Every week, MISSD receives numerous emails from people all over the world who share with us their akathisia experiences. Sometimes it’s an email from a bereaved spouse whose significant other died akathisia-induced death. Other times it’s a family member whose loved one suffered from akathisia but was fortunate to be accurately diagnosed. Today we share the lived experiences from Ka-sa Tao who recently contacted MISSD.

Tao writes:

A little over 20 years ago I was diagnosed with Bipolar Effective Disorder with Ultra Rapid Cycling and Reactionary Depression. Of course I was placed on medication and at the time seemed to help alleviate some of the symptoms. Fast forward 10 years to when my world began to radically change.  The first signs of the internal irritation began and to begin with I just thought it was something to do with my lifestyle, maybe my diet as It felt like I was on a sugar hype but there was more to the feeling of a sugar hype as it seemed to resonate from every cell in my body.

I talked to my Doctor and had a few tests and was diagnosed with RLS (Restless Leg Syndrome), but as the weeks and months went on the irritations seemed to get more and more intense. I found myself pacing,  some times all night but now it was not just the body irritation but the irritation in the mind the irresistible urge to constantly move, fidget, pace, the non sleeping and the elevation in mood change so back to the Doctor I  went. Further testing and another diagnosis, this time it was Ekbom Syndrome and the continuation of irritation and restlessness of which both kept intensifying and started to take their toll on me due to the lack of sleep along with the constant movement. I not only became completely  physically exhausted but this took its toll on my mental health to the point i was once again admitted to the mental health unit.  The whole time it seemed to me to be more than just the RLS / Ekbom Syndrome as these conditions do not invade your whole life the way this irritation/restlessness had done. Then about 6 years ago one of my Doctors mentioned to me that they had been reading an article in a medical journal about a Neurologist in Sydney Australia whom was talking about a condition called Akashisia and suggested that from how i was describing my symptoms that it sounded very much the same way this Neurologist had described the symptoms of Akathisia. An  appointment was organised to see this Neurologist and after several months I finally saw him and he diagnosed my condition as Drug Induced Akathisia. I was happy to have a diagnosis that made sense and I was happy to take the medication to help control the Akathisia however I was not happy to discover that the Psych medications were the cause of this condition. Not long after i started the medication to help control the Akathisia to notice a massive spike in my NES (Non Epileptic Seizures or Disassociated Seizures). Yes the medication had reduced the severity of the Akathisia symptoms but now the side effect of increased seizures had significantly reduced the quality of my life even further than the Akathisia symptoms.

Alarmingly and a major point in all of this is that not one of the Doctors, Psychiatrists, Psychologists nor the massive leaflets you get with medications had ever mentioned the possible side effect  of developing the debilitating condition that is, Akathisia.

So a little over 4 years ago a took myself of all my medications, that in itself was hard to do at the time but has been even harder to maintain, but if you can put certain practices in place, like Diet, Exercise, Meditation and Reparation, Routine and Patterns, it can be achieved and maintained . This does not mean that every day is good but it means that some days are better than others. Two years into the 4 years and without any medication and a massive reduction in my seizures I was once again reassessed with more tests and this time with a different diagnosis. I was diagnosed with CPTSD (Complex Post-Traumatic Stress Disorder) induced TMD (Trauma Movement Disorder). Some of the reason for this diagnosis is due to the fact that here in Australia very little is known about Akathisia or ever acknowledged and as mentioned before the Pharmaceutical Companies Do Not list this as a side effect nor do the Doctor’s,  Psychiatrists, Psychologists ever mention this condition as a possible side effect so over here the public have absolutely no knowledge of the condition, so you are more than likely to be diagnosed with any thing and or every thing before a diagnosis of Akathisia.

I was not convinced by this new diagnosis so I persevered with all my Doctors and eventually after another 2 years I was able to have an appointment at the New Neurological Movement Clinic in Brisbane Australia with one of the best Neurologists in the country who specializes in movement disorders. Apart from some other FND (Functional Neurological Disorders)  i am faced with, I was finally diagnosed with……………….. Akathisia, Drug Induced Akathisia.

The Neurologist  informs me that they would not prescribe medication, considering the side effects last time i took medication to help control the Akathisia and also the fact that after 4 years of being off  Psych medication the condition has not reduced in it’s severity indicates the condition will at this point be for the rest of your life, and for the most part i have always known this to be the case and as a result I try my best to find things to do to keep occupied. Yes some days are just all too much to cope with the constant irritation in the body/mind driving your movements reducing your sleep all affecting your state of mental and physical health. I once read that Akathisia is called Living Hell Disease, and that some days Akathisia movement can be the equivalent of running a marathon. I must say some days it does feel this way mentally and physically, living hell, ( I once described this irritation / feeling as being like an intense itch that no matter how much you try to ignore it, eventually you just have to scratch it, you have to move as the mental irritation the mental torture drives you mad ) as most people could not, would not, understand what it is truly like to live with this condition.  will not give in to this. I will survive and thrive as best as I can with what I have got in this life.

To date I have not taken any medication for the Bipolar, Akathisia or Seizures  for a little over 4 years.

To other Akathisia sufferers/survivors you ‘re not alone on this journey and to their families and friends, Akathisia sufferers need your support and despite our irritability at times we really do appreciate all the support you provide, so thank you, and any one in the general public, the more people who become aware of this condition, all the better. Better for all those who live and suffer with Akathisia and those who support those with this condition, as this is a horrific and debilitating condition not only for the sufferer but also for those close to them, as people do not realize the daily difficulties Akathisia suffers must endure, simple task like cooking, eating, drinking, walking, talking, concentrating and sleeping can all be made more difficult with this condition, yet alone going out in public to do shopping or going to the theater and or cinema, eating in a restaurant, simple day to day life activities that most take for granted so knowledge is valuable and knowledge needs to be shared and if I can make even just a small difference to those mentioned above through my story then my suffering has been worth it.