KERRI LYNN
Hello and welcome to “Akathisia Stories,” a podcast co-production of MISSD and Studio C.
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.
On this episode, we hear from Kerri Lynn. Kerri says that she was taught to trust doctors, taught to trust prescriptions, taught to trust the assessments she received from hospitals. And she did, but, she says, this trust nearly killed her.
[Kerri Lynn] It’s traumatizing what I went through. I never, ever in my life thought a person could feel like that. I never thought a person could think like that, especially against their will. I just knew inside of my soul, this is not me; this is not who I am.
[Andy Miles] We’ll have Kerri’s full story in a moment.
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Kerri Lynn was born in Long Beach, California, but was raised and currently resides in the upper Midwest. She grew up in what she calls a dysfunctional home and early on gravitated towards addictive tendencies. At 13 she discovered drinking. As she matured, Kerri chased other self-destructive behaviors and relationships, until her self-described out-of-control nature led to an ultimatum from loved ones: she had to find a solution how not to be self-destructive. Pain and circumstances, she writes, drove her to seek help from 12-step recovery, which, as we'll hear in our conversation, led to her 13-year nightmare with prescribed medications. During these nightmare days, she says, her medical vocabulary expanded as she learned words like suicidal ideation, disassociation, delusion, profuse night-sweats, rapid irregular heartbeat, and agoraphobia. Kerri is now 11 years medication-free and stable and says that today she has a strategy for living that works. We spoke in mid-December over Zoom.
AM: Let’s just start from the beginning and tell me how this came to be that you are today in recovery, and why, in the very beginning, you went on medication.
KL: Sure. Thank you for that, Andy. Like you said, yes, I am in recovery. That is correct. Through my teenage years alcohol was definitely a thing, to the point where at the age of 16 I got put into an outpatient program that was supposed to be for six months and I ended up staying for two years because I had liked the counselor so much at the time. Even though I was in that outpatient setting as a child, I still didn’t really understand or have an intention of not drinking. As a teenager I just assumed that that’s what people did or kids did and I was not really interested in them telling me not to. It wasn’t until later on in my early 20s that I started to maybe connect that some of those people that were telling me I had an issue with alcohol and some things that had happened in my early 20s were – I wondered that maybe, so yeah, it was those kinds of things that just started to, you know, really resonate with me. Like maybe I do have a problem with alcohol. And then I had gotten a new boyfriend at the time, and in the beginning we partied and drank and stuff together, but about six months in I think I was partying a little bit more than he thought I was and he said, you know, you either need to cut back on this or we need to be done, kind of thing. And that’s when I decided to walk into a 12-step recovery program and that’s what led into the medication nightmare that I went down.
So what I came to learn later, addicts not in their active addictions can become very restless, irritable, and discontented, which I did not know was a normal state for us not doing those things, so it was becoming a little apparent to the people that were around me. And under the recommendation of my grandma, she encouraged me to go to my doctor and get one of those – what they referred back then – and this was in 1997 when it started – one of those happy pills that a lot of people seemed to be taking. And I had an uncle that was on them at the time and so that’s why she had brought that up to me. And so, with no thought and wanting to feel a little bit better, I decided to go over to my family doctor’s office and ask for a script, and I wasn’t even sure what I was asking for a script for; I just said, you know, one of those happy pills. And he knew right away what I was talking about. There really was no questions asked; there was no test given; there was no nothing. I just bounced out of there with a prescription for 20 milligrams of Prozac and I left and went and had it filled and started taking it. And three days into taking that medication, I was at my grandma’s 75th birthday party with my family. We were sitting at the Country Kitchen; that’s where she liked to eat. And all the sudden, out of nowhere, I just got this spontaneous urge to want to stab my family members in the head with my fork. And I was terrified. I just froze and I had never experienced or felt anything like that in my life. And I got this dizzy sensation followed by some discomfort in my abdomen. And then what I’ve now learned was disassociation and the slight feeling of disassociation, where I felt like I was kind of maybe starting not to know the people that were at the table with me. And I remember I was so terrified by the feeling that I was experiencing I started to slide in my chair under the table for fear that I might actually react to it with no control from myself. And I immediately looked over at my boyfriend at the time and I said, you need to get me out of here and you need to get me out of here right now. And so at that point I was having difficulty even walking out of the restaurant and he helped me get into his truck and I got into the passenger seat and all the sudden just these feelings started to come over me and I curled up under the dash of the car. I couldn’t even sit in the seat because of what I was experiencing, that I don’t even think at that moment I could really explain what was happening to me. And he had gotten me back to his house at that time. I went straight into the bedroom and everything just started to hit me. I was having difficulty walking, difficulty talking. I was having problems with being able to turn on the TV, which didn’t make any sense to me. I started to feel like I was going to become the people in the TV. My mind just started racing uncontrollably. I mean, it was just going like a freight train. I couldn’t make sense of it. I was getting these nauseous feelings in my abdomen, which I’ve now come to learn was serotonin syndrome, but I didn’t know it at the time, followed by just these homicidal and suicidal urges that I could not explain. I was having profuse sweating. And then I got to the point where, like agoraphobia, I couldn’t at that point leave even the bedroom. It started to feel like my life was all the sudden going to get broadcast out on the news and people were going to know what was going on with me. I mean, just a lot of crazy, bizarre things were happening to me in this moment that I could not figure out for the life of me where they were coming from, why I was experiencing them. I tried to ask my boyfriend to help me get in the shower to see if something – if that would maybe help with something. He had to carry me over there. I remember I said in the bathtub while the water was running I felt like my head was not connected to my body. I couldn’t even walk back to the bedroom, and I was terrified.
I literally wondered if this was because I had stopped drinking. I could not, for the life of me, figure out what else it could be. I mean, me taking this pill would never in a million years have been a thought because, number one, why? And why would my doctor ever give me anything that potentially could do something like that or cause something like that in myself? So it wasn’t even on my radar, not even a potential thought. And so I remember trying to sleep that night and I was having great difficulty with that. I had woken up a couple times, too, finding myself trying to bite my boyfriend in my sleep, which I thought was just bizarrely odd. I woke up the next morning and I reached in and I popped another one of those pills. I’m thinking, when is this thing going to work? Like, what is going on? And it got worse.
AM: So when he did write that prescription for the Prozac did he mention any possibility of any sort of side effects and did the label itself have any information about that?
KL: No, he did not say one word to me about anything. When I picked up the script, I had never really been on medication or anything like that before. The pharmacist did not disclose anything to me to watch out for, anything like that. I didn’t – I honestly, I didn’t think nothing of it. Nothing. Nobody said anything to me, not one word about. I mean, all’s I knew in my head is I’m taking a happy pill. I had taken something that was supposed to make me happy. That was it. That’s what I thought I did. I just trusted my doctor and did what I thought was OK to do, and it led into this.
So yeah, the second day after experiencing all this pop another pill; I’m waiting for it to work. It just gets crazier and crazier. I mean, my thoughts are – like I said, they’re going like a freight train; they’re telling me to run outside naked; they’re telling me to call my ex-boyfriend’s mom and see if she wants to have lunch, to try and hang out with his sisters. I mean, nothing is making sense. I finally couldn’t take it. So this was a Friday or Saturday and this goes back to that counselor that I really liked when I was 16. For some reason, and I can’t say why I didn’t call my doctor, why I didn’t whatever – I got an old phone book and I called him at home and I started to tell him that something was wrong and I really needed help and I didn’t give him all the details of what I was experiencing because I didn’t want to scare him. You know, and I was scared and it was a weekend and I didn’t know. So he encouraged me to get out a journal and just start journaling everything I was experiencing and come into his office right away Monday morning. And so I hung on through that weekend and that’s what I did. My boyfriend ended up having to carry me into his office because I couldn’t walk. And as soon as he opened up the door, my eyes were swollen shut from crying, the stress that I was under. I was completely disheveled. And he said, you know, what is wrong with you? And the first and only thing I said to him was I’m going to kill people. And he immediately took me back into his office. I can’t say specifically how long we were back there, an hour or two. He started asking me just a series of questions all over the place. I was doing everything I could to answer him as honestly as I could. I finally reached down in my purse and pulled out this bottle and I said I had just started taking these pills. And he grabbed the bottle, looked at it, immediately turned his chair around, got on the phone, called my family doctor and said, we need to get her off these pills immediately. And they did. But my psychologist at the time – he was a counselor at that moment – but he did not tell my doctor the extreme side effects that I was dealing with. And he didn’t tell me at the time exactly that he felt it was the medication that was doing that to me, and I was in such distress I didn’t think to ask at that moment. All’s I know is he got me off that pill and I started to feel better immediately. But then I was put on 40 milligrams of Paxil from there, and I was on that for a couple months. I don’t know why I necessarily ended up on the 40 milligrams of Paxil, probably because I was the restless, bitchy discontent part that I was dealing with and I didn’t understand at the time that it was the Prozac that was doing that to me. So I ended up on 40 milligrams of Paxil. I’m on it for a few months and then all of the sudden I become pregnant with my daughter. So I call my family doctor, he says just quit the medication, so I did.
AM: So at that point the Prozac had had a pretty immediate effect on you but the Paxil doesn’t sound like it did, then.
KL No. Within three days of the Prozac, it was instant. The Paxil was not. That came about a year later.
AM: After you gave birth to your daughter, it wasn’t long before you called your doctor and asked to be put back on the 40 milligrams of Paxil.
KL: Which he did prescribe me. So I was taking that. I had noticed, after being on it for, you know, a few days that I felt nothing, which I had – I can’t say nothing, but I didn’t feel my feelings at the level that I had prior, which I thought was odd. And where I really noticed it is a couple days after we came home from the hospital with my daughter; my husband was not a fan of the dog that we had had at the time and any time he would even make reference to getting rid of him, I would ball my eyes out, because I’m a dog lover. And a couple days after we came home from the hospital with our baby, he had taken the dog to the pound and I came around the corner and he was gone and it didn’t bother me. And I thought that was a little concerning, so I called my doctor to discuss that and the only thing he said was he felt I was too smart for my own good. And I stayed on the 40 milligrams of Paxil and just kind of went about life with that. And about a year into being on the 40 milligrams of Paxil, one day out of nowhere I came down the stairs and I felt nothing, literally nothing. And I don’t know how to describe feeling nothing, but I felt nothing. And it terrified me. Just blank. Just – I don’t even know how to describe it. Nothing. And I immediately called my doctor’s office and explained to them what was happening with me, and I’m guessing he must have known something because they pulled me off of the 40 milligrams of Paxil and he tried to put me on Zoloft. And that didn’t work. Within a couple of days of taking the Zoloft, I started to experience suicidal thoughts. I was having sweats. I was having heart issues. I was extremely agitated. I was just experiencing all kinds of wild things, again that were not – that were very difficult for me to make sense of or to understand. So I called him back and he tried to take me off the Zoloft and put me back on the Paxil, but at that point it was too late. I was in what I now know to be akathisia, and I checked myself into the psychiatric hospital.
While I was in the hospital they tried to give me Doxepin and it ended up knocking me out for 24 hours. They referenced it as excessive sedation in my records. Then they tried to give me .25 milligrams of Klonopin. I’m not sure if I took it or refused it. They then tried to give me Depakote while I was in the hospital. This drug knocked me out as well. It was then discontinued. They put me on 100 milligrams of Wellbutrin. I am not sure how long I was on this drug, possibly only while in the hospital or taken off shortly after my release. I had complained that it caused severe ringing into my head. I was then put back on the 20 milligrams of Paxil. The psych doctor had felt that maybe I can handle a lower dose of the Paxil. So I left the hospital on 20 milligrams of Paxil. I had been on the 20 milligrams of Paxil, so this is around 2002. So the first hospital was towards the end of around 2000. Now I’m at probably around the beginning of 2002 when this happened and I had been on the 20 milligrams of Paxil for a little over a year, again. So the 40 a little over a year, now the 20 a little over the year.
I, all the sudden, out of nowhere, just like that, not feeling anything, I suddenly started to struggle with some suicidal thoughts. I was having some horrible thoughts that were just getting directed in some different areas. I was having thoughts of just flipping out on people. I just felt like I needed – I don’t know how else to describe this, but it just felt like I needed to cause harm. It was just an agitation that just, again, was not making sense to me. I was having nightmares. I was having sleep problems. I was not wanting to eat. I was getting mood swings. I had lost interest in things. I developed anxiety and panic attacks out of nowhere. And I just – I remember sitting at work one day and this was just so bizarre and unlike me, but this coworker came over to talk to me and I just felt like I had this impulse, like I just wanted to slap her across the face, and it really freaked me out because I just knew that was not me as a person, who I was, and it was just too much for me to handle how I was feeling, what I now know to be akathisia, which the drug, like the first time, had built up into my system causing me the difficulty, and I ended up admitting myself back into the hospital yet again.
By this point, I was learning some about the potential side effects of the medications. So other people had experienced some things with some of these medications. I had a sponsor that was pretty educated in some of this stuff. He had read, like, Dr. Ann Blake-Tracy’s book about side effects of medications and things like that, so trying to bring it to my awareness, but I struggled greatly with that, too, because I’m looking at people in the program trying to educate me versus the people wearing the white coats that are the doctors that have went to school and are supposedly trained in this stuff, trying to figure out for myself, who do you believe and who do you trust?
So I end up back in the hospital, I’m becoming aware of this might be a medication thing and trying to ask them while in the hospital to please let me off these drugs at this point. I want off them. I want to see if this having anything to do with why I’m experiencing or going through what I am. And I got the talk about how diabetics need their insulin to survive and how mental illness needs its medications to be able to function and operate. So basically they were trying to convince me that yet again this is me; I mean, this is happening to me because of me. So it was from the stress that I was under, the stress of my childhood, that my husband was going to be going to Denver as the reason that I was having the issues that I was having, and it couldn’t possibly be the drugs, is what I was being told.
I ended up leaving the hospital this time on 10 milligrams of Paxil and 10 milligrams of Celexa. Several months into taking this combination of the 10 milligrams of Paxil and Celexa, I went one day to pick up my script from the local pharmacy and the pharmacist came over to the window and stressed to me that those two medications should not be mixed together, that they were very dangerous to be mixed together, but yet my doctor prescribed them.
[In] 2006, my boyfriend and I decided we wanted to get married and to try and have another baby. I was taking the 10 milligrams of Paxil and the 10 milligrams of Celexa. At the time, I remember back when I had gotten pregnant with my daughter how the doctor had told me to just quit taking the 40 milligrams of Paxil. So I decided to take the same approach with the 10 milligrams of Paxil and Celexa. And about five to seven days into not taking the meds, I wasn’t feeling right. I was feeling pretty sick, actually. So I ended up checking myself back into the hospital. It was just too much for me, too much for me to bear at the time.
AM: So during all this time, then, as you say, you’ve started to identify the drugs as the potential, you know, primary issue, rather than it being you. But it sounds like, to me, for most of these years, you were having, you know, these various episodes and having to hospitalize yourself and that sort of thing, in a way that would have made you think that this was you, that this was your mind, that it wasn’t quite right. Because, like, now you know all of these things about own own biology, your own chemistry, the fact that these drugs do have these potential harms, but at the time you didn’t have that sense. What else would you have been left to conclude but that it was you?
KL: Well, and thank you for that. And here’s the thing: During the entire time – I’ll be honest with you. In the beginning it was very confusing, but I know myself. You know what I’m saying? I know my person. I know my thinking, for the most part. I know my behaviors, for the most part. So when this stuff was happening, like I said, as it was going on, at first it was really hard to understand, but then the severity of it and the thoughts that were coming. I mean, yeah, I was in recovery and I was this and that. But in my mind, it was not a justification for what I was experiencing and especially at such an intensity that I was experiencing it. There’s a part – and I’m not a doctor or a forensic or a neurologist, by any means – but it seems to be that there is a part of your brain that these medications specifically work on that seem to focus on – with the homicidal or suicidal ideation like a group setting, and it’s almost like whatever you do to them you have to do to yourself. It is the most bizarre thing and it seems to center around – and this is going to probably sound a little crazy when it comes out of my mouth too – but guns, ropes, knives, and impulse – impulse, like you just have to drive your car into a wall or you just have to go off a bridge or you just have to something. And I know – I knew, I just knew inside of my soul, this is not me; this is not who I am. And it was very frustrating to try and not only battle against my personal self versus what was firing off in my brain, but then to have to what – and maybe it’s not the right word, but battle against my doctors at the same time of trying to fight for myself saying, I don’t think this is me. I don’t really think this is me. And they’re coming back saying, well, you know, yes, this might be you. I don’t know how else to explain it.
So with your question, no, in myself, in my soul, I knew. I knew that I just knew that this was not me but I didn’t have the education or the expertise to really pinpoint what may be truly firing it off. Was I on to possibly the medications? Yeah, but how can I prove it? I don’t know. And from what I was in, it didn’t appear like they were going to let me off, and I don’t know even in that how I seemed to lose my power to that. You know what I’m saying? Who’s forcing me to take this, in some ways? But once you’re in it, you’re in it. I don’t know how else to explain it.
AM: And what did family conclude during those years, as far as you know?
KL: My family was onto it. My husband from well in the beginning was saying, you know, these medications I don’t think are good for anybody really to take, you know, you really should think about that. But I’m just, you know, “What do you know? Have you ever, you know” – I mean, after that first experience with Prozac – it’s traumatizing. It’s traumatizing what I went through. I never, ever in my life thought a person could feel like that. I never thought a person could think like that, especially against their will. I can’t even put into words what that’s like to have your body and your mind doing something like that. I’ve always been under the belief that I’m kind of in control of my thoughts and my actions. You know? I never thought I would face or see a day where my brain could somehow seem to override me or I’d have to fight against it.
It sounds really bizarre to have to explain it that way, but I think anybody else that maybe experienced it would be able to understand what it is that I’m saying or somebody survived it would be able to understand what I’m saying. I would almost equate it to childbirth. You know, I could sit and explain all day long to somebody that’s not experienced it what it’s like, what it’s going to feel like, maybe what you’re going to feel, this, that, and whatever, but until you actually go through it and experience it, it’s a hard thing to understand.
I would also like to note that after starting these meds I was to see my doctor on many occasions with different health complaints that I had started having during this time, which was abdominal distress. I had experienced constipation with these things. I developed chronic sinusitis, tonsillitis. I ended up developing TMJ. I had gotten tennis elbow. I had chronic blood in my stool all the time, and that happened right after the first pill in 1998 and it continued until the last medication that I took, which was in 2011. And because of that situation alone, I ended up having five to six colonoscopies during that time, two endoscopes, and a laparoscopy with nothing ever found. I was also given chronic antibiotics that didn’t help my situation, and I had difficulty with them even, and they were actually making me sicker during that process. So anyway, I was going through all of that while dealing with the rest of it.
AM: Yeah. Well, let’s jump back, then, into the chronology.
KL: Yeah, OK. So 2006, this is happening; I’m trying to fight my way through it, doing everything that I can. I am just – I’m not doing well. I have to function. I’ve got a daughter. She needs me. I can’t, you know, keep relying on my mother. My family is trying to – I’m like, I think I need to go back in the hospital; they’re trying to fight me. You know, don’t, don’t, don’t, wondering if I’m going to just get drugged more, what’s going to happen from that, but at that point, you know, it is what it is and you need help. You’ve got to go to what you think might be the safe place. I mean, I checked myself back in.
Well, what I did before I went back in the hospital is I went in to see the P.A. So I go meet her, I tell her – I mean, the akathisia, which I didn’t know the term at the time, but I am antsy, I can’t sit in my seat, I’m rubbing my pant leg, I’m crying, my body is in this impulsive feeling, I’ve got this suicidal ideation. I mean, I can’t sit still to anything. I’ve got sweats. My heart’s fluttering. I mean, I’m going through this whole thing and I’m explaining to her what is going on, and I said I think I need to go back into the hospital, and because I was being so honest and up front with her at the time, she allowed me to drive home to get my own suitcase and to go drive myself over to the hospital and check myself in. And so that’s what I did.
While I’m in the hospital, we start going through the rounds again. One of the biggest things, too, that I’d like to point out, which I didn’t know was a sign of toxicity on these medications, but with each instance and each hospital trip, I would get this feeling of just bugs under my skin, just endless bugs, all running up and down, all over the place inside of me. And it’s very irritating feeling. It can be a side effect of some of these drugs, which is a sign of you’re hitting toxic levels with them, which I did not know.
I was released from the hospital inpatient setting and it was then highly suggested that I attend the outpatient program that they offered. So I did. I was released on Cymbalta and .25 milligrams of Klonopin to be taken in the morning and at night. Two weeks into taking the .25 milligrams of Klonopin, I was totally normal. Then all the sudden, I’m driving down one of our main streets and it hit me again, that nauseous roll in my abdomen, which, again, I now know is serotonin syndrome, followed by suicidal ideation. I just had this impulsive need to drive my car into a wall or get a rope and hang myself. And I’m like, oh, god, oh, god, here we go again. I started sinking down into my driver’s seat and I happened to pull into a parking lot and got my mom, and I’m like, something is wrong, something is seriously wrong; you need to call the doctor; you need to call the doctor. So that’s what they tell you to do. So I called the P.A. from my outpatient program and I report what’s happening to me. He then, a couple days later, comes in and gets me and we go in this little room at the outpatient clinic and we’re sitting at this table and he proceeds to tell me that he talked to the doctor and they don’t think that it’s the medication, that they think it’s me, and he tried to give me a script for Lamictal. And I remember looking at that box, feeling like I did, and it was a little trial box, and all the sudden something just happened in me, Andy, and I was just like screw this, just screw this. I think I know when something is wrong with me. I left and I went to that counselor that originally helped me with the Prozac reaction and I sat down and I told him everything that was happening to me and that I was extremely suicidal, the nauseous rolls. I was curled up in his couch as I was talking to him. And it just so happened that they had brought in a psychiatrist to their clinic at the time and he went down and talked to her and she said she is more than likely reacting to the Klonopin, but I cannot treat her; she is currently under the care of another doctor.
So I got out of that. I immediately went under her care. She yanked me off the Klonopin and I returned back to normal. She says, let’s just try and take you off everything and start over. I’m like, what? She said, yeah, we’ll just take you off everything – my Nexium – I mean, I’m on Nexium, I’m on MiraLAX, I’m on all kinds of stuff now during this thing that I’m in. So she says we’ll just take you off and we’ll start over. I said, OK. So that’s what we did. I started having a lot of anxiety, panic attacks. I was having bouts of OCD, depression. My psychologist and my psychiatrist are working closely with me as I’m going through this entire event, but nobody was quite sure what, again, was going on.
AM: So your psychologist eventually said he wanted to send you to an allergy clinic in the Midwest. What was your reaction to that?
KL: I think it was to my advantage that my psychologist knew me and knew my family, and given the fact that he was part of the journey from way back when the Prozac reaction happened and even from my teenage years that he just knew something else was going on there and we needed to figure it out. So I said OK. I didn’t know anything about this clinic that he wanted to send me to. I just knew that I was in a bad spot, needed help, and I trusted him very much. So I called the clinic in the Midwest from my psychologist’s office. I was in his office that day. They told me I couldn’t get an appointment for four months. I looked over at my psychologist and I said, I’m not going to make it four months, there’s just no way, and my psychologist took the phone, ended up talking to the doctor – this was on a Monday – and he said, get ready, you’re going Thursday. And after a two-hour consultation, my allergist looked up and said, I think what you’re dealing with is more physical than it is mental but I can’t be sure until we go run some tests. And I can’t tell you what that felt like, Andy. The hope, the relief that maybe there was going to be some answers given to what I was experiencing – it was a feeling like no other. But I was still a little skeptical at the same time, so I didn’t want to move too much into yet until I knew for sure.
So we went over to this room and did some allergy testing. What was really interesting about this clinic is it tested different than the allergy clinic that I had tried to go to here. They tested for what is called delayed reactions where you have to report back a reaction after 24 hours and 48 hours, because I was told you can have a reaction up to 48 hours after an exposure. And that’s, again, different than what they did here. And what we had found out through that testing is I had actually had allergies and developed sensitivities to lots of food, chemicals, some molds. Anxiety, panic, depression, clogged sinuses, weepiness, abdominal pains were some of the reactions that I experienced in there. So because of what I went through over at that clinic it was strongly suggested I totally revamp my diet. So I’m in the middle of this thing and now I’ve got to change up the entire way of which I eat. So I had to avoid things that I was sensitive to, so sugar, dairy, gluten, wheat, things like that, soy, whatever, and go to a more organic-type approach away from synthetics that are used in a lot of our food system or whatever. So that’s what I did. I flipped my kitchen, taught myself a lot about food, vitamins, et cetera. What I thought was really interesting during this time was the importance of nutrition and how low levels and toxic levels of vitamins can affect a person. I also learned that psych meds can deplete necessary nutrients in a person; that was not ever explained to me either. And from what I’ve learned even up until this point today, doctors, a lot of mainstream doctors aren’t taught nutrition in their medical schooling and so the depletion of nutrients – that’s more of something that a pharmacist is going to know more than a doctor, which I thought was interesting. So anyway, they can deplete that. So I changed up my diet, got rid of the things that I was sensitive to right away. Several things did start to improve. My tonsillitis got better. My TMJ got better. The abdominal bloating got better. Panic subsided some. Some of the depressive symptoms lifted. As far as the synthetic chemicals, when he discovered my sensitivities, it was encouraged that I get a chlorine remover in our house, which I did, that I take out all synthetics as far as plug-in air fresheners, fabric softener sheets, scented laundry detergents, perfumes, colognes, scented candles, my cleaning products, my standard cleaning products. I had to switch everything over to an unscented Shaklee, including my dishwasher fluid and things like that.
So I do all this stuff. Like I said, a lot of things are starting to get better for me, but I’m still dealing with some difficulty as far as shortness of breath and things like that that aren’t getting resolved with this, so another a recommendation of my psychiatrist – she talks me into going onto 10 milligrams of Lexapro, which I did. I ended up becoming pregnant. Shortly after starting the 10 milligrams of Lexapro she encouraged me to stay on the medication throughout my pregnancy. My son was born; he came out beautiful and perfect, which is great. I ended up shortly after that – so I had been on it probably two years, around that time, and I started to develop the paresthesia and stuff again, very similar to what happened with the buildup of the Prozac in my body before. Because of that I was recommended to the neurologist; they ran tests; nothing was found. I am pretty distraught, beside myself. I end up, because of everything that is going on and not a lot of answers, seeing all the different specialties at our hospital here with the things that I was experiencing from head to toe, from neurology, cardiology, rheumatology, internal medicine, hematology, blah, blah, blah, was not getting answers.
AM: And eventually you got approval to check into the Mayo Clinic.
KL: I spent two weeks over there; they basically redid all the tests that they had done here. Nothing was found. I left with a diagnosis of visceral extreme hypersensitivity; they said they diagnosed it 20 times a day. I said well, then you probably have 18 suicides a day. I came home completely defeated, not knowing what was wrong. My heart was going crazy. I was having sweats. I was having paresthesia, still had the blood in my stool. Nothing was making sense and I seemed to — what felt like exhaust every specialty and what I thought was the world’s best hospital at the time with no answer. I called my allergist. That’s when he told me about the P-450 test. It’s a cytochrome genetic enzyme test that shows how your body processes medications. I had the test. It was $450. I remember walking into the doctor’s office and him sitting me down and looking at me and he said, we know you’re not lying about everything that I was experiencing. What it ended up showing was that I have fast and slow metabolizers in my liver and my kidneys in particular genotypes, but the biggest of which was I am absent what is called a GSTM1, which is a glutathione gene that centers in my liver. Sixty percent of drugs go through the liver. My body did not have the ability to clear these medications as they were building up in my system, so that’s what was happening between the fast and slow metabolizers explains why I had the immediate reaction to Prozac, depending on the genes that it used to work in my body versus some of them building up in my body.
So basically, everything that I was going through and experiencing was not me; it was not because of my childhood, any of that stuff. It was purely a result of my body’s inability to process the medications, and the things that I was experiencing were side effects, nothing more, nothing less. I was getting to toxic levels on those medications is when the akathisia and things like that were hitting. So in the hospital setting, over the course of those three trips in 2000, 2002, and 2006, with the max-out of the medications and just more attempts at diagnoses and more treatments with pills and stuff like that — none of it, from what I went through with this thing, was a root issue for me. It was all symptoms. It was all side effects, whether it be side effects of the medications or nutritional deficiencies that I was experiencing from what the drugs were triggering inside of my body.
So with people that are missing the GSTM1, it said right in there that it is possible that you could develop, you know, this cancer or that cancer, head, neck, whatever, bladder, but it also specified a person missing this gene can develop chemical sensitivity. So when I got my test back, that’s when the diagnosis came of multiple chemical sensitivity. Multiple chemical sensitivity is a newer illness. It’s been a controversial illness for some time. It can happen from a massive exposure to a synthetic chemical or a chronic low-dose-level exposure to synthetics in an environment. In my case, being on the medications, going up and building up in my liver and getting exposed to chronic low-level synthetics that my liver doesn’t have the ability to clear, so I’m getting to toxic levels, which is now triggering me to become hypersensitive to other synthetics in my environment.
So when it came back – when the test came back I was instructed to get off everything that I was on and I had to do everything I could to try and detox my system and my environment the best that I could to try and sustain life. I have to be extremely careful when I go out in life. I’ve had to learn how to eat, safe places that I can go. If there’s places that have, like, air fresheners, if I get around people that are wearing fabric dryer sheets, things like that, I have to excuse myself or remove myself because I can get breathing reactions; I can get dizzy spells; I can get different experiences from that. If I wasn’t doing these things, I would more than likely be housebound due to the damage that happened to me after being on these medications.
But what it really comes down to for me, Andy, is I’m not a mental patient. I never was a mental patient. You know, do I have life stuff in my history? And that’s another thing in the hospital that they have you do is they have you write out a life history while you’re in there and to try to find something to kind of pin some of this stuff on. And when you’re in such, you know, stress and pain and whatever, at least I did, I wrote out everything – everything and anything that I could think of that – whatever. And who has a perfect life? Nobody does. And what they do – and again, this is my opinion, my experience – is they pull anything out of that to try to blame this on. You know, my biological father or my this or my that or whatever, and at the end of the day, it wasn’t it. It was not it. And that was one of those things, too, where it was like why could something like that 20, 30 years ago, that I have no feeling, no memory about no nothing be causing me such severe issues right now? And that’s where they kind of go into that your subconscious – and it’s – no. And I knew that I knew that I knew and I knew that there was no amount of – after learning even with getting this P-450 back and learning about my genetics and my inability or whatever – you know, when I was doing my 12-step program, I mean, I’m in there, I’m dealing with the psychologist, I am working my 12-step program, I’m developing a relationship with my higher power, I’m sponsoring people, I’m doing everything that is required of me to do, and I still feel horrible. So it didn’t matter how much counseling I was going to do; it didn’t matter how much spirituality I was going to gain. None of that, at the end of the day, mattered. Is it helpful? Absolutely. It’s hugely helpful. But was it going to fix my liver issue? No. Was it ever going to give me the ability to process these medications like some other people? No.
So we could prove the allergy issue through blood. We could prove the nutritional deficiencies through blood. We ultimately ended up proving the I don’t have a mental illness through blood and I’m being poisoned through blood. The other stuff in my particular situation and story, as far as the mental thing, it was all guesses.
It’s a real thing. It’s a huge thing and it’s like I think — not I think; I know — I told my doctor at one point when I was learning all this stuff and this test came back, we don’t get to come back. You know, we don’t get to come back. We are real people with real feelings and real family and real friends, and I remember when they canceled me from being able to make appointments at my hospital over here, I had made reference – I wrote a six-page letter to my doctor, I was just so distraught by the behavior that I was receiving and I said, you know, I may be one patient to you or one patient to my insurance company, but I am the mother to two children who I love and who need me and who I desperately want to see grow up.
This is a real issue. This is a massive issue. This is a worldwide issue. And we need to come together for the betterment of all of us, not just as individuals but as a whole society. We need to look out for each other. We need to care for each other and we need to do what’s right. There needs to be accountability for what is happening. My family didn’t deserve to go through this. I know my kids don’t deserve to see their mom having to fight this illness every day. I know the limitations that are now placed on me where to attempt to even be able to go in and enjoy a family vacation with my children and the challenges of that. It really, again, just comes down to we are real people. Real injuries are happening and real damage is being done not just to the people that are taking these but to all the people around them. And it needs to be addressed. It needs to be dealt with.
[Andy Miles] Kerri says that her hope is that by sharing her story “we can come to a new responsibility about how we seek and receive diagnoses. The medical profession,” she says, “has a mission statement of seeking to do no harm. This is not always the case,” she writes. “From my experience, a measured suspicion is the best approach. I now take the responsibility of doing my own medical research. I trust my instincts and I am my own advocate. My local provider actually became the first hospital in the country to study the P-450 genetic test. I strongly recommend this assessment be the starting point. Don’t utilize the P-450 as a last resort.”
If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.
[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos, as well as we have an educational PDF that you can print off. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts. And this is the way we spread our message. And I hope that people will really look at the signs and symptoms of akathisia. They’re listed in the videos, listed on the website."
That's MISSD founder Wendy Dolin.
You've been listening to the “Akathisia Stories” podcast. We'll have another episode next month.
If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast and subscribe.
I'm Andy Miles and I'd like to thank Kerri Lynn for her time and candor, and I'd like to thank you for listening.