I have written a story qhen everything started to try and find help, I have seen over 20 specialists from eyes,brains,ears and no results.This has been a nightmare since 1/2021
Health Conditions from the Beginning
My condition began around 2020, and by January 2021, I started experiencing head pain that has progressively worsened. Looking back, I realized that I had experienced unusual symptoms as early as ages 8-9. To better understand my condition and seek help, I’ve outlined the progression of my symptoms below.
(First Ear Problems)
When I was about 3-5 years old, I had ear pain and had tubes inserted in both ears to address the issue.
(First Brain Shocks from Smell, Heavy Head Dizziness, and Vision Loss)
Around the age of 8 or 9, I experienced my first brain shocks. I remember one specific incident when my mom dropped me off at my grandparents' house for school. As soon as I entered the house, a shock began, triggered by a smell in the house. This happened multiple times, but I had forgotten about it. My ears continued to cause problems, and my dad helped clean them while taking me to doctors. This was when I was around 13-15 years old.
(Second Brain Shock Wave from Eyes to Back of Head)
Between the ages of 21-24, I experienced a different kind of brain shock. This shock seemed to be triggered by negative thoughts. It started in my eyes and traveled to the back of my head, like an electric wave. It caused intense dizziness and vision loss. After the first occurrence, I tried to figure out why it happened and began to associate it with overthinking, which only worsened the shocks.
(First Tinnitus in 2016)
When I moved to Florida in 2016, I developed tinnitus. I woke up one Saturday morning and noticed ringing in my right ear. An ENT doctor diagnosed me with a condition, but I don’t remember what it was. Within a few weeks, the tinnitus spread to both ears.
(Second Smell Shock Occurrence)
In my 30s, I experienced the smell shock again while visiting customer houses as part of my work installing heating and cooling systems.
(Tinnitus Worsening in 2018+)
By 2018, the tinnitus had become so loud that I had difficulty hearing and sought ways to alleviate the symptoms.
(Headaches and Migraines)
In 2020, I had to start taking multiple medications to manage headaches and migraines.
(January 2021: New Head Pain)
In January 2021, I began to experience a new type of head pain, unlike any headaches or migraines I’d had before. It started while I was practicing social skills, pretending to talk to a customer. The pain persisted, only subsiding twice for about 30 minutes each time.
(Third New Shock Symptoms)
This new shock is far more painful and lasts longer than the previous ones, which typically lasted 1-3 seconds. This one occurs when waking from a nap or sleep and can last 1-2 minutes. The shock travels from my eyes to my eardrums, and I can feel and hear it for each second it happens. Even with my eyes closed, moving them triggers a shock. When my eyes are closed, it’s never fully dark.
The head pain worsens with any activity, such as walking, talking, or thinking. I’ve had to stop conversations due to dizziness and head pain so severe that I was nearly unable to walk. Even talking with my psychiatrist has sometimes triggered intense pain, particularly when thinking and talking simultaneously.
Despite seeing doctors all over, I’ve yet to find a solution. My neurologist was wonderful and tried everything to help, but by the end of 2022, my eyes became an issue. I purchased high-grade UV protection sunglasses, which helped for a while.
(Tinnitus and Visual Disturbances)
My tinnitus worsened, with multiple different sounds occurring in both ears. In my right ear, I hear 4-7 sounds, and in my left ear, 3-4, though this changes over time. My doctor eventually told me that she couldn’t help me anymore, which left me feeling very depressed. I sought therapy to help with anxiety and depression related to my condition.
(2023-2024: Eye Pain and Visual Shadows)
By the end of 2023, my eyes were in constant pain, and throughout 2024, the condition worsened. I bought special glasses to protect my eyes from TVs and white light, which helped temporarily, but the pain continues to worsen despite wearing them. The eye specialist couldn’t identify the cause, and the lights during the eye test caused me to jump out of my seat due to the pain. I also occasionally see random shadows or images, though I know they aren’t real, but some still make me jump a little.
I was diagnosed with severe depression and anxiety in either 2021 or 2022, and more recently, I was diagnosed with ADHD. Medication has helped somewhat with my energy levels and mood.
