Akathisia Anthem

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1. 2012 is where we came in

   Tag: Billiam James

   March 15, 2012

   Building a grassroots database to send a message to Big Pharma

   https://www.jamesgang.com/ideas/tag/billiam-james/

   2018 is where we came out ..

   K-k-k-k
   Make me wanna,
   Make me wanna
   K-k-k-k

   It weren’t no karaoke club
   that got me going
   it was a d-d-d-d
   it was a d-d-d-d

   It weren’t no karaoke club
   that got me going
   it was a s-s-s-s
   it was a s-s-r-i

   Reply

2. NEAR FATAL AKATHISIA

   Email Response From Registrar April 1984 to Me

   Sent: 10 Jan 2013 13:10

   Subject: Suicidal Reaction, Depixol, Recovery
   (Galway)

   To Me

   It doesn’t sound like an accusation at all. I’m sorry for not paying more attention earlier. We got the clinical picture entirely wrong by the looks of it and could have condemned you to disaster. Our diagnosis was wrong. Our interpretation of what was happening to you following Depixol looks wrong. Depot injections can definitely drive people mad and trigger suicide.

   I say we and our because I cannot at this point remember what my contribution to this was and what PAC’s was. But there is no ducking the fact “we” were wrong.

   I’m surprised you’re not more angry – what can I do to help?

   Registrar 1984

   From: Me
   Sent: 09 January 2013 22:46
   To: 1984 Registrar April 1984
   Subject: Fw: Me and Suicidal Reactions, Depixol, Recovery. ( Galway )

   Sent from Yahoo! Mail on Android

   From Me
   To: Registrar April 1984
   Subject: Me and Suicidal Reactions, Depixol, Recovery. ( Galway )
   Sent: Fri, Dec 21, 2012 1:08:28 PM

   Dear (Registrar)

   Please find attached 1. A Letter/statement Account of my Psychiatric Experience 2. Depixol injection write up.

   I’ve browsed and contributed to your website. I’ve also come across you during your Training in Galway .

   I Say Misuse of Strong medication Manufactures Mental Illness: that if a well person were to take depot type medication for a number of years that on stopping they would develop mental illness type problems. I was on depot constantly for 3 yrs (it seemed more), I had major problems coming off. Withdrawal symptoms lasted a long time . Psychotherapy (what I asked for at the start and was denied) was the solution.

   Each sick person costs the Irish Welfare State about 50k euro/yr, each well person contributes an average amount of tax. Everyone in treatment remains sick.

   Please look at the Email Attachments 1. PDF Experience Letter and 2. Depixol Write up. and give me your present reaction to this event and my statement, I presume this has changed since 1984. The prognosis was wrong. I never ‘Presented’ again – I washed my hands of the system to make complete longterm recovery from ‘Schizophrenia and Manic Depression’ combined through Psychology.

   Depot/Suicide: I’m complaining about this in Ireland now and its being Avoided – its frightening the Services. I will push it right up to the surface. My PDF is around the place and what I’ve written is recognizable. I cannot ignore your connection : You were Registrar to P A Carney in April 1984 and wrote me up after my Depixol incident. You are now a Holistic Psychiatrist and expert on drug suicide reaction. I’m writing about this at the moment: you should know it. I need your opinion. Please grasp the nettle.

   You were a Trainee with medical background in 1984. In 1980 I had no difficulty whatsoever in telling Staff in the Maudsley that drugs were the wrong approach. This email is not an accusation even if it sounds like one.

   Please Acknowledge this email and Please Reply with an Opinion

   Yours Sincerely

   Me

   Reply

   • Hi Fiachra Congratulations on pushing this as far as you have – and not giving up. I would like to ask if you don’t mind if there is a legal reason maybe that you don’t name the registrar when you have named the consultant?. Years ago one group used to share names of negative experiences with named medics but kept it quiet as no funds for threatened legal action. It seems we can share opinion about positive experiences openly but not the others still. I was once threatened with legal action from college of psychs for refusing to stop giving members of the college names of those who had been subject of complaints.

     PS Heather is asking for suggestions for her talk at a conference re suicide. If the psych you are in touch with is an ‘expert’ on drug suicide reaction – maybe he could get in touch ?

     Reply

3. FINALLY FATAL ANATHISIA
   (Following Fiachra’s inspirational opener)
   Young man can’t write it himself, for obvious reasons….

   March 2001, slim, shy, studious but dry witted guy aged 21 takes prescribed isotretinoin reluctantly for first time, to combat his wretched acne
   Three weeks later, the hell of Akathisia strikes him
   Nobody understands as he shakes, twitches, picks at his fingers, paces up and down
   ‘Oh goodness’, family and friends respond, ‘the lad’s gone mad, it must be stress’
   But doctors dismiss this jumping bean as a nervous breakdown sufferer
   It shows he needs more meds, they say, he must have been incubating this mental illness for years
   Oh heavens, the family say, why didn’t we spot it before then?
   Ah, well, young men in their late teens and early twenties usually present with serious mental illness at this time
   But he was fine, apart from his acne and he’d had that for years
   Ah but you didn’t know what was lurking in the depths of his mind
   Could this be the acne drug, RoAccutane, as we never wanted him to have it in case of bad mental side effects
   No, that’s a load of hooey, a fallacy, take no notice of all that alarmist hype
   But it says on the leaflet in the pack you shouldn’t have it if you have mental illness in your family and his Grandpa suffered intermittent manic depression
   Ah, now you’re talking, if that’s the case, maybe he’s inherited the manic depression, it won’t be the isotretinoin, that couldn’t cause this
   Are you sure, because we have heard of mental health problems with this drug
   Who is the doctor here? Do you have a medical degree?
   No.
   Well then…
   A bit of ? stelazine is added to the mix
   He says he can hear a voice now, telling him to die
   Oh God, his ma and pa think, the doc must be right, he’s gone crackers
   But the RoAccutane continues, the acne improves
   As the sun sets on the acne, the akathisia rises in our son (as in Dido’s song)
   Our lad gets additional SSRI Seroxat
   He’s still twitching, itching, scratching, (it’s not fleas btw, we checked the cats) pacing, mind racing, tongue whizzing in and out, almost as though it’s a fit
   When we hug him to calm him we feel his heart hammering incredibly fast in his bony chest
   He keeps quietly saying ‘I don’t think I’m very well’
   ‘Please let me go into hospital to stop the voice winning or I may die’
   He goes in
   They keep him for a day and then discharge him
   No one speaks to us, we are just rung by him and told they want him collected and taken home, no place for him there
   He is still a jumping bean but oh so tired
   He doesn’t eat, he doesn’t sleep
   He appears by our bed, shaking and twitching at 7.30 am
   He’s so cold, we wrap him in our duvet and brew up some tea
   He says he waited as long as he could before bothering us but he feels so terrible
   We ring the GP to ask what’s happening about his hospital admission
   We (stupidly but honestly) mention his shivering terror in the morning, and having put him in our bed whilst we got tea
   Ah, (says the GPs further referral letter to Consultant), the parents are babying him, he sleeps in their bed with them…
   More nails in our respective coffins
   We are to blame, our heredity, our fussing, our asking of too many stupid questions, don’t listen to the parents, they are obviously the main problem
   They interview his ADHD older brother who enjoys the attention and being consulted, bamboozled into agreeing with them
   We and our son’s are stitched up now
   The Notes an unassailable account of our ridiculous bad parenting
   We’ve lost all credibility
   We are sad misguided and stupid, don’t waste time listening to us
   He is mad, ill, well spoken, presentable, probably over indulged, stick him somewhere out of the way and leave him to twitch, itch, rock back and forth, and moulder away as things will take their course…

   And so they did.
   Over 11 years he fought back to the appearance of normality, he worked, he saved, he built a business, he never got back to finish his science degree at Uni.
   But the nightmare mind went on and on and on and he blamed himself.
   ‘How weak I must be, I am so ashamed’. he often said
   And, ‘the trouble with me is I never grew up’ which fitted with his being told his fussy ma and pa babyed him.

   Akathisia-bloody Akathisia, and no one who should have known, listened.

   Took his life in the end, but for 11 years of hell it camouflaged him in the eyes of the world into a crazy person, this bright, normal, utterly reasonable, ray of sunshine in our life.
   And they STILL don’t listen, they don’t believe.

   Reply

   • Dear Heather,

     I’m very sorry for your loss. For me Akathisia overrode everything else – but once it was gone it was gone.

     (I’ve had 4 male first cousins who’ve killed themselves on psychotropic medication. None of them had anything really wrong with them – they just had very bad advice).

     Reply

     • Thanks so much Fiachra; that is interesting, though terrible, about your 4 cousins. But also inspiring to learn that you got better and the AKATHISIA did not return.

       For Olly, the Akathisia was the driving factor, and what got him branded as temporarily crazy in the long term (if that makes sense) but it never totally left his mind, though his body did calm down sometimes and he kept very active, mountain biking, playing squash, trampolining, climbing the hills, doing all he could to tire himself out.

       But his mind was never quiet in repose again. He could not find his old inner joy and peace, it was like someone was running an engine inside him, not under his control. He tried everything he could to help himself, had more private counselling than one can imagine, and was found to be, like your cousins, having nothing wrong with him psychologically except that he felt so exhaustingly revved up, anxious and awful. This btw isn’t manic depression, he was never manic, he was never depressed, but he had endless roaring revving waves of unexplained anxiety attacking him all day, which he had somehow to float with or over-ride, to carry on with his work and relationships. Life became such a struggle for him after his first doses of RoAccutane/isotretinoin, and then all the other meds.

       The Olly’s Friendship Foundation Facebook page is full of others who died like him, yet another one, Elliot, whose life and passing is marked today. One a month on average, by the MHRA reckoning, but they say we can’t prove the drug caused the suicide. How can we also prove the suicide came thanks to drug-triggered akathisia? Only those of us who’ve suffered it and live to tell the tale, can say we KNOW it can drive you that far. Like Katinka Newman for example. The rest have died and no longer have a voice, except through us.

       If we had only known in 2001 what AKATHISIA was, and stood our ground with doctors. But our ignorance was our undoing. Olly’s pain was so bad on and off through the ensuing 11 years that neither his dad nor I dare let ourselves remember what we witnessed. He wrote at the end that he felt it (the terrible inner agitation and voids in thinking) beginning again; he was trying to cut down on Sertraline and Olanzapine prescribed for ‘anxiety’, and he felt he just couldn’t go through it one more time. He wrote that he was so SO tired. The sick thing is, he felt it was his fault, and the psychiatrist told him he was entirely to blame for feeling ill, but at the same time he had also told him to stop taking Venlazaxine abruptly, and that he didn’t need any drugs. Good advice if he hadn’t been on this stuff for so long, foolhardy advice because his body and mind couldn’t tolerate the sudden big change.

       I’m not wanting to let the pharmaceuticals off the hook for a second, but the fact that 4 of your cousins Fiachra died presumably because they had unbearable reactions to these meds, and the fact that I had Akathisia after one hormone pill, and again years later, after an 11 day course of steroids, and then Olly was made so ill by all meds, this does make me wonder if we all have something in the genes which means we can’t metabolise this stuff.

       We don’t know how many people manifest AKATHISA because it is so little understood. Or do we? It would be really good if anyone now learning about it and realising they’ve experienced it in the past, could post their experiences on RXISK here. If only we knew how common it is. How did you get yours to stop? Was it a matter of waiting and slowly tapering/withdrawing all meds? We’ve asked a selection of GPs about it – most had never heard of it, the two that had were pretty laid back and dismissive about it. If Olly was still here and had it now, I bet they would still not listen, and surely have no solution to offer. That’s what is so terrifying about all this.

       Reply

4. Mickey Nardo

   Great post Kristina, and Fid.

   Let’s Bring Akathisia Out of the Darkness

   Above all is that a mother’s love doesn’t die with her child, it is simply refocused.

   Sincerely, 

   Kristina Kaiser Gehrki

   https://fiddaman.blogspot.com/2016/09/guest-post-lets-bring-akathisia-out-of.html#.W4fL0_ZFwzM

   Mickey Nardo

   Great post Kristina, and Fid. A quick lookthrough the AFSP boards is still kind of scary [https://afsp.org/about-afsp/board-councils-and-committees/]…

   Bob Fiddaman

   Error 404: Page not found, Mickey

   Mickey Nardo

   https://afsp.org/about-afsp/board-councils-and-committees/

   That “]” at the end messed it up. Sorry. Schatzberg, Nemeroff, Dwight
   Evans, J.J. Mann, KOLs everywhere!

   Bob Fiddaman

   Well whaddya know! Not unusual to see Charlie “Bling Bling” amongst that lot. Thanks for the link Mikey.

   Kristina Gehrki

   Thank you for your nice comment and link. Indeed, the AFSP Board reads like a mix of a Stephen King novel and George Orwell’s 1984. The foxes guarding the hen house and the little chickens (children) die…

   Reply

5. Updates on Akathisia

   RxISK‏ @RxISK 4h
   RxISK Retweeted Wendy Burn  

   Wendy lost her husband to #Paxil induced akathisia (#Seroxat in UK). Follow her on @MISSDFoundation , she’s got a lot to say! #rcpsychic

   Wendy Burn  ‏ @wendyburn

   Wendy Dolin, who sadly lost her husband to suicide, on her work to raise awareness of medication side effects especially akathisia.
   #rcpsychic

   MISSD‏ @MISSDFoundation Jun 25

   MISSD is pleased to release our first podcast in a series called “Akathisia Stories.” Please listen, learn & share.

   https://twitter.com/MISSDFoundation

   Kristina K. Gehrki‏ @AkathisiaRx

   Yesterday the @RxISK Akathisia Anthem was played during an @rcpsych presentation by @DrLadeSmith. It’s good to finally see some accurate coverage of this critical public health crisis. Akathisia awareness saves lives. @DrDavidHealy @billiamjames @springsteen @efosta

   12:05 am – 3 Jul 2019

   Kristina K. Gehrki‏ @AkathisiaRx 8h

   Replying to @jill_d35 @ladiegiz @MISSDFoundation
   It’s difficult to keep communication about drug safety bottled up. The public is increasingly aware that nobody is immune from adverse drug effects. About 500 people heard the MISSD presentation but the large conference hall had room for more. MISSD was pleased with the turn out.

   https://rxisk.org/akathisia-anthem/
   https://rxisk.org/akathisia/

   Reply

6. MISSD‏ @MISSDFoundation Sep 20

   It’s International Akathisia Awareness Day. Let’s save lives together by publicizing akathisia symptoms. Use the hashtag #AkathisiaMatters.

   https://www.einnews.com/pr_news/496883426/international-akathisia-awareness-day-spotlights-critical-adverse-drug-effects

   International Akathisia Awareness Day Spotlights Critical Adverse Drug Effects
   Accurate Info Improves Patient Safety

   Deadly drug side effect recognized through first Akathisia awareness day
   Organizers say the adverse drug effect is kept from doctors and consumers

   https://www.grandforksherald.com/lifestyle/health/4672416-Deadly-drug-side-effect-recognized-through-first-Akathisia-awareness-day

   Dolin founded MISSD in 2010 after her husband, Stewart Dolin, took his life by leaping in front of an elevated train in Chicago. He had begun experiencing sudden and intense feelings of sleeplessness and agitation shortly after being prescribed a generic form of the medication Paxil for anxiety.

   Reply

7. AKATHISIA STORIES

   Akathisia Stories, a co-production of MISSD and Studio C, is a podcast series that features interviews and news concerning the adverse drug reaction akathisia and medication-induced suicide. MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia’s symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.

   In this fourth episode of Akathisia Stories, we hear from Kim Witczak

   https://www.studiocchicago.com/akathisia-stories

   Kim shares Woody’s story — and her own. Her advocacy work has taken her to the nation’s capital not only to testify before House and Senate panels but to serve on the FDA Psychopharmacologic Drug Advisory Committee. Kim Witczak: “Being appointed on this committee I think is a success in that I’m not going to be just the rubber stamp, which I see a lot of. So for me, I think it’s a success that I have a seat at the table. But I’m often the only one that votes no.”

   Reply

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