12-18 month support

I am exactly a week into month 19 right now.  And wow, you must be a fast typist, I swear I just posted that last one. 

Mikejee,

No, I posted from reading your prior posts. Once I posted you had posted again to my post. I'm half way done with my  17 months. So you're about 2 months ahead of me. How was your month 17 &18?

I'm really suffering with pain deep from inside my bones that nothing helps. The worst month yet.

 

Korbe

Honestly I don't remember exactly, I try not to keep track of how I'm feeling.  I will say that month 18 had a lot of pretty decent days in it.  Don't remember if it was 17 or 18 but there was a long stretch of severe neck pain.  I have been in pain for about 12 years.  When I turned 25 all my vertebrae and discs started to degenerate.  I take nothing for pain anymore.  (it's years of opiate abuse that created my temporary anxiety, which led me back to Xanax, which landed me on this crappy journey)  This withdrawal process makes everything hurt, not just my spine related issues.  It's insane how sore my arms and legs can be, which have nothing wrong with them, and like you said, it's almost like the bones themselves hurt.  All lies, all will improve.

 

What hurts you the most?  Or is it just soreness everywhere?

Hi buddies...thank you so much for your caring thoughts..

....I haven't read all the posts...I am wiped out.

...All seems well for the moment. My pdoc believes that the eye exams that I had last week triggered my Meniers Disease hence all the ungodly dizziness and nausea. He ran an ekg and thought it was fine except for one lead that showed some small difference from my last ekg so he is sending the ekg to the cardiologist but not insisting I do a follow up unless the cardiologist wants to see me.. whew!... Also a referral to the neurologist for the eye and dizzines stuff. So here I am after 18 months of avoiding Dr visits , lining up referrals. In the long run it will provide reassurance.

....My b/p was 190/90 but it came down some during the visit and I took a second one dose of atenolol while there along with Zofran for the relentless nausea... and yes.. 2.5 of valium ...in the office...none prescribed. ..I am eating again and not swimming in panic, nausea and dizziness at every head motion.....I hope I can stay on the thread in spite of the 2.5 valium..  I am 17.5 months out...if I had to have a procedure I would have taken it...I will continue daily b/p meds and Zofran until things stabilize. ...I feel somewhat of a failure but I was sicker than I can remember ever. I do believe that it did have a relationship to the Meniers as well as w/d

....b/p is now 107/68...I still have some anxiety but not sheer panic...ready to sleep

....thank you again....love to every one of you....coop

Love you Coop. You handled it very well.  You're still 17.5 months out. This changes nothing.  😊

Coop...get that failure talk right out of your system!!!  No one here is ever a failure as this is the most ungodly thing in the world. You took 2.5 V.  So what?  Your not taking them regularly.  Glad the sheer panic stopped.  Failure....bah humbug....that you aint

Well said,  Drew.  Coop rocks!

Coop....so sorry that you suffered so today.  Given what you were going through I wouldn't feel bad about the valium.  It sounded like it was much needed.  You will come through this.  We are all behind you.  Rest well tonight.

Love you, Coop. You're really doing well despite the wave of panic you've been dealt and we are with you every step of the way. No one questions or doubts your decision. At least I don't. This ride is brutal and we each need to be ready to do what it takes to keep this train ride from turning into a train wreck. Hoping the meds bring things down a notch so you can ride out the next part of this journey a little easier. 

 

Peace2

Coop, so glad to hear your feeling better.  I hope you get some good rest tonight and feel better tomorrow. Jenny

Coop--so sorry to hear you had such a horrid time of it.  Coincidentally, I was doing a minor version of the same sort of attack at the same time.  I'm posting it here to add to the collective wisdom and experience, a testimonial that yes, this can happen at 20 months out, even out of the blue to somebody who hasn't had this as a symptom.

 

I have mostly been spared the blood pressure wonkiness and elevated heart rate that cause real fear, and lying there with my heart doing 145 all afternoon, I thought of all of you who seem to go through this on a frequent basis.

 

You're all very brave and I hope we see the end of this soon!

Coop,

my anxiety had been gone for months and I thought it was all behind me.. The last few months I have been having massive anxiety and my whole body has a bad nervousness feeling--I get the shaking too. I think a lot of us really suffer in these 15-18 month marks just like we did around month 5-6 and month 9-10. It doesn't make sense, but the fact that so many of us are suffering at these certain times/months in w/d must mean something. You are not alone in this and honestly even though I hate that you are suffering it does comfort me to know Im not the only one dealing with this. Remember HH had a long bout of bad anxiety too, and even felt like going to the ER I think she was somewhere in month 16-18. It will pass for us Coop, it always does. Thinking of you, Jenny

 

Jenny, I was just going to respond similarly.  Yes, remember HH, she was strung out by panic and anxiety, right until the end, right until I'm guessing she's waiting to write a success story.  She always comes here if she's got anything bad going on.

 

And I've been having pre - anxiety and panic.  that means it doesn't morph into the whole experience yet, it's building up, it's sizzling out with my scalp tingling, tight chest, and me feeling like I dodged a bullet, a panic attack bullet. 

 

It's building up, I know it.  Yes, Coop, this is normal, we all have it.  and as horrible as it is, I think it's a signal that healing is coming.

I always seem to have this low level headache and pressure.  I'm okay otherwise.  Just passing another day in benzo land. I'm reading probably twenty success stories a day. Beer helpful.

 

By the way....do most of you get hand tremors?  I look like I have palsy trying to lift a soup spoon to my mouth.  I literally have to lift the bowl.  No soup for me w company.

 

Drew,

 

NO SOUP FOR YOU!!!

:laugh:

 

Mrs.

Hi Buddies,

Been off line for 2 weeks. So haven't caught up with all of your posts. I'll do that after this post

 

I'm now in month 17. Still suffering like crazy with muscle cramping & pain. Still get stinging legs and that off balance feeling known at boatiness.  Also, my legs are very weak and I just can't walk very well.  I went to Seattle for 9 days to get Flumizenil treatments. And when I got home I had severe edema in both legs & feet. Took Lasix on Monday & Tues morning and it seemed to get worse. It really scared me so I drive myself to ER. They did bloodwork for kidneys & liver, ultrasound on every organ in my body & leg veins, an EKG and a chest X-ray.  Guess what, nothing was wrong. Just another awful side effect. They gave me an IV of Lasix and it started to reduce the edema. Sent me home after 6 hrs. With orders to continue Lasix at home & to see my own doctor.  The good thing is now I know there is nothing wrong. And can say so to all my friends who can't believe I'm still in withdrawal.

 

Back to the Flumazinel injections. I had a positive experience, very nice doctor and caring staff.  However, I have not had any improvements in my side effects.  Needless to say, I'm very disappointed. Doctor said it usually helps everyone, but may take a few weeks for brain to adapt. I read the research and most people do get a positive response. So Ill wait and see. I guess I hoped for a quicker reponse.  I'm supposed to keep the doctor informed via e-mail.

 

The good thing is a found out I could fly on airplane, uncomfortable, but no panic attacks. Made sure I had good seats in the front close to the restroom.  Also, used a wheelchair in the airports which really helped since I can't stand or walk very well. I had to get ready and go to the clinic each day and usually eat in a restaurant every night. I managed to do it all even though I felt like crap.  So, now I know if I push myself I can do more things and it does serve as a distraction to the pain and agony we are feeling.

If you want more info on the clinic in Seattle or the Flumazenil treatments PM me and I'll answer any and all questions.

 

I'm now going to read all your posts.

 

Korbe

 

Korbe!  So happy to hear from you.  we've all been wondering how you were, how your experience was.  well, do you think the edema was from the Flumazenil?

Anyway, sounds like it went okay.  You should be feeling better soon either way.  I know you're going to see some improvement. 

Sorry you guys aren't feeling so good today.  I had a mostly good day, no intense windows or anything like yesterday.  Just got back from a local dairy farm with the cub scouts.  Had a good time, felt ok.  On the ride home I started getting spacey, now my hands are cold, my vision is blurry/tired, neck hurts.  This twitching right eyelid is driving me nuts.  Feels like there is something pulsing under there, it actually makes the lid do a 1/4 of a blink.  I'm not freaked out about it, just really annoyed.  The strangest things we deal with, ya know? 

 

Mike

 

you're about three weeks ahead of me.  I just read Baylissa's book, and it seems we're all right on schedule.  Apparently it gets nasty right around this time, and hopefully we all have a smooth landing?

 

Yup we are neck and neck! I love hearing real stories that include how bad the waves can be right before total healing.  Makes us think we are really really close!

 

I have been a complete mess about 80% of my days since Easter Sunday with the past 7 days being almost unbearable.  I must confess, I was so bad today I couldn't think, couldn't get anything done, really bad intrusive thoughts making me worry about things I don't really even care about!  At 12 noon I jumped into bed for 3 hours.  Helped a little bit.

 

After a couple more hours feeling crappy and mega DP, the family said they were hungry so I went out and started the grill.  Being outside seemed to wake me up, it's a perfect 60 degrees here right now. Had italian chicken with broccoli and taters, washed it down with an ice cold Molson.  I feel pretty darn good right now and the beer didn't make me feel nervous or hot.  I won't dare have a second, just needed to taste one.  I miss beer so badly.  Right now I probably have about 2-3 beers a month to test the waters.  Ooooh, I see that Korbe is back......gotta read this....

 

This past month, 17, was one of the most challenging I've had, and I've been plenty challenged!  Even now, even though the intense, crazy-making wave has diminished, I have anxiety, intrusive thoughts, no energy, real fatigue, and plenty of other odds and ends.  it's crazy.  In some ways I was doing a lot better last year.  but the real improvement is mental clarity.  It was like in one single moment someone turned on the lights and I could see so much, literal and figurative.  This happened when the major wave slowed down.  you know, we're all very close, it looks like 22, 24 months.  maybe some of us will see improvement before that.  even with healing at 22 months, that's like five more months for me.  chop wood, carry water :'(

Coop...babe...buddy...

 

About a week and a half ago, I got hit (ney, SPANKED) with some very challenging fear & panic. I know that I tend to "downplay" my symptoms oftentimes - mainly because I am not interested in giving them ANY MORE space or words or anything - but I also don't want others to think they're alone. Last Monday was probably the worst panic I've had. Ugh. There, its said (But only once). Have you ever read any posts by Matthewonline? He talked about what he called "regressionary waves", where he felt like with each wave that came by, its like they'd almost feel "worse" than the prior, for a long time post taper (2 years off + a bit). It took awhile before these 'regressionary waves' type feelings knocked it off ~ but they sure did! He had lots of panic, anxiety, etc. Northofhere also spoke of the "regressionary" type waves also. I can relate a bit as well! It sounds like there may be a few symptoms here & there that may feel similar to this for you, too. Read up on Matthewonline's posting history if you want - it really encouraged me lots

 

Okay, it's late here dear - off to bed for me. You're doing great ~ its just a funky timeframe is all Hollar if you need me!!

 

Mrs.

Coop, 2.5 mg is dust.  it doesn't count!  And, yes, if I have surgery, or dental surgery, I will absolutely let them use any benzo they have.  Even recovering opiate addicts have to use pain meds occasionally.  esp. as we get older.

 

Oh, my poor, dear Coop!  That is a high BP.  I'm so sorry you had to go through all of this, and I hope you are settled down and resting now.  You know we love and support you.  Tomorrow will be better. 

Coop .. you did a good job for yourself ... and you are the one that matters ... we are all unique ... and medications are not inherently evil ... they all have their time and place ...

 

Be well ... get some rest ... and don't worry about "figuring this out" right now ... if there is an insight, it will come ...

 

Our "job" is to be aware of what we need in the moment ... accept that need with equanimity and live accordingly ...

 

Hope you have a good rest ... 

Mrs ... "regressionary waves" ... why not? ... every insight along this journey is helpful ... thanks for the insight ...

 

Sorry you got "spanked" ... it is what it is until it isn't ... 

Korbe ... thanks for your update ... curious stuff, this journey ... hoping your edema settles out for you real soon ... 

Green ... don't know what I can add ... when in doubt ... chop wood, carry water ...

 

And ... I know the "turning on the light" ... the mental clarity happened for me a while ago ... one more step along the way ... 

Good Morning ... another "interesting" day on the thread ... good to hear from so many folks ... so many "stories" ...

 

Got some good sleep ... heavy congestion and "asthma" this morning ... and some floating anxiety ... hope to walk it off this morning ...

 

Be Well, Folks ... have a good Saturday ...

 

 

Morning all,

Hope you all got some much needed rest last night.

 

Coop-  You had to do what you had to do...it was a tiny little piece and you were only trying to save your life.

The triggers are no joke. The eye exam might have sent your symptoms over the top..it doesn't take much to put some of us in the soup.

I'm so sensitive to sugar now that it doesn't take much to set me off.

The albuterol and antibiotics have sent my symptoms over the top...and I was wondering if they would.

I've stop the antibiotics for now...because that's what I have to do ...for now.

 

Coop, you are not weak...you want to live your life without suffering...just like the rest of us.

This withdrawal is a journey into the unknown...for now.

You are strong ..you are brave..you must put this behind you ..and don't look back.

Please, don't allow yourself to feel guilt over that little sliver of a pill that you took because you were trying to save your life..your human...imagine that.

 

I wish that you could feel my arms reaching around you right now...the biggest hugs straight from the heart.

Your in my heart ..your in my mind. Love you coop.

 

 

 

Good morning folks, might hit 70 in Mass today.  Couldn't be happier about that! 

 

Today is sort of a big day.  Traveling an hour for my father in laws birthday, then dropping off our kid at my fathers house for an overnight.  After that meeting a couple for dinner....then after that might be going to a bonfire party.  Praying I can hang in there and that my SX are kept to a minimum.  Stinks to say, but the less I laugh today the better I will feel.  Laughing = revving. 

 

Wish you all a great day and nice warm sunny weather. 

Mrs ... "regressionary waves" ... why not? ... every insight along this journey is helpful ... thanks for the insight ...

 

Sorry you got "spanked" ... it is what it is until it isn't ... 

 

Haha, ya you got that right They aren't "regressing" for real, of course ~ its merely a feeling I know. But it was the description he used, and I thought it described that sensation well

 

"It is what it is until it isn't..." ~ there's that gift, Nova Well said!

 

Mrs.