Stuck in the Middle of Neurotic and Psychotic

“To my friends and family on the outside at the time, everything seemed “normal”. I was bubbly and appeared to be in a good mood, but I became very good at hiding my emotions and I learned how to manipulate certain situations and people. For those who don’t know, one symptom of BPD is intense emotions and unstable/rapid emotional shifts that happen from moment to moment at a time. I was never taught how to cope with strong emotions, so I began cutting myself at around the age of 13. I became very good at hiding my inner turmoil from everyone. “

• The history of borderline personality disorder is quite modern compared to other disorders. Depression was first cataloged in the early 1600s (although you could claim the Greeks did it first), obsessive compulsive disorder was characterized in 1834, and schizophrenia by the end of the 1800s. Borderline personality disorder still sat uncharacterized.
  • Up till the 20th century, most psychiatrists and physicians believed mental illness to be organic in nature—they were caused by the deterioration of a part of the brain resulting in a psychological change. It was Freud who popularized psychoanalysis and the belief that mental health might be psychological in nature first. As such, patients fell into two categories: neurotic or able to be analyzed and psychotic unable to be analyzed.

• Adolph Stern, a Hungarian-American psychiatrist was enraptured by the ideas set forth by Freud. In 1915 he became a member of the American Psychoanalytic Association and by 1920 was psychoanalyzed by Freud himself. With Freud’s health deteriorating by the beginning of WW2, it was Stern and other notable psychiatrists that picked up the psychoanalysis torch.
  • Now as a bit of an aside, there is a tendency to believe that psychoanalysis was creepy, weird, and overall a pseudoscience. While Freud may have been, psychoanalysis was the gateway needed to open up psychology to a more scientific and less superstitious practice. Through Carl Jung and Erik Erikson, psychoanalysis transformed into its modern counterpart cognitive-behavioral theory which was expanded over the course of the late 20th century. I wish I could go through each detail but unfortunately I am entirely underqualified (psychologists hit me up!).
• Practicing out of New York, Stern was diligent at looking at old pathologies in the new view of psychoanalysis. When speaking to the New York Psychoanalytic Society in 1927, Stern characterized a group of patients who “fit frankly neither into the psychotic (non-analyzable) nor into the psychoneurotic group (analyzable)” and coined the term borderline.

• Impulsivity (e.g. risky behaviors, substance abuse, promiscuity)
• Suicidaility (about 70% of BPD patients attempt suicide, 10% complete it)
• Heightened affectivity (increased response to emotions like happiness, stress, sadness, etc.)
• Anger
• Brief psychotic episodes (disconnect from reality with or without delusions)
• Intolerable aloneness often culminating in fears of abandonment
• Close relationships marked by idealization or devaluation.

“Just before being diagnosed with BPD, I was hospitalized. My mother found out I was cutting myself and she forced me to show her where I had been self harming (at this point I was doing it on my thighs to be more secretive) and she immediately took me to the ER. I was admitted to the psychiatric ward and put on Zoloft [Sertraline], a few months later I was diagnosed with BPD by an outpatient psychiatrist and put on Lamictal [Lamotrigine]. I was told to “make sure I was in therapy” but he never specified the type- so I just went to a standard CBT therapist. For those who don’t know, Dialectical behavioral therapy is the “gold standard” for borderline personality disorder but the psychiatrist did not specify that. I wish I was in DBT at this time.
Moving forward, I wasn't feeling better. I was still throwing up everything I ate (which my parents didn’t know about until later on- I was very good at hiding all of it). I was taking medication, going to weekly therapy, but I just didn’t feel better. I began to smoke a lot of weed to cope, along with cutting myself, throwing up whatever I ate, binge drinking, and it just got worse. Not to mention, both of my siblings and both of my parents are addicts.”

• In 1967 Kernberg released a paper defining the boundaries between neurotic and psychotic patients and firmly defined the criteria that established borderline personality organization. He used Stern’s cluster of symptoms and behavioral traits to develop the beginnings of a diagnosis.
  • This work was expanded by Roy Grinker the following year with the release of a case series on a few BPD patients. This long term study of a few patients integrated the idea that BPD often overlaps with other conditions, not excludes them. We now identify other comorbid conditions associated with BPD like eating disorders, self-harm, and substance use disorders. In fact, the extent of comorbidity is so great, that having a patient with pure BPD is almost unheard of.

“In January of 2016 when my parents divorced (I was about 17-18 at the time), I found a primary care physician who was oblivious. She prescribed me everything I wanted- I didn’t/don’t have an abuse problem with z-drugs/benzos, but I LOVED adderall. I manipulated her into prescribing it for me. I “faked” an ADHD diagnosis. Every month I asked her to increase the dose. I ended up on the maximum dose. It may seem stupid to have an adderall prescription and use crystal meth at the same time, but I don’t care. There was just something about adderall. I don’t know how my doctor didn’t see the warning signs. I was rapidly losing more and more weight. I was skeletal at this point.
I complained about anxiety, so she put me on ativan. I genuinely knew nothing about benzos. I didn’t care. I was in a very bad place at the time. I decided to ask her to keep me on adderall 60mg per day (which was gone in days, every month felt like Christmas morning when I got it filled. When I ran out I’d use meth or just buy adderall from a girl I knew), klonopin 2mg 2x per day (did not abuse it- it just countered the anxiety and panic attacks from the speed), and lamotrigine which didn't do anything anyways.”

• In Kernberg’s paper, he famously defined BPD as a “good-mother bad-mother dichotomy first experienced in infancy” that resulted in a “split, tearing the world in two.” As a result, Kernberg viewed BPD patients as a “matter of extremes: Hero and Villain, savior and persecutor, victim and torturer. A relationship of chaos as well as cognitive, emotional, and behavioral instability.” Geez Otto, keep it light.
  • Despite providing little actual evidence in his paper, Kernberg banged on the psychoanalysis drum the loudest. His ideas were repeated constantly and would remain influential in the understanding of BPD. Since the disorder is more common in women, Kernberg pitched the idea that this was a gendered disease reviving the Victorian practice of female hysteria.

“Over the next few years, EVERYTHING got worse- not just with my own mental health, but my family life. I was hospitalized again after a really bad explosive argument with my family- I tried to impulsively down my bottle of lamotrigine and 911 was called. The hospital was useless. My eating disorder got so bad that I had a grand mal seizure in the middle of my high school class room. I began to use methamphetamines/adderall(amphetamine salts) to lose even more weight. I stopped taking my medication. My therapist moved, so I stopped seeing a therapist. My parents divorced in January of 2016 and when I thought I had already reached rock bottom, well, I found out rock bottom had a basement. I won't go into all of the details of that year, but it was a very, very, very dark year for me and my family.”

Okay we lied, mental health is actually biological in nature

“Fall of 2016. I was depressed, severely suicidal, addicted to speed, dependent on benzodiazepines, unstable, and I was literally dying from an eating disorder. I saw a therapist for a few months and she went to a seminar and she found an eating disorder program in my state that will take my insurance. That therapist/admissions persons/insurance agent who fought for me to be admitted SAVED my life. Honestly, I did not want to go to treatment. I wanted my ED and drugs to kill me. But I needed to leave the abusive environment that I was in. I had nowhere else to go, so I went to rehab 9 hours away.”

• It was Stern that first defined the criteria for borderline personality disorder but he mischaracterized it as a catchall term for those who couldn’t fit into other established disorders. To Stern, these patients sat on the border of truly sick and healthy and most patients were thought of as atypical presentations of anxiety disorders, bipolar disorder, depression, or schizophrenia. This foundation of “untreatable” would persist for decades impacting treatment of those who needed it most.

“Finding a new psychiatric practitioner was tricky. I have been turned away from others, but I kept looking on Psychology Today. I called several, and off the bat I just ask “Hi, do you guys treat borderline personality disorder?” If not, move on to the next. Some practitioners just refuse to treat personality disorders- my guess is the stigma, and people with personality disorders are (hate to say it but it's true) “difficult” to treat.”

• The medical community was turned on its head in the 1950s with the discovery of receptors that bound to common neurotransmitters in the brain. Likewise the development of antidepressants and discovery of antidepressants that target those specific neurotransmitters revolutionized the idea of mental health. Again.
  • By the beginning of the 1970s, the world was embracing the race to discover the biologic basis of the brain. The invention of CT scanning changed the game completely as doctors could see the brain working while the patient was alive and without their skull removed.

• This new perspective of BPD as biological changed the inciting factor of BPD from Freudian in nature to a more modern concept. Now seen as a result of one's upbringing or trauma (nurture) or genetics (nature), psychology was changing its view on many of the most solidified disorders. This change in thinking was pushed firmly by John Gunderson throughout the early 1970s culminating in ground breaking BPD research in 1975. It is Gunderson’s data that was integrated into the Diagnostic and Statistical Manual for Mental Disorders (DSM) in 1980 as part of the third edition. [If you are interested in learning from Gunderson, he has a great series on youtube about BPD.]
  • Since Gunderson’s paper, a number of different subsequent studies have been done to further characterize the biological nature of the “untreatable disease:”
    • Twin studies suggest that the heritability factor for BPD is 0.69—suggesting that if one twin is diagnosed with BPD, the other twin has a ~70% chance to also be diagnosed. This suggests a strong inheritable genetic factor to BPD, especially the impulsive aggression and mood dysregulation symptoms. It should be noted that the chance to develop BPD if a first order relative has BPD (father, mother, non-twin sibling) is around 23-30% while the chance to develop it without a familial history is around 10%.
    • Psychosocial factors of BPD also play a major role in the development and progression of the disease. A history of substance misuse in the family home can precipitate BPD in susceptible individuals. Likewise, childhood sources of trauma such as neglect or physical/sexual/emotional abuse can all occur in high rates among those diagnosed with BPD. Few studies however point to how the features of the environment specifically create a vulnerability to BPD. For right now we can only classify connections, not causes.

“The talk I had with my prescriber was not easy. I needed her to fill out paperwork/”recommendation” for insurance basically saying I medically need this treatment. needed to be honest with the doctor prescribing adderall. I told her: “look.. I have an eating disorder, I have been abusing the adderall this whole time. Can you please fill out the paperwork required so I can get help?”. She was not happy at all, but she did it. Looking back, I am one brave motherfucker.”

Treating the (formally) Untreatable

“While I was in rehab, the psychiatrist said something that threw me off. He said: “You don’t abuse people. You don’t manipulate people. You behave, so you don’t have borderline personality disorder. You have bipolar disorder. I'm gonna start you on seroquel (Quetiapine).”. I didn’t know what the hell seroquel was. This was my first ever antipsychotic medication, and from this point on, a series of medications were tried over the course of the next 5 years. While I was in the facility, I was diagnosed with bipolar 1 disorder with mixed features, generalized anxiety, and ADHD (a serious ADHD diagnosis? Who knew?) And obviously my eating disorder: Anorexia Nervosa purging type.”
Since then, I have tried different medications. Several antipsychotics, I experienced this lovely side effect called: akathisia. For me, akathisia was this severe sense of restlessness that I could not control. I felt like I was crawling out of my skin. I could not physically stop moving, I couldn’t stop pacing. I would walk back and forth for hours. I experienced akathisia on low doses of Geodon (Ziprasidone) and Vraylar (Cariprazine). Low dose Latuda (Lurasidone) was activating and I didn’t like how I felt on it. Rexulti (Brexipiprazole) actually helped my depressive symptoms but stopped working for a year and caused me to gain 40 pounds with no change in appetite or activity. I can go on and on, I have tried about 20+ medications to help manage my conditions. They all just didn’t work and I got really bad side effects. But don’t let my experience scare you.”

• Our first drug is Carbamazepine (Tegretol). This antiseizure medication was developed in 1968 as an improvement of Phenytoin, an hydantoin. Carbamazepine needs to be titrated up to its effective anti-seizure dose (800-1600mg) on a slow weekly schedule. This slow weekly increase of 200 mg showed a mood stabilizing effect (lower highs and higher lows) which prompted researchers to investigate its usefulness in mood disorders (like bipolar disorder). They found that lower doses of carbamazepine actually improved mood symptoms and so the extended release of the drug was marketed as a mood stabilizer in 2004.

• Oxcarbazepine (Trileptal) is the 10-keto version of carbamazepine. Unlike carbamazepine, oxcarbazepine shows significantly less auto-inducing of its own metabolism, and so a smaller dose of medication can be given. Also, oxcarbazepine levels do not need to be monitored as closely in new patients or those undergoing intense antibiotic regimens. Oxcarbazepine is used off label for bipolar disorder and BPD.
• Carbamazepine is used for its ability to improve impulsivity and can be extremely useful in younger patients who naturally show more proclivity towards risky behavior. This can be why it is also used in the treatment of substance use disorder, especially cocaine. Unfortunately it can lead to a worsening in depressive symptoms which may result in an increase in suicidal thinking in non-suicidal patients.

• Topiramate (Topamax) is among my top 5 drug structures. Any organic chemistry student will have flashbacks to furiously studying hemiacetals, acetals, and sugars. My question for them is: what kind of structure is topiramate? If you said a sulfamate-substituted monosaccharide derived from fructose then good on you! (easy amirite?) Topiramate was approved in 1996 for partial and tonic-clonic seizures. Later, it was found to be useful in a myriad of behavioral and mood disorders like augmenting alcohol dependence, binge eating disorder, bipolar disorder, bulimia nervosa, and BPD. It is also indicated for obesity and type 2 diabetes mellitus due to its side effects of loss of appetite and weight loss.
  • Due to sulfamate moiety, topiramate is excreted 80% unchanged by the kidneys. This means that most of the drug is not even processed in the liver, making it a great option for patients with heavy drug therapies or liver dysfunction. This does require good kidney function to be maintained and so older patients who may develop renal insufficiency should be closely.
  • Topiramate has demonstrated teratogenicity or that it affects fetal development. As such, females of reproductive age are advised to be on oral contraceptives to prevent unwanted pregnancy. Even though Topiramate does not undergo much liver metabolism, it does affect the liver’s processing of other drugs. Notably, it affects the Cytochrome P450 enzymes CYP2C19 and CYP3A4. Oral contraceptives are metabolized through CYP3A4 making them less effective. As such, patient taking this drug while using oral contraceptives should use a secondary form of backup (like condoms).
  • Topiramate’s usefulness comes from its effect on strong emotions like anger, sadness, and anxiety. Patients report an increase in interpersonal relationships though, which helps with integration in social settings which probably is the reported increase in quality of life.

• Next up on our list is Lamotrigine (Lamictal) is a 5-phenyl-1,2,4-triazine derivative originally indicated for adult partial seizures and adjunctly to patients with a rare form seizure disorder called Lennox-Gastaut syndrome. Uniquely, Lamotrigine requires a very slow up-titration schedule with most dose increases happening once every two weeks. This is done to avoid precipitating a life threatening immune condition called Steven-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). These adverse events are a life-threatening skin rash that can cause large portions of the skin to become ulcerated. That being said, lamotrigine is a safe medication that when used correctly can be life saver for many patients.
  • Lamotrigine combines the benefits of Topiramate and Carbamazepine. It has a benefit on strong emotions like anxiety and anger while also improving impulsivity.

“I eventually found a psychiatric nurse practitioner who specifically said they treat trauma and personality disorder, along with mood and anxiety disorders. She is now my current prescriber and she is amazing. We found a medication combination that works wonders: Lithium Carbonate and Pregabalin (Lyrica). I'm also on other as needed medications: Hydroxyzine, Clonidine: both PRN for anxiety/sleep. She is also the only doctor who is willing to do the Ashton Manual: Because I’ve had issues tapering off of Klonopin itself, we are currently cross tapering from Klonopin (clonazepam) to valium (diazepam), and will eventually taper off. Besides occasional cannabis use, I have stayed clean from everything else.”

• Lithium carbonate (Eskalith, Lithobid) is a unique drug because it is actually not a drug! Well… not in the traditional sense. Lithium is an ion, not a organic chemical like most other drugs. We think that Lithium works by reducing neuron excitability and increasing inhibitory neuronal processes, thus stabilizing brain activity. Likewise, as an ion similar to sodium, it regularly enters the cell and affects intracellular secondary messaging.

• Lithium is titrated to a certain blood level of 0.6-1.2 milliequivalents per liter (mEq/L). This range is called the therapeutic index/window or the blood concentration range needed to show the desired effect. In this case, lithium improves emotional instability and brings a person back to ‘normal’ quicker than without it. Below the range, patients see a sub-therapeutic effect—in this case the return of the BPD symptoms. Above the therapeutic range, the person would see lithium toxicity. It should be noted that a person can see “chronic toxicity” or side effects even at therapeutic levels.
• As an ion, Lithium is not metabolized by the liver at all like other drugs. Instead, it is completely handled by the kidneys. As such, ensuring kidney function is key for preventing acute lithium toxicity. As such, patients who show rapid renal decompensation could present seizures, heart attacks, delirium, coma, or death. Lithium is thus considered a narrow therapeutic index drug since the range is very small and the potential effects are so dangerous.

“Lithium has been the main game changer. My level ranges between 0.2-0.3, so it’s “sub-therapeutic” and my doctor has seen this in practice. The typical “effective” range is 0.5-0.8, but this low level has made a significant difference in my emotional lability, rage outbursts, depressive symptoms, and some of my emotional reactivity. I feel like I can actually utilize the skills I’m supposed to use. Side note: Not saying medication is a cure, but my medication regimen has made a HUGE difference compared to before taking it.”

The gold standard is NOT drug therapy

“When I was hospitalized for my 4th time, the psychiatric practitioner told me I was bipolar and that I was having a mixed episode, but I was told by a weekend doctor (during the weekends there's a different psychiatric nurse practitioner than during the week) and he went over my symptoms and told me “you don’t have bipolar disorder. You have borderline personality disorder. You really need DBT. I knew it. It always confused me because when you read literature on bipolar, episodes of mania last for several days at a time- I didn’t have that. My moods/emotions are highly changeable and can be extremely reactive, but they never last for several days in a row. I meet the full diagnostic criteria for BPD- every single symptom. While I was in treatment, my family moved across the country. So when I completed treatment, I didn’t return back to my hometown. I didn’t have the connections I did to get drugs. Anytime I would bring up misdiagnosis, they would blow me off so I felt kind of hopeless. I didn’t know how to find DBT. DBT is not readily available in my area.”

• For many the use of Cognitive Behavioral Therapy (CBT) is key for understanding how our thoughts and emotions dictate our behaviors and vice versa. CBT gives individuals the ability to recognize maladaptive thoughts and gives them tools for better thought patterns, perceptions, and behavioral goals.
• For personality disorders like BPD, cognitive behavioral therapy is not the best approach. These individuals struggle to regulate the emotion before it generates into a thought (hence the high prevalence of impulsivity). As such, these individuals benefit from a more specific kind of CBT, called Dialectical Behavior Therapy (DBT).
  • DBT relies on using mindfulness skills to help regulate emotions, tolerate distress, and improve relationships. DBT helps teach individuals how to live with discomfort and accept the way things are rather than reacting to the discomfort in unhelpful ways.

“I moved to a nearby city, and because of the clinic’s policy they don't treat people in the county I’m living in. Damn. I’m scared. I’ve tried a benzo taper before, who is willing to keep me on it? How do I find a good therapist? What should I do? I called at least 10 places. Most either didn’t get back to me, didn’t accept BPD patients for whatever reason even though it’s on their profile, OR they don't take my insurance. I left a message for one who takes my insurance. I was just done. I was ready to give up.

• The origin of DBT is incredibly interesting. In 1950, a 17 year old girl was locked in a seclusion room at the Institute of Living in Hartford, Connecticut. She was admitted for being suicidal and formally diagnosed with schizophrenia. Early treatment notes labeled her the “most disturbed patient on the ward” and was subjected to electroconvulsive therapy. One year later, Linehan left the Institute of Living and attended Loyola University, Chicago in 1968. She would graduate cum laude with a BS in psychology, an MA in 1970, and finally her PhD in 1971 after studying social and experimental personality psychology. She is diagnosed with BPD.
  • Through her work, Linehan developed two important concepts related to personality disorders. Taking inspiration from Eastern meditation and zen, she described how people must learn to accept the way the world is to achieve a meaningful and happy life as well as how change is needed for growth and happiness. She culminated these teachings in dialectical behavioral therapy and started treating BPD, eating disorders, and substance abuse disorders with DBT.

• Linehan faced immense pushback from the psychiatric community—when she debuted DBT in 1991, behaviorism was on the rise. She used her research on suicide and sociological phenomena to dismantle Kernberg and his theories that were developed with little evidence. Her DBT model showed higher rates of recovery than using traditional CBT and patients felt validated and empowered.
• Linehan was awarded the Career Achievement Award from the American Psychological Association in 2005 and The Outstanding Educator Award from the New England Educational institute in 2004.

“About a week later in November or so, I got a call back from the last person I called and left a message for. She takes my insurance, specializes in BPD, and is accepting patients. Weekly appointments, it was perfect. I am not exaggerating when I say this therapist was the most thorough therapist I have ever seen. She wanted every detail about my childhood, my symptoms, and just everything about me. It was a very intricate process. I told her about my previous bipolar diagnosis and she pulled out her handy DSM-5 (I think it’s hilarious when professionals just whip a DSM out) and went over the criteria for bipolar disorder. She ruled out bipolar because of my exact reasoning: My episodes DO NOT last for days and days and days, like a bipolar person would. She diagnosed me with everything at the beginning of this “short novel”. She is my current therapist and I am currently learning DBT.”

“Always advocate for yourself and what you believe in”

"For anyone reading going through anything similar to my story, there’s a few things I would like to share. Some things that I wish I knew back when I was 14.
First, psychiatric medication is serious business. It’s not something to be scared of IF it’s prescribed for the right reasons. ALWAYS DO YOUR RESEARCH. Do not let 1 side effect scare you, but it’s good to be educated on what you are putting in your body, what you may experience as a result (side effect), hell, now when I’m prescribed something I spend hours researching the medication. Reviews from drugs.com. Reddit experiences. But again, if you’re prescribed an antidepressant for example, and you read 1 horror story, don’t let that deter you from taking it. Don’t let MY experience with the meds I stated earlier scare you. Some have wonderful success with Geodon for example, and that’s great! It just was not for me. I will say, It’s almost never recommended to take benzodiazepines long term. Strictly as needed is okay, but even then there's better alternatives for panic attacks, like clonidine (in my opinion). [Side note: When you google something for research, pull information from websites that end in .org, .gov, .edu, or from verified organizations such as WebMD, MayoClinic, NAMI, etc.]
Second, they always say “listen to your doctor”- which is true- but if something sounds off, or even if you just want a second opinion, I recommend getting a consult from another physician just to see what they say, OR do your research on what they say. For example, when that psychiatrist in the rehab center said “You don’t abuse people. You don’t manipulate people. You behave, so you don’t have borderline personality disorder. You have bipolar disorder. I'm gonna start you on seroquel.” I should have said something. I didn’t know what I know now about BPD. ALWAYS ADVOCATE FOR YOURSELF AND WHAT YOU BELIEVE IN. Plenty of doctors refuse to diagnose personality disorders, and would rather diagnose bipolar and prescribe an expensive brand name antipsychotic so they can have some kickback from the pharmaceutical industries. I have experienced this, being on all of these expensive brand name antipsychotics and it's disgusting. If it works, great!! Bottom line: Do your research. Just because someone with an expensive piece of paper is telling you something does not mean you have to listen to it OR that it’s true.
I hope this reaches someone in time of need and helps in some way. My inbox is always open for any questions or just someone to talk to :)"