Tuesday, January 19, 2021

Comments by Malaika

Showing 3 of 3 comments.

  • Going back to the essence of the article, I have to admit to feeling pretty useless.
    Here is someone who has risked everything to speak out in solidarity with those who have suffered as a result of drug approvals that should never have happened. He has sacrificed so much to stand up for people like me and yet I feel I can do very little in return. I can (and will) write a couple of letters, but it feels insignificant.
    The drug companies, the FDA, the attitudes of so many mental health workers…these are just overwhelmingly huge. Change is desperately needed but where does an individual even begin? I’m in awe of Kavanagh’s courage and determination and I really wish I could also stand up to be counted in some way. Yet I fear I fall too easily into the box marked ‘victim’ and, with that, any power I may have simply vanishes.
    I feel increasingly inadequate when faced by the enormity of the battle. Surely I’m not the only one?

  • Thanks for making me laugh boans. I needed that.

    During that time I was given 20mg Asenapine a day, along with 5mg haloperidol, some promethazine, lorazepam, and procyclidine. Possibly sodium valproate, too, although I can’t be certain that that was concomitant.

    I’ve been given so many drugs over the years and, in total, spent over 7 years of my life in hospital involuntarily before the age of 28 including time on an ‘experimental unit’ that was later closed down and the ‘doctor’ in charge struck off. I have no doubt whatsoever that psychiatrists destroyed the life I could have had (not just physically, mentally too). But proving any of it seems impossible when faced with an institution that believes they can do no wrong.

    Currently my brain hurts trying to figure out how long I took the Asenapine for. My memory has been largely destroyed – it’s full of huge black holes. I did pull my medical records, which I received on two USB sticks, but they’re incomplete, mainly indecipherable and are presented (I believe deliberately) as though someone threw all the notes in the air and stapled them together in whatever order they landed. I remember where and when I was started on it but can’t figure out the end date. I know it had been stopped within four years as I recall 20mg haloperidol at that point with no Asenapine.

  • I took Asenapine (Saphris) for a couple of years 2012-2014. It was initiated against my wishes under the psychiatrist’s orders. I had been taking it for several months when I developed severe symptoms of autonomic neuropathy. An attempt to suggest a connection between the two was laughed off as ‘paranoia’.
    Several years on, I am now severely disabled due to progression of autonomic instability and neuropathy. It affects my cardiovascular system, my digestive system, and my urinary system.
    I am told, by the psychiatrists, that there is no evidence that Asenapine could do this harm and that it’s just ‘bad luck’. I actually have no real idea whether Asenapine is truly to blame. The timing may, I guess, have been coincidental. But this attitude from the psychiatrists that the drugs simply can’t be bad because they are FDA approved is extremely dangerous. It also leaves survivors, like me, feeling discouraged that we were ‘unlucky’ to develop a mental illness and then ‘unlucky’ to develop a serious physical one during ‘treatment’. I should clearly never play the lottery!
    As an aside, I also managed to be forced onto Seroxat as a teenager and became one of those who developed serious suicidal ideation as a result. But, again, it was insisted that there couldn’t possibly be a connection.