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Sharing Knowledge Makes a Positive Difference
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
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.
I was once asked, in relation to this condition,”What is the gift you have been given”, Akathisia… keeps me in my here and now and that is a gift I have been given.
Regards.
Ka-sa Tao
Antidepressant Withdrawal Is Increasingly Acknowledged
The Cambridge journal Epidemiology and Psychiatric Sciences recently published paper, “Antidepressant Withdrawal—The Tide Is Turning,” states the medical field was slow to recognize antidepressant withdrawal is a full-blown medical disorder.
SSRI antidepressants instead demonstrate “remarkably high rates of withdrawal reactions … shortly after discontinuation.”
Adverse effects include: “anxiety, irritability, agitation, dysphoria, insomnia, fatigue, tremor, sweating, shock-like sensations (‘brain zaps’), paresthesia (‘pins and needles’), vertigo, dizziness, nausea, vomiting, confusion and decreased concentration.”
To read the full article, click here.
New Drug Promotion & Financial Conflicts of Interests
Three “leading depression experts” promote a new drug but fail to publicize their financial conflicts of interests with the company that makes this product and funded related research.
“Studies show that when research is funded by drug makers, it is significantly more likely to reach positive conclusions about effectiveness and safety of the funders’ drugs.”
“The need for transparency is paramount when the drug involved may cause serious side-effects and potential addiction.”
Read the full article here.
Dementia As an Adverse Drug Effect
Older patients treated with cocktails of drugs for various conditions may be at increased risk for dementia an adverse drug effect caused by “blocking the neurotransmitter acetylcholine. Antidepressants also share this mechanism of action. Such a massive blockade of acetylcholine could have an impact on the brain as regards cognition, memory and learning.”
To read the full article, click here.
SSRIs and Sexual Adverse Effects
“My sex drive is non-existent and reaching orgasm is impossible,” says one man who has taken SSRIs for years. Read the full article here.
MISSD Releases Third Podcast in Akathisia Series
MISSD continues its Akathisia Stories series in this new podcast with Kristina Kaiser Gehrki. Kristina discusses the adverse drug effects experienced by her daughter, Natalie, who died at age 19 two days after taking 200mg of Zoloft as directed by a doctor who prescribed the dose by telephone without seeing Natalie.
“Before my daughter was ever conceived in 1993, the drug companies that made this product knew that it caused akathisia and they knew that akathisia caused unwanted death,” said Kristina.
Listen here or read the transcript here.
Deadly “Side Effects” Don’t Discriminate Based on Age
The FDA carries a Black Box warning on all SSRIs stating these drugs can cause suicidal thoughts and actions. The warning is for consumers age 25 and under. But akathisia doesn’t discriminate based on age–and many sufferers are well over age 25.
“It wasn’t the Joe I knew,” says Janet Schiel, whose husband, Joe, died an akathisia-induced death. “Just all of a sudden, he was a different person.” Almost immediately after Joe began taking the medication, Janet noticed that her husband became paranoid and restless.
Wendy Dolin recalls her husband, Stewart’s, odd behavior that began after he took Paxil. “He was pacing, teary-eyed, always tapping his leg,” she says. “He said, ‘I don’t get it. I feel so anxious.’”
Dolin’s lawsuit against GSK, makers of Paxil, revealed that GSK’s clinical trials showed those who took Paxil were 6.7 times more likely to attempt suicide than those who took a placebo.
Read the full article here.
Suicide and Drugs Marketed as Antidepressants
Sarah bravely shares her late brother’s akathisia-induced death so that others might be better informed regarding adverse drug effects. MISSD appreciates Sarah’s insightful guest post.
If you’d like to submit a guest post to MISSD, please contact share@missd.co.
I celebrated my 47th birthday in May. It was my first birthday without my brother. Last year I had a brother, Jon, who was a successful lawyer, a fantastic father and uncle, a cherished son and one of the closest people in my world. Jon and I got on incredibly well. He was intensely clever and I had basked in his reflected glory throughout my life. He was hilarious and brilliant at times – and occasionally demanding too – but unfortunately, despite everything he was and had achieved, he battled with depression, something I realised the full extent of all too late.
Not long before his death, he had been promoted to the most senior job role of Managing Partner at his global law firm. Yet he had also decided to return to London within the year as he was missing his children terribly and was feeling increasingly alienated in Hong Kong.
Growing up, I was always the one who suffered with depression although Jon had a couple of periods at different times in his life. He knew I had taken antidepressants at times in my life and had always tried to persuade me to cease them. Jon, in contrast, had always tried to alter his own mood using alternative methods, whether that be acupuncture, therapy, or veganism.
On August 29th, 2018, my brother felt he could no longer cope with the pressures of life. Feeling overwhelmed by imagined money issues and his imminent divorce, he went to see a GP in Hong Kong. The doctor told my brother that he thought he was depressed and gave him citalopram, an antidepressant. My brother didn’t really want to take it and go down ‘that road,’ but we agreed that it may just get him through this bad patch. He started taking citalopram on Thursday (30th August). On Friday he called me in a very anxious, uncharacteristic state: paranoid and extremely worried about many things. I tried to reassure him, but I was becoming very concerned myself as this was not Jon’s normal behaviour.
On Saturday Jon started to say disturbing things – for example, he told our father, a brilliant pianist even at 85 years old, to carry on playing the piano and to look after our mother. He talked for a long time to me about mistakes he had made in his life and how he wished that he had left Hong Kong sooner. As well as these regretful comments he worried over imagined things and became increasingly paranoid. He paced. He could not eat.
I called and texted the GP and the psychiatrist in Hong Kong urging them to review the drugs. They agreed that my brother had taken a turn for the worse and so they gave him more and different drugs. On Sunday I booked flights to Hong Kong to rescue my brother. My oldest boy was starting secondary school on Monday so we decided to fly on Tuesday, 4th September. This detail returns to haunt me every day, as I keep asking myself: ‘what if I had flown on Monday?’ I sent my brother a photograph of my son looking so handsome and proud in his new uniform: I was trying, constantly, to keep Jon’s spirits up until I could reach him. Jon replied and said he was a great boy.
What we didn’t realise was that Jon had akathisia and was experiencing psychosis. We (my partner Kyri and I) boarded a flight at Heathrow on Tuesday night feeling happy that we were going to get Jon and bring him home. One hour before we landed in Hong Kong, however, I had a video call from my brother’s maid, Barbara, screaming hysterically. My brother and she had been waiting for a taxi to take them to the psychiatrist’s, when Jon said he had forgotten something. He then ran and jumped from the roof of his building. Barbara had tried to stop him but could not.
The next thirty minutes I spent texting Barbara, Jon’s friend and the doctor to hear if my brother was still alive. They replied by saying they wanted to help me and asked me to come to the clinic. Jon had died on impact.
We left Hong Kong within 24 hours of arriving, deeply shocked and in an utter daze. My brother’s law firm upgraded us to business class upon our return to London, recognizing we could not have comfortably sat near others.
This time last year on my birthday, I was in Majorca with my brother, his children, my children, and our parents. We had just completed ‘the challenge’ – a hair-raising obstacle course involving jumping off cliffs and swimming through caves. Grief of this kind is unlike anything I have ever experienced. It has been long, intense and at times unbearable. Eleven months later, life is still hard but I am stronger. I have fallen apart and am gradually building myself up again for all those who remain in my life.
My message is this: don’t automatically assume that antidepressants will help you. Be aware that some people cannot synthesise them, so they are actually poisoned by their medication and may develop prescription-drug-induced psychosis which can cause suicidal thoughts. This can happen to anyone of any age. Akathisia is an adverse drug effect that is sometimes misdiagnosed as a symptom of an underlying mental health problem. If you or anyone you know are considering taking antidepressants, I direct you to missd.co to learn more about the possible effects.
I am not saying that antidepressants don’t help some people. They do – including myself, ironically. But I am saying that it is essential to make sure you know the warning signs if something is wrong – a knowledge that, sadly, the doctors did not display with my brother.
My brother was indeed depressed, but I believe that what happened to him was a tragic accident, not a suicide. Jon was hallucinating. He was psychotic within hours of starting the medication, and it was a reaction completely beyond his control.
Be in peace my J.