Suicide and impulsivity

If the topic of suicide bothers you, please do not read this post.

Suicidal ideation is not only experienced by those who suffer from depression or major depressive disorder. While someone who does not struggle with any mental illness may have a passive thought during a time of stress, it can be a common recurrence for anyone who struggles with a mental illness.

Illnesses such as obsessive-compulsive disorder, bipolar disorder, and personality disorders can all cause repeated suicidal tendencies. Because these illnesses are so complex, the reasoning for the individual varies, but (from personal experience), factors could be attributed to relationships, trauma, low self-esteem, and fear of the future. Often, the more severe the illness or if left untreated, the higher the risk of a suicide attempt.

Impulsivity can cast an unfortunate shadow in this. An attempt can be completely unplanned and sudden due to reasons such as mania, a breakup, or even simply feeling overwhelmed by the illness itself. Those with mood disorders and trauma are particularly at risk for this.

This is something I’ve battled with many times (and still do with intrusive thoughts/feelings). Although it can just be a feeling or thought, it’s still important to remember that it can become an action, so making sure you are seeing a therapist and psychiatrist is vital.

Feeling lost

Many of us, both those who struggle with depression and those who do not, often feel the numbness of “not living, but just existing.” While someone who doesn’t have depression may feel this due to the everyday challenges of balancing work, a social and romantic life, personal problems, and “normal” fears of what the future holds, someone with depression might feel this way because of factors such as trauma (including PTSD), existential dread, anger, low self-esteem, and other mental struggles the individual may be going through.

For me, my depression has low and high points that sometimes change from week to week, but they have been consistent for the past few months. I’ve been experiencing this feeling of simply existing and not actually living, but I feel very lost throughout it. I don’t really know what I’m doing with my life. I went to trade school after high school, although I no longer have interest in that career. I want to go back to school; however, I don’t know if I can handle the pressure of school, work, and managing my illnesses right now. There are times when I want to feel more independent as an adult and move somewhere completely new and unfamiliar, and times when I want to revert back to my childhood and be the innocent person I once was.

Feeling lost doesn’t necessarily mean you’re depressed, and it can actually be very “normal” (in fact, I think many people, especially in their 20s, feel that way). However, when one is dealing with the heaviness of depression, feeling lost almost becomes a side effect of it. I don’t struggle with the idea of feeling lost regarding my identity (which can be common with many mental illnesses); I know who I am, what kind of person I am, and ways I want to improve. However, I do believe that the lines between illness and self-identity can blur and become very confusing when you’re experiencing emotions that do not make you feel like yourself or cause out-of-character behavior.

In an upcoming post, I’m going to talk about the “butterfly effect” of mental illness and trauma — how one feeling, symptom of an illness, or even an illness in itself can stem from a much deeper-rooted place. This was sort of a preface to that. But it is something I’m currently dealing with and wanted to post about.

The introduction I never gave

Hi (and thank you) to everyone who reads my blog. While I try to create balance in my posts by being as authentic as I can while also not crossing personal boundaries, I would like to start opening up more, as I think it could provide beneficial background context. I’ll begin with an extremely short introduction about myself and my mental health background:

My name is Talya (obviously), and I’m currently 28. I live in Michigan—it’s very cold and boring here. I love writing and have a second blog where I share short stories I’ve written. I’m also in the process of working on two longer stories. I may post them or self-publish, (though I like the idea of keeping all my writing free.) I sometimes write songs and poetry as well. I’ve been vegan since 2018, and it’s very important to me. I’m a firm believer in reincarnation, so I am vegan for spiritual, ethical, and health reasons. When I was younger, I loved sketching and drawing, something I’d like to get back into. I’m drawn to anything weird, whether it’s odd history facts or bizarre niche films. I really enjoy finding new movies and music. I particularly like indie films, as well as grunge, electronic, hard rock, and alternative music. My favorite song ever is “Pavane pour une infant défunte” by Maurice Ravel. I’m pretty introverted and usually feel out of place, but I have a few close friends whom I really love.

I started seeing a psychiatrist when I was 7 years old. I had extreme panic disorder, agoraphobia, and OCD. My middle school and high school experiences were heavily affected by depression and self-harm. I’ve been on countless medications and have attempted three forms of ketamine treatment and TMS for my major depressive disorder, all of which have failed. I no longer resonate with the diagnoses I had as a child, like panic disorder or fear of leaving my house. Now, when I don’t want to leave my house, it’s because I need a break from the world! Like anyone, my life has had waves of incredibly difficult times and better, happier periods. Unfortunately, the past few years have been very challenging, with lots of ups and downs. Right now, I feel like I’ve fallen into a deep pit of depression. Some days, the “light at the end of the tunnel” is a dull beam, while other days, I don’t see anything but darkness. However, I’m very lucky to have an amazing support team of doctors, friends, and family. I’m also in the process of trying to find solutions that will cure or at least improve my emotions. Even though I’ve faced a lot of difficulties in life, they’ve given me the insight that I have.

Physical symptoms of depression

I have major depressive disorder. While deep depressive episodes often come in waves, recently they’ve been more consistent. Although the brain is the “control center” of the body, it is, after all, just an organ and can be affected by mental disorders in the same way other organs can become sick.

While the emotional aspect “causes” the physical symptoms, it still affects the body. This looks different for everyone and can manifest in ways that sometimes even doctors can’t explain.

In the past couple of months, I’ve fallen into a darker place than I hoped I would be at this point in my life, and it’s one that I’m finding challenging to pull myself out of — even though I’m able to identify some of the “reasons” or triggers (though these episodes are not completely caused by that and can happen without any obvious motive).

I’ve been underweight my whole life; it’s mostly genetic. I’m also a bit taller than the average American woman at 5’5”, so losing weight is not healthy for me. However, unfortunately, I’ve been experiencing extreme loss of appetite — to the point where I can go days without eating, or not eating at all — causing me to lose 12 pounds. I touched on this in my post about self-starvation. There’s one side where it’s self-harm, and another where you’re simply too depressed to eat, and the body and mind work together to create this problem.

One thing I experience, which is very common, is fatigue. The lack of proper nutrition plays a major part in this, but even without that, feeling exhausted — both physically and mentally — is prevalent. There’s also a difficult-to-describe feeling of being drained, which can present as being emotionless, motionless, speaking softly, and avoiding social or public situations. Often, when one is drained so much physically, they can lose focus on tasks, both hobbies and chores. I find myself struggling to do low-effort hobbies, like watching movies or drawing — I’d rather just lie in bed with the lights off. For higher-effort hobbies, like writing or spending time with friends, I avoid them completely or take longer than usual to do them.

Problems with sleep are also very common. I personally can’t speak too much on this, as I’ve struggled with chronic insomnia my whole life, but I do know there are people who either sleep excessively or can’t sleep at all due to their depression. This, of course, intertwines with all the other physical symptoms, creating a domino effect.

One thing that started happening, which had never occurred before, was psychogenic pruritus, or psychogenic itch — non-dermatological itching caused by psychiatric disorders. For me, it was so severe that my legs were covered with an array of bruises, ranging from pink to black, some even in the shape of fingerprints. The itching has been so distressing that it disturbs my sleep. I now have to use a topical steroid for the time being, as oral antihistamines do not work.

This is just a brief example of some ways major depressive disorder affects my body. While a lot of this is common, it can look different for everyone. Things are hard right now, but life comes in waves and seasons. I am thankful for the support from my doctors, family, and friends, and I know I have the strength somewhere inside me to make it through.

Starvation: the form of self-harm no one talks about

Typically when we think of self-harm, or intended self-mutilation, we think of cutting. This could be due to it leaving the most obvious types of scarring in most cases, being widely depicted in media, or the false narrative surrounding women and self-harm. What we know from doctors is that self-harm (in general, but particularly cutting), is not “fake”, as it seen in animals in distress, and there is evidence of such behavior since the times of the Mayans. However, there is still a strong stigma surrounding it – and there is also little to no acknowledgement of forms other than cutting.

​Self-starvation is not to be confused with other forms of self-destructive behavior or mental illness such as anorexia. Some “short-term” types of self-harm are self-destructive actions without addiction, such as: partying, heavily drinking, experimenting with drugs, reckless sex, impulsive acts, being a “daredevil,” and irresponsible spending. Although this is still self-harm, it is unintentional and often does not last long periods of time. It is often seen in teenagers, those in distress, or people with unresolved trauma and PTSD.

There is self-harm through addiction, and not just via recreational drugs, alcohol, or other neurotoxins. It is often also unintentional and related to PTSD, trauma (especially from childhood), and self-esteem issues, resulting in addictions such as: shopping, plastic surgery, exercise, non-surgical cosmetic procedures, relationship “jumping”, sex, intentionally hurting a romantic /sexual partner, tanning, and even being a “workaholic.” Even in mild cases, it can commonly be undiagnosed (or simply unrecognized) self-harm and self-abuse. The only way to stop it is professional help from a therapist, psychiatrist, or even a life coach.  

​It’s imperative to remember that self-starvation is an eating disorder, but is not anorexia or bulimia, due it having little or no connection to one’s appearance. Instead, it is a type of punishment or even hatred to one’s body, although there may also be other reasons – this heavily depends on the individual and his or her illness. There are also other eating disorders not related to looks, like depression so severe that people don’t eat because of it and involuntarily lose weight, but this too should not be confused with self-starvation. 

​Unfortunately, there isn’t too much data or conversation about self-harm in the form of starvation. Self-harm has been an ill-fated, yet significant part of my life. My experience with self-starvation started last year at a particularly challenging time when I was also dealing with other forms of self-destructive behavior. In my mindset, I hated the choices I was making and how I was being treated – thus, I wanted to cause my body harm. Because I was so severely depressed, it is a bit blurry to differentiate the times it was “I am too depressed to eat” and those when it was “I want to cause my body pain.” I believe this is probably common with most who suffer from this. 

​In plenty of cases, self-harm, especially when it is direct harm to one’s body, stays with you forever and does not completely “go away.” The addictive aspect becomes a coping technique; when something triggers it, it will frequently become a first resort solution. Even with years of therapy, this can still happen. I’m very proud of myself for getting out of the place I was in last year when I was inflicting the most pain to my body, but I am also self-aware and conscious that stressful or depressive episodes can prompt this response. I believe this awareness is important for anyone who deals with self-harm or self-destructive tendencies. 

​Any kind of psychiatric help is crucial to receive if you or someone you know is affected by this – just make sure that the health professional you see has a skilled background in treating those with addiction and self-harm. I hope that in the future we see more people talking about this, as it is not just harmful to one’s body but also detrimental to his or her mental health.

My Paxil experience

I started taking Paxil in 2015. After being sick for months from taking medications I had a tolerance to, I was reluctant to try it. Because of how sick I had been, I was doing even worse mentally than I had in the past few years. The bottle of pills sat on my desk until one late night I forced myself to swallow one – if only I had known then what I know now.

The first couple of days on Paxil were brutal: hot and cold flashes, feeling exhausted, sore, stomach aches, loss of appetite. I ate almost nothing for days, and only when I felt myself becoming faint, I forced something down. But the side effects went away, and I started to feel better.

At first, Paxil seemed to help me, but that slowly changed to just keeping things stable, with no major improvements. I was always told medication doesn’t “fix” things, and that most of coping with mental illness came down to changes in behavior. I stayed on the drug for a while but soon was interested in switching to something else. The doctor I was seeing misinformed me that I had no other options but to either stay on Paxil or return to a medication I had previously taken. Due previous bad reactions I’d had when going back on old medications, I made the choice to continue with Paxil.

For the initial two years I was on Paxil, I thought becoming sick from missing a dose was something that happened only to me. If I accidentally fell asleep without taking it, I would wake up feeling extremely ill. I would just lie in bed, sweating one minute, freezing the next. The buzzing in my ears from tinnitus would be so loud I couldn’t think straight. I couldn’t walk around without feeling like I would pass out. Just turning my head would cause severe motion sickness. Looking at a screen would tie my stomach in knots. The only thing that would stop my symptoms was taking my next dose.

But it wasn’t actually the physical issues that caused me to quit Paxil. It just wasn’t doing enough for me mentally. I was recommended to take the controversial DNA medication test, designed to show what psychiatric medications would work best for me. As I’ve been on a long list of prescriptions and had my fair share of trial and error, I decided to take a chance with it… and Paxil was on the list of drugs the test said I shouldn’t take.

I started taking a new antidepressant along with Paxil. Then, my doctor (the same unqualified one), told me I could simply stop taking the Paxil. I was at 40mg, which is considered an elevated dose – my highest dose was the potentially harmful 80mg. In the past, I had weaned off medications to 10 or 5mg doses before quitting, but I wanted to be off Paxil immediately, so I did exactly what he said, knowing no better.

I stopped taking Paxil on June 19, 2020, and soon learned that quitting that medication cold turkey is like having a physical illness. It was similar to what I had felt when I first began the drug, but a million times worse. The mornings were not as bad as the afternoon and evening, when my withdrawals would become the most intense, since my body had been used to me taking it at night. Some withdrawal symptoms that people experience, myself included, are: dizziness, loss of appetite, vomiting, headaches, chills, hot and cold flashes, sweating, sensitivity to heat and cold, shaking, confusion, slurring words/difficulty speaking, nightmares, restlessness, trouble sleeping, nausea, kinetosis (motion sickness), rise in anxiety & depression, tremors, flulike symptoms, chest pains, heart palpitations, digestive issues, tinnitus, and brain zaps – a feeling of electrical shocks in your head.

I attempted to journal every day about my withdrawals, with hopes to post about it when I recovered. Unfortunately, that failed because I was unable to focus and type, and looking at my phone screen made me feel even worse; however, here are some logs from the first couple days:

June 22: I wasn’t able to log Sunday and Monday because of how sick I was, so these are being written on the 23rd. Monday was the worst. The withdrawal symptoms seemed to spike for about 20-45 minutes every hour, then I just felt lousy for the remainder of the time. Appetite came and went; I was able to eat but drinking was challenging – every liquid seemed disgusting. It takes me hours to convince myself to eat something, and I have to think about it to get myself ready. Evenings are worse than the daytime. Monday night I truly was at the end of my rope. Chills all evening. The heat flashes were becoming increasingly difficult – even after taking a cold shower and lying in front of my two fans, I still felt like I was in 90 degree weather. The motion sickness feelings and flulike symptoms with it were overwhelming. Brain zaps were present but not as severe as my other symptoms.

June 23: Morning was fine, so was early afternoon. Around 5:45, I started feeling very sick. Took time to just lie around which helped. My tiny portable fan has been a lifesaver. Headaches and brain zaps are HORRIBLE. Dizziness and motion sickness isn’t as bad as yesterday but still were prevalent during the evening hours.

June 24: Didn’t start getting sick until around 6 today, better than before. Same symptoms, motion sickness, brain zaps, headaches and being lightheaded. EXTREME irritability, getting angry at the slightest things. Been slightly hot and very queasy.

I was off the 40mg for six weeks completely, and it was only toward the end that I couldn’t handle it anymore. One night I had chest pains and severe heart palpitations. I already have an irregular heartbeat and palpitations, but these just seemed like they would never stop. I was ready to go to the emergency room, but I was reluctant as I knew all they would do was stick an IV in my arm and call my doctor in the morning. I was able to get in emergency contact with my psychiatrist and was shocked by our conversation. “Are you sure you don’t have COVID?” he asked, annoyed. COVID? Are you kidding me? I thought. My symptoms were clearly due to the Paxil withdrawals, and I was angry with him for even suggesting it could be COVID of all things. I reminded him I’d been having these feelings for weeks now, only starting when I had quit the Paxil, and this had happened before when I missed a dose. He unenthusiastically prescribed me 20mg of the pills, and told me to take them and finish with that dose.

During this time I did more research about Paxil and was surprised to see that what was happening was not unique to me – in fact, it was common among Paxil users. It seemed like the overwhelming majority of people who took the drug had a difficult time getting off, with some even saying the withdrawals were similar – or worse – to those of heroin and meth. I was shocked this medication was still on the market and widely prescribed. But this was only the beginning of the end of getting off.

I was curious what other people did to handle the sickness and how fast they were able to taper. I found Facebook support groups with names like “Paxil Withdrawal Support,” “Paxil Should Be Illegal,” and “The Truth About Getting Off of Paxil.” Unsatisfied with the guidance I was getting from my doctor, I decided to join all the groups I could find and explain my situation.

People were very informative, reassuring me that what I was dealing with were in fact withdrawals due to the Paxil and gave me advice for starting the process of weaning off it. The longer you’re on Paxil and the higher the dose, the more challenging it is to get off. Most people recommended a 10% drop and to only do this very slowly. I did break the rules a bit, and I also didn’t use a pill press or liquid form of the medication, which are suggested for accuracy (I do regret this).

I asked my doctor for my prescription to be ordered at 10mg, the lowest dose you can get in pill form. I started by taking the 20mg to get myself stabilized. Then, every six weeks, I would do a 10% drop. With every cut I would feel it – the “Paxil flu.” While these symptoms weren’t nearly as severe as they’d been when I quit cold turkey, they were still painful to endure. The one that seemed to get worse during this time rather than when I was completely off was difficulty talking. I would constantly starting speaking and then end up in a tangle of jumbled words. I’d say the same sentence over and over again because the words just refused to be spoken as they should. The kinetosis was one of the most consistent and frequent symptoms, so I started carrying around pressure motion sickness bands with me and would wear them for the entire day.

It took me ten months to get off Paxil after five and a half years of taking it. I finished in March of 2021 at a dose of 0.75mg. For reference, with most medications I’ve taken that needed tapering, I would stop between 15-5mg. Honestly, I tapered too fast; when I got to 5mg I started cutting my dose by 30-50%, which I strongly discourage, and I should have stopped at 0.35 mg. When I was on 1.5mg, I made the attempt to stop, only realizing how bad I was doing not only physically, but mentally as well. It was like everything I normally feel in terms of anxiety and depression were magnified by a million. I started again the next night on the 1.5mg and continued to taper.

I’m only three and a half months off of Paxil, but it feels a lot longer. Paxil withdrawals were some of the worst sickness I’ve ever felt in my entire life. The pain is indescribable, and no one, especially not psychiatric patients, should be dealing with it. I’ve never been anti-medication; I truly think there is a potential benefit for people who actually need it – but the older I get, the more I see the flaws in psychiatric drugs and how much is still unknown about them.

In a way, I don’t regret my Paxil experience, as awful as it was. It opened my eyes to the disingenuity of psychiatrists, how most of them are simply pill-pushers who don’t care about their patients. I’m more aware of the frightening number of people on antidepressants, some of whom don’t need them – lazy parents, people with normal problems who don’t want to deal with them, etcetera. The unknown of the psychiatric world is terrifying, and the medications are nothing to take casually.

So, what happens now? I’m totally off Paxil and feel no need to go back on, which is fortunate, because some people have such severe symptoms even after tapering off that they need to micro-dose for years after. Something I experienced, which my fellow group members described as “windows,” are times where you have feelings of Paxil withdrawals months or even years later. I first noticed this when I started having “air hunger,” a name given to the feeling of the air being too “thick” to inhale, and like you can’t get a deep breath. I thought this was my nose deviating (again) or due to my allergies, but after seeing my plastic surgeon as well as my ear nose and throat doctor and taking allergy pills, I realized it was this. I’m still dealing with the loss of appetite and word jumble too, but I expect this to get better as time goes by.

I wish I had some solid advice for anyone getting off Paxil or interested in doing so. It’s one of the scariest things I’ve been through, and not having the support of a doctor made it even worse. The only thing I suggest is to let yourself rest and not be too hard on yourself. There were times I would just lie down shaking, because I couldn’t get up. I consumed nothing but steamed broccoli and blue Gatorade for two days straight because they were the only things I could stomach. Be easy on yourself, and fight through the pain.

Fighting for a diagnosis: my mystery illness

I was 10 when it started. Running laps in my middle school sports field with everyone else. I pushed myself to keep going, even though my body was begging for a rest. I continued to force my legs to run, my lungs to gasp for air, to speed up with everyone else – when suddenly, something happened. Nothing felt real. All around me, the voices of everyone, the dim sky, the cool air: it all felt like a dream. I felt as though I had left my body and was watching it through a screen. My brain said “go,” but my limbs would not coincide – someone else was making me talk, making the simple words I needed to say challenging to speak, forcing my numb limbs to make movements for me. What is happening to me? I thought to myself. 

Everything was happening so fast yet so slow at the same time. I realized something was very wrong and needed help, and I reached the closest adult to me, who brought me inside. I knew where I was, who I was, and any other question you could ask me, but I was still out of touch with reality. Tears streaming down my face, I called and pleaded with my parents to bring me home – but to them it sounded like a panic attack. Being known at school as the kid with an anxiety disorder, no one took me seriously; I was out of luck. I didn’t realize it then, but that one day would change my whole life.

My episodes only happened twice that year, but I still attempted to explain to the doctors, psychiatrists and therapists in my life at that time. I’m not sure if it was unwillingness to believe me, laziness, or that they simply did not know. I was constantly told they were panic attacks or anxiety, but I knew that wasn’t true. I had experienced those for most of my life, and even my ten-year-old self could feel a difference. 

The episodes would happen sporadically for the next six years. I could go months without having one, then have two in one week. There were no triggers and nothing that stopped it. I had the same symptoms each time; walking, eating, and talking were especially difficult. I always preferred to be home, as it would sometimes last hours upon hours. I became incredibly frustrated and saddened. No one would listen to me. I couldn’t live like this. It seemed like my body and brain were giving up. Feeling hopeless, I went to my last resort and did something you should never do – I looked up my symptoms. 

Note: I am incredibly against self-diagnosis, and strongly discourage it. I want to make it clear I was not giving myself a formal diagnosis. 

Looking up “it feels like I am dreaming while I am awake,” I came across a forum where someone seemed to have a similar problem. They explained having episodes that felt out of body, like they were watching outside. A reply said, “you are having dissociation.” I went back to Google, as I had no idea what this meant. 

Dissociative disorders (DD) are conditions that involve disruptions or breakdowns of memory, awareness, identity, or perception. People with dissociative disorders use dissociation as a defense mechanism, pathologically and involuntarily. The individual suffers these dissociations to protect themselves. Some dissociative disorders are triggered by psychological trauma, but depersonalization-derealization disorder may be preceded only by stress, psychoactive substances, or no identifiable trigger at all – Wikipedia

At the next appointment I had with my therapist, I explained the episodes again. I told her how I was so desperate to find answers, I looked up my symptoms. Disappointed (she had the right to be), she told me she wasn’t convinced I had a dissociation disorder. Not everything I was experiencing lined up with the disorder. I also do not have PTSD, had no loss of memory after the episodes, and was very aware when I was actually experiencing them. I could look at you and tell you everything I was feeling, during as well as after. Following my visit with her, I agreed it wasn’t an exact fit for dissociation disorder; however, I now felt even more puzzled and lost than before. 

One year later, when I was 17, I was seeing a new therapist. I brought up my worries about the recurring dissociation (note: while I was not diagnosed with dissociation disorder, in the episodes I was having, I was still feeling like I was dissociating – having an “out of body” feeling), she seemed very concerned and speculated that they were actually seizures. She advised me to see a neurologist, so I did just that. 

The neurologist I saw acknowledged the unusual position I was in. I had no brain trauma, no PTSD, and no history of any neurological problems. He performed an MRI of my brain, as well as an in-office EEG. I felt incredibly hopeful. Finally, someone was taking me seriously – maybe he could actually give me clarification. As strange as it sounds, I was eager for something to show up on my tests. I needed something so I would no longer have to wonder.

My results showed nothing. I was back at square one. At this point, I was furious. Thoughts constantly raced through my head about how this could have been avoided if someone had just believed me, listened to what I was saying. My ten-year-old self should have been taken to the emergency room instead of pushing through that fateful day. However, my anger turned into fear, that something was seriously wrong, things would get worse, and I would never get better. 

As time went on, I learned to accommodate dissociation in my life. I wished I didn’t have to give it so much control, but I had no choice. The worst aspect was not being able to drive, as my neurologist recommended avoiding it. When I was 17, it didn’t matter much, but being an adult and unable to drive brought my self esteem down and made my depression worse. I was no longer in charge of my life. 

At 20, my dissociation episodes changed. They were no longer complete separation from my body, and the feeling of watching myself through a dream was not fully there. Instead, it felt like my body was awake, but my brain was asleep. I was still not completely in touch with reality. I was unstable and felt like when I walked, I couldn’t walk in a straight line and would fall over any minute. Even worse, my surroundings were more difficult to interpret than during what I was previously feeling. I couldn’t pinpoint every single thing that was wrong or describe it how I wanted to.

A year later, I decided to go back to my neurologist to see if he could offer any new testing and perhaps find what was wrong this time. I had had both an MRI and CAT scan for rhinoplasty, so I gave him the updated scan of my brain, and to no surprise, it looked completely normal. He recommended a 24-hour EEG test. Probes are glued to your scalp, and brainwaves are recorded for the next 24 hours, looking for abnormalities. This sounded promising, as there were no triggers for my episodes and they could happen any time, so something could have been missed at my pervious in-office scan. 

I can only describe having this test with two adjectives – itchy and uncomfortable. You head is wrapped in bandages to keep the probes from falling off, and you carry around a bag with the device that records everywhere you go. Basically, you look like a science experiment. But I didn’t care; I felt like I might be closer to solving this abstruseness.

Alas, the test was inconclusive. Now, this may have been simply because a probe fell off, and it was not able to fully record, thus, it was inaccurate. So, I did the test yet again, this time everything being put on at a hospital. The next 24 hours felt like forever.

Eventually, I went back to my neurologist’s office, nervous but also excited to get the results. Of course, this test came back inconclusive. At this point, I was just annoyed. How much longer could this go on for? I asked him about other possibilities that I had theorized, such as the chance I had a mini stroke during the first incident. He explained that wasn’t the case, because I would have other health problems now. I didn’t know what to do or say, and I felt so small and tangled in such a big problem. More bad news, he let me know he was retiring and gave me a referral to a new neurologist. 

I couldn’t handle it anymore. As eye-roll worthy as it sounds, I truly felt like no one understood me. My family and friends were very supportive and sympathized with me, but I still felt alone and afraid. I didn’t even know if it was worth it at this point to go to another neurologist. I was sick of hearing doctors’ speculations and the same words tossed around. “Maybe it’s the medication,” “it’s complex partial seizures,” “no, maybe it’s dissociation disorder after all,” “it can’t be dissociation disorder, there is no chance,” “you absolutely don’t have complex partial seizures,” “maybe it’s just anxiety,” “it for sure is your medication, try another one.” With everything I had heard, I didn’t think seeing yet another doctor would make a difference. 

When I was 22, I began seeing a new psychiatrist. Unfortunately, I’ve seen more bad than good doctors in the psychiatric world, but this doctor was different. Compared to my previous psychiatrists, he was exceptionally insightful. I told him about my ordeal, and he seemed to actually want to help find me an answer. I made it very clear I was desperate and willing to try anything. Even if I couldn’t have an actual diagnosis, at least something to fix my problem. He asked me if I wanted to try a medication that is used both to treat seizures as well as some psychiatric illnesses. He informed me about previous patients he had with partial complex seizures (and while I do not have PCS, some of my symptoms were similar), who had success with this medication. I agreed to take the chance, even if it would not work. 

Psychiatric medication is something you have to be incredibly careful with, and just my luck, this one happened to make me very sick. I progressively became more ill as the days went on, and started to forget things that happened just hours previously the same day. My body and mind became overwhelmed, and I blacked out. I remember very little from that night, only telling my parents I felt extremely unwell and that it was probably a new side effect from my medication. Other than that, the entire night and evening isn’t even a blur – just pure darkness.

As that was two years ago, you may be wondering, what happened since? Well, nothing. I’ve continued to live my life to the best of my ability. I still can’t drive, and I go back and forth with the idea of trying to get my license, because some days I feel OK, and other days my episodes are too overwhelming. I haven’t yet come up with a solid answer of what I want to do. I plan on seeing a new neurologist, although I’m not hopeful I’ll get any new answers. Still, I have no diagnosis, and have not had any tests that show any unusual brain activity, nor have any medications helped. The overbearing feeling of loathing in self-pity hangs over like a cloud. I worry about what’s happening to me, what will happen, and have the unfortunate habit of dwelling on that one life-altering day. I tell myself it’s acceptable sometimes to feel bad for yourself and allow those feelings to occur. Then I tell myself not to give up hope and to push through it. Just like ten-year-old Talya did.