Recovery Story
Hi all- I have been apprehensive to write this, but I think I am finally far enough along in my journey to safely say I have recovered 🙂 this sub popped back up after having been out of it for over a year and I was reminded how I have likely scoured every single post on here desperately clawing for answers and hope, and I wanted to pop in and say there is plenty of hope for all of you!!! ❣️❣️
I am not going to write out my full story here, I will one day, but for right now it is too triggering for me. My story was very severe so I am going to be adding spoiler tags, I highly suggest the sensitive folks or newbies to not click on them, but id like to add them for the more severe cases to give hope to those people as well.
I had akathisia for *trigger warning* >!3 years!< & I suffered a very bad case, at certain times it was inner akathisia, mental akathisia, or physical akathisia but I consistently had some form of it to some extent the entire time. I initally got it from being taken off >!klonopin CT!< in the hospital & not knowing what it was or what to do at first, I tried many different treatments for it and came off a total of 8 meds during my journey, including 2 cts of the >!Klonopin!<. and a few CTs of other drugs including >!Celexa!< and >!Gabapentin!<. The extreme poly drugging i recieved in the hospital and afterwards from various doctors was the reason I believe I had such a bad case. I had many other symptoms than akathisia, but akathisia was by far the worst and I remember thinking, if I could just get rid of that ONE THING I could make it through.
Tips and tricks that helped me in a pinch and got me through -
When my akathisia was very internal, to me this consisted of >!massive pressure around my spine and feeling like my spine was going to rip out of my body, also similar ripping sensations in my chest!< if I took a COLD shower, like FREEZING cold it would snap the sensation out of my body for about 30 minutes and I was usually able to get some sleep during that time. I also had a massage mat (you csn get them for about $100 on amazon) that would distract me from the inner sensations when it was milder. I also had to contort my body in so many different ways, strange positions, mainly with my rear facing up towards the ceiling and head down low, I spent a lot of nights in a curled up ball to the point I now have back issues, but it did help. PRESSURE was also a huge one, I would have my husband lay with his whole body on top of me, and the squeezing sensation would completely knock out the sensations of inner aka. I also bought a 15lb weighted pillow off Etsy and would lay that over my spine. Finally, when the sensations got really bad, sometimes if I laid on the floor and placed my head onto a cool surface, it would relieve it even the slightest.
For physical, honestly just doing whatever you have to do to get the sensation out. I did a lot of rocking, shaking of my limbs, rolling around on the floor, repetitive movements, and pacing. I also had >!vocal tics!< badly and I would consider that to be part of the physical. I would also sometimes >!scratch myself, grind my teeth, and bite myself!< but these actions can be very harmful physically, so I ended up buying a mouth guard. But the bottom line is do whatever you have to do and dont repress it. Ive also had friends who got a pool noodle or something of the sort and beat it into a pillow to relieve their urges.
As for mental akathisia, its a doozy. Its going to get obsessive, terrifying, and dark. The best thing for this is to have supports, whether online, coaches, or irl to offload to and just talk and vent. Theyre going to get very tired of you, so id reccomend having as many people as you can to offset some of the load. Many people kept me alive during this, and I am forever grateful to each and every one of them. There arent as many tangible coping mechanisms for this one, but sometimes I would color just to get my hands moving so I couldnt think as fast, or just write the same words in a journal over and over again. Im so sorry friends, it is so exhausting, but there is a finish line where one day you may rest and have your mind and body back, I promise.
As for how I finally ended up getting rid of the akathisia, that was just time, tapering, and for me I had to get off an offending med towards the end that I was on, >!Morphine!< by DLMT off of it in 5 months. Once I got down to the last >!20mg of it, 1 mg mirtazapine and 2.4mg celexa!<, the akathisia slowly started to go away. Yes, I was put on that medication to treat my akathisia, and it did help at first, but eventually turned on me and made it 10x worse. I am now still on the >!mirtazapine and celexa, as well as 10mg of propanolol I am tapering!<, but I can safely say I really do not think its coming back, as this week ive even had to take a steroid for a full body rash, and I am miraculously fine. It goes away differently for everyone, but id say my case of needing to get off a med was out of the norm, typically what i see most often is people can just hold their meds and it will slowly abate. My biggest regret in this entire process was trying so many treatments for it, there were many times I was convinced it was either that or die, but I learned the hard way as it got worse and worse that I could handle much more than I thought. I have seen people recover by getting on meds tho, so it really is a case by case thing, but getting on meds really is so risky if you don't absolutely need to.
Anyways, it is the end of the night here, im sorry if my writing was sloppy, I really just wanted to spread some hope. You are all stronger than you think & i promise it is possible to get to the other side of this. The only symptoms I am now left with are depression & anhedonia (I think this will take awhile to lift as my dopamine was so entirely screwed), inner vibrations, tinnitus, and neuropathy. None of these symptoms are 24/7. If you look at the list for benzo withdrawal symptoms, I had almost every single one and ALL are gone except for these.
So much love to you all, please keep fighting ❣️ any questions, feel free to ask.