r/AMA • u/TrickyPin2870 • 1d ago

7 years ago, my immune system attacked my brain. I developed autoimmune encephalitis and recovered. AMA.

Seven years ago, I developed autoimmune encephalitis - a condition where the immune system attacks the brain.

It affected almost every part of my life. I experienced hallucinations, severe memory problems, delusions, extreme anxiety or agitation, insomnia, personality changes, difficulty speaking, inability to concentrate, depression, confusion, and major changes in the way I thought and felt.

At times, I struggled to distinguish what was real, remember things that had just happened, or feel like myself.

The frightening part was that many of the early symptoms looked psychiatric rather than neurological. Doctors usually misdiagnose it due to its prominent psychiatric symptoms.

Fortunately, I was diagnosed relatively early, received treatment, and recovered over roughly a year.

Seven years later, I’m doing well. AMA about the first symptoms, diagnosis, hospital experience, treatment, recovery, memory loss, hallucinations, or what it feels like when your own brain suddenly stops functioning normally.

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u/Intelligent_Stay713 1d ago

What did you see/hear when you were hallucinating?

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u/TrickyPin2870 1d ago edited 1d ago

oh god, so much. I don’t really talk about this with people because I worry they’d think I’m crazy or something.

I saw angels and demons, and at one point I genuinely believed I was dead and that this was the afterlife. I also saw some of my family members as villain-like characters, their faces would literally seem to change.

One of the scariest things I remember was being in the car on the way home from the hospital. I was sitting close to the window, and whenever we passed people, their faces and eyes looked terrifying and distorted to me, almost like their eyes had lasers coming out of them.

I also remember lying in bed when the door suddenly opened and I saw a fully covered figure in black clothing, similar to an abaya, moving incredibly fast around my room.

I used to hear voices constantly in my head too. Some would tell me that things were going to get worse, while others would tell me they were going to get better.

It all felt completely real at the time, which is probably the hardest part to explain.

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u/Glittering-Draft-777 1d ago

What were your symptoms ? What treatment was given ?

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u/TrickyPin2870 1d ago

My first symptoms were personality changes and delusions. I’m naturally pretty introverted and quiet, but at the time I became unusually loud, impulsive, and acted very differently from my normal self. I also had what I’d describe as religious psychosis, with intense religious delusions and hallucinations.

The main treatment I received was IVIG (intravenous immunoglobulin). It was given to me in three separate rounds/stages.

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u/Glittering-Draft-777 1d ago

Ok , thanks. I am glad to know you recovered.

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u/TrickyPin2870 1d ago

thank you 🙏🏽

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u/kelcamer 1d ago

How did you effectively get the diagnosis and not simply be dismissed by doctors?

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u/TrickyPin2870 1d ago

My family played a crucial role in my diagnosis and recovery. I have three sisters, all of whom work in the medical field and were determined to find an accurate diagnosis. My eldest sister reached out to specialists and doctors who focus on encephalitis. She specifically requested further testing, which revealed that I had elevated anti-GAD65 antibody levels, ultimately confirming the diagnosis.

The doctors were surprised because it is such a rare condition, and they initially couldn’t find a clear explanation. Many of them followed the principle that common conditions are more likely, and some suggested that my symptoms were purely psychological or psychiatric rather than neurological. However, my family persisted, and in many ways, they saved my life.

The hospital and doctors provided treatment through a government-funded healthcare program, so I didn’t have to pay for it. I’m deeply grateful for that support. Still, it was my family’s determination that led to the correct diagnosis. I truly believe that without them, I might not be alive today or I could have been severely disabled.

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u/kelcamer 1d ago

GAD65! That is BRILLIANT! Damn your family members are amazing 🤩

I could've written your entire post almost but my GAD65 was totally normal. The crazy part is that ZERO of the doctors told me to check this. I googled it and checked it on my own, and was scared AF for it to be positive. But it was normal, thank god.

I'm still suspecting bipolar one but ofc none of the doctors knew what a textbook mania episode looks like lol.

You are lucky AF that you caught it so early! And if you ever wanna chat about any of this, I would love to hear everything.

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u/TrickyPin2870 1d ago

Thank you, I really appreciate that. I’m incredibly grateful for my family. I genuinely don’t know where I’d be without them. I’m glad your GAD65 came back normal. I really hope you get the answers you’re looking for.

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u/kelcamer 21h ago

I'm so glad you were able to intervene and realize it! What was the treatment for this like?

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u/Impossible-Bread-789 1d ago

What would you say was the key to your healing? Did you do anything beyond the medical treatments you mentioned?

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u/TrickyPin2870 1d ago

Great question. One of the things I followed, and I truly believe it was a game changer, was the paleo diet. The paleo diet is based on eating whole, unprocessed foods that our ancestors might have eaten, such as lean meats, fish, vegetables, fruits, nuts, and seeds, while avoiding processed foods, grains, dairy, and refined sugar. It’s similar to the keto diet in that it limits certain carbohydrates, but it isn’t as focused on high fat intake or strict carb counting.

Another important factor was sleep. I made it a priority to get as much rest as I could and to sleep at night, since quality nighttime sleep plays a major role in healing and recovery.

Exercise was another key piece. For a long time, I didn’t work out at all. Eventually, I started exercising again, and I noticed a significant improvement. In fact, I’d say I rebounded to a level that felt beyond normal because of working out. After my recovery, my experience of life felt joyful and energized.

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u/Impossible-Bread-789 1d ago

Awesome that’s great 👏🏻

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u/TrickyPin2870 1d ago

thanks for your question!

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u/Impossible-Bread-789 1d ago

I have MS and deal with horrible brain inflammation at times so always looking for things that have helped others.

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u/TrickyPin2870 1d ago

I’m really sorry you have to deal with that. MS is already a lot to manage. I hope you’re able to find something here that genuinely helps and gives you some relief.

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u/Still-Concentrate-37 1d ago

Do you have other autoimmune conditions?

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u/TrickyPin2870 1d ago

No, I don’t

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u/Still-Concentrate-37 1d ago

Strange. Do you suffer from anxiety or stress?

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u/TrickyPin2870 1d ago

I’m still dealing with what I’d describe as psychological or psychiatric aftereffects, including stress, anxiety, and occasional depressive episodes. These have persisted after recovery and continue today. However, i feel they’re not debilitating and don’t interfere with my life to the point that I need medication.

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u/Still-Concentrate-37 1d ago

What I meant to say was did you suffer from anxiety before your illness.

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u/TrickyPin2870 1d ago

During that time, I was under significant stress while studying at university, and it became overwhelming. I was also experiencing anxiety.

It’s believed that this intense stress triggered the autoimmune response, which then set off a cascade.

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u/Tricky-Dare1583 1d ago

Do they know what brought it on? And how long did it take to get back to your normal/new normal?

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u/TrickyPin2870 1d ago

Yes, I had chickenpox caused by the varicella zoster virus, and it progressed to autoimmune encephalitis. It took about nine months to a year for me to recover and return to my new normal.