12-18 month support

[[Gr...]]

Green ... will be finishing month 19 on Saturday ... after being woken up with a panic things stayed lousy the rest of the night ... had the chills for several hours ... and now just feel generally lousy ... guts and head pressure ... and lots of tightness all over ... and boaty ...

 

Probably another bout of benzo flu ... been having this a lot the last couple of weeks ...

 

Hope we all can find a quiet Thursday ... 

 

Nova,

 

the benzo flu has made a reappearance for me, too.  And I keep thinking of you, because you consolidate this mishmash nightmare of symptoms into that one words that says it all:  Lousy.  I keep thinking I feel lousy, and then I think where did I hear that before?  Nova.  which is one of the things I love about this thread and how we support each other.  Just knowing someone else here feels lousy is enormously comforting.  This is just way, way too hard to do alone.

 

So thank you for my word of the day.  Lousy!

 

 

[[Gr...]]

Good morning buddies..

...Well, I didn't really stay off the posts at all did I? ...You are all too unconditional and supportive ..you got me through a very bad terrible awful no good day...

.....I actually slept well this morning and woke up to a sunbreak this morning...still coughing, but...no cortrisol rush, no gloom/doom...no shaking fear.  no d/r...no depression....

..yesterday I wanted to give up...today ( right now anyway) I am ready to get up.  have some decaf and go outside with the dog....Wishing everyone a better day...coop

 

Coop, I might be as relieved as you are, that you finally got a break.  You were suffering terribly, my friend.  I am so glad today is an easier day.

[[Gr...]]

Hi Folks ... having a tough morning ... went for an hour's walk ... didn't help much other than to tell me I can walk ... 

 

Hard head pressure, bloated belly, the air hunger thing, and neck and shoulders so tight they are close to painful ... and full of knots ... and getting that anxious short of breath thing when I speak to someone ... and the cough ...

 

So, how is your day going? ... mine is pretty much in the toilet ... and of course the health fear stuff circling around like a pesky mosquito ...

 

Just keeping things "slow" so they stay in proportion ... I need to remember I have been in a lot harder places and they always fade away eventually ...

 

 

Nova, I hear ya.  I was there last couple of days.  I got a little break today, it broke.  The benzo gods took pity on Coop and me!  I was crying! :'( :'(  (I'm not kidding, my buddies!)  I've got all of that, except the freaking cough.

 

Hells bells!  what the hell is going on in months 18......until when?  does it stay like this until we heal?  WTH!  We need more info! 

 

I'm ranting, lol.  sorry you're not having such a great day.  I'm hoping this lightens up, Nova.  This is too intense to handle most of the time until month 22-24.  it's debilitating. 

 

 

[[Gr...]]

Siggy ... I see your light off ... hope you are getting some rest ...

 

Resting my eyes but no sleep will come. Heavy pulsing in my brain / forehead. Sorry you've had a rough night. Was in a decent waking trance until our boy cat started scratching at our closed guest bedroom door. Then he finds a plastic wrapper under the bed he wants to chew on and play with. Not sure what messed up my three day streak. Took magnesium for two nights earlier in the week. So that may be helping some. It just makes my skin burning worse.

 

Sorry you're not feeling great.

 

LOL...my damn cats are responsible for me waking up at least twice a night.  One sits on me and purrs...if I don't wake up she then gently paws my face...the other one starts mewing for some random reason.  When I call her she jumps up on the bed and stops immediately.  My question is why doesn't she just jump on the bed and cut out the mewing part of the ritual?

 

they want you awake.  they're awake, and they want you to be awake with them.

[[Gr...]]

Wonder how Jenny is doing.

 

Hey Green..I pm'd her a few days ago...she's struggling with some nasty waves and depression.

Said she'd be back after she gets over this hump...also said she's keeping us all in her thoughts.

Let's send her some love...in hopes she sees this.

 

Jenny..we miss you..hope you are feeling better.

Many hugs and healing prayers coming your way.

 

B, I'm glad you sent the PM.  I've been worried about her.  yes, sending her love.  this is so hard.  and Jenny has always been there for me, for so many of us.

[[Gr...]]

Nova, after 20 minutes outside, I am right there with you.  Exactly the same...shaking.. air hunger... ( in spite of inhaler)..cough and breathlessness when I talk...Hop on in my row boat....I will take an oar and we can do this together..so sorry Nova...If I lived in your city we could walk/not walk together.. My coughing is bringing me one mini panic after another..  so much for sunbreaks.. I am thinking of you Nova...love to you dear friend..  coop

 

Coop, the inhaler doesn't relieve any of my coughing ..but does help me get a deeper breath. I haven't used it for a while...it's more of a crutch...it also gives me anxiety.

I sure wish I knew more about this breathing and coughing stuff that attacks so many of us in withdrawal. I do know benzos relax our lungs...so maybe this is the way our lungs heal...such a mean way to heal though.

 

Beulah and Coop,

I don't have the cough, but I do have a lot of trouble getting a deep breath, like I need to stop and actually breathe, it doesn't happen naturally.  and when I just did it I coughed. 

I'm thinking it's mostly withdrawal, but there is a respiratory component.  My friend has real life asthma and during wd her asthma has been so much worse, so much harder to control.  so there's definitely something going on, on the respiratory level.  But, Coop, I think it will be okay.  Even this girl I know, her asthma is very serious, and she's getting better.

[[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?

[[Gr...]]

Yes coop, my breathing is improving..it's not everyday..anymore...it's more like a couple of days a week..worse in the morning.

Yes..year two is very hard..a different healing happening. I swore if I could get through year one I could get through anything..year one was more mental ..yr. two physical.

We're just going along for the ride..although not enjoyable...can't wait till we reach our destination.

 

I agree, B, in many ways year two is harder than year one.  I think the major thing is I was so out of it most of the time, the DP/DR and cog fog, and now I'm eyes wide open for all of this!

[[Gr...]]

Hi all,

 

Sorry I had to take a break, I haven't felt that sick in a long time--not just physically sick, but my brain felt very damaged. I still feel very off, I guess its the dp/dr. This whole process is wearing me down and Im not very optimistic as I used to be. I think we all need to see some positive changes to keep us going a few more months. I just noticed Im 20 month out today, I had to recalculate because I thought I was at month 21. Yipee, NOT! Anyhow, just want you all to know I love you all--and a big thank you to Beulah, Coop, and Green for reaching out to me during this rough week. Love, Jenny 

 

Jenny, I did your calculation last night, lol  you are two months less four days ahead of me. 

 

All I can say is you are not alone, not in the symptoms, not in being worn out.  This $hit is certainly rattling my cage!  Just wait for it to break a little, so you can get some relief.

 

If it's any consolation, I spoke to my friend the psych nurse, who is two weeks ahead of me, a hospital detox off Ativan -- she doesn't come here for support, she's handling it herself -- and she was in bed, freezing cold. She says it's good days, bad days. She's 62.  And she took ADs, she went to the doctor and got them.  As far as I can see, they didn't help, she's still going through what I'm going through.  My only question is, did they hurt.  Who knows. 

 

So what we're going through is not uncommon, there's us here on the 12-18,  there's people outside the forum.  We are definitely getting slammed very hard, no doubt about it. 

 

I'm having trouble being as positive as I was because my physical symptoms are horrendous and I don't feel well.  But when I'm not in a mental wave, and I'm not at this moment, I still believe the two year timeframe holds, I think we will all be mostly, if not all, healed at 24 months.  I think the waves will stop, and whatever is left will gradually get better over time.

[[Gr...]]

Nova,

you're three weeks ahead of me.  Did you notice any change at the 18.5 mark?  in the intensity of symptoms?

[[No...]]

Green ... I have to say no ... things just waxed and waned like they have been doing for quite a while ... sorry ...

[[Te...]]

Nova it was nice how you explained the healing process.....I want to believe your thinking......it makes sense.....but it seems so inhuman that no doctors understand or care of this ....the pain all of us on this forum go through just is so sad.....and I've found very little comforting remedies....to help control pain........hope you have a restful sleep....

TM

[[Co...]]

There is so much suffering on here tonight I don't even know what to say..  Please know that I am thinking of every one of you who posted . This just isn't right...This is not what we signed up for ...Nova, if I had one tenth of your zen and acceptance I would be in better shape.. Green, if I could push myself out the door to go do something I care about I would be more hopeful. Drew, if I could rein in my run away thoughts I would have less terror and more room in my mind for hope and positivity....I was all set to go in for my biofeedback and CBT consult.  They don't take my insurance ( they couldn't have asked me about insurance when I called in the first place?)......I will keep looking...I am really struggling to find that patience and ' go with it' and 'it is what it is until it isnt'.  Two months ago I was somewhat settled with the process....willing to wait it out...take each day on its own...but my sx were mostly mental at that time. All of this physical awfulness ,  chemical anxiety and raging health fear has totally thrown me out of being able to manage sx.  It turned ...dramatically at the beginning of month 17...Now I am frantic, swimming in health fear and can not find my center. .

....This not breathing and coughing thing has ruined whatever progress I had made.  ...I am seriously wondering if  I will ever be the same. ...

......We are in desperate need of a Healing Abbey.  and this thread is as close as we are going to get..  and a very fine close it is.  We are truly a band of warriors.. so glad I have this place to come to.  Most of us still have a few more months to go before we get to the place where HH was when she started feeling healed.  ...I am at least going that far...but moving forward for me is pretty rote.  like those runners in marathons who drag thier poor wobbly uncoordinated bodies over the finish.  But then they get up because they made it. 

....Well, what a rant.  Thinking of every one of you.  coop

[[je...]]

Coop, I couldn't agree more.. All the suffering is just too much. It seems all this started for me in month 15 and has not let up.. Coop, also I'm not sure what kind of inhaler you have but be careful because they can cause anxiety and speed up your heart rate. I was given one when I was in tolerance and was told I had asthma, the inhaler never helped me and just ramped up my anxiety. Does it help you at all?

[[Co...]]

Jenny I agree....I didn't want to admit to this, but my doctor called me this morning because he wanted me to see a pulmonary doctor ( I saw the ARNP over the last 2 days.. my doctor returned today and made an appointment with the pulmonary specialist..  scared me)  I did go. I know I am the biggest crackers pot on this thread..

.....My point  is....the pulmonologist said exactly what you just said.  Unless you are wheezing an inhaler in not needed...I was relieved

.....He explained to me how spasmodic coughing throws off the mechanism of breathing and how shortness of breath tells your body to cough...coughing throws off the breathing....loop loop loop.....it causes anxiety....anxiety causes tightness and constriction all through the esophogus, throat, chest, ....all that causes more shortness of breath and continued coughing....Mine is worsened by talking...we take in big breaths when we talk ..it gets trapped due to the irregular breathing and I lose my out breath.. He was a good doctor...he told me he could prescribe  benzodiazapine ( I spared him the w/d story as I didn't think he would believe me)....or he could prescribe talking only as needed and rest the loop until I didn't have as much anxiety about it. ...He then proceeded to say,  " I prefer not to prescribe benzodiazapine as it is dangerous....and you must learn how to control this until it goes away".  He was right ...if I am mostly quiet ...voice wise and anxiety wise ( Ha!)...it is much less frequent

.I am completely humiliated that I was yet again in a doctor's office....I really think I am losing my sanity ...really

....Maybe if I can heal from this breathing thing I can get centered again...or not....

....Thanks for posting that...the inhaler made me shaky ...so I am doing nothing for it except ibuprofen for all the chest/back soreness....and not talking...over compensating with way to long posts

...Happy to see you on tonight Jenny...thinking of you....coop

[[Co...]]

Nova, I can't find the link for that article on false dypnea...I will go through a few more posts tomorrow to see if I can find it....it was a good article, but it did have a few scary comments in it...Drew and myself shouldn't read it, but I didn't know it was going to surprise me with too much medical information. ...

....I saw a pulmonologist today .  The gist of what he said ( all good)  is in my post to Jenny. .As always Nova.. your zen , ' it is what it is until it isnt" ...and I would add, " and it's w/d".  is the voice of reason....He essentially said everything the article did...it's a loop ...it effects all the upper body chest and breathing structures...so your reflux sense about it is spot on

...onward....coop

[[Fi...]]

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.

[[Gr...]]

Green ... I have to say no ... things just waxed and waned like they have been doing for quite a while ... sorry ...

 

I thought so.  I know you would have told us if things got better

 

I'm struggling to find my stride.  the wax and wane is hard to adjust to.  and there seems to be mostly wax

[[Co...]]

FJ...I appreciate your post. Yes, I took a CBT seminar at the beginning of my taper. It was offered through my medical co-op....Through following Drew's posts about his success with CBT I decided to see a biofeedback and CBT therapist to actually work with over time...I plan to keep looking for one. There are a few in my city. The one I contacted has an excellent reputation. 

....I don't feel that I can reinstate as the rescue dose I had a few weeks ago helped me hardly at all and increased my sx.. so that's not an option...

  ..Thank you FJ.  I hope you are seeing good progress....coop

[[Co...]]

Green that's it exactly.  Losing the stride.  The terrain is completely different.  I absolutely can not find my center anymore.  Who has the compass? ..

[[Gr...]]

There is so much suffering on here tonight I don't even know what to say..  Please know that I am thinking of every one of you who posted . This just isn't right...This is not what we signed up for ...Nova, if I had one tenth of your zen and acceptance I would be in better shape.. Green, if I could push myself out the door to go do something I care about I would be more hopeful. Drew, if I could rein in my run away thoughts I would have less terror and more room in my mind for hope and positivity....I was all set to go in for my biofeedback and CBT consult.  They don't take my insurance ( they couldn't have asked me about insurance when I called in the first place?)......I will keep looking...I am really struggling to find that patience and ' go with it' and 'it is what it is until it isnt'.  Two months ago I was somewhat settled with the process....willing to wait it out...take each day on its own...but my sx were mostly mental at that time. All of this physical awfulness ,  chemical anxiety and raging health fear has totally thrown me out of being able to manage sx.  It turned ...dramatically at the beginning of month 17...Now I am frantic, swimming in health fear and can not find my center. .

....This not breathing and coughing thing has ruined whatever progress I had made.  ...I am seriously wondering if  I will ever be the same. ...

......We are in desperate need of a Healing Abbey.  and this thread is as close as we are going to get..  and a very fine close it is.  We are truly a band of warriors.. so glad I have this place to come to.  Most of us still have a few more months to go before we get to the place where HH was when she started feeling healed.  ...I am at least going that far...but moving forward for me is pretty rote.  like those runners in marathons who drag thier poor wobbly uncoordinated bodies over the finish.  But then they get up because they made it. 

....Well, what a rant.  Thinking of every one of you.  coop

 

Coop, maybe that CBT wasn't the right one for you.  That's one good thing withdrawal has brought, I'm a little more philosophical when the door closes.  I used to try to break it down

I do make the shows I already have tickets to -- although I've missed some on bad days -- but I'm not currently buying any tickets.  I'm back to where I don't want to make plans because the bad days are so bad, how I will feel is so uncertain.  And the magnitude of these waves, it's really so hard to push through, so maybe it's better to make fewer plans for awhile.

 

Yes, it's absolutely ridiculous how we're suffering, so many of us, on and off the thread.  you know, there are drugs like Celebrex, that a lot of people take and are fine, and a few take and have a stroke -- it doesn't matter how few people get strokes, it's now considered a dangerous drug.  As many of us are this sick for such an extended period of time, two years, if there were a diagnostic test that could prove how we were sick, then we could sue, and then something would be done.  The whole problem is the "syndrome" label.  syndrome is one step from hysterical hypochondriac, it's not recognized in medicine, maybe a few doctors, but not really, I mean any syndrome.

 

Don't mind me, when I'm really struggling, suffering, I start getting mad and litigious, lol.

 

Yes, we are suffering.  hopefully we will get some breaks, enough to keep us going.

 

it's so weird, the mood, the mental, and the physical, symptoms switch on and off like a light.  crazy.

 

hope you're finding your sea legs.  Nova, I could definitely use some zen, I don't know where mine is.

 

And I'm coughing!  but I think it's a real cough, it feels like congestion that needs to break up.  It went from being kind of hot to pretty cold.  change in weather.

 

sleep well, all.

[[Fi...]]

I actually feel I've turned a big corner in the past month.  I'm at 21 months now from Xanax, 29 from Oxycodone.  SeekingSanity is 23 months and we are uncannily along the same path of healing.  Neither of us has really had these breathing issues you all describe, though, so unfortunately we can't say, hey, been there, lived through that, which is of course what everybody wants to hear. 

 

I think the main thing for both of us is that we have energy again...and optimism.  No way through this, but through it!   Hang in there, all.

[[Gr...]]

Jenny I agree....I didn't want to admit to this, but my doctor called me this morning because he wanted me to see a pulmonary doctor ( I saw the ARNP over the last 2 days.. my doctor returned today and made an appointment with the pulmonary specialist..  scared me)  I did go. I know I am the biggest crackers pot on this thread..

.....My point  is....the pulmonologist said exactly what you just said.  Unless you are wheezing an inhaler in not needed...I was relieved

.....He explained to me how spasmodic coughing throws off the mechanism of breathing and how shortness of breath tells your body to cough...coughing throws off the breathing....loop loop loop.....it causes anxiety....anxiety causes tightness and constriction all through the esophogus, throat, chest, ....all that causes more shortness of breath and continued coughing....Mine is worsened by talking...we take in big breaths when we talk ..it gets trapped due to the irregular breathing and I lose my out breath.. He was a good doctor...he told me he could prescribe  benzodiazapine ( I spared him the w/d story as I didn't think he would believe me)....or he could prescribe talking only as needed and rest the loop until I didn't have as much anxiety about it. ...He then proceeded to say,  " I prefer not to prescribe benzodiazapine as it is dangerous....and you must learn how to control this until it goes away".  He was right ...if I am mostly quiet ...voice wise and anxiety wise ( Ha!)...it is much less frequent

.I am completely humiliated that I was yet again in a doctor's office....I really think I am losing my sanity ...really

....Maybe if I can heal from this breathing thing I can get centered again...or not....

....Thanks for posting that...the inhaler made me shaky ...so I am doing nothing for it except ibuprofen for all the chest/back soreness....and not talking...over compensating with way to long posts

...Happy to see you on tonight Jenny...thinking of you....coop

 

Coop, what a great doctor, what a reassuring explanation.  Do not be humiliated, ever.  This past couple of days have been horrible.  This is breaking our backs and our spirits.  I'm trying to adjust to this, because I don't know when it's going to end, and I don't know how to -- I'm finding it hard, maybe because it's so intense physically?  I don't know.  All I know is don't you dare beat yourself up after you've suffered so horribly.  You go to the doctor, you do whatever you need to do to feel better.

 

P.S.  I've got all the body aches and body stiffness back pretty intense, also benzo fluey usually in the evening.  that's old news.  new news.  anybody get what feels like painfully inflamed kneecaps?  I'm hobbling down the stairs again.

 

 

[[Co...]]

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

[[No...]]

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 ...