6 months off and hope (aka friends - there is hope)

[[Bo...]]

Wanted to write a note to give some hope ….this might trigger some people so please stop reading if you’re at a more sensitive spot in this.

 

I am 6mo off Klonopin after a long difficult taper and then horrific few months off (not normal for long tapers so don’t worry I had other meds in the mix at beginning of starting K, and then after stepping off). I didn’t think for a long time I’d make it to this milestone,  as I was truly living second to second for months. I am so so so grateful I made it this far…. Many things happened that I could very well not be here right now and I thank God immensely for getting me to this point. I had zero hope, just was impossible to think I could live past 5 minutes up until a few weeks ago.

For those that struggle with akathisia… I was extremely unstable stepping off K likely due to stress, taking on more than I could handle bc I felt better the lower I went on my taper, possibly something off with my compound and cuts maybe catching up all at the same time around .03mg. I had hard bouts of aka throughout my taker, especially around my cycle, but I coped thru. At the end of my taper it hit hard and was at a scary level I hadn’t had before. Lots of my symptoms escalated in intensity and I thought this must be acute and kept pushing lower (prob should have held some to try to gain a foothold). It’s hard not knowing what is what in all this and what deems maybe holding.

I kept pushing lower snd phew it got worse but I stepped off at .005mg. The aka was every other day at that point, and then my ‘off’ days I can only characterize as in a coma type feeling. All I could do was lay with my eyes closed, could barely move even a fingertip and could hear my mom and brother around me but was somewhat asleep /couldn’t move or speak. I had to crawl to bathroom and that was a huge win for me to make it. After two weeks off or so, for some reason I got hit with 24/7 aka terror insanity, screaming and thrashing in my closet for the next couple momths straight. I maybe had 20min sleep every 3-4 days, couldn’t see any light (even my phone screen) bc it would make me worse, severe OCD looping awful awful things constant, scraping at and ripping things off the walls, legs back and forth into closet walls- I had bruises up and down my legs, pulling hair out, fighting against the self harm urges that none of us want but for some reason comes with aka sometimes. The extreme SI akathisia, have to be done now feeling, is absolutely inhumane and brutal. I am so sorry to those that have it. I remember clutching my brothers arm and saying please don’t leave me bc it was on me like glue and so overwhelming it was horrifying. KEEP FIGHTING IT….. it’s so hard to describe to others that haven’t had it and it is truly unbelievable. It makes no sense that feeling that comes on and how something can make you feel that terror and overwhelming urge that is not you, and consumes your whole being convincing you you can’t make it one more second. I promise promise promise you CAN make it. That level dissipated for me after 9 weeks, but I ended up in a psych ward due to all of that and it’s not where you want to go EVER. Do everything you can with your support network to keep you at home and surviving bc that level will dissipate, it can’t keep up that intensity. I didn’t believe that it would end. It does, I promise-  others tried to tell me but I thought I had a case that wouldn’t. it does end.

I still have a ways to go - unfortunately on Mirtazapine after being put on it in a psych ward in December to maybe ‘help’ aka, which it didn’t, it made me worse. I’ve stabilized to a degree and currently doing a blind taper off of it. Mirtazapine set off more focal akathisia in specific body parts which has been super super hard, but the intensity has lessened with time and as I lower the mirt.
I had 18 meds pushed thru me between July and December (was in 3 flipping psych wards Nov/Dec and had no choice but to take)….. so just know our brains do heal even after very difficult situations and other medication trauma. 

I am still very early in all this and have a ways to go to be back to ‘me’, (I’m maybe 20% of myself ) and know it will be a rollercoaster and how quick things can change…. but things have improved a lot with respect to the aka and wanted to share that it does calm down. I might very well have it hit hard again and everyone around me now knows we just gotta pull thru it however possible bc it does eventually fade and will leave for good one day. It is all unique to each person and on different time scales….. but what I have found helpful:

-safe space was my closet for a long time, heating pad or heated pillows from microwave. Limiting any stimulation noise or light wise bc those made mine worse.

-I cut gluten sugar dairy early on in taper, but still had extreme GI issues after I got off K- again likely bc my whole body hit a huge wall and was so destabilized prior to stepping off. Baby food pouches and my mom and brother blending my food was and has been helpful to my digestion system to not have to work so hard. I also get more variety after only being able to tolerate 6-7 things. The pouches are expensive but there are various ones out there you might try or can maybe have someone blend fruits and veggies for you. They even have some meat ones I thought would be horrible but they are actually good! Serenity kids and once upon a farm are my go tos. 
even fruit, so no added sugar, can rev my focal akathisia symptoms up. I’ve tested a few gluten free keto chocolate chip cookies here lately and it is for sure something that still revs those symptoms up but was glad to eat something different and a treat. I used to eat any and everything before all this but know I need to keep the focus on the more healthy stuff for awhile.

- screaming into pillows. I’ve had to go into the car also and scream bc Mirtazapine has given me urges to never stop screaming. Awful and I’m sorry if you have this, it’s exhausting.   Even yelling didn’t relieve the mental urge but that’s gone for now … again didn’t think I would get a reprieve from it but I have so I know it’s not forever if I get again. Let it out safely.

-inflatable bat that I would hit things with in my closet or my bed or couch to get out the awful aggression that raged in me for so long (complete opposite of who I am so this at times made me sad bc I didn’t understand why I was so different- it’s the dang meds!!!!! It is NOT who you are or who you’ve become! The real you is still there and all this neuro emotion crap will level out. Let them out, again safely. Angie’s video Video on neuro emotions is good and Jenn Swanktowski has good ones too

 

-hot baths helped the extreme nerve pain that came with my aka and soothed bc nerves can only feel one thing at a time(have changed to rinsing with cold water now after warm shower bc that now soothes, things change in all this)

 -encouraging notes around me that I will make it thru this… didn’t believe it for one second, but was good for my brain to see glimpses of even if I did rip some of them up in rage. Ugh. Leads me to, ripping paper, magazines up… something about ripping paper was helpful and usually was crying non stop doing this.

-I didn’t have so much the pacing bc I was limited physically so was more thrashing around in closet or on bed back and forth. Try to slow down the movements if you’re able, but it’s very hard I know.

- I had vocal tics where I’d repeat the same things over and over bc my body and brain were so activated…. it was almost like a calming mechanism my brain automatically went to. I’d lay and rock and say stuff….. again try to maybe incorporate I am strong I am healing into this stuff bc it’s always good to have these kind of statements to yourself even if you don’t feel it or believe it. Do it or say it anyway. 
These have gone away for now as my brain regulates and calms more. Might come back as I taper mirt, but at least I know they can and will go away for good.

-if you can have support buddies on here, in a group , texting fam or friends, getting our feelings out to someone else in this can help bc we are so scared and all consumed by it …so having someone or people to just listen or get words out to saves us. Having them reaffirm you’re safe and we hear you and you will make it is what we need to hear. My family was so disturbed and in shock by what was happening they got overwhelmed…. But again I have had a severe case so ending up in psych wards is not the norm, even with aka. Please do whatever you can to stay out of them bc they likely won’t know what aka is, and force drug you if you resist what they think you should take. More often than not any meds that might help akathisia, can cause it. Sharing akathisia alliance website with loved ones/your support circle can help them better understand it all without you having to explain in between the hell.

Shifting my focus to texting people helped bring down the terror and needing to move bc I was focused, albeit still on this topic but it was impossible for me to not be on this subject. As our brains heal it becomes easier to shift off this stuff and onto doing something else or gradually talking about other subjects…. It just happens on its own and isn't so scary vs. when we are in harder times and the benzo feels more safe to us/like a lifeline.

- I scheduled calls with coaches Monday and Thursdays and my therapist on Tuesdays once I could speak, so 4 months off, bc I needed to get me to another day and if I had a call it would get me to the next day. I know it’s super expensive but if maybe can do this with someone in family or friend and sprinkle a coach call every couple weeks in a very difficult time, do what will pull you thru to the next day. this has now faded for me and I can get thru my weeks easier on my own- planting a little but, resting my body with dark cloth over eyes and in quiet bc after a long time of constant chaos our bodies need that balance, cuddling my dogs who I can feel joy and love for and smile :laugh at thank you God!!
I had horrible thoughts about them and it made me appalled at myself and scared me so much in how I could go from being the loving all people and animals and fostering dogs, volunteering at children’s hospital every other weekend prior to meds….to hating everyone and everything. It baffles me still that this can happen and I get swings of it now, but I remind myself ok that’s not you bc the real you is showing thru again. It’s very hard not to be scared by this …., it’s the meds yall, the meds and not your new normal, promise. I didn’t want to see one person looking outside bc I was so out of control feeling I was worried I was gong to hurt someone else. Just truly haunting stuff and again, my heart is with you if you’re having this. It will pass and try not to let the fear of that overtake you… this is not you and the more I got scared by the thoughts, the worse it got. I looked at OCD  YouTube’s and started saying who cares and whatever during this episodes. Those I don’t have anymore thankfully. 

-yin yoga morning 10mins in my bed - good beginner one by yoga with . I want a big yoga person before and I’m not very good or able to do longer than 10mins but it’s helpful to stretch in mornings in my bed and hear more soothing stuff. 

-the mindful movement videos I put on at times in the hell, sometimes they helped sometimes not…. I’m not a big meditation person either but will use these going forward to try to bring calm to my body even if I’m not revved up . her voice can be soothing and here is a short one. 

-heating pads and walking around/not sitting and trying to divert away from the awful sensations with reading somerhung or talking to someone is helpful. Doing yoga can sometimes bring this down some.

Continue to nurture your nervous system with the good stuff, it will follow eventually with our brains and bodies calming down. Heck even just doing nothing else but surviving, our bodies and brains sort themselves out and regulate again…. But it’s helpful to do some nurturing :).

I had a lottt of trauma happen in the last 8 months especially at psych wards and hospitals and feared I’d have severe ptsd. I’ve had flashes of it and I’m sure will maybe have to deal with some of it over time, but one this isn’t the time to try to bring that up bc I don’t have a full functioning nervous system, and two, the good feelings that have come back kind of overshadow that trauma right now. People have said many don’t have ptsd from the whole benzo experience even though it’s so traumatizing bc we get all the good stuff coming back, and love for life is so strong. I can see that now some.  As hard and traumatic as this all is, you likely will not have any ptsd from it.
 

I am hopeful to move towards a year off and that’s the last point. Hope…. it was so far gone from me the last 6mo and although it was gone in spurts thru K taper, I had to finish that race and kept moving. Once it happened being off, it was harder bc I thought it was gone for good annd I’m sure the aka hell def made it worse. Hope and longing for making plans for the future came back last week and it is GLORIOUS to feel.

Keep holding on , coping thru and surviving… if you’ve lost hope, I am so so sorry. It WILL come back too and that’s what renews the fight in us to get us to the full finish line in all of this. If you have aka, my heart is with you and please hold on…. let my story give you some hope it will dissipate for you and one day be gone for good. I might need you to help me down the road with this Mirtazapine and give me hope back ;).
 

Hugs and love everyone!!! 

Edited February 29 by [Bo...]

[[Ma...]]

I wish I could send you a ‘Go to Hell’ huge flower basket! As in, go to hell BENZOS! You are amazing. Just simply amazing. 

Having survived such torture and suffering is a testament to YOU and your indefatigable spirit!

I have read of complete and total recovery and healing happening in a moment’s notice and I pray this will happen to you. Sending you those good wishes and vibes! 🙏💕

[[Bo...]]

@[Ma...] thank you and yes we need to send benzos to hell to never come back again!!! 
 

Hugs to you and thank you. I send the same wishes back to you. Hope you’re hanging in there thru this and may much better days be on the way for you soon. Keep your faith and hope. 💜🙏

[[Ma...]]

I’m sure you have heard of Chris Paige. His aka was relentless for years . He’s since started an aka foundation for better awareness. 
 

You might want to contact him & tell him your story-your story of endurance and survival!!

What tremendous strength, tenacity and bravery!

Your day of JOY and healing is coming. I just know it!

[[Bu...]]

@[Bo...] thank you so much for this. I have made so many mistakes and have been in such hell for months and not even off the drug yet. I don’t even know how to taper in such a state. I am so happy you wrote this because it gives me hope and I need that ❤️

[[So...]]

Yaaay, I knew you'd get there!  It's a hard road but I'm so glad you're seeing at least some light at the end now!  ✨️  were probably about at the same place, I'm 7 months off, still tapering mirt, and about 25-30% better but those percents mean a lot!

[[Re...]]

I am relieved that things have improved. I had severe akathisia with uncontrollable movements, diagnosed as severe, so you know how I understand this. The good news is you are finding getting off the Mirt is making you feel better. Mirt made the akathisia symptoms worse for me too -- it hits on four receptors like antipsychotics which I was on and it was a BAD BAD combo. I know how helpful blind tapering can be since I did it when I was adverse. I am glad you chose that, it takes courage, but sometimes courage is all we have left after the benzo cyclone hits. Love to you, buddy, you got this.

Edited March 2 by [Re...]

[[Fa...]]

@[Bo...]  I wanted to say how very happy I am to have seen this post!  Just like a huge exhale over here.  So, so grateful to read this.  Sending you a big hug and lots of love. 

[[pa...]]

First of all, your story is incredible. You are amazing and an inspiration. You really went through hell and lived to tell the tale. Thank you for sharing. Second of all, thank you especially for sharing about your tics. I have felt so so insane experiencing vocal tics, first as an interdose withdrawal symptom, now intermittently ever since going cold turkey. I fear so often that they will never go away and I will be involuntarily word-vomiting for the rest of my life. You have given me hope that one day it will stop. Thank you.

[[Pi...]]

You are an amazing person.  I felt like crying when I read your post.

[[re...]]

I have been watching you for a long time as you were one of the ones than had the damn hypnic jerks (my worst fear jumping as it is what led me to the valium) real bad and I know you have been struggling for a long time now. 

 

CONGRATULATIONS!!!!!!!!! Any victory no matter how small to the world is HUGE for us.