My Makeshift Akathisia Clinic

[SchizoPolyGymnast]

Good morning SaSu and welcome to what will hopefully be my weekly akathisia clinic! I'm not an expert, just a fellow sufferer that knows a few things. Strap in, my friends.

If you take psychotropic medication, especially antipsychotics, you may be familiar with the side effect known as akathisia. If you look it up online, you will most likely see to it referred to as a "sense of inner restlessness." It primarily affects the legs. There are a number of first hand accounts of this side effect online that you can read if you wish. Chances are, you were not warned about akathisia before you were given your prescription and if you are anything like me, you were bewildered and terrified when you first experienced it.

Let me start with my own story.

My first antipsychotic was prescribed in spring of 2018 and like most people, I had never heard of akathisia and was not warned about it. It didn't hit me right away. I was at work preparing for a med pass when I noticed it. This time was different in that instead of affecting my legs, it affected my torso. If I could describe it, I would say that it felt like my soul was itchy and that every one of my cells was being stretched out and ready to burst. I couldn't stay still and I couldn't move, just a feeling of total paralysis. I dismissed it at first, like I feel most people do the first time they experience something they can't explain. But it became a daily occurence and it became a little worse each time. I had no vocabulary to describe what was happening and I came to my own (supernatural) conclusion. Souls from purgatory were clawing at my insides and trying to drag me to the underworld, and the only logical solution was suicide. I seriously considered drinking the morphine and benzos I had access to, and I ended up leaving shift to go to the ER. Did I get answers? Of course not. But I knew this couldn't continue. I don't remember when I found out about akathisia, but it was a game changer. Even if my suffering continued, having the vocabulary to describe it was enough to keep me going.

Today? I rarely experience akathisia and I view it as a biological, psychological and spiritual phenomenon. I have read some research on it and I have devised some strategies to fight against it. I have inspirational anecdotes to share. And it will all be posted here.

Enjoy!

 

[timf]

Some have found relief for RLS (restless leg syndrome) using an over the counter remedy called SAMe.

It is mainly for treating depression and they caution not to combine it with other medications. However, it was useful in reducing RLS.

SAMe

Understand how SAMe works and its potential effects on depression and osteoarthritis.

www.mayoclinic.org

 

[nobodycaresaboutme]

I experienced akathisia when I abused diphenhydramine. it was terrible. want to sleep but cannot because feeling too uncomfortable. but not completely bad as a form of sh. (well I don't wanna do again anymore)

I heard Akineton (Biperiden) should be prescribed when patients suffer from it. I wanted the medication, but ofc had no chance to be prescribed just in order to enjoy diphenhydramine misuse

 

[HD72]

Good morning SaSu and welcome to what will hopefully be my weekly akathisia clinic! I'm not an expert, just a fellow sufferer that knows a few things. Strap in, my friends.

If you take psychotropic medication, especially antipsychotics, you may be familiar with the side effect known as akathisia. If you look it up online, you will most likely see to it referred to as a "sense of inner restlessness." It primarily affects the legs. There are a number of first hand accounts of this side effect online that you can read if you wish. Chances are, you were not warned about akathisia before you were given your prescription and if you are anything like me, you were bewildered and terrified when you first experienced it.

Let me start with my own story.

My first antipsychotic was prescribed in spring of 2018 and like most people, I had never heard of akathisia and was not warned about it. It didn't hit me right away. I was at work preparing for a med pass when I noticed it. This time was different in that instead of affecting my legs, it affected my torso. If I could describe it, I would say that it felt like my soul was itchy and that every one of my cells was being stretched out and ready to burst. I couldn't stay still and I couldn't move, just a feeling of total paralysis. I dismissed it at first, like I feel most people do the first time they experience something they can't explain. But it became a daily occurence and it became a little worse each time. I had no vocabulary to describe what was happening and I came to my own (supernatural) conclusion. Souls from purgatory were clawing at my insides and trying to drag me to the underworld, and the only logical solution was suicide. I seriously considered drinking the morphine and benzos I had access to, and I ended up leaving shift to go to the ER. Did I get answers? Of course not. But I knew this couldn't continue. I don't remember when I found out about akathisia, but it was a game changer. Even if my suffering continued, having the vocabulary to describe it was enough to keep me going.

Today? I rarely experience akathisia and I view it as a biological, psychological and spiritual phenomenon. I have read some research on it and I have devised some strategies to fight against it. I have inspirational anecdotes to share. And it will all be posted here.

Enjoy!

I've waited for u to continue this but nothing. I've suffered 5 years and it gets worse every day. I just want to end. I want help to end. Don't tell me something to take or suggest I meditate. I have tried it all. Nothing helps. Every day is a new hell.
S

Some have found relief for RLS (restless leg syndrome) using an over the counter remedy called SAMe.

It is mainly for treating depression and they caution not to combine it with other medications. However, it was useful in reducing RLS.

SAMe

Understand how SAMe works and its potential effects on depression and osteoarthritis.

www.mayoclinic.org

SamE can be very dangerous for people on certain meds or with certain mental health issues. Please be careful what u suggest here. U could cause someone lasting damage.

 

[SchizoPolyGymnast]

I've waited for u to continue this but nothing. I've suffered 5 years and it gets worse every day. I just want to end. I want help to end. Don't tell me something to take or suggest I meditate. I have tried it all. Nothing helps. Every day is a new hell.
S

Hi there! I apologize that I have not been as consistent as I originally planned. I have a chronic physical illness that is, currently, resisting treatment and I'm incapacitated at times. I'm not about giving people false hope or saying the same BS that you've probably heard before. If I'm taking my time, it's because I'm reading research, first- hand accounts, mulling it over and testing the methods on myself before I recommend them. I want to produce quality content, but I strive to be consistent as well.

I'm actually planning on doing a post tonight. I love that you mentioned meditation because I've had that recommended to me as well, and my opinion is that it's the absolute worst advice imaginable for akathisia. I'd like to talk more about what to do instead.

If, all things considered, I am not being helpful to you, that's okay too. I used to live with daily akathisia that landed me in the ER and I DO understand. And I will do everything I can to help bring others to the other side.

 

[SchizoPolyGymnast]

Good morning, my lovelies, I apologize for the delay. I thought I had this amazing idea for a thread but no idea how to actually execute it. Not even sure how I am going to start this, so I'm just going to go for it. I had horrific akathisia back in 2021 when I started my gymnastics journey and over time, I noticed that a) my symptoms were a lot less intense and b) the more intense symptoms were more bearable. At this time, my akathisia primarily affected my legs so that is where my focus will be. In future installments, I will discuss torso and internal akathisia.

First, I want to start with something that DOES NOT work for akathisia and that is meditation. As usual, your mileage may vary, but I think telling someone to meditate when they have akathisia is probably the worst advice imaginable. It's like trying to hold back a sneeze. Meditation is often touted as the solution to just about every ailment ever and even as someone that uses meditation for certain things... I'm sick of hearing it. I was talking to a friend about akathisia and she recommended that I use meditation because "it helps you be more in tune with your body." As they say on South Park, "Are you high or just incredibly stupid?" Who wants to be more "in tune" with their DNA strands having seizures? Why not tell deaf people to listen more closely?

Bitterness aside, meditation, in my opinion, is contraindicated for akathisia for two reasons.
One is that it can intensify the physical and emotional sensations and, therefore, dramatically increase a patient's suffering, right? If meditation is about being "in tune" with your body, that basically means being hyper aware of every little tug and shock or twist and I just can't think of anything worse. No, you want to be *less* aware of those things and more able to live your life, okay?

The other reason may not be so obvious. It's that, psychologically, meditation gives space for potentially destructive or delusional thought processes to germinate. People often talk about meditation as clearing the mind, and while that can be good if negative thought processes are leaving...a clear mind also means that negative thought processes can enter. When I had akathisia for the first time, I kept trying to calm myself using traditional methods...deep breathing, things like that. Well, I got calm enough to be hyper aware of every electric shock I was feeling, and my mind was open and focused enough to wonder why. I came to the conclusion that souls were dragging me to the underworld and that my only relief was in suicide. I landed in the ER twice. Didn't get answers, just a big ass bill.

The question remains: If meditation and similar practices are not working for you...what will? I say that if those cells and those mitochondria want to move, they should be moved into exhaustion in every direction. Gymnastics is great for this but you don't need to do cartwheels on beam to follow these suggestions. I can't promise that this will work for you, but it has worked for me, and it's basically free with no dangerous side effects. So here goes.

How does one work your muscles into exhaustion? I want to expound on this more, but I will start with some exercises. You can do lunges and splits, preferably side splits. Middle splits aren't as effective for leg akathisia. Start with lunges and go as low as you can. Challenge yourself to go a little lower each time. Once you get comfortable with that, challenge yourself to start doing splits. I believe these are amaaaaaazing. You kneel down in a lunge, lean back on your back leg, and sliiiiiide your legs out into a split. Go slow. It doesn't have to be a full or even a large split. You just want to contort those cells in a way they have never seen before.

A good technique for torso akathisia is a bar hang, which most gyms have. It has a similar effect as an inversion table and causes your whole body to be laid out like putty. If you can't sustain a hang in midair, try resting your knees on a block or exercise ball.

Bonus points, and this is my personal favorite. If you can lay flat on a soft surface at the end and have air conditioning blast on you, do this. If you have access to a vehicle, sit in the front, position the seat how you like, and blast the AC. Visualize the agitation being frozen into a state of absolute zero, or being submerged in liquid nitrogen. The goal is to be able to separate yourself from the bodily experience. I have not yet tried cold water immersion but I suspect the principle is similar and I want to try it soon.

Try these if you are able. If you are not able, or don't have the means, I will discuss modifications and supplies in an upcoming post. Or feel free to try something similar on your own.:) For best results, do these multiple times a day. If you have a job, you can request reasonable accommodation for this under the ADA. I will discuss that as well.

This is what I will leave you with tonight. Please try these and tell me what you think. I wish you the best of luck, and my hope is that I will see you next week!

 

[HD72]

None of this helps the inner extreme panic and fear that never goes. I can't leave my home I shake I can't take other meds I react to everything. None of this helps that. No dr helps.

 

[SchizoPolyGymnast]

None of this helps the inner extreme panic and fear that never goes. I can't leave my home I shake I can't take other meds I react to everything. None of this helps that. No dr helps.

Can you tell me which meds you are currently taking? I used to work as a licensed medication aide. I *might* be able to do some digging and add a little insight.

So you described inner terror, which is incredibly common in akathisia. What physical symptoms are you experiencing?

 

[SchizoPolyGymnast]

Good evening, my lovelies,

How are we doing today? I'm at work right now but I want to talk a little bit about sensory therapy tonight. No exercise or crazy stunts, just a few moments to yourself to feel good.

 

[HD72]

I'm sorry but I've tried all these little tricks. I never have moments to myself just constant movement and pain. This is useless. I'm sorry.

 

[SchizoPolyGymnast]

If it's not working for you, it's okay to say so. I won't be angry with you.

I share tips that have worked for me personally, and I share them with the general SaSu public in case they might benefit. That's all.

 

[SchizoPolyGymnast]

Good morning lovelies! Tonight I will talk about a classic...propranolol. I want to talk about my experience with it, its limitations, and a little something on the side that makes it work better.

If you have been diagnosed with akathisia, you probably have tried propranolol. It's the mainstay of akathisia treatment. I personally have had some success with it, but I find there is a law of diminishing returns. The more you take, the less effective it is. Resist the urge to pop those tabs like tic tacs. On top of that, propranolol can be dangerous. Taking propranolol too liberally, especially when you don't have high blood pressure, can, obviously, lead to a dangerous *drop* in blood pressure. It might be ever present, or it might only occur when you change position, such as from sitting to standing. This is called orthostatic hypotension. Be on the lookout for lightheadedness, fatigue and shortness of breath, especially if you are up high or you are driving. If you have hypotension, consuming water and salt may help and if at all possible, resist the urge to hyperventilate. If this does not work and your symptoms get worse, don't be afraid to call emergency services.

Tl;dr: If you take propranolol, use it sparingly. If you know you are approaching a high risk period for worsening symptoms, take it an hour or so before so the medication can absorb before the bomb drops.

Propranolol is available by prescription only and is not safe for everyone, especially if you have low blood pressure or certain heart conditions. As always, seek out expert advice and be safe.

Another thing: I mentioned that propranolol is a classic mainstay of akathisia treatment and that's true. And I'm somewhat frustrated by this. I feel like in medicine, anything that works somewhat well some of the time turns into THE state of the art treatment. It definitely works and if it doesn't work for you...you're lying. Or you're doing it wrong. There's nothing else that we can do, so it sucks to be you. No one with any chronic condition should have to deal with that. A condition like akathisia, especially, that is invisible, misunderstood, isolating, and frankly, carries a high risk of suicidality deserves better. If we can't deliver better, then we can at least stop with the gaslighting.

So I'm at the end of my overnight shift, and I know akathisia is about to hit me hard. What do I do?

Chamomile tea. Hot, lukewarm, or iced, doesn't matter. Chamomile tea is a well known anxiolytic, and so far, the scientific research supports this view. It's suggested that one of the compounds in chamomile, apigenin, affects neurotransmitter pathways. Chamomile is not known to have any risks, aside from a possible allergic reaction. If you find that you do not react well to, or simply prefer not to use, psych meds, this ingredient may help or, at the very least, not cause any harm. Well worth a try.

I take about 60mg of propranolol, that seems to be my personal sweet spot. And I take it with chamomile tea. Iced with monk fruit sweetener. You can do this by itself, but I personally recommend doing it *in addition* to a dose of propranolol, which is also an anxiolytic. Combining the two can give you more bang for your buck. The primary benefit of this combination is in its chemical properties, but if you are so inclined, you can add a sensory or visualization element if you wish. Drinking iced drinks helps me visualize my molecules freezing to a stop. The more immersive the experience, the more likely you are to have success in reliving akathisia symptoms.

As always, I cannot guarantee that my suggestions will cure your symptoms, but I take care to only share those things that I have researched and experimented with myself. I have many more tidbits to share with you and I will continue to post here as I am able. Feel free to share advice of your own if you have any.

 

[HD72]

I am prescribed it and they have me take it every day. Akathisia alliance says chamomile can cause or aggravate akathisia and do not take it. The propranolol suddenly stoppped working (not that it worked much at all)when they put me on b12. I stopped the b12. The propranolol does nothing now. At first it made it worse. Then about a week after stopping the b12 it stopped making it worse and just does nothing again. I tried 2 different b12. I have MTHFR deficiency so I need b12. I tried several versions. I can't do cyanocobalamin of course. I can barely eat. I know I'm low in many things but when I try to use the supplements I swell like a balloon. I don't know what to do. I don't know if this is akathisia or something being caused by my stomach and deficiencies in nutrients. I'm so bad I can't get to the dr.

 

[toughtimes100]

I'm sorry but I've tried all these little tricks. I never have moments to myself just constant movement and pain. This is useless. I'm sorry.

I'm exactly the same with Akathisia. Pure torture

 

[Frenchy222]

I also have chronic akathisia and a bunch of other symptoms.