12-24 months and up support group

[[...]]

JJ

In the last months, I also got terrible leg and hip pains, besides all the burning.

Big hugs, Jørgen

[[...]]

First of all,

 

Lady Den and Hardy, I am so happy for both of you and really appreciate you both sharing your good news.  You're two awesome people who deserve happiness and good health. 

 

Jb, Wanna, Livelife, JordanJack, Fire, Decatur, J Ben and others who are struggling, I'm with you! I've had some good spurts of a few days at a time but the last couple of months have been pretty brutal.  I'm mostly back on the couch but trying to move around and stretch and walk every hour or so when I get up to do chores.  it's tough. It's a lot of burning, aching, tinnitus, tummy pain, crawling scalp etc but I know it's part of the process.  On June 1, I will be off all meds for 2 years.  Jb, we are very close in time frame.  Baylissa told me not to focus on the 2 year mark and make it such a big deal. It's just a good marker that we've put in more time that we won't have to spend doing again.  We're getting time under our belts.  I'm continuing to have a very clean diet, trying to maintain a daily schedule and keep my mind busy with other things. I study Spanish, read books and do my work from home part time job....and of course I watch television.  I also enjoy watching wild life out the window or seeing it when I walk around my neighborhood on the days I am able.  Lately, I've seen a fox, a raccoon, 2 snakes (eeeek!), chipmunks, squirrels, rabbits, tons of birds, dogs, cats and loads of deer.  Beautiful butterflies abound at this time of year too.  But all this to say, I'm not super happy about how I've been feeling and I know for sure others of you are in the same boat so let's do what Lady Den says and keep our wrists locked and keep going as best we can and find things to occupy us in the meantime.  I'm thinking of you all and right there with you.

 

Onward,

Helen

 

Thanks Helen🙏

Yeah - we are close. My two year mark is July 1st...

I really try to shift focus and to keep busy as much as I can, but it's tough that most of the time, it's just survival mode.

Hugs, Jørgen

 

 

 

 

 

 

 

It could well be the sertraline caused the problems. I was put on it in withdrawal and the withdrawal symptoms were horrendous, much worse than zopiclone. CT is never a good idea, I wasn’t given a choice with zopiclone. Hope you soon improve, can be a long road for sure.If you can manage to distract def helps. I’m not good at moment, but weather nice here, just sat in garden all afternoon listening to birds. Getting outside does help.

 

Yeah - I also think Sertraline in combi with the z-drug made it much worse.

[[jo...]]

I feel for you JJ. It can change quickly though.

Please do not lose hope. Hard I know but the hope is very REAL.

Healing hugs Hardy x

 

Thank you so much Hardy. I appreciate your encouragement so much.

I will keep hoping. Would love for things so change soon!

Bless you.  Big Hugs to you! 💕

[[jo...]]

JJ

In the last months, I also got terrible leg and hip pains, besides all the burning.

Big hugs, Jørgen

 

Thanks so my Jorgen. I know we share a lot of the same symptoms. I’m so sorry you’re bearing the same. I sure hope we turn a corner soon and that our burning and muscle pain will cease, along with our other lingering symptoms. It’s truly so hard to have the pain day in and day out. Maybe our victory is coming soon. How wonderful that would be.

Big hugs to you too! 💕

[[he...]]

just ugh UGH ufgyudfgaldsgfaildgahgiglfg so over this sttupid benzo torture stuff! thought id be making some progress by now but still same old stuff, beter than acute but still too messed up to live more than barely holding it all together as single working mom (thank god i can work from home most of the time).

 

when does this torture stuff finally ends? i do get very ok days... after ok (but never normal) nights. like if i make 6+ or even 7 broken hours of sleep without too many weird nightime benzo torture symptoms i can have a good day and feel 95% but it never sticks!!! i might go 2 weeks without one or have 5 in a week (rare), mostly i am glad if i get 2 or 3 ok days a week the rest is various degrees of crap, today and last night even acute like crap.

 

end rant...

 

remaining symptoms

insomnia all kinda of weirds varieties, never sleepy but always sleep deprived after a bad night whixh is most of the nights

hypnic stuff, exploding head syndrome, jerks, jaw jerks, nose clicks, toxic agitation at night that kinda thing

dp/dr though nearly gone

chemical anxiety thought it was gone for over 6 months but ther eit was yesterday and earlier today at least a bit of it

just overal toxic chemical nasty feeling

feeling off sometimes

occassional shoulder jerk or twitch somewhere

sometimes blurry vision right eye

 

i might be forgetting a few

on my good days it really is good though... never had a normal night but they can be very okish, but mostly yes crap

 

its just like never better after a wave liek little wave after little wave with little windows in between but less than waves its this still normal at 19 months off? i was a very short term user, i had physical dependency day 3 without knowing

[[he...]]

just ugh UGH ufgyudfgaldsgfaildgahgiglfg so over this sttupid benzo torture stuff! thought id be making some progress by now but still same old stuff, beter than acute but still too messed up to live more than barely holding it all together as single working mom (thank god i can work from home most of the time).

 

when does this torture stuff finally ends? i do get very ok days... after ok (but never normal) nights. like if i make 6+ or even 7 broken hours of sleep without too many weird nightime benzo torture symptoms i can have a good day and feel 95% but it never sticks!!! i might go 2 weeks without one or have 5 in a week (rare), mostly i am glad if i get 2 or 3 ok days a week the rest is various degrees of crap, today and last night even acute like crap.

 

end rant...

 

remaining symptoms

insomnia all kinda of weirds varieties, never sleepy but always sleep deprived after a bad night whixh is most of the nights

hypnic stuff, exploding head syndrome, jerks, jaw jerks, nose clicks, toxic agitation at night that kinda thing

dp/dr though nearly gone

chemical anxiety thought it was gone for over 6 months but ther eit was yesterday and earlier today at least a bit of it

just overal toxic chemical nasty feeling

feeling off sometimes

occassional shoulder jerk or twitch somewhere

sometimes blurry vision right eye

 

i might be forgetting a few

on my good days it really is good though... never had a normal night but they can be very okish, but mostly yes crap

 

its just like never better after a wave liek little wave after little wave with little windows in between but less than waves its this still normal at 19 months off? i was a very short term user, i had physical dependency day 3 without knowing

 

Oh and i take NOTHING, nothing for over 19 months not even otc, i was even scared to take a strepsil the 2 times i got covid

 

Just so tired of this dr jekyl and hyde thing, i know at least i do get good days but i did since 3,5 month off after acute they just never stick!! Guess my rant wasnt over yet

[[...]]

just ugh UGH ufgyudfgaldsgfaildgahgiglfg so over this sttupid benzo torture stuff! thought id be making some progress by now but still same old stuff, beter than acute but still too messed up to live more than barely holding it all together as single working mom (thank god i can work from home most of the time).

 

when does this torture stuff finally ends? i do get very ok days... after ok (but never normal) nights. like if i make 6+ or even 7 broken hours of sleep without too many weird nightime benzo torture symptoms i can have a good day and feel 95% but it never sticks!!! i might go 2 weeks without one or have 5 in a week (rare), mostly i am glad if i get 2 or 3 ok days a week the rest is various degrees of crap, today and last night even acute like crap.

 

end rant...

 

remaining symptoms

insomnia all kinda of weirds varieties, never sleepy but always sleep deprived after a bad night whixh is most of the nights

hypnic stuff, exploding head syndrome, jerks, jaw jerks, nose clicks, toxic agitation at night that kinda thing

dp/dr though nearly gone

chemical anxiety thought it was gone for over 6 months but ther eit was yesterday and earlier today at least a bit of it

just overal toxic chemical nasty feeling

feeling off sometimes

occassional shoulder jerk or twitch somewhere

sometimes blurry vision right eye

 

i might be forgetting a few

on my good days it really is good though... never had a normal night but they can be very okish, but mostly yes crap

 

its just like never better after a wave liek little wave after little wave with little windows in between but less than waves its this still normal at 19 months off? i was a very short term user, i had physical dependency day 3 without knowing

 

 

I’m right there with you. 18 f’ing months of this. I have all the same symptoms as you except the exploding head syndrome. I did have one instance of it 3 days ago when I tried to drift back off in the morning. As soon as I was about to enter sleep I heard a door slam loudly in my head. The hypnic jerks and broken sleep are the worst. I also drag around myself around all day sleep deprived but never tired. I don’t know how I’ve managed to keep my job so far. I know exactly what you mean about that overall chemical yucky feeling. I just want to heal before my kids are grown and lose all of their youth. I sometimes wonder how my body can stay alive while my brain is so broken. I’ll pray for both us, even though I know it won’t do any good.

[[le...]]

Goodbye to all the lovely people in this group.Not posting anymore, I am broken, I wake up ever morning just going through the motions, no one can fix me, this isn’t living after 4 and half years with no respite. I am pleased to hear many of you are improving, whether it’s the series of gastric problems making me so depressed don’t know. I’m not going do anything silly, but  don’t feel a lost soul like me can contribute anything anymore. Hugs to everyone.

[[Ga...]]

Leann, I do pray that you recover and can enjoy life as you once knew it!  You have a husband who loves you and is by your side, and a son and DIL who may bless you with a beloved grand baby!

 

Hugs,

 

GG

[[...]]

Hugs Leann.  See you tomorrow.

 

[[...]]

Good morning all.  Thought I would see how everyone is doing and give a quick update.  It has been a while. Nice to see some folks recovering a bit more. 

 

I am recovering slowly.  Right now I think I am 50%, maybe even 60% healed from the setback - which is really good and would be cause for celebration if I didnt have this other dark cloud hanging over me.  I found out my spine is in bad shape: Severe disc narrowing at c5-c7 (neck) with arthritis in that region AND severe narrowing at L5-S1 which is causing some terrible pain in my legs.  My options are: ibuprofen, steroids, pain medications, PT, or surgery.  Needless to say I will be trying PT only since I cant do any of the other stuff yet - at least until I am healed.  Ugh.  It is funny/not funny that THIS is what will cause me to go on extended medical leave and not the crazy horror that I just went through with withdrawal.  I can barely walk nor sit up for long periods.

 

Anyway that is my update.  I am so happy that my body is healing from the withdrawal.  I feel CALM most of the time now.  Just gotta get all this leg pain under control now.

 

Wishing you all speedy healing.

[[Li...]]

Hello to all my buddies,

 

Wishing all of you that are struggling turn a corner soon. Leann  I'm sorry to hear of your struggle. I hope you start feeling better. JBen  Sorry about your disk problems but it's so wonderful to hear that you're feeling calm and healing from this horrible benzo nightmare.

 

As for me I'm really scared.  About 3 and 1/2 weeks ago I had a terrible vomiting episode I was vomiting every 20 minutes for about 6 hours because of bad vertigo. And ever since then the vertigo has been off the charts it even wakes me after I fall asleep and if it's really bad I cannot go back because I'm spinning so badly.  Last night I only slept 2 hours. This makes it so hard to function in any way with the spinning. I hate the nausea that it causes.  It's really unbearable. I don't understand this because I'm 3 years out today. It seems to have all gotten worse.  I've had vertigo throughout this whole process but never like it is right now.  That's why I haven't been posting cause I've been so dizzy and nauseous. I sure hope I turn a corner soon trying to stay positive but it isn't easy I'm suffering so badly.  I have PTSD from all of this.  But I have to say on a positive note I have had some windows here and there on an evening for a number of hours. And last Sunday I had a break from the Vertigo coming and going throughout the day and other symptoms it was so manageable I wish I could have more days like that. Hugs to all!

LiveLife

[[...]]

Gosh so sorry Livelife.  Did you go to the doctor for this?  It could be something different like Meniere’s disease or another inner ear issue.

[[Li...]]

JBen,

Yes I went and got checked out everything seemed OK. It's crazy!  I tried something for the nausea and vertigo, it aggravated me.

 

[[He...]]

Live Life,

 

I'm so very sorry.  I'm with J Ben. That sounds you might need a doctor and I never say that.  Regardlesss, I hope it ceases TODAY. I'm sorry you are spending your 3rd anniversary in such a state.  My heart goes out to you.

 

Leann,

 

Sorry for your suffering too.  I know you've had many years of turmoil. 

 

Jordan Jack and Jb,

 

The burning is such torture and I feel for both of you.  I've been in a wave for well over 2 months and have many days of aching and burning that come with other symptoms like nausea and stiffness but I don't burn every single day like you do. I have had it on and off for years (even before I jumped).  It's going to stop someday.  I've spoken with several of the benzo coaches and every single one of them say they've never known  a person to NOT recover from the burning. Of course, that doesn't help much when you are suffering so deeply and for so long.  It's one of the most onerous and miserable symptoms.  I'm holding you close and I feel your pain as well. I'm just so sorry. 

 

J Ben, I LOVE hearing that your system is calming down finally.  Super sorry about your back though.  Wow, it's one thing or another and back and leg pain are nothing to joke about.

 

 

Sending best thoughts to each of you. 

[[He...]]

JBen,

Yes I went and got checked out everything seemed OK. It's crazy! Tried some anti nausea meds and they made me sick.

Hugs! LiveLife

 

Oops, we just crossed posted, LL.  I'm glad you saw a doctor but good grief! Still no answers.  May it end soon.

 

[[Li...]]

Helen,

 

I'm so sorry you've been suffering in a wave and I hope it ends soon and it's your last one! And thank you so much for your kind words.  I'm really barely hanging on it's so hard to push through anything with the spinning and nausea.  What's crazy is at times it randomly just goes out. So it definitely seems like benzo.

[[Be...]]

JBen, sorry about your back problems.  I'm sure you'll be alright eventually.

[[La...]]

Hello to all my buddies,

 

Wishing all of you that are struggling turn a corner soon. Leann  I'm sorry to hear of your struggle. I hope you start feeling better. JBen  Sorry about your disk problems but it's so wonderful to hear that you're feeling calm and healing from this horrible benzo nightmare.

 

As for me I'm really scared.  About 3 and 1/2 weeks ago I had a terrible vomiting episode I was vomiting every 20 minutes for about 6 hours because of bad vertigo. And ever since then the vertigo has been off the charts it even wakes me after I fall asleep and if it's really bad I cannot go back because I'm spinning so badly.  Last night I only slept 2 hours. This makes it so hard to function in any way with the spinning. I hate the nausea that it causes.  It's really unbearable. I don't understand this because I'm 3 years out today. It seems to have all gotten worse.  I've had vertigo throughout this whole process but never like it is right now.  That's why I haven't been posting cause I've been so dizzy and nauseous. I sure hope I turn a corner soon trying to stay positive but it isn't easy I'm suffering so badly.  I have PTSD from all of this.  But I have to say on a positive note I have had some windows here and there on an evening for a number of hours. And last Sunday I had a break from the Vertigo coming and going throughout the day and other symptoms it was so manageable I wish I could have more days like that. Hugs to all!

LiveLife

Congrats Live on turning 3 years! 

I’m sorry to hear about your dizziness episodes. When I got slammed last Sunday mine kicked back up as well. It’s the brain doing more repair. It sucks but it’s a good thing especially this far out. Things will settle down again soon. You hang in there. This Benzo Bully is a beast. He’s a mean old chit head that is known in this community to do that to people who’s this far out. It’s not unheard of to happen. I also got a bit scared when some of my old symptoms I haven’t had for many many months circled back last Sunday. Especially since I’ve been doing so well lately. But as the week went by, I’m starting to settle down as of yesterday. So I know it will fizzle out and I can get back to my daily walks and practicing driving. Believe me when I tell you that I was heartbroken for a minute when it happened because I had just started driving in the parking lot! Just one spot to another and back….nothing big but to me it’s everything! So please don’t be discouraged by this happening to you. Keep in mind that your brain knows how to not make you dizzy and it’s only a matter of time that it will stop doing that.

Sending my hugs to you.

[[La...]]

Hi Everyone,

 

It’s been a while since I posted.  I’m now in month 17.

 

This has been grueling the past 5 months. The burning brain, body and legs still continue and is even more ramped up. It feels like a hot torch on my head and body. I’m so exhausted from the pain 24/7.

 

The past few months a new symptom arrived and I am having severe deep muscle pain in my legs. It feels like someone using a dull knife or cheese grater into my tissues. I wake up with horrible leg and hip pain every night. It feels like a vice just squeezing my muscles. Does anyone else have this? It’s so odd that it’s a new symptom. This pain on top of the burning and electrical surges is almost more than I can bear sometimes. I just keep hoping the next day will be better.

I’m having a lot of chemical anxiety and fear each day. 

 

I try to swim in the evening, but the water now stings my legs because they are so hypersensitive. Taking a shower feels like needles hitting my skin. My sensory nerves are out of whack.

 

I spoke to Baylissa and also Angie Peacock recently. They were both kind and encouraging.

Baylissa said some people don’t get windows and that new symptoms can happen any time, even right before we heal. She also surged right before healing. I’ve been surging for 5 months so maybe that means I am close. I wish it were so.

 

I’m going to a neurologist in June just to make sure there are no issues and perhaps get some direction with all this burning nerve pain in my brain and body that I’ve had for 17 months.

 

I’m so sorry for those of us still struggling so greatly and for the unrelenting efforts we have to do to walk through this. I’m so glad we have each other. Thank you for encouraging me. I’m glad we have this space.

 

Helen, I’m so sorry for the awful wave you’ve had and I hope you are feeling much better. You are so strong and courageous and have a beautiful spirit. Thank you for your encouragement.

 

Jorgen. LiveLife, JBen, Decatur, Fire, and all, I feel  you!!!

LadyD and Hardy, I’m so happy you are doing much better! Thank you for encouraging us.

 

I’m sending everyone healing hugs and love. ❤️

Glad you popped in with an update, Jordan. Sounds like you’re going through a rough patch. Congratulations on 17 months! Wow you’re doing this! 

Don’t be discouraged by these things that happen in this process because Baylissa is right that it’s all part of it. It’s not uncommon to get new symptoms pop up or old ones pop in…I’m having that happen to me too. Like I’m rapid cycling symptoms. But I’m comforted knowing it is normal although uncomfortable. And yes I’ve had the muscle thing you asked about. Tight, painful muscles like I just ran a marathon. Then poof they go away. Then cycle back again….weird and annoying as heck! Heating pad may help! 

Sending you big hugs! Hang in there!

[[La...]]

just ugh UGH ufgyudfgaldsgfaildgahgiglfg so over this sttupid benzo torture stuff! thought id be making some progress by now but still same old stuff, beter than acute but still too messed up to live more than barely holding it all together as single working mom (thank god i can work from home most of the time).

 

when does this torture stuff finally ends? i do get very ok days... after ok (but never normal) nights. like if i make 6+ or even 7 broken hours of sleep without too many weird nightime benzo torture symptoms i can have a good day and feel 95% but it never sticks!!! i might go 2 weeks without one or have 5 in a week (rare), mostly i am glad if i get 2 or 3 ok days a week the rest is various degrees of crap, today and last night even acute like crap.

 

end rant...

 

remaining symptoms

insomnia all kinda of weirds varieties, never sleepy but always sleep deprived after a bad night whixh is most of the nights

hypnic stuff, exploding head syndrome, jerks, jaw jerks, nose clicks, toxic agitation at night that kinda thing

dp/dr though nearly gone

chemical anxiety thought it was gone for over 6 months but ther eit was yesterday and earlier today at least a bit of it

just overal toxic chemical nasty feeling

feeling off sometimes

occassional shoulder jerk or twitch somewhere

sometimes blurry vision right eye

 

i might be forgetting a few

on my good days it really is good though... never had a normal night but they can be very okish, but mostly yes crap

 

its just like never better after a wave liek little wave after little wave with little windows in between but less than waves its this still normal at 19 months off? i was a very short term user, i had physical dependency day 3 without knowing

 

Oh and i take NOTHING, nothing for over 19 months not even otc, i was even scared to take a strepsil the 2 times i got covid

 

Just so tired of this dr jekyl and hyde thing, i know at least i do get good days but i did since 3,5 month off after acute they just never stick!! Guess my rant wasnt over yet

We all know how you feel…frustrated and annoyed! But we can’t hurry this up. It’s out of our hands to control the process that our brains individually heals. The best we can do is just continue to wait it out and stay distracted and active as much as you can but without over doing it. I know as a mom it’s extra hard. But so far you’ve made it! Congratulations to you on that. 

 

[[La...]]

May everyone enjoy this weekend with feeling better. May the window fairy come sprinklers real good with a long lasting window! Wouldn’t that be nice!

Sending you all my thoughts, prayers and love!  :smitten: :smitten:

 

WRISTS LOCKED! 🤝

[[De...]]

Thanks ladyden, 

I really hope so.  Im really struggling with zlot of scary phydicsl stuff.  The drdp and my hesd. Will this ever get z bit more manageable.  I'm so scared.

[[Ha...]]

Just to give hope to everyone, my new found improvements have remained! It’s very exciting.

I had a massively busy day on Wednesday and thought I had overdone it which usually means a bad wave but no. I was very tired but that’s all…….naturally tired, sleepy tired……….normal tired I think but it’s so long since I have felt it I’m not sure. Anyway I had no panic, no meltdown and no insomnia. I’ll take that!

I’m exactly 15 months off today and I realise that feeling this good is pretty miraculous after 40 years of haphazard using.

I still eat my GABA rice everyday but no other supplements.

Everyone said things could change quickly and I didn’t believe it but it’s true.

Your time is coming…….any day now!

Every good wish.

Hardy x

[[...]]

I was able to have coffee this morning. Omg!