brightside
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Akathisia I - My Story
Akathisia is a consequence of pharmaceutical drug that deeply impacted my life. I wrote three posts about it titled, Akathisia I – My Story, Akathisia II – Deep Dive, and Akathisia III – (my) Practical Application. This is the first post and is about my story and my description of how it feels.
What is Akathisia?
“Akathisia is a movement disorder characterized by a subjective feeling of inner restlessness accompanied by mental distress and an inability to sit still. Usually, the legs are most prominently affected. Those affected may fidget, rock back and forth, or pace, while some may just have an uneasy feeling in their body” (Wikipedia).
While I generally disagree with this definition, this is the general definition of akathisia. Akathisia is considered a singular symptom of various drugs, however it is closer to a constellation of symptoms. The primary akathisia symptom is restlessness, however many other symptoms exist, like suicidal and homicidal ideation, anxiety, terror and panic, complete inability to relax, insomnia, intrusive thoughts, anhedonia, and more.
How does Akathisia Feel?
Akathisia is usually a combination of two types of sensations and symptoms, physical and mental.Physical:
The physical sensations are usually the ones that are the most noticeable both to the observer and the person experiencing it. They consist of a specific sensation that feels strong but also “vague”; in the sense that it cannot exactly pinpointed, as opposed to a sensation made by skin contact to something, or an itch, or a cut. (this is due to Akathisia being a problem of the brain, not nerves or injury to the peripherals.) This sensation is extremely uncomfortable, and also painful. It is overwhelmingly intense, often feeling like you are being tortured. It makes one want to jump out of his skin, rip limbs off, and escape the state of living. To relieve it, you are “forced” to move. Moving is a voluntary movement, but depending on the severity, it can be impossible to restrain yourself.As this sensation increases so does the movement, and people go from bouncing or shifting their legs to pacing around the room. When trying to hold a conversation or stand still they might shift their weight off of one foot to the other, move their limbs oddly, or perform other movements. Once exhausted, people often lay down, and continue to move until they become exhausted from even that. The best way to describe how this looks is with the word “writhe”, and it feels exactly how it looks like.
A possibly uncommon symptom that I frequently had is discomfort in my teeth. This discomfort feels just like regular akathisia and made me want to rip out my teeth just like it made me want to rip out my limbs. Pressing down on them was my version of pacing and I would often gnash my teeth. Note: I know this sounds like bruxism, but I am confident that it is not. I had bruxism in the past, and it is different to this. Bruxism is more like a stress response and coping mechanism, driven by a subconscious desire to grind teeth. Akathisia in my teeth feels like the intense discomfort that makes me want to pull the teeth out.
Mental:
The mental symptoms are no better, typically consisting of dysphoria and panic. The dysphoria feels like a very strong emotional pain, and often has no “origin”. You simply are upset but about nothing. It feels like the worst imaginable event has occurred that cuts you deep to your core, except that there is no event or crisis. It is impossible to live life with this symptom and you become completely flooded with negative emotion.Lastly, panic plays the other part in instilling the worst headspace possible. People who struggle with akathisia typically report a feeling of panic, and it is usually this panic that fuels the long and exhausting sessions of pacing around rooms. Combined with the intense dysphoria, the panic completely shuts down the person experiencing akathisia, and turns them into an exhausted, never still, emotional mess. It quickly destroys their life and desire to live.
The desire to end your life appears almost instantly. It is deep and irrational. It appears not because of a thought pattern or life event, but from an incorrect realization. The realization that there is no way out, no way to soothe the pain, no way to ignore it, no way to manage it, and the only option that remains, is death. When akathisia results in suicide, it is not from weakness; it is from the rational mind wrongly thinking that there is no other way out but through this violent measure. (I know this might sound like typical depressive thinkinging, but having had both, it is different. There is a distinct difference. Perhaps this video can explain it better, www.youtube.com/watch?v=_6eix3cdwoU )
Because of these symptoms, it is no surprise that akathisia takes people’s lives. There are many stories of people losing their loved ones shortly after a new SSRI has been started or after some other drug has been introduced or stopped. Unlike what medical professionals say, akathisia is not a movement disorder, or some other random symptom, it is THE symptom to look out for. Even though akathisia presents visually with movement, it is a serious dysfunction of the entire brain. Chronic akathisia is worse. Without a drug inducing dysfunction, chronic akathisia becomes a metabolic problem, usually with many other symptoms.
My personal experience with it has been utter hell. It is, with no exception, the worst state I have ever been in. It is worse than deep depressive episodes, exhausting dysautonomia, intense lactic acidosis that leaves you bedridden, or any other mental space I have experienced. Like I described, it is torture, and there is no escape. I occasionally resorted to unhealthy coping habits, but for the most part I managed to wait out my symptoms. I am glad that I was able to live through it and can write about it. Because I lived, I feel it is my responsibility to write about this and try to inform and help other people who struggle with it.
Life before.
Before the development of my akathisia, my health was slowly declining over the course of five years. I assume that this decline was a prerequisite for akathisia to develop, but I can never know for sure. To add to that both sides of my family have health issues, allergy and autoimmunity being common from one side, and heart and liver disease from the other. Therefore, my general health state has been “prepared” for a major health problem, like akathisia.First year.
After a painful tooth infection, I was prescribed two antibiotics, and some painkillers. The antibiotics were amoxicillin (which I have successfully taken before) and Metronidazole, and the painkiller was Vicodin. After the initial treatment, I noticed some serious digestive problems but eventually found a way to keep it to a minimum through a restrictive diet. This diet included me avoiding gluten and dairy, and little amounts of meat due to a low appetite.After a couple of months, I started noticing that my general state started declining even further. Unfortunately, not knowing what to do, I just continued doing what I was doing. Eventually, I noticed major symptoms, such as intense blood sugar swings, intense fatigue, bounding heart, and restlessness. It took me another few months before I identified the symptoms, and realized that I had akathisia, dysautonomia, and SIBO.
Fortunately, around that time I also discovered the first tool in my health toolbox, iron. Around six months after the initial Metronidazole dose, after doing lots of pacing, I randomly decided to drink some iron. And to my surprise, within 30 minutes, I achieved peace! Finally, I was able to lay down and just... relax. I remember that moment very distinctly, and that was my first realization, that whatever is wrong, can still be managed, and what I was currently doing clearly was not helping.
Current.
So far, it has been 3.5 years since my tooth infection and I am happy to say that I have my akathisia under control. During the first and second years I seriously struggled, with some very intense peaks where I descended into very unhealthy coping habits. Unfortunately, I haven’t full “cured” it, and I still occasionally get “flare ups” which are directly connected to my gut function and nutritional status, but overall, I’m OK. I would say I am 80-90% symptom free, and mainly get the mild desire to gnash my teeth and mild RLS.
My Ask
If you have loved ones that take any medication, learn a bit more about akathisia. Even identifying akathisia in somebody can be of extreme help. When I realized that I was not crazy but experiencing a serious dysfunction, I was relieved. I gained confidence that I still existed, and I just had to find a way to deal with this problem, and maybe then I could go on living my life.The Akathisia alliance is a good library of information. And here is a short video going over akathisia.
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