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Brain Injury and Aspartame: How the Combination Nearly Destroyed My Life

My reality, off and on, for nearly five years.

My reality, off and on, for nearly five years.

Full disclosure: I have been overweight to obese all my adult life, never ate a balanced or nutritious diet until recently, and drank an average of five cans of Diet Pepsi a day for 30 years. I blame no one but myself for what happened when it finally caught up with me. My purpose in sharing my story is to help educate others on the severe neurological risks that come with heavy consumption of foods and beverages containing aspartame, an artificial sweetener.

Not everyone agrees that aspartame is dangerous. The United States Food and Drug Administration (FDA) claims that aspartame is safe except for people with a disease known as phenylketonuria. However, aspartame went through a long and controversial FDA approval process before finally becoming a legal food additive in the United States in 1983. I have linked the FDA website along with the website Sweet Poison to highlight the vast differences in reporting about this artificial sweetener. Reading them side-by-side was an eye-opening experience for me.

The marketing image we see isn't always the reality we get.

The marketing image we see isn't always the reality we get.

The First Blow: Type II Diabetes

For the first 25 years of my diet soda addiction, I didn’t think it had much effect on my brain or body. After all, it was a diet drink and contained zero calories. I loved it and felt entitled to my daily vice. I reasoned that everyone had them and I didn’t drink or smoke.

That belief didn’t change even after a diagnosis of Type II diabetes in 2013. I had heard but brushed off that long-term consumption of diet soda could contribute to diabetes. I figured my weight and hereditary likelihood of becoming diabetic were reason enough. Having received my diagnosis right at the cut-off point, I lived in denial that I even had diabetes for the next seven years. While I took medication to control blood sugar, I didn’t change my diet in any meaningful way.

The Second Blow: It Was Only Supposed to Be a Mild Concussion

My husband and I decided to take up bike riding in the spring of 2016. Unfortunately, we hadn’t gotten around to buying helmets yet and I lost my balance trying to get comfortable on my daughter’s bike. I fell off, striking the back of my head extremely hard on the pavement of our driveway. Because I was bleeding profusely, I asked my husband to take me to the emergency room to see if I needed stitches. The thought that I had just suffered a concussion never crossed my mind.

The emergency department personnel took a CT scan of my brain and didn’t notice anything unusual. I felt nauseous and immediately struggled with the bright lights but never lost consciousness. They informed me I had a mild concussion and gave me a referral to physical therapy. From my understanding, recovery from a mild concussion should take several weeks to a few months at most. After my concussion, however, I suffered increasingly debilitating neurological symptoms for almost five years.

What the Heck is Wrong with Me?

I had some typical symptoms of a mild concussion right away, including vision difficulties and headaches. By June, I had trouble walking without assistance because my balance was so bad. It was even a struggle to get out of a chair because gravity would pull me back down or I couldn’t maintain balance to stabilize my footing. I started using a cane and progressed to a walker by July 2016. Balance remained my only significant problem for the rest of that year. A neurologist I visited after four months of not being able to walk right assured me there was nothing wrong and the issue would resolve on its own.

The real problems began in February 2017. That is when I first started having involuntary movements like head and arm jerking and body shakes. This soon progressed to seizures. Alarmed, I visited a different neurologist for EEG testing. The test was normal, of course. I did not have epilepsy, but he noticed my oversensitivity to the strobe light portion of the test and referred me to the first of at least three different movement disorder specialists.

I should note that I developed extreme sensitivity to light and sound at this point as well. Sunglasses and noise-cancelling headphones became my friends, and it is only recently that we have parted ways.

Pass the Buck: No One Knew What to Do with Me

I went to the University of Minnesota for neuropsychological testing in September 2017. This was a referral from the second movement disorder specialist I saw. The diagnosis was that my physical and cognitive issues were mostly psychological and that I possibly had schizophrenia. The reason? Besides the seizures, involuntary movements, and balance problems, I also started having episodes of dementia-like confusion.

These episodes came on suddenly and lasted about an hour. I wouldn’t know what year it was, how my husband got in our house, or who my young adult children were because I thought they were still preschoolers. I thought people who had passed away, such as my mother in 2015, were still alive.

While experiencing bouts of intense confusion was distressing, it was not schizophrenia. I shudder to think of where I would be today if I had followed through on that neuropsychologist’s recommendation to start medication for such a serious brain disorder that I did not have. This experience was not the first time, nor would it be the last time, that I left a neurologist’s office in tears and feeling totally humiliated.

Emergency Room Disaster That Kept Me Away from Doctors for Over Two Years

One night in May 2018, I began to seize aggressively and continuously for almost an hour. After consulting with a family member who is a nurse, my husband made the decision to call 911. From the moment they entered our home, the ambulance crew were convinced I was faking it. I spoke with halting, slurred speech when they asked me questions, another issue that had developed over the past year whenever I had an attack like this.

I was also dizzy and confused, a fact they chose to mock while preparing to take me to the hospital. Someone asked me where I was. I struggled to speak but they kept at it until I finally slurred the answer “home.” When phoning the hospital from inside the ambulance, the EMT informed them “we have a faker, pretending she can’t talk.” As the crew wheeled me into the emergency room, one of them said “You can open your eyes now” in the same mocking manner.

The two young nurses assigned to me were no better. Since the ambulance crew informed them I was faking it, one of them wrote “pseudo-seizures” on my intake paperwork. Although I was dizzy, had difficulty keeping my eyes open, and couldn’t speak, I could hear and understand what was going on. I overhead them making fun of me, with one claiming that I only had seizing and spasmatic episodes when someone was looking at me. They assumed incorrectly that my actions were deliberate and that I was doing it for attention.

I did confront them when I recovered my speaking ability and went on to report the incident to a patient advocate and the highest levels of hospital management I could uncover. The president of the hospital system got involved and I later received a letter of apology. That was nice but not nearly enough.

The experience of having everyone involved in my care mock me while I was scared and in need of help was deeply traumatic. This led to my decision to avoid healthcare altogether until I couldn’t any longer. That meant no biannual diabetes checks or mainstream healthcare services of any kind.

Functional Neurological Treatment: A Brief Glimmer of Hope

As someone who writes and researches for a living, the fact that neither I nor any medical professional could find the cause of my neurological symptoms was intensely frustrating. To recap and to add some I may have missed, here are the symptoms I had off and on since my concussion:

  • Balance problems
  • Blurry vision
  • Brain fog
  • Dizziness
  • Episodes of extreme confusion
  • Extreme sensitivity to light and sound
  • Fatigue
  • Leg locking up, could not bend at all.
  • Memory issues
  • Muscle weakness resulting in dystonia-like symptoms.
  • Seizures
  • Severe depression
  • Spasticity of the left arm
  • Speech difficulties, including forgetting words for common things besides the slurring and halting.
  • Stroke-like symptom, including a drooping face. This one was particularly troubling since I lost my mother suddenly to stroke.
  • Tics and tremors

Having written off conventional medicine altogether, I researched and learned of a functional neurology and chiropractic center offering intensive one-week treatment. Functional neurology promotes neuroplasticity, the belief that the nervous system can recover and begin to work more efficiently. Treatments are holistic, which means these practitioners do not look to drugs or surgery to help patients recover. I linked the clinic I attended and some of the treatments I received above.

I had amazing results from my one-week session. It was also reassuring to be with a team of professionals who believed me and didn’t view me as schizophrenic or an attention-seeker. My symptoms returned about two months later, and I continued to go back for additional treatments over the next year.

Because insurance didn’t cover the cost, my husband and I accessed his 401(k) to pay for the first round. We spent tens of thousands of dollars between the treatments, appointments, and tests I had over an almost five-year period. The cost eventually became too much to manage and my symptoms only got worse.

Never once did it dawn on me that my diet soda habit and aspartame toxicity could be to blame. I never had a doctor ask me about either soda consumption or my diet except for the functional neurologists. Sadly, I wasn’t entirely honest with them.

October 2020: Five Seizures in Under Two Weeks

We moved to North Dakota in August 2020 and things went fine for a while. Then I experienced five seizures, some of them seeming more like a stroke, in a span of 11 days. During one especially bad episode, I asked my husband to take me to urgent care. It had been two and one-half years since I had stepped foot inside a hospital or clinic. Urgent care immediately referred me to the emergency department.

While this ER trip was much better than the traumatic experience in 2018, they could still find no explanation for my symptoms. I was screaming in pain from my legs twisting and locking and couldn’t speak coherently. Several hours later, after a CT scan receiving and a short-term prescription for muscle relaxers, I left the ER with a follow-up plan to see a local neurologist.

The experience with the neurologist in North Dakota was no better than the ones in Minnesota. Medical records follow people, and I had a reputation as someone with conversion disorder already. Conversion disorder, which means that a person displays emotional problems through physical symptoms, now goes by the name of functional neurological disorder. All it meant was that I had a slew of neurological problems and no explanation for them.

This neurologist was frustrated with me from the beginning and brought up seeing a psychiatrist within the first several minutes. I argued with him, as I had many before him, that my neurological problems had a legitimate physical cause due to my brain injury. Exasperated, he referred me for all the same tests that I had already such as an MRI and neuropsychological testing. I made them and cancelled them, knowing it would get me nowhere.

My Body and Brain on Aspartame, Part 1

Notice what's on the tables - a pile of prescriptions on one and two cans of Diet Pepsi on the other because I usually drank them two at a time.

This second video shows the spasticity, balance, and speech issues I suffered in the last five years of my 30-year Diet Pepsi addiction. Both videos taken in October 2020.

My Body and Brain on Aspartame, Part 2

The Third Blow: Kidney Disease

A short time later, I found myself anemic, severely nauseous, and unable to get out of bed. I also continued to struggle with balance problems, confusion, and severe dystonia-like symptoms with my arms and legs. I knew something was not right beyond my usual symptoms and that I had to relent and see a doctor. It was also going on three years since a doctor had checked my blood sugar, which ended up being at an all-time high for me.

My lab tests indicated I had early Stage 3 (of 5) kidney disease. It is not reversible but manageable through strict adherence to a balanced, low-sodium diet. I threw myself into research and discovered that kidney disease and neurological dysfunction are closely related. I also learned, through 20-year-old research I had to scour the Internet to find, that people with brain injury are indeed more sensitive to the effects of aspartame. After five long years of struggle, I finally had my answer.

Immediate Improvement in Neurological Symptoms

I had my last Diet Pepsi the day of my lab tests and haven’t had one since. Not surprisingly, I began to feel better within two days. My thinking is as clear as it’s ever been, I no longer need to wear sunglasses and earplugs everywhere I go, don’t need a cane or walker, no seizures, no confusion, no symptoms whatsoever. It is early and symptoms may appear again, but I know in my heart I will no longer abuse my body. I will be 53 years old soon – enough is enough.

I am eternally grateful to God for giving me yet another chance to get it right. My faith has grown tremendously during the last year, and I feel like I had to be in the right place spiritually to have the willingness to see that I was the problem all along. My life and recovery remind me so much of this song:

Grace on Top of Grace

In Closing

If you’re a big diet soda drinker or use a lot of artificial sweetener, I hope my story serves as a cautionary tale. It is my opinion that aspartame is poison and is only legal due to financial interests and bribery. However, don’t take my word for it. Research multiple sources for yourself, read food and drink labels closely, and quit using it for a few days. Do you feel any different?

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2021 Lisa Kroulik