A Lifetime with autoimmune basal ganglia encephalitis
At age 7, my nightmare started. I told my mother that I didn’t want to be in my body anymore. The anxiety was so severe. Little did we know, but my brain was under attack by my immune system, creating a firestorm in the brain.
Sadly, it took 28 years to diagnose. Autoimmune basal ganglia encephalitis is a rare neurological autoimmune disease that attacks the basal ganglia, a part of the brain that controls movement, sleep, learning, and emotions, creating inflammation in the brain, turning the mind into a worst enemy.
My first symptoms were severe anxiety, hyperactivity, intrusive thought, and repetitive behaviours; the severe anxiety triggered the fear part of the brain, the amygdala. Ounces started. It never really stopped or ever went down to the baseline again. I could compare it with if somebody with severe arachnophobia (spider phobia) was let into a rum full of spiders. That’s the feeling of OCD, a pure terror.
If you have never suffered from intrusive thoughts, it can be really hard to understand the amount of suffering it can cause. It was like a demon terrorizing my brain, and it behaved like tinnitus that never stopped. When flaring up, every thought in my head was so upsetting that it felt like I was being tortured.
When I finally got diagnosed, the doctor could not believe I could even function; he had never seen anyone with such high markers indicating autoimmune basal ganglia encephalitis. That explained the unbearable anxiety and madness I suffered from.
Misdiagnosed for so long because it’s such a rare disease most doctors have never heard of, at least in the 80s and 90s. Autoimmune diseases are often hard to diagnose because they present with symptoms that mimic other illnesses.
Autoimmune basal ganglia encephalitis is a severe disease that requires immediate treatment. This disease is often misdiagnosed as a mental health illness. For example, OCD, ADHD, psychosis, symptoms of paranoia, and delusions can also be present.
I hope to spread light on this little-known autoimmune disease by sharing my story, hoping that other sufferers will be diagnosed sooner.
I got diagnosed with severe OCD and ADHD, but those were my symptoms, not my disease. When I was 32 years old, I was finally diagnosed with autoimmune basal ganglia encephalitis.
Sufferers have a good chance of recovery with early diagnosis and aggressive treatment. Treatment typically involves high doses of steroids and IVIG to calm the immune system and other medications to manage symptoms.
With me, the doctors consider using chemotherapy to reset the immune system. When the anxiety is so severe that you want to jump out of your skin, chemotherapy sounds like a good option.
But after years of different antibiotics, more than 30 sessions of aggressive IVIG, and cognitive behaviour therapy, I’m in remission.
Please stick to the end where you can read a story from an OCD sufferer explaining what he calls madness but can´t stop anyway.
What is OCD?
OCD, or obsessive-compulsive disorder, is a mental health condition that affects millions of people around the world. OCD is characterized by persistent and intrusive thoughts (obsessions) that lead to repetitive and compulsive behaviors (compulsions) in an attempt to ease the anxiety caused by the obsessions.
What cause OCD
There is no single cause for OCD. Rather, it is thought to result from a combination of genetic and environmental factors.
Some people with OCD may have a family history of the disorder, which suggests that there may be a genetic component. In addition, certain brain structures and chemicals have been linked to OCD, which suggests that there may be a biological component.
Autoimmune reaction to an infection or illness can also contribute to OCD. This is because when the body’s immune system is activated, it attacks healthy cells in addition to foreign cells. This leads to inflammation, which has been linked to OCD behaviors.
Finally, certain life experiences, such as trauma, can trigger OCD symptoms. This suggests that there may be an environmental component to the disorder.
During all these years, I have experienced many different OCD themes like false memories OCD, magical thinking OCD and repetitively checking things a certain amount of time in a specific way before being satisfied. Its a feeling many OCD sufferers talk about. The just-right feeling, you can read about it here: “Just Right” OCD.
Depending on the severity of the encephalitis, some common symptoms include loss of memory. Because of my terrible memory, OCD liked to play tricks by removing or adding things in my memory, which I found very anxiety-provoking.
I was terrified of this because I knew it was like a snowball effect when OCD was at its peak; it came unstoppable. I knew that what OCD said was not true and madness, but the anxiety communicated otherwise.
The severe anxiety made the brain believe there was a real danger turning an situation or idea into something terrible, making me think something was true even if not. You can say that I was brainwashing myself.
Brainwashing is when somebody controls another person’s thoughts and ideas by making them repeat something over and over again. This could be done with phrases, words, or actions. The aim is to break down the victim’s personality and make them think what the abuser wants them to think. In my case, it was the OCD that was my abuser.
For example, when I was younger, my OCD would tell me that if I didn’t do a certain action, something bad would happen to my family. So, I created a compulsion to “protect” them. OCD would also give me false memories of things that never happened. It would say things like, “Remember when you did this? You’re such a terrible person.”
False memory is not so uncommon for people to experience, but when having OCD, it can get stuck on things you find sensitive. The more sensitive it’s for you, the more intrusive thoughts your brain will feed you. For example, a mother with her newborn child might have intrusive thoughts about harming the child. Such thoughts are so anxiety-provoking that they can make you believe you’ve done something when you haven’t.
To relieve my anxiety, I did reassurance behaviours or repeating words in my head, thinking a neutralising thought to counter the obsessive thinking and avoiding places and situations that could trigger my intrusive thoughts. 80% of my compulsion was in my head, so it was hard to detect by people around me.
During the worst years of my life, I could not work or study. I was too ill, and my symptoms were very severe. It felt like my brain was in overdrive all the time, and I could not shut it off.
OCD can also make you believe in magical things. Magical thinking is common among people. When you think that if you do something a certain way or say something a certain way, it will affect the world around you.
For example, if you wish hard for something, thinking that it’s more likely to come true if you do. When magical thinking becomes problematic, people start to believe that their thoughts can influence reality more directly.
Intrusive thoughts can be about anything that the person is sensitive to. They are called intrusive because they come without warning and feel like they are real and not under your control. Many people with OCD have themes of intrusive thoughts, such as:
-Fear of harming yourself or others
-Fear of contamination or dirt
-Fear of losing control
-Fear of sexually harming someone
-Fear of being gay or straight
-Fear of doing something immoral
Studies have shown that up to 99% of the population experience intrusive thoughts at some point in their lives. Ordinary people can sort these thoughts as spam with no meaning or relevance, but people with OCD can’t correctly process these intrusive thoughts because of a missing anti-spam filter.
Experts estimate that the mind thinks between 60,000 – and 80,000 thoughts a day. That’s an average of 2500 – 3,300 thoughts per hour. Think of it like this, you receive 80.000 emails every day, and you can’t delete them or stop them from coming.
For OCD sufferers, many of these emails are spam smart enough to break the anti-spam filter; when these spam emails reach the OCD mind, anxiety is triggered, which leads to even more spam coming into the wrong mailbox. The severity of the illness dispenses on how many spam emails the faulty spam filter is letting through.
This leads to doubt and confusion; I understand why the early scholars called OCD the doubting disease. The higher the anxiety is, the more doubt the brain produces. People with OCD can’t let go of these thoughts; they get fixated on them and start to believe that they will act or will do or have done something terribly wrong. It always sticks to something you care about or is totally against your values and morals.
For me, the OCD came in episodes with very severe spikes. It would start with an intrusive thought and end up with the idea that I had done something wrong. Even if I knew it was not true, I could not dismiss this thought due to the severe anxiety I experienced.
The spikes could last months, even years, and this was just because of an intrusive idea that got stuck in my mind. To survive I developed both mental and physical rituals. I didn’t know that I only reinforced my behaviour, which became even more imprinted in the brain.
I now understand that my spikes in OCD were probably due to my being in contact with some infection that triggered my immune system to attack the brain leading the brain to produce 250.000 thoughts a day. And the majority of this thought was spam thought, overheating the faulty anti-spam filter.
At its peak, I can compare it with Jason Statham in the movie Crank, poisoned and must keep his adrenaline constantly flowing to keep himself alive.
In my case, compulsions were my adrenaline; the behaviours I used to fight off the intrusive thoughts, but it only made my OCD worse because I was so terrify that intrusive ideas got stuck in my brain. Once attached, it was too late.
My OCD mind worked like a blockchain ladder once the transaction was made the idea was stuck there forever, even if I tried to delete it, the transaction was already registered. The chain reaction had started, and my anxiety went through the roof. That was my experience from the age of 7, and it fueled the fear even more.
This episode always led to a total crash, resulting in severe depression. Depression was probably my brain’s way of protecting it from totally overheating.
I developed a strategy the same way an adrenaline junkie does. Early on I notest that when real fear and adrenaline were running through my veins the intrusive thought stopped. So I started doing things that scared me.
The combination of adrenaline junkie and OCD made for a cocktail of disaster. I would do things that would put myself in danger, not because I wanted to but because I knew it would give me the high I needed to push away the OCD thoughts.
I preferred real fear to the fear that my mind created. It was more manageable, it had rules and boundaries. I knew when it would start and when it would end. The fear that my mind created had no end.
I worked for many years with security and at nightclub security where violent fights were part of everyday life and threats from serious criminals were commonplace. This made me feel alive, it was my drug of choice and I became addicted to the fear.
I was always on high alert, hoping for something to happen. While this may seem like a crazy way to live, it worked for me. It numbed the fear that my mind created and gave me a sense of control.
Luckily I had a brake pad, it was my dog Shila my best friend. I had constant intrusive obsessions that someone would hurt her or that I would somehow disappear from her short life. This kept me from totally derailing.
Intrusive thoughts are not voluntary, and people with OCD can’t control them because of the extreme fear of a specific thing. That’s why it’s so important to seek treatment.
It took 28 years to understand that my fears were never real, and it was just my brain creating false messages; better late than never 🙂 I am grateful to be alive today and have finally found a treatment that is helping me recover. I’m sharing my story because I want people to know that they are not alone and if I can get my OCD and anxiety under control after having it for 30+ years. You can too!
When writing this blog post, I release how trapt I have been in my mind. Life was only about surviving the next episode I knew was coming. It’s weird how thoughts can destroy so much and create such madness. But It is estimated that 2 to 3% suffer from Obsessive-Compulsive Disorder (OCD), making it one of the most common mental disorders.
I also want to add a disclaimer that this is just my story and my experience with OCD, and everyone’s experience is different. If you are struggling with OCD or know someone who is, please seek professional help.
If you don’t suffer from OCD or anxiety, it can be hard to understand why intrusive thoughts can produce such madness, but the thoughts are not the problem. It’s the reaction to them that causes the problem. The compulsions will only reinforce the anxiety by making the brain believe that this is something dangerous and real.
How OCD symptoms can manifest
It can be hard for family and friends to understand what OCD is and how bad it can affect the one suffering. To better understand OCD, I will add a short story from a fellow OCD sufferer.
OCD sufferer – Will
I was hunting ducks on a cold, beautiful January day. I was in a small boat in the middle of the lake. I remember feeling so happy as I sat there in the boat, enjoying the peacefulness of nature.
A couple of days later, I was watching the news when I heard that a plane had crashed somewhere in the area where I was duck hunting. My first thought was, “what if I shoot down that plane?” It’s, of course, an absurd thought if you think about it, and I knew it was not realistic, but the idea gave me severe anxiety.
I could not stop thinking about it. I now understand because of my general anxiety problem and OCD, my brain started to link and feel the anxiety must mean that there is a real danger. I needed to do something to get rid of this feeling, or I would go insane.
I started to research why the plane had crashed, that’s when OCD strikes.
“I told you it was you!” that thought gave me a panic attack, and the OCD circus started. For ten years, I obsessively researched why the plane crashed. I knew it was not logical, but my anxiety didn’t let me stop until I was 100% sure. If I was not 100% sure, there was always a chance that I was responsible.
I talked to the police, aeroplane mechanics, and specialists in-plane crashes. It was a total nightmare. They all said it was an engage failure causing the plane to crash. But this answer did´t not satisfied me just for 15 min after that I needed more reassurance to find peace.
I understood that something was not right with me, and I decided to get help. It was the best decision I ever made in my life. I was diagnosed with OCD and started therapy and medication. After a lot of struggle, I am now recovered and living a happy life.
Helpful resources on autoimmune encephalitis
The book and film Brain on fire: My month of madness by Susannah Cahalan.
She was almost lost and looked up in a mental institution because the doctors thought she was psychotic. But thanks to her parents, who never gave up on her, she finally received a correct diagnosis and treatment in time and made a full recovery.
Brain Inflamed: by Kenneth Bock, M.D.
Dr. Kenneth Bock shares a new view on mental health, suggesting that many common mental disorders may share the same underlying mechanism: systemic inflammation. He details how imbalances in the immune system and microbiome can generate neurological inflammation.
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Hello, I am Jonas Eriksson. I suffered from severe OCD for many years and have now recovered. My OCD is related to an autoimmune disorder called Autoimmune basal ganglia disorder. Sadly I was undiagnosed for 27 years. The inflammation put my brain to be in a state of constant terror. By sharing helpful information, I hope someone will get motivated to seek treatment and learn more about OCD and related disorders.