12-18 month support

[[be...]]

I'd like to put in a word for the benefits of avoiding the ER.  I'm not  sure the reassurance people sometimes claim to get outweighs the negatives such as the stress of the visit itself, the having to hear the doctors undermine your belief that you are indeed still in withdrawal, the possibility of being talked into taking meds that just set you back.

 

I don't believe I've ever read a BB story where somebody went to the ER fearing they had something life threatening going on and then found out they did, indeed, have a heart attack going.  There WAS a story today of a guy finding out his shoulder pain was actually something torn and NOT withdrawal, but that was not discovered in the ER.  Yes,  people in withdrawal can have other things going on, but the sort of things that send people to the ER in a panic seem to be just that....panic.

 

Drew--I'm sure that pain in your head was scary.  I, too, have a history of migraines and I think I've had had sort of pain going on all my life.  Seems like I've had several attacks of it lately and figured it was withdrawal.  So it's a comfort to me that others have experienced this too.  I always think "uh oh, anuerism," but then I don't die. 

 

I think withdrawal just gives us random pains all over the place.  Today, for crying out loud, my right knee started hurting so bad that my husband stopped on our way out of town to buy a bag of ice for it.  This is my right knee, my GOOD knee, with the left one being artificial and the right ankle being the one I broke and my right foot still hurts too.  This pisses the hell out of me because I just can't seem to win and not have a pain SOMEPLACE.  But it's going to have to hurt quite awhile before I go to the docs about it.  I'm just sticking to my belief that anything going wrong with me lately is withdrawal related and all will heal in due course.

 

If people WANT to go to the ER and they find some comfort in it, I wouldn't try to argue them out of it,  but I don't think a trip to the ER is necessarily a benign route to greater psychological comfort.

 

 

In my first withdrawal..yes..it was a great psychological comfort to be told I had no terrible illness or anything life threatening,I didn't recognize the symptoms as benzodiazepine withdrawal..I thought I was dying and needed validation that I wasn't.

Had I not gone to the er my fears would have worsened and probably popping more benzos to relieve the fear...the fear was so huge.

Yes, I caved in and let them talk me into a valium shot...I paid for it dearly. I also got the talk that it can't still be benzo withdrawal.

While my health fears were calmed from the frequent er visits...I was left with "what the hell is wrong with me". I later found the benzodiazepine withdrawal site...they saved my life.

I feel their is no right nor wrong in all of this ...it's our own personal journey and we do what we have to do.

I have been to the er a few times in this withdrawal for real sicknesses ( bronchitis) and was scared and shaking...I was offered a benzo...I said no..I'm in protracted benzodiazepine withdrawal..they asked me how long....I told them and said" it's not up for discussion that's not why I'm here."

They also offered me vicodin...in which I wanted so badly because I was in so much pain...I refused and asked them for some Tylenol. My health fear was that I had a chronic lung disease...but I didn't...faux asthma and bronchitis. Another health fear bit the dust that night...I just needed validation that I was not dying.

Again...yes we need doctors...yes..we need medicine...more importantly..we need each other..we need the stories of going thru hell and healing..and saying no to benzos...if we're able.

Sharing is caring.

 

 

[[Sk...]]

Drew. ...you have been doing so great...I follow you for inspiration on dealing with health fear...you are miles ahead of me....This is so stinkin' hard. When I saw my pdoc today he said hardly anyone gets off and stays off. He then gave me so much rah rah for getting 18 months out....I felt like a first grader getting a colum of gold stars.........coop

 

Coop, what an awful thing to say ! And then condescending as well. Oh well, that does not make things easier, you are becoming  even more patient than you already are. 

[[Sk...]]

I'm still here to... its like when is enough a nough... 

 

Ditto !

[[Sk...]]

I'd like to put in a word for the benefits of avoiding the ER.  I'm not  sure the reassurance people sometimes claim to get outweighs the negatives such as the stress of the visit itself, the having to hear the doctors undermine your belief that you are indeed still in withdrawal, the possibility of being talked into taking meds that just set you back.

 

I don't believe I've ever read a BB story where somebody went to the ER fearing they had something life threatening going on and then found out they did, indeed, have a heart attack going.  There WAS a story today of a guy finding out his shoulder pain was actually something torn and NOT withdrawal, but that was not discovered in the ER.  Yes,  people in withdrawal can have other things going on, but the sort of things that send people to the ER in a panic seem to be just that....panic.

 

Drew--I'm sure that pain in your head was scary.  I, too, have a history of migraines and I think I've had had sort of pain going on all my life.  Seems like I've had several attacks of it lately and figured it was withdrawal.  So it's a comfort to me that others have experienced this too.  I always think "uh oh, anuerism," but then I don't die. 

 

I think withdrawal just gives us random pains all over the place.  Today, for crying out loud, my right knee started hurting so bad that my husband stopped on our way out of town to buy a bag of ice for it.  This is my right knee, my GOOD knee, with the left one being artificial and the right ankle being the one I broke and my right foot still hurts too.  This pisses the hell out of me because I just can't seem to win and not have a pain SOMEPLACE.  But it's going to have to hurt quite awhile before I go to the docs about it.  I'm just sticking to my belief that anything going wrong with me lately is withdrawal related and all will heal in due course.

 

If people WANT to go to the ER and they find some comfort in it, I wouldn't try to argue them out of it,  but I don't think a trip to the ER is necessarily a benign route to greater psychological comfort.

 

 

In my first withdrawal..yes..it was a great psychological comfort to be told I had no terrible illness or anything life threatening,I didn't recognize the symptoms as benzodiazepine withdrawal..I thought I was dying and needed validation that I wasn't.

Had I not gone to the er my fears would have worsened and probably popping more benzos to relieve the fear...the fear was so huge.

Yes, I caved in and let them talk me into a valium shot...I paid for it dearly. I also got the talk that it can't still be benzo withdrawal.

While my health fears were calmed from the frequent er visits...I was left with "what the hell is wrong with me". I later found the benzodiazepine withdrawal site...they saved my life.

I feel their is no right nor wrong in all of this ...it's our own personal journey and we do what we have to do.

I have been to the er a few times in this withdrawal for real sicknesses ( bronchitis) and was scared and shaking...I was offered a benzo...I said no..I'm in protracted benzodiazepine withdrawal..they asked me how long....I told them and said" it's not up for discussion that's not why I'm here."

They also offered me vicodin...in which I wanted so badly because I was in so much pain...I refused and asked them for some Tylenol. My health fear was that I had a chronic lung disease...but I didn't...faux asthma and bronchitis. Another health fear bit the dust that night...I just needed validation that I was not dying.

Again...yes we need doctors...yes..we need medicine...more importantly..we need each other..we need the stories of going thru hell and healing..and saying no to benzos...if we're able.

Sharing is caring.

 

I Ctd at the hospital, I was operated on and then, a few hours after the operation, I Ct. I was there almost a week and my subconscious sort of identifies everything bad with ER, in my poor addled brain, that's where it started, and in a way, it did.

 

In that week, I was examined all over. When I got out, after seeing a couple of docs, and realizing on my own that it was indeed all  wd, I decided to try to avoid doctors for a while.

 

But I had had all these initial check ups and I knew for sure I could not have any of the things I was getting. As FJ said, the discomfort of going to ER would have been more than the reassurance.

 

Drew, we all know that fear of dying, fear of sicknesses, fear.

 

Hope you are feeling better.

 

Funny how we all feel differently about ER, though.

[[Mi...]]

Mike...that happened to me last week. I was up only a couple of hours fixing myself some breakfast and I got really dizzy and my vision started getting blurry...I didn't feel any panic or anxiety..but I did feel drugged or drunk. After I ate my breakfast I got very tired ..I was watching tv and just fell over asleep...I slept for about 20 mins.and woke up feeling very tired and still dizzy. I decided to go for a short walk to see if I could walk off the drugged feeling...it got worse...I came back home and fell asleep again. My day ended up being a couch day.

 

Hope this doesn't last all day for you..the little guy needs a bike ride.

 

Thank you for empathizing with me Beulah.  I pushed myself hard and took little Mike bike riding.  I walked about 2 miles while he road.  The whole time walking I didn't feel dizzy at all.  Got home 20 minutes ago, still feel really spaced out and lethargic but at least walking completely cured the waves of dizziness rolling over me!  I could totally sleep right now but don't have that option.  Maybe when my wife gets home from work I can close my eyes for a bit.  Hopefully the 2nd half of this gorgeous Saturday miraculously turns into a window!

 

Thanks again!

[[dr...]]

Mike...glad it's a bit better. 

 

I slept okay. A few minor surges and lots of wake ups but I did have some really good dreams s. Know I got what I needed.  Still have some residual fear of that brain thing happening again even though it wasn't dangerous.  I realize it will take time to subside as that was a horrific experience.  That being said if it hits me again I'll now be better able to deal w it using my cbt methods to point out my catastrophic thinking.

 

Did get out early for a 3.5 mile hike. Felt okay and no real heightened anxiety.

 

Hope everyone has a good day.

[[sa...]]

well.. I was supposed to go to the Sox game today with wife and son, but had to bail as the vomiting continues. I've lucked out the last couple of months with plans, but not this time. Fortunately her brother was able to go, so I feel good that they are there. Just bummed about missing yet another nice family moment.

 

I start bouncing around noon, but it only lasted for an hour. I'm back to this endless acute wave.  I'm sitting in the sun now and it feels good. I'll enjoy my little sun bath and be happy with that.

 

How are you today Coop? anything breaking?

[[Sk...]]

well.. I was supposed to go to the Sox game today with wife and son, but had to bail as the vomiting continues. I've lucked out the last couple of months with plans, but not this time. Fortunately her brother was able to go, so I feel good that they are there. Just bummed about missing yet another nice family moment.

 

I start bouncing around noon, but it only lasted for an hour. I'm back to this endless acute wave.  I'm sitting in the sun now and it feels good. I'll enjoy my little sun bath and be happy with that.

 

How are you today Coop? anything breaking?

 

I understand you feeling bummed out, I really do. But again, try not to do that to yourself. When you get better, you will be there and make up for all this time you are spending on yourself but also on your family, this is time we are all  investing in becoming better versions of ourselves. So we will be even closer and more loving and present with our loved ones.

 

That' s how I see it from here. I am saying this as much to myself as to you.

 

Sorry you are still having problems vomiting, it must be very hard on you. Enjoy that sun, it sounds lovely.

[[be...]]

Sorry sas, it's so hard to miss the family time. I miss running around with my granddaughter and kids having fun. When we heal we will have such a greater appreciation for everything in life. We have many years ahead of us and a lot of catching up to do. Feel better.

 

When you guys have a window do all of your symptoms go away? I thought I had small windows throughout ...but now I think they were glimpses of windows.

This morning when I woke up I felt healed..everything was gone and I felt like I had been locked away in a cocoon for many years and woke up. I think this was my first real window in 21 months...wow.

The window only lasted a couple of hours...I desperately want and need it back. I really don't know what it was...but I'm calling it a window.

[[dr...]]

Beluh...I never had a symptom free window.  Close but always something.  I'm excited to read what you wrote and are experiencing.  Many people have written about it but I don't know the feeling.  A lot of us are so tired we'd take incomplete healing if we new it wouldn't get worse.  Luckily we can't make those choice.  and looking forward to experiencing it

[[Gr...]]

Bad start to June -- Vomiting all night. Super bad nausea still, shaking all over. I just have to get my son on the bus and then I'm going to curl up on the couch with a cup of ginger tea. I had my brother-in-law take my wife to the doc appointment. I just couldn't do it. I feel so bad about that. It stinks to keep letting people down.

 

Sasq, we never know whether it's withdrawal or something else.  but I think vomiting and shaking is good, if it's withdrawal, I think it's the beginning of the end, or the middle of the end.  I'm been struggling with major nausea, and Coop actually was vomiting. She thought it was her Meniere's but i'm not so convinced it wasnt' wd because I felt the same way at the same time.  Feel better, and let's hope this is a good sign, the beginning of the end of the end

[[Gr...]]

Sas.. We are close in our jump dates.. I have Ben having the exact same sx all month....nausea, dizziness..vomiting ,diarhhea.. some tinnitus. Now I see Nova and Green are in sick bay.  What the heck. So far out. I had this about 10 days ago and now it's back.  Yesterday morning I was feeling better.. and it hit me again...It is reassuring to know that with all of us in bed miserable it must be benzo flu....or actual flu?..

...Green.. you said it...survival mode...no life survival mode..but I think you are also right about surrendering to it and not pushing, although I want to channel Mike too.

....Green , Nova and Sasq. ....pass the gingerale...hoping we all feel better . I am somewhat better if I am lying flat and still . ...is anyone eating anything more than soda crackers?  Thinking of everyone.  coop

 

Coop, major nausea, dizziness, vertigo-type stuff, where I have to sit still, even keep my eyes straight ahead, lots of diarrhea, and I've had horrible white noise tinnitus the past two days.  I never had it this bad.  Oh, I forgot dental pain, my teeth and lower jaw were unbelievably painful yesterday.  I would like to get excited about the prospect that we are at the beginning of the end of the end -- make any sense? = but I just feel too sick, too overwhelmed with all the sx, mental and physical, to be happy.  I think I have that anedonia  (how do we spell that?)  cant feel pleasure?  I'm guessing that's emotional pleasure?  that's different from depression how?  God help us.

 

[[Gr...]]

Nova, god bless you for posting that same here.  Exactly the same here.  Get up in the morning..take the mental check...no dizziness.  no nausea.  no d/r.  feel half decent.  take the dog out....the day looks promising.. lasts 3/4 hours and turns on a dime. Trembling, anxiety/panic, health fear...plain old fear...back on the bed with the Waltons scared to death of everything.  I did get the dog out 3x...When was my daily agenda reduced to taking the dog out. Really trying hard to concentrate on, " my job today is solely to heal" ...and not think about what my life was or what it will be.. just surviving the cycling anxiety...I know it will pass.  Just not soon enough.  Nova, I am so sorry you are going through this too...hope this gets better for both of us ...onward.....coop

 

Nova, Coop  I'm right there with ya.  it's not as bad as last year (nothing is) but I had to shift into survival mode -- Yes, who said something about sensory overload?  that's how it feels.  so i'm laying low, lurking.  I'm channeling MikeJee now, don't want to get too excited!  (not kidding)  ttyl

 

Hello fellow lurker, my spidy senses could feel your channeling.  Yes, sensory overload.  Hate it.  Still get it.  Too much bad, too much good, too much funny....bzzzzzzzz...overload!  Revved!  Lay down/sit down and be quiet for an hour.  Goes away.  That's the side effect I will be the most glad to see disappear.  That's the only side effect that has been with me since day 1.  The only thing that varies is how much emotional stimulation it takes to start the revving. 

 

Hope you are doing well this afternoon Green.  Nice day in Mass, hope the same wherever you are.

 

Hmm, spidy senses?  I thought that was DP/DR.   Seriously, I thought I had special powers at one point ....the other day   can't make this stuff up!

[[Gr...]]

What a beautiful weekend this is going to be, too bad I feel HORRIBLE.  Started last night around 7:00.  Intense waves of dizziness and the feeling that for a second I'm falling.  Every 10-30 seconds I get another "mini-head rush?"  This is insane.  I somehow got to bed and slept 7-8 hours.  Woke up, started doing my normal chores and realized it was still with me.  Took a shower, had a V8 and some good cereal.  Nothing has changed.  Vision keeps getting blurry, feel like I am completely stoned or drunk or something.  I'm not nervous or revved up, just the opposite.  Very tired and dizzy.  I can't remember ever getting frequent waves off dizziness like this.  I have felt generally dizzy many times before, but it hasn't come in obvious waves like this.  I am supposed to take the little guy bike riding today then start staining a bunch of lumber for my next outdoor project.  Right now I feel like ralphing and going back to bed.  No clue what's going on around me.  This needs to stop, NOW!

 

Mike, we are all in this same horrible rickety row boat in very rough seas, as Coop puts it.  The nausea is unbelievable.  I know this is healing, all signs of healing, but it's very hard to enjoy that fact when I look out the window at a beautiful spring day and feel too sick and tired to leave the house.

 

so let's hope this is the beginning of the end of the end!

[[sa...]]

Sky -- I feel like I need to keep putting myself out there and try to do these things. if I get temporarily bummed out that's ok. It always passes. I have to try and sometime I succeed and have a good time. I do need to work on getting bummed when I can't "go out and play" but I think that's just part of who I am. I thought I rolled with it pretty good today. I'll keep the battle moving.

[[sa...]]

Beulah -- I would say I'm anywhere from 85 to 100% in a full window. None this month. I get maybe 2 a month, though I got 4 in March. When I get them I'm convinced I'm healed. That's how good they are. I'm glad you are starting to get windows. They give us a taste of the prize we are after. Hopefully we will all get many more of them in the coming months.

[[sa...]]

Green,

 

Hang in there. I've been dealing with the severe nausea thing for the entire 17 months. But I will say this last two weeks has been the worst it's been since the first few months off klonopin. I went for a full workup and MRI in the early months and every thing else is fine. It's amazing how strong it can get at time like this. Very flu like.

 

I know that a few people I talked to had a bad wave like this right before they healed. I think that is possible for us as well or at least a huge jump up in the baseline. I picture it like the brain completely shuts down so it can repair more quickly. Once the lights go back on we should be in for some windows hopefully.

[[Fi...]]

Had to take my own advice today about not showing up at the ER.  So here's a 20-month report.  Mentally overcame my aching knee (my good knee ha ha) to launch into a painting project.  Felt like my old self, really congratulating myself on getting into something that would help my positive brain chemicals get going.  Rather than push myself as was my old habit, after the first coat I decided to lie down and take a rest.  Bad idea, I guess.  My heart let loose and I'm back doing tachhycardia. 

 

For the record Drew, on the subject of new symptoms popping up, I never even had this one until about month 16!

 

Every time this happens I get angry all over again at the docs who prescirbed me this stuff without me even asking for it and angry at all the people I suspect think I'm just malingering and don't really want to be well.

[[dr...]]

My heart has been going like that for a while now. Not nonstop just races on and off several times a day.  I'm a pro w that symptom. I just repeat "this is me right now. Just healing".  It's amazing what we just put up w which would send all our critics to dr and ER way more than us. For us to go it's way beyond normal suffering.

 

Had on and off thoughts about not really going to heal anymore.  Just this is it. All my own stuff coming out after a year. I mean I had bad panic and anxiety as long as I can remember.  Then I get a twitching finger and random adrenaline surges and think I have lots more healing to go because my cns is still raw.  I also have tools that I use which I never had when younger.  I also have no anxiety in windows. I only get panics in extreme case like yesterday where I used to get two per day. Then I read the success stories and almost every one says it gets better every year.  They come back and say it's even better than they thought it can be.  This board is showing lots of late inning struggles but we all will improve.

[[No...]]

Beulah ... I had a real 10 day window last August ... and nothing before or since other than "okay" sort of days ... 

[[Fi...]]

Drew--I will try that--"this is me right now."  No, wait a minute.  I HATE that this is me right now!  Very hard not to slip into the feeling that it will always be this way.

 

But hey, the twitching finger thing?  I had that a couple of weeks ago for a few days running.  Just felt like a little buzz of electricity on my right index finger.  Not at all bothersome, just something that made me think things were still rearranging themselves.

 

But the heart thing is harder to ignore.  I had some briefer, on and off episodes, but this is the third time where it's been an all afternoon deal.

[[dr...]]

Fj-I use that phrase to just accept my symptoms and not fight them by trying to feel normal. 

 

Yeah...finger just looks freaky and comes n goes.  It's like a Frankenfinger

 

The heart thing is hard to ignore.  All of this just sucks. 

[[dr...]]

Hi all...I had a good night. I went over a friends house to watch the boxing match.  I haven't seen most of them for two years. They all said I looked and sounded really good.  It was nice to go to a party w screaming kids and other chaos and not have many symptoms.  No head stuff just minor anxiety.  I remember the last time I was there my brain was frying.  It just felt good to be almost normal. 

I also did cbt to help alleviate my fear of that crazy head pain.  It really helped and allowed me to put the ER visit a little further behind me.

 

One of my friends is a nurse in a facility for elders w dementia.  She is nauseated by how they just give benzos and AD's out to all of them basically upon admittance.  She is looking to get out of that and be more of a holistic nurse to fight the machine. 

[[be...]]

Morning all....another not so bad morning. I'm not really sure how to explain it...it's not a window..I think it feels more like being comfortable in my own skin..in which I haven't been able to feel forever.

A warm sunny day here Im gonna try to do some walking early because we have rain moving in later.

Big hugs to all.

[[No...]]

Good news, Beulah ... enjoy your walk ...