Katie:  It’s an agony that is incomprehensible unless you’ve endured it.  I have video that my kids took.  It’s painful for me to watch.  I physically – I am rocking, I’m marching, I’m flailing.  I’m a trainwreck.  I am physically in agony.  You can see the agony.  Sometimes I would be just sobbing because the external agony is nothing compared to the internal.  The thoughts are so dark.  It’s like the deepest, darkest night of the soul you could endure.  All you can think about it is death.  All I could think about was death, but this is a commonality that I see in everybody’s story, and honestly I thought I was damned and going to hell, yet I was also suicidal.  I have six children.  I didn’t want to die.  I can’t even describe it.  It’s like you’re on fire from the inside out, and the solution is to pour gasoline, with more medication and more medication and more medication.  So you’re burning alive and being doused in gasoline.  

It also gives new meaning to the term gaslight because my symptoms were classic.  So at 48, with no history of mental illness – I did have a traumatic childhood but I was a finalist for Minnesota teacher of the year.  I have a masters-plus.  I was well respected as a teacher in my community.  I taught college classes in the high school.  Like I said, I have six kids.  My husband is self-employed as a plumber.  I do all his bookwork.  I’m used to dancing all this activity, right, without missing a beat, and I took a different teaching job because they have better benefits.  You know, I had been somewhere for almost 20 years and I took the job.  I mean, I never had trouble with anything in my life.  The minute I got there I thought, uh-oh, mistake, because I couldn’t bring my kids to school anymore, my youngest, too, and I missed the community that I used to teach in.  I simply needed to go back to my old job.  I went in for a routine allergy shot, because I get those, and they do a mental health assessment.  I flunked.  So right away they had me see a nurse practitioner who I had never seen in my life –

Andy:  And you flunked because of the feelings you had connected to the job change?

Katie:  Yes, because I was under a bunch of stress.  So I wasn’t sleeping.  I had a ton of regrets.  I was having, like – I had symptoms of anxiety and depression, but to me that’s a normal reaction to a stressful situation, and I could not sleep and I’d be up at night and I’d be walking around the house going, “Oh, my gosh, that was so dumb; why did you do that?”  And it had nothing to do with the new job.  It had everything to do with I missed my old community, right?  It was just not a good fit.  And I missed the routine of bringing my kids to school and the time I spent with them.  

So when I went in for the allergy shot and they ask you questions, mood questions, I was having trouble with insomnia, I had anxiety.   I had no suicidal thoughts.  None.  Not even close.  I wasn’t disturbed that way.  I was just very honest with the nurse practitioner I saw and she did that SQR type form.  I’ve never done those before.  So the way I answered it sounded bad, you know, but I wasn’t suicidal; I just really was not in a good – like, this was too stressful.  It wasn’t a good fit.  And so she prescribed at that appointment Ambien, Prozac, and Ativan.  Never in my life have I taken a psychotropic drug.  

Andy:  Three things?

Katie:  Yeah.  All three.  And in my family, we have a supposed “history” of mental illness, but I’ve come to find out, no we don’t.  We have a history of adverse reactions to medications.  That’s what we have.  

Andy:  And the other thing, too, just to step in, you know, at that time when she prescribed you those drugs, even if it had been one drug, you didn’t need drugs, you needed to fix the job situation.

Katie:  Yeah.  That’s all I needed.  So I took the medication home.  I was really nervous about taking it, OK, because I had never taken these drugs before.  And I went home and I took Ambien.  Now, nobody told me that that can have a paradoxical effect, so instead of sleeping, I didn’t sleep.  So I’d fall asleep for like two hours and then I was up and I couldn’t sleep.  So that didn’t work.  And so I did that for like several days.  I’m not sleeping now at all.  Do you think that’s helping?  I’m not sleeping.  I’m also taking Ambien, which I can’t metabolize well.  So then I take one dose of Prozac.  One dose.  And it was like someone set my central nervous system on fire.

Andy:  Right away.

Katie:  Right away.  Like, I’m not kidding.  Shortly after taking it, I was just like “this,” like in a panic.  Like, I’ve never had a panic attack in my life, but that’s what that was like.  And so I got on my bike and my son was only 11 at that time; he’s now 19.  Like, I couldn’t stop moving.  I didn’t know what was happening to me.  So I got on my bike and we have a really steep hill and he got next to me and he’s pedaling really fast and I went up and down and up and down and up and down, like I was the Energizer Bunny.  I could not stop moving.  I got home and I couldn’t sleep and I couldn’t stop moving.  OK, I took no more Ambien.  I took no more Prozac.  One dose.  One dose of Prozac.  And that was like early in the week.  At the end of the week I got a hold of the doctor’s office again because I’m still a mess.  So that’s how severe my reaction was, and it didn’t just go away.  And I hadn’t taken the Ativan yet.  Too bad, because guess what.  That does help me.  That did help me.  I’m not on it anymore.  But I was terrified to take anything else.  So I get a hold of the doctor’s office and they prescribe Zoloft. 

Andy:  So it sounds like you had no doubt, and there would have been no reason to doubt, that you were having an adverse drug reaction.

Katie:  I told them that.  And this is what they did when I said that, OK, when I go in – again, this is a nurse practitioner, not a psychiatric provider even, and basically right away she diagnoses me with like a latent bipolar disorder, after being given the meds.  So what does she do?  She throws more – another whatever.  And I also, at the same time, got a UTI and I was given Ciprofloxacin, which I can’t take either.  So now I am a hot mess.  

Andy:  Did you know prior to that that you had problems with Cipro or –

Katie:  Nope. 

Andy:  OK.

Katie:  No, but my son had a severe reaction to it when he had Lyme disease as a teenager.  We didn’t know.   We’ve all been – some of us have been tested.  But anyway, so then, long story short, within a two-week period, I was given three different antidepressants, and I’m a hot mess now.  And now I go to a psychiatric provider and in her notes she writes that – you’re going to like this word – I was “akathetic.”  “Akathetic.”  OK, what does that sound like to you?  That sounds like akathisia to me.  And she notes I can’t sit still, that I’m miserable, and I now am suicidal.  So I’m pacing, right?  I can’t stop moving.  She is a psychiatric nurse practitioner; shouldn’t she know what’s wrong with me?   Nope.  She agrees I have a latent bipolar disorder, and they throw more drugs at me.  Polypharmacy.  Now there’s antipsychotics in there.  There’s everything.  

A couple months later – because  it’s hard to get in with psych providers – I went to a psychiatrist, a different one with a different facility.  This is a couple months later now, just two months later.  And in his notes he writes down my symptoms are classic for akathisia, but he doesn’t think that’s what’s wrong with me.  And he does not tell me about akathisia and he does not tell my husband and he does not stop the drugs. 

Andy:  And at this point, this was before you had done any research to discover even that word, akathisia?

Katie:  Yes.  But I didn’t even know the word because all my medical records, the mental health ones, are not available to me.  So the provider I was seeing, both of those first two providers do not release their mental health notes to the patients.  They’re not available to me.  I don’t even know this is happening.  And they’re not telling me.

Andy:  When did they become available to you?  When you become involved in a lawsuit?

Katie:  Yes.  

I want people to have hope.  So my akathisia went on for seven years, in agony, with providers knowing I had it, not telling me.   I had genetic testing done in 2015, shortly after seeing – I lost my job, OK?  I couldn’t function.  I couldn’t keep teaching.  So I had to leave this new position and I didn’t have tenure so the position wasn’t protected.  And I went – so when I couldn’t do the job anymore I went to the Twin Cities to a different provider.  I mean, I was desperate.  I was going everywhere.  My family kept saying it’s the meds, it’s the meds.  And one thing everybody has to know is when you are actively suffering with akathisia, it takes everything in you to stay alive.  You can’t – you’re totally unable to function at 100 percent, so I’m an intelligent, articulate person but I wasn’t – I couldn’t sit on a computer.  I can’t even sit still, how am I supposed to – you know what I mean?  It was all I could do to stay alive.  

So anyway, I had the genetic testing done.  Nobody explained it to me when it was done.  The genetic testing shows that I have a bunch of red flags.  So I have the serotonin transporter gene.  I shouldn’t be given antidepressants.  I have CYP450 polymorphisms; 2D6:  I can’t metabolize antipsychotics; fluoroquinolones; even Zyrtec, a regular antihistamine.  All of these are potentially harmful to me.  That testing was not explained to me by the provider who did it.  I went back to the provider who thought I had symptoms of akathisia but dismissed it.  He comments on my genetic testing, yet they continue to give me antipsychotics and antidepressants.  So what happens is I’m just a hot mess and I don’t get better; I don’t get better.  I wind up in an ER because my kids came home and – one is in high school, one is in middle school.  My kids went through hell.  They lost their mom.  I was somebody they loved and admired, and suddenly I was someone they were ashamed of because I was severely mentally ill.  And they came home and they found me in the laundry room and I’m rocking back and forth, and I’m on a bunch of meds I can’t metabolize.  I am severely sick.  They call my husband, their dad, and he says call an ambulance.  You know, call an ambulance. 

So they take me to the ER and then it’s a series of a mess, just a hotbed mess of communication.  It’s somehow reported that I took an overdose of sleeping pills and my husband found me unresponsive.  That’s not what happened.  It was – and so that was a suicide attempt that didn’t happen.  They also reported that I drove my car into a tree and tried to kill myself.  That never happened.  I don’t know where the provider got that idea.  So anyway, I get left in the ER and a provider comes in, talks to me, and then she writes “Commitment” on a piece of paper and sets it next to me and leaves.  And I look at that and I’m like, I can’t get civilly committed; we’re going to lose everything.  We’re going to lose everything.  And then she leaves me alone with a nurse who’s busy watching a game show and I sneak into the bathroom and there’s a cord and I try to hang myself.  And the nurse comes in – this whole time I’m messed up on the meds.  So I can’t think clearly.  A nurse comes in, she sees – when I tried to do it, the ceiling came down; it wasn’t strong enough.  And so she saw what happened.  I get locked up.  I proceed to get civilly committed as mentally ill because of an adverse drug reaction.  During that commitment it’s noted that I have akathisia.  It’s in the record.  They don’t tell me.  They don’t stop the drugs.  I’m released – and again, I have no access to these records.  None.  And then I get civilly committed again with another provider.  I jumped off a bridge, the Mississippi River Bridge, in March in Minnesota, and by the grace of God I’m alive.  When I jumped from that bridge I was on Clozaril, which is a heavy duty antipsychotic, and that psychiatrist, who is affiliated with the first nurse practitioner I saw, he has it in his record that I’m having an adverse reaction to antipsychotics.  By the way, they all have my genetic testing and comment on it.  He writes in his notes that I have akathisia.  And you know what he did with the Clozaril?  Increased it.  And I jumped from a bridge, and lived.

Then I get taken to the hospital.  When I jumped from the bridge, by the way, I had a dissociative event.  I was at home and I drove a half an hour to get groceries, and all the sudden I was on the bridge, and it’s like, what am I doing on the bridge?  And I turned to walk off the bridge and a woman pulls up and she says, “Honey, honey, don’t jump; help is on the way.”  And I see a police car and I know what kind of help she means.  And I’m like I’m out of here, because they’re going to lock me up and drug me.  And so I jump, right, to get away from them, not to die.  But I don’t have any conscious awareness of how dangerous or I could die.  I just want to get away.  I land in the river.  I swim to the shore.  I walk up the icy bank.  And you know what they put in the notes?  That I tried to kill myself by jumping off the bridge and the police had to rescue me from the water.  Nobody rescued me.  And by the grace of God I wasn’t paralyzed.  I didn’t die.  And I get civilly committed and that doctor does not tell the hospital that I have akathisia.  Instead he tells them to keep me on the Clozaril, and I get civilly committed again.  And I’m drugged again with medications now noted as dangerous and harmful.  I get out of the hospital.  The social worker makes me go to the psychiatrist who kept me on the Clozaril, who didn’t inform the hospital.  And I have to stay with him because I’m under a commitment and he threatens me.  So I’m on Seroquel at that point.  I can’t take Seroquel.  It’s in my first civil commitment that I can’t take it, that it caused akathisia.  

So I did get better, and then I got civilly committed again when I was better, brought back the akathisia.  So the lawsuit in federal court relates to the last commitment, and it’s all facts so there’s really nothing to argue but what’s happening is we’re not being allowed to go to court with my case.  They’re trying to dismiss it and they’re using a criminal case where someone committed – it’s a manslaughter case.  He murdered someone.  It’s called Heck v. Humphrey and they’re saying that I have to get my conviction overturned by executive order, state tribune, something else in a writ – or a writ of habeas corpus.  I didn’t ever commit any crime and I was never violent.  I was civilly committed for an adverse reaction to medication that was well documented, and Minnesota statutes and federal law was violated in those commitments.  They didn’t follow the law.  They drugged me.  They didn’t check my medical records.  They didn’t follow a due process.  They didn’t allow me to hire my own attorney.  It’s just a mess.  And they’re trying to have it dismissed based on a murder case.  So basically they’re equating having any type of a mental health diagnosis with a violent crime that would justify a civil commitment like a murder conviction.

Andy:  And who is the “they”?

Katie:  So we’re in the Eighth Circuit Court of Appeals.  So my lawyer filed in federal court and it’s just – so we just did an appeal to the Eighth Circuit Court of Appeals saying it shouldn’t be dismissed based on a criminal case because this isn’t criminal.  And it’s also being dismissed based on a case involving bankruptcy.  You’ve just got to like how the court works.  And then the last case has to do with a Rule 12 motion, meaning the initial pleading, the initial filing was deficient in some way.  The reason it’s missing things is because I still don’t have access to all these records.  I got some records, and the some records I show reveals that they did diagnose the akathisia; they did not inform me; they continued to give me those meds against my will without court orders. 

– “dangerous precedent, equating a mental health diagnosis with a violent crime” – 

Andy:  One thing that I’ve been struck by in listening to you recount some of this is how often the medical professionals actually were aware of akathisia because what I’ve heard so many times from people is that the professionals they see either have never had an encounter with this term or if they have they think of it as something else that it’s not.  The tragic thing in your case is all these people were recognizing it but doing the opposite of what was needed to –

Katie:  It’s ironic that they knew what it was.  But here’s the problem:  It’s even in the first ruling of the judge.  The judge’s first ruling, it dismisses akathisia as a minor restlessness.  They all are under the impression that it’s a minor – you know, you’re just kind of a little uncomfortable.  It’s just a minor restlessness.  Mine was so severe that it drove me into psychosis and made me suicidal.  That’s not a minor restlessness.  And by the way, there is hope.  It took 17 agonizing months but I got better and I’m on no medication.  So people can heal, but we’re not being given the right support to do that.  

 I just want to be credible.  I want to be heard.  My story could save lives but only – we have to better – so Wendy says, you know, you have akathisia; let them know.  Go to the ER.  Call 988.  Na-nah.  That will get you sent to North Dakota and drugged, according to North Dakota law.  By the way, a lot of laws in a lot of states allow for the forced medicating of people against their will with medications that could cripple, disable, or even kill them without their consent based on an emergency declared by someone who didn’t even check their medical records.  How is that going to treat akathisia and stop the suicides?  How is that going to help anybody?  Not going to.  Do you see the problem?  It’s like they all need to be better educated.  You know, there’s continuing ed for every profession.  Why is there no continuing ed on medication side effects, including akathisia, taught by people who are survivors?  You know, Michael J. Fox has Parkinson’s disease.  Nobody would ever say to him, oh, you don’t know what you’re talking about.  I have a bona fide diagnosis of akathisia present at every time I was committed.  I am alive by the grace of God.  And yet, I can’t get a news story.  Nobody will talk – all you have to do is be civilly committed as mentally ill and your credibility is gone.  I have a senator in Minnesota who is listening.  I have reached out to Senator Tina Smith on the national level for Minnesota.  But some of them just – to placate you but, you know – and by the way, at any time I could be civilly committed again and have the agony of akathisia brought back, and that’s why my lawsuit is there.  Because they didn’t check my medical records; they don’t have to now.  They sent me to a different state and drugged me according to those laws, not Minnesota laws, without my consent, without telling my family.  I didn’t have a right to call anybody.  What a mess.  And now in Minnesota they passed a new law that if a police officer, based on your history and your behavior, is questioning you can put you on a hold, and then I could be drugged again.  

Andy:  What do you mean a hold?

Katie:  A psychiatric hold.  So a police officer could pull me over  because I’m going too fast, let’s say, and say, “Oh, she’s talking fast,” “Oh, she’s whatever,” send me to the hospital in Brainerd who could send me back to North Dakota, where they can immediately start drugging me with medications, against common sense, and I could get civilly committed again.  I don’t want akathisia back.  I don’t ever, ever, ever, ever want that agony back.  And by the way, I can’t even get a teaching job anymore because I’m in a national criminal database because I was civilly committed.  

Andy:  A lot of the stories I hear, in terms of the symptoms, are very similar, but in terms of the life effects, this is – yeah, I mean, just a heartbreaking story and very different from some of the other stories that –

Katie:  It is.  And the hard part for me, right now there are people suffering and they don’t know what’s going on and their family doesn’t know what’s going on, and everything they’re doing is making it worse. 

Andy:  And the thing that I’m picking up from our conversation today, as I mentioned a few minutes ago, I was surprised how many times akathisia came up in these medical reports and whatnot, but it sounds like the awareness has increased but the sense that these medical professionals have – and legal people – have that it’s anything to be concerned about is the next fight in this battle because, you know, it’s one thing if people think, you know, OK, well, I know what that is but that’s – you know, it’s kind of like treating COVID as if it’s just a common cold.  It’s not.  It’s something else.  And I’m not sure that I’ve heard Wendy speak about that in terms of, OK, the awareness is increasing but what we really need to do is drive home the message that this is a life-threatening and absolutely life-changing.

Katie:  Life-altering.

Andy:  The thing that’s so tragic about it, whether it’s your story or whether it’s someone who did take their life, is, you know, I’ve never heard a story yet where a person who was put on a drug was put on a drug for anything more than life was kind of throwing them a curveball –

Katie:  Yeah.

Andy:  And so many people don’t know that the genetic testing can tell them whether they are susceptible to these adverse effects.  And I think I’ve ever heard someone relate what you did earlier which is you went on Prozac and it immediately had a terrible effect.

Katie:  Why are we not genetically testing people?  Because mine was spot-on.  And since then my husband’s been tested and he’s got some of the same ones.  He’s got the serotonin transporter and the CYP450 and he had a hip replacement on one side; they gave him an oxy; he did fine on it; he was happy; everything was great.  The second hip they gave him Tramadol.  That’s an antidepressant.  He threatened to suffocate me with a pillow.  And he got genetically tested after that and sure enough.  And then my son, our youngest son, was waking up in a dead sleep with his heart racing, so I took him in because my mom’s brother died of a sudden heart attack at age 12.  Before testing his heart the doctor wanted to give him an antidepressant.  In a dead sleep.  And I went off on him and my son got mad at me.  You know, “Mom, this isn’t about you.”  Well, then I had my son genetically tested.  Not only did he get the serotonin transporter gene from me; he got it from my husband.  He’s got a double whammy.  If you give my son any fluoroquinolone, too, he’s got the 2D6 as well.  My Jack, I would walk through what I did again in a heartbeat to save my child, and Heather didn’t get that luxury because they didn’t give them that option.  That’s not OK, when they could have prevented it.  So now we know.

So in my family, my cousin died by suicide in 2010 and she was behaving just like me and she was on something and it was some type of an antidepressant, and she had no reason – like, it doesn’t make any sense, and she acted super-bizarrely, out of the blue; she had no history of this, came from nowhere.  Nowhere.  And here’s the sidenote; it’s kind of a separate deal:  So my mom died when I was 10, OK?  She was shot with my dad’s service revolver.  My dad was a police officer.  My parents were getting a divorce.  This is 1977.  He wasn’t supposed to be in the house.  He was violent.  He was abusive, OK?  On his deathbed in 2009 he confessed he shot her.  

Andy:  And all those years in between it had been considered a suicide?

Katie:  You bet.  It still is listed as a suicide because the coroner who did it has died, so it’s very difficult to fix the record.  But what’s upsetting to me is there was a grand jury indictment at the time for my dad and I didn’t know all this, and my mom’s whole family knew he did it.  Other police officers – when he died there wasn’t one single police officer at his funeral.  They knew he did it.  And again, my mom had no history of any mental health problems until she married an abusive man, and then she was put on medication, and my aunt said, your mom couldn’t take any of those medications either, and then she wasn’t on them at the time of her death.  They were getting a divorce.  She was looking forward to moving on and there he was.  And he lied and he sat on it.  And I’m not – there’s nothing you can do about the past, but we were set up from childhood.  And then my sister went to college and had a breakdown and was put on a bunch of psych meds and she’s been on them now for over 30-some years and her health is destroyed, and now we know, guess what, my poor sister was gaslighted with medications for 30-some years.  She doesn’t have a history of mental illness either.  But you can see how the narrative – if I didn’t go through what I did, we wouldn’t know what we now know.

Andy:  And getting back to the medical profession and the mental health profession, you know, you just used the word “narrative.”  The narrative there, from everything that you said today, is, you know, akathisia, it’s just one of the side effects.  But it is the main malady that –

Katie:  It is.  That’s what was wrong with me!

Andy:  And that kind of gets back to what I was saying earlier about the awareness may be increasing but it’s an awareness of something that people are dismissive of rather than thinking this is it; this is the key thing that we need to know; we need to do everything we can to help this person get off these drugs or not go on these drugs in the first place, instead of saying, “Oh, she’s got akathisia; let me give her, you know –

Katie:  Something else.

Since August 15th, 2021, I’ve had absolutely no medications, actually none.