18 - 30 Month Plus Group

[[Fi...]]

Texas Mama--

 

The music I use is called Music to Inspire Positive Thinking--Scientifically designed by Dr. Lee R. Bartel.  I got it out of the Isabella catalogue way before I fell down this rabbit hole.  It's almost like magic.  I gave a copy to two of my kids (the third is so naturally positive he absolutely doesn't need it!) and while they were sceptical about it, they both admitted there seemed to be something to it.

 

For me it's the repetition of positive stuff that helps click me into a new and more optimistic outlook.

 

I totally know what you mean about some days being just so hard to find a positive.  Another thing I listen to is some CDs from a guy named Trevor Scott.  I think it's called Beverly Hills hypnosis.  I like "Motivation to Move."  It's for weight loss but mainly he's just giving you such a great pep talk about things are going to get better.  There have been days, though, where I felt so lousy, I would just start crying and yanking out my ear buds yelling at the guy--"You're a big fat liar.  I am NOT getting well!"

 

All I can say is, just give it a little try.  How I talk to myself is that I say, "Okay, let's just see if we can......get on the bike, go out and walk around in the morning light, whatever."  All I have to do is try.  If I can't continue, fine.  No harm, no foul.  But more often than not, something would click into my brain and I'd find I was feeling better.  I specifically remember a few times when I was really so depressed.  Couldn't do my yoga.  Could only lie on the floor crying.  But I dragged myself out to stagger around the farm in the sunlight and, amazingly, it helped.  There's just a lot of chemicals going on in there that we don't understand.  We just have to try to harness them however we can to get them to work for  us.

 

Thanks for saying I'm helpful--I try!

[[Te...]]

FJ......you are very helpful....don't forget that......and I do walk everyday....drive my kids to school....make myself do the  grocery shopping....walk around outside of shops....go to a few movies each month....work very part time....but nothing stops the muscle and nerve pain....this is what makes me so sad.....I try and distract but the pain is always there....some times I'm out like at a store and  the  nerve pain so so intense....tears just pour down my face....at one time shopping was a good distraction but not anymore....in fact I worry at times going out makes me worse due to nothing helps distract the pain.....but it does help make the day go faster....I hope this gets better...this is one reasons I feel I'm getting worse...

Going to check into music...it sure can't hurt...

Hugs!

TM

[[li...]]

Hi to all my friends. I can not thank you all enough to have been there for me. I would not have been able to get through this journey without you!

 

Thanks to each and every one. You all will heal completely! That is the thing with this condition -- it could be your last wave today!!!! Just know that.

 

Life

[[dr...]]

Hi life!!!  I friggin hope so. I'm on day five of intermittent migraines that have brought intrusive thoughts w them.  Damn nightmare.  I was doing so well.  No bad headache for three months now I'm laid out for five days.

[[so...]]

Thank you, Life.

 

Your success story has been such a comfort to me.  I've read it many times.  I also read all the 6-12, 12-18 and 18-30 month threads.  I know how much you suffered alongside all the other buddies and how every single one of you battled the beast every day.  You deserve the most blessed life this world has to offer.

 

As do you, Drew.  This is your last tsunami before the storm finally passes.  January is your recovery month.  Kiss the migraines goodbye.

 

Love, Sofa

[[Mi...]]

Hi All,  Hope everyone had a relaxing wknd. 

I had a really long different wknd. But, it was actually pretty good.  My hubbys childhood best friend and family came down and spent a night. And it actually went really well. Then We had a big bday party for my mom this Sunday which went amazingly well. Plus three hockey games thrown into the mix of the wknd! I actually had a normal wknd I didn't really  even think about benzo withdrawl.  It felt really really different. By no means was it completely sunshine and rainbows but it was pretty close.  Then Sunday night I started to wave mildly. Throat sensations, mild breathing difficulty, pretty much a mild anxiety attack.  That continued through out the day today I slept most of the day.  It was bitter sweet.  I was proud of myself for the wknd. Disappointed in last night and today.  But over all I can see that healing is really taking hold.  Even though I needed the day to recover and no matter how I wake in the morning I AM HEALING...

 

:smitten:

[[Co...]]

Life....what a wonderful surprise to see you here for a moment. ...Most of the original ' Cave Dwellers ' have moved on....though we stay in touch... what a group we were...a band of buddies.. .You led us out of that cave ..  We are doing well.

    I am at a consistent 85% with many 95% - 100% days. I am living my life again and consider this a re-entry year . I am mid month 26... If not for lingering moderate anxiety I would write a success..  I will probably wait until year 3

  Life...you are often mentioned in our off the thread group.  The Cave Dwellers....Nova, Peace, Healing Hope, Green, Jen...Sky... we love you ....we love it when you post back from time to time....Carry on dear friend..  Happy Happy life to you...

              Coop

[[St...]]

Need some support please buddies. I've just finished month 14 and not only am i still yet to have my first window but i'm genuinely feeling the worst i've felt through this entire process. How can i have done all the right things for 14 months, living like a monk and feel worse than i did a year ago!?!

 

Current symptoms:

- Fatigue - i'm not talking a bit tired, i'm talking about being so tired you feel like you're hallucinating. I'm like this every day. 

- Insomnia - when i do eventually fall asleep i am always woken a few times a night by cortisol/adrenaline surges.

- Inner vibrations particularly in hands and feet ALL DAY from the moment i open my eyes until i fall asleep

- Leg pains, can be excruciating. Think the pain is just from all the tension.

- Stomach acid reflux/bloating, sharp pain in between hip and ribs on right hand side. 

- Electric shocks in my brain when i try and do just about anything.

- Sore/watery eyes

- Light and sound sensitivities, can't watch television even after 14 months! I know how ridiculous that sounds.

 

I knew this process wasn't going to be easy, but i just wasn't at all prepared to feel worse at 14 months. I feel completely hopeless and broken today and the negative thoughts about my lack of progress are really starting to take their toll. I definitely think it's fair to say that i 'kindled' because my doctor told me i could just take Xanax as and when and start and stop whenever i liked without making me aware of any of the risks. So i was basically in tolerance / interdose withdrawal for almost two years i think, as i was always weary of upping the dosage. I lost count of how many times i started and stopped during that period.

 

Every day i'm just thinking whether an anti-depressant could change things for the better, i mean i need to get my mind and body in a calm healing state, it's like my body is just stuck with that feeling that people get immediately after a car crash. I've tried all the holistic approaches you can think of to try and get myself in a calm state and nothing has worked and most of them like acupuncture have made me feel worse.

 

I just feel like there is a finite amount of days that someone can cope with living like this, i don't want to be stuck indoors anymore! 

 

DISCLAIMER: Before someone says about how i need to push myself to get out and all the benefits of exercise, trust me i've been there tried that and would if i could but i can't. I've lost count of how many times i've tried to make myself go for a walk only to then have to spend the next few days trying to get back to where i was before going for the walk. My body is just so depleted it can't do it. I'm not at all agoraphobic my fatigue and symptoms just make it that i can't go out without feeling a lot worse for doing so

[[so...]]

Stuck,

 

I'm so sorry you feel hopeless with little or no improvement.  I am 14.5 months out and feel the same way.  We just have to wait this out I guess.  Adding an AD to your overly sensitized CNS, when you are this symptomatic, will not go well.  You were in tolerance and kindled, which are signs of just how compromised your brain is right now. 

 

It's hard when you are desperate to help yourself along the process to receive input from people who tell you to do nothing that may complicate things.  I understand.  More is not better during this, as you have already seen with the exercise intolerance.  I wish I had answers.  I wish we all had solutions.  Patience with all this is wearing thin I know.  Coping tools just graze the surface of this withdrawal process.

 

Please try to just hold on another month.  You may turn a corner and leap into a new healing curve.  It happens with many people in recovery to just start feeling functional again for no other reason but TIME.

 

Love and hugs to you, Sofa

 

 

[[Co...]]

Hey Drew... that totally stinks....you were doing so well...and you will get back there... too bad we can't get brain transplants.  Thinking of you friend... .coop

[[Wo...]]

Hope and Sofa, It seems really common for this to be tough time for a lot of folks. I definitely went through it. Roughy between months 14-17 I felt like I was getting worse. November and December were just brutal. Things have turned for the better again and I can feel my baseline is better than before the massive waves. It's a seriously slow pace, (at this rate I'm looking at about 3 years total for 100% healing), but it's moving in that direction. I'm sure there are more waves to come. Many of the folks on this thread had trouble in the second year as well. I don't know why this happens, but I've seen it repeatedly. I know it sounds hollow, but hang in there!

 

Coop, thanks for coming back and updating us. Glad you are doing so well!

[[dr...]]

Hi all...having a rough go of it. I got another migraine at 2am last night.  I think that's 6 in the last eight days.  I am at my wits end as I can't function.  I spoke w my therapist and we decided that whether or not they are from withdrawal they are my number one problem.  If I can get them under control I'd actually be in good shape.  I loathe to take anything and am actually petrified after what I've been through trusting docs but this is no life.  I started taking a low dose of a beta blocker today. Our plan is to take it for six months and see what the results are.  I'm just so scared of taking anything but they seem relatively safe and these migraines are life altering too.  Sort of depressed and lost as I was hoping to avoid this and I feel like I never will get well.

 

 

[[so...]]

Drew, my dear friend,

 

I am in tears over your migraines.  Literally in tears.  You were doing so well for a few months and I was hopping up and down for you.  Your wedding and honeymoon went well and I thanked God for your healing at such a perfect time.  Now this crap again.  Dammit.  I know how heartbroken I am, you must be so shaken right now.

 

Drew, I read this forum all day every single day.  Thousands and thousands of posts and success stories (I'm a fast reader).  I promise you that you are in the mother of all waves that comes before the final healing.  The fact that you were doing so well, feeling almost recovered, proves how many of your receptors have come back online.  This is not a setback.  It is further fine tuning and deeper healing.  Our healing is like a tornado, wide and scattered at the top and narrow and dense as it hits the earth.  You are at the final stage where the deepest healing is taking place.  This spiral analogy is the only one that has ever made sense to me.  Our healing is not as chaotic as it feels.  There IS a pattern, as in all healing.  Honestly, Drew, you are nearing the end.  Another couple of weeks of gradual improvement and BAM, it's all going to kick in.

 

You have been so comforting and soothing to me in my darkest moments.  I WILL NOT accept anything less than 200% recovery for you, my dearest buddy.  YOU WILL NO LONGER SUFFER this withdrawal crap.  Not even a blip of a headache, let alone a migraine.  This is the last big wave for you, my friend.  I have faith in God and I have faith in your body's ability to repair itself.  This is what it feels like to fully heal....not 85%, not 95%, but 200% healed.  I will not accept anything less for you.

 

I love you Drew.  This is the last leg of your journey through hell.  I know it.

 

Love, Judy

[[so...]]

Nova,

 

Your words were so reassuring to me as I am now being thrashed by waves after feeling a bit better for a week.  This is such a daunting and discouraging trek.  Good God, how do we keep this up day in and day out?  We have each other, that's how.

 

Thank you from the bottom of my palpitating heart.

 

Love, Judy

[[dr...]]

What a sweet post sofa.  :smitten:

[[Si...]]

HI drew, so sorry to hear about the migraines. I know they can be so debilitating. I don't think you should feel bad about the beta blocker. It certainly won't cause problems like a benzo does, hopefully it will help you.

 

I've been in a really minor wave for three days. It's really like being in the kiddie pool vs the surf board wave pool though. Not even close to the ones I've had before. It's really mainly some disrupted sleep and heightened tinnitus in the morning.

[[so...]]

Siggy,

 

It's disgusting this WD has to get one last spit in.  Fine.  Bring it on.

 

Sofa

[[Gr...]]

Need some support please buddies. I've just finished month 14 and not only am i still yet to have my first window but i'm genuinely feeling the worst i've felt through this entire process. How can i have done all the right things for 14 months, living like a monk and feel worse than i did a year ago!?!

 

Current symptoms:

- Fatigue - i'm not talking a bit tired, i'm talking about being so tired you feel like you're hallucinating. I'm like this every day. 

- Insomnia - when i do eventually fall asleep i am always woken a few times a night by cortisol/adrenaline surges.

- Inner vibrations particularly in hands and feet ALL DAY from the moment i open my eyes until i fall asleep

- Leg pains, can be excruciating. Think the pain is just from all the tension.

- Stomach acid reflux/bloating, sharp pain in between hip and ribs on right hand side. 

- Electric shocks in my brain when i try and do just about anything.

- Sore/watery eyes

- Light and sound sensitivities, can't watch television even after 14 months! I know how ridiculous that sounds.

 

I knew this process wasn't going to be easy, but i just wasn't at all prepared to feel worse at 14 months. I feel completely hopeless and broken today and the negative thoughts about my lack of progress are really starting to take their toll. I definitely think it's fair to say that i 'kindled' because my doctor told me i could just take Xanax as and when and start and stop whenever i liked without making me aware of any of the risks. So i was basically in tolerance / interdose withdrawal for almost two years i think, as i was always weary of upping the dosage. I lost count of how many times i started and stopped during that period.

 

Every day i'm just thinking whether an anti-depressant could change things for the better, i mean i need to get my mind and body in a calm healing state, it's like my body is just stuck with that feeling that people get immediately after a car crash. I've tried all the holistic approaches you can think of to try and get myself in a calm state and nothing has worked and most of them like acupuncture have made me feel worse.

 

I just feel like there is a finite amount of days that someone can cope with living like this, i don't want to be stuck indoors anymore! 

 

DISCLAIMER: Before someone says about how i need to push myself to get out and all the benefits of exercise, trust me i've been there tried that and would if i could but i can't. I've lost count of how many times i've tried to make myself go for a walk only to then have to spend the next few days trying to get back to where i was before going for the walk. My body is just so depleted it can't do it. I'm not at all agoraphobic my fatigue and symptoms just make it that i can't go out without feeling a lot worse for doing so

 

No one should tell you what to do!  Honor how you feel.  listen to your body.  I was very, very bad, too.  you are going to get better.  calm down.  get some forms of distraction, things you can quietly do that take you out of yourself, even for an hour or two.  Jigsaw puzzles.  I spent hundreds of hours on Ancestry.com doing a family tree.

 

Hang in there.  It gets better.  I promise.

[[Fi...]]

Stuckindoors--

 

I completely relate to what you're going through.  At 15 months I spent a solid month on the sofa, flattened by fatigue.  Wellness seemed like the impossible dream.  Today (almost 29 months) I was at the gym, lifting weights and I swear, I felt euphoric. 

 

It gets better.  It just takes time.  I was never one to push myself to get to the gym if I didn't feel up to it, which probably explains why I feel so completely "up" when I do get there.  But what I've done is tried to gain back my strength by working out at home as much as I could on the stationary bike or doing yoga.  I've hardly missed a day in three months and I think it paid off.  I did not feel completely out of shape by any means this morning.  But that's talking about the past six months.  Before that I just laid there.  Yes, exercise is important, but I'm in the camp that believes that somebody's our bodies are just telling us to lie down and rest already!

 

I think that fatigue period was the place where I came closest to caving to fears of chronic fatigue and thought of going to the doctor, but I didn't.  People can do what they want, but I want to be counted as somebody who successfully avoided doctors all during this and came out healed in the end with hardly anything in the way of medical bills.

 

I know it's miserable.  It's hell.  I felt so isolated that now, just showing up at the gym feels like a huge deal to me.  But I'm so happy.  It's so worth it!  Hang in there.  You'll feel that way yourself eventually.  Remember:  everybody gets well.

 

Love,

FinallyJoining

[[St...]]

Thanks for the replies everyone, they literally feel like all i've got to buy into right now? I am just on a downward spiral and i know all i need to get on an upward spiral is to see some evidence of healing but that just hasn't happened yet, i really hope it does soon.

 

I guess i'm going to just have to move the goal posts again and try and get myself to 18 months without taking an anti-depressant, i don't expect to be healed by 18 months, i just mean i want to see some evidence of healing.

 

Going to really get my thinking cap on about what i can do to distract myself that doesn't make me feel worse even if it's just stroking my dog etc. There's got to be some things i can do.

[[Si...]]

Just ride it out sofa. I was in dire straights all the way up until month 19 when I had a major jump forward. You never know when that day will come, but most likely it's around the corner. I'm such a cynic that I didn't believe what everyone was saying the whole time about getting better. The thing is it doesn't matter if you believe it or not, it will happen anyway. Maybe you could get some of those adult coloring books? Both my wife and I have art degrees (I'm a graphic designer and she's an elementary art teacher) and we both know that doing those are really therapeutic for people. Just an idea anyway.

 

[[Mi...]]

I got a few adult coloring books for Christmas. The title is coloring for relaxation, inner peace, ect....      I thought it was WEIRD adult color books for inner peace!  BUT, I LOVE THEM!  Turns out I was wrong imagine that lol

[[so...]]

Thanks everyone.  I will look into the coloring books.  Need to do something to distract from financial problems and WD symptoms that just won't go away.

 

Love, Sofa

[[Mi...]]

Drew, So sorry about your migraines.  I suffered from them many years ago. It turned out I was reacting to red 40.  Haven't had one since.  Did these just start for you during withdrawl recovery?  I woke up today with major benzo belly.  Bloating pains ect.  The pain is starting to wrap around in my back even...  I haven't had migraines during this my main physical Sx seems to be digestion issues/ benzo belly.

 

  Does anyone else deal with this still?  Or is it just me? 

 

Siggy, so happy for you 

 

Sofa,  keep going we are going to get to the end

 

 

[[dr...]]

Jen, I used to get a visual aura here or there w a slight headache maybe 2x per year.  Once I started my taper headaches way bad and once I jumped the gates of hell opened up with them.