I will row you for awhile. ....I am so sorry you had a crappy night.  Yep, I am looking for some of Nova's zen too....maybe he will teach us...

....This is very much like taper and acute. Beulah says she is scared every day and looks at it as....life in healing.. her life for that day....Life in healing.  She pushes on days when she feels like it and listens to herself when she doesn't and stays quiet.  That resonated in me and helped me find some kind of center again in the chaos of this wave. .  Nova rolls that way too. I am with you.  This second year stuff is a different w/d than what we have been doing. Turned our sense of direction completely upside down ...

  ..You are so  strong in your knowing that everything sx wise is w/d.  ..If we can just crawl our way to month 24 with some reliable healing from this wave I think I could go the distance.

....I hate to hear that your body pain is back. I can't imagine you taking naps in your car on the way into see the shows.  You are made of steel ....I have to take a nap on the way to the kitchen.. ..Here we all are bedraggled, worn down and worn out.  But we are still putting one foot in front of the other...and rowing together...This won't be our lives forever...but it is today so all we can do is do the best we can with what we have in front of us.  I will tell you this...I have seen cancer recovery support groups that are not as strong and tight and compassionate as this group. As you said to us so many months ago.  " Nobody gets left behind".  ..Hoping that you stay on top of this one...Nova and I will row you across this one...coop

[[Co...]]

Drew, I have to tag on to Green's comment....the success story you posted was a wonderful boost...it gave me a little more ground under my feet....thank you so much for posting it..  coop

[[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.

 

sorry to hear food is still doing you in.  I relate. Had a small piece of a brownie and went right into palpitations. Is it the sugar or the chocolate?

 

I would say the sugar and chocolate...chocolate has some caffeine....but white chocolate doesn't...lol.

Just a little maple syrup sent my heart racing...but I won't keep trying...I'm gonna win this race..don't know when...but I will....we all will.

[[dr...]]

:smitten:

 

 

There is also another component of chocolate which can rev you besides the caffeine. .  I'm able to drink three cups of coffee a day now but a few squares of chocolate and I'm wavelike.

[[je...]]

Drew, thank you for posting that success story. I think its so crazy that within a few months time everything changed for her. Geez, I really hope that happens for all of us soon. I had a much better day today, got a lot done and even went and got my hair done-- I actually enjoyed my conversation with the hairstylist instead of my normal just wanting to get the heck outta  there. My head hurts now though, lots of pressure. Does anyone know what causes the pressure? I heard its excess glutamate? Anyway, today was better-- thankful. Jenny

[[be...]]

Jenny, glad your feeling better. Yes..it's so nice to read the success stories..they fuel us with inspiration.

Sounds like you had a good day with getting your done and carrying on a conversation with the stylist..you enjoyed it..hmmm..I would say a good healing day for you.

 

I don't know what causes the head pressure but I can't hardly remember a day without it...some days are better than others...when it's really bad I get off balance...excess glutamate..makes sense.

 

So happy you're over that wavy hump!! Hugs

 

[[be...]]

:smitten:

 

 

There is also another component of chocolate which can rev you besides the caffeine. .  I'm able to drink three cups of coffee a day now but a few squares of chocolate and I'm wavelike.

 

Hey drew, what else besides the sugar and caffeine?

[[dr...]]

From an article....

Though chocolate is known for its ability to increase levels of the calming neurotransmitter serotonin, it also contains small amounts of a compound called phenylethylamine, which acts like an amphetamine, stimulating your brain cells to release dopamine. Tyramine, a compound in chocolate that is derived from the amino acid tyrosine, has similar dopamine-promoting effects. These substances may be more concentrated in white chocolate, which increases dopamine levels significantly more than dark chocolate, according to Rodolfo Paoletti, coeditor of the book "Chocolate and Health."

[[No...]]

Good Morning ... well ... that was a "long" night ... I shut down early and woke almost every hour ... slept in between ... feel like I have been wrestling all night ...

 

And ... I am no longer a "teenager" ... completed month 19, starting month 20 ... let's see, the literature says that the brains of young people do not fully form until they are in their mid 20s ... so I must be getting close ... 

 

Gonna walk down to the grocery store with my buggy ... should be back soon or by Monday, whichever comes first ... 

 

Hope we all have a quiet weekend ... 

[[Sk...]]

Good Morning ... well ... that was a "long" night ... I shut down early and woke almost every hour ... slept in between ... feel like I have been wrestling all night ...

 

And ... I am no longer a "teenager" ... completed month 19, starting month 20 ... let's see, the literature says that the brains of young people do not fully form until they are in their mid 20s ... so I must be getting close ... 

 

Gonna walk down to the grocery store with my buggy ... should be back soon or by Monday, whichever comes first ... 

 

Hope we all have a quiet weekend ... 

 

 

Happy month 20 !  :happybday: :happybday: :happybday:

 

You are leading our little team out of darkness. I believe it was you who came up with this image, way back when we were young and worry free  in the 6-12 month thread ! 

 

What you said about young people's brains, might explain a thing or two for me too, Michael. 

 

Wishing you a lot of healing. 

 

 

 

 

[[Sk...]]

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

 

I just reread this.  Drew, bless your heart.  You've done this before.  When there's a whole lot of weeping, wailing, suffering here, you've gone foraging on this site and brought home some very, very hopeful stuff.  Thank you again.

 

This story is amazing, thanks Drew.

 

Seeking sanity, has my same symptom of trouble writing. Plus his timeline fits ours to a T. Very encouraging. Just reposting it, it can' t harm anyone to read it over. 

[[No...]]

Hi Jenny ... glad things lightened up for you ... this stuff just comes and goes until it is done coming and going ...

 

Be Well ... 

[[be...]]

From an article....

Though chocolate is known for its ability to increase levels of the calming neurotransmitter serotonin, it also contains small amounts of a compound called phenylethylamine, which acts like an amphetamine, stimulating your brain cells to release dopamine. Tyramine, a compound in chocolate that is derived from the amino acid tyrosine, has similar dopamine-promoting effects. These substances may be more concentrated in white chocolate, which increases dopamine levels significantly more than dark chocolate, according to Rodolfo Paoletti, coeditor of the book "Chocolate and Health."

 

Wow..I never knew that..thanks for sharing.

[[Co...]]

Nova. Wishing you a much better month 20.  Hope it brings you reliable healing.  Have a good time at the grocery....bring home some dark chocolate for your birthday.  What are you cooking today.. ?...Have a very good day Nova.    coop

[[Co...]]

Sky.  ...We can not see that post too often.  Such a hopeful post.. ...thank you for reposting it.  Great to wake up to.

...How is your day unfolding?...Wishing you  a beautiful sunny Italian day ......coop

[[be...]]

Nova- Month 20

Now that you're not a teenager any more..you might need a little help to the store🐴here you go..a horse to help you along the way..this is a temporary horse to help you get back in the saddle again 

Enjoy your day!!

[[No...]]

[move]Giddy - Up  [/move]

[[mr...]]

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 ... 

 

Boom! 

 

Nova, Jedi Master of Words

 

Mrs.