I guess every medical event comes with some surprises. Something not going as expected, an undiagnosed complication, financial problems, among others. Based on what I read and my experience, TBI is one of the medical events with the greatest number of possible deviations from the ‘normal’ and diagnostic surprises throughout the recovery process.

They say that no two head traumas are the same. That each one is a specific constellation of affected functions and systems. One person’s auditory system is not affected and another’s balance is not affected. The third person’s ability to process information is not affected and the fourth has no emotional lability issues.

In my case, the first thing that was confusing was an uncertain diagnosis. At first nothing happened to me – what I felt were just side effects of the vaccine (I fainted after getting the COVID vaccine). Then, on my second visit to the ER, they told me it was vertigo and they told me to do the Epley Maneuver. I did this for several days. On the third visit to the ER, after taking the anti-anxiety medication prescribed by the doctor, and a second ambulance ride in as many weeks, I was treated for an anxiety attack and told I was fine.

I had already begun to feel confused about the diagnosis of my condition, an insecurity that would follow me for over a year.

A young doctor diagnosed me correctly three weeks after the accident. I thought it would just go away with time. He wanted to give me a referral to speak to the TBI team at the local hospital, but since I was only there for vacation, I looked for specialists in Spain.

The neurologist I was with for a year was convinced that this was aftereffects of the vaccine. He gave me medicine for dizziness.

Time did not heal me. I was still in a kind of limbo…wanting to do more: teach more, travel more, read more, but my brain rebelled against my desires to work, to go out to restaurants, to drive, to live without my noise-cancelling headphones, to spend time in conversation. I pretended to be me, but it was an act. I laughed at jokes that would have made me laugh before, I talked to new neighbors and coworkers of Jose always using the patterns of good manners, but without the cooperation of my spirit. I was overwhelmed by the effort and spent hours alone afterward to recover some energy.

I talked to a psychologist who was paid for by my insurance. It wasn’t bad, but she treated me with CBT (cognitive behavioral therapy, which requires some mental/emotional effort. Not knowing that my problem was physical, she treated me for anxiety by trying to use the brain as a ‘driver’ for change. This just made me tired in the end, and my problems didn’t go away. It also pushed me to go back to work more. Which I wanted to do. I ended up taking a work tour in another city in Spain. My husband went with me because he couldn’t drive as much and he worked from home while I did the work at the academy. I had to cancel halfway through the tour. It was supposed to be two weeks and I only managed to do one. And that was taking two doses of lorazepam a day every day. During this tour I had my first mental health crisis. Thank god Jose was with me.

Come to think of it, the week before the tour, I started on a selective serotonin reuptake inhibitor. I did this because I realized that my brain wouldn’t calm down. First, I made an appointment with a psychiatrist, which I always do. I thought it was ‘going crazy’ and therefore I wanted to avoid facing it. When I explained my symptoms to the doctor, he laughed at me and told me that to treat me I would have to feel the way I was feeling for more than six months. So I went back to my neurologist and asked for help with antidepressants. When I took them they didn’t sit very well with me and I stopped taking them immediately.

I would then try another drug from the same family of medicines and the same thing happened to me, although perhaps worse. That’s when I called the US and asked for help.

Meanwhile, a private doctor once gave me generic supplements to give me energy. That seemed like a good idea. But then he insisted that I get vaccinated again even though I had such a bad reaction the first time. The last time I saw him, he told me that my problems were ‘all in my head’.

Over time, with the help of my uncle who came to Spain to help me (to save my life), I began to realize that what I had was not a direct side effect of the vaccine but of the fall that the vaccine caused me. He has a friend whose daughter was suffering from the same thing and he helped me see that this is what I am going through.

The doctors did not listen to me, they did not believe me.

Thanks to some very kind souls I had the courage to move to the US, where I knew that some doctors would take me seriously because at least the young doctor had diagnosed me correctly.

It wasn’t all roses in the beginning in the US either. I had to keep looking for doctors with up-to-date knowledge of my condition, going to appointments – some helpful and some unhelpful, repeating the story over and over again.

Tough surprises:

1. A psychiatrist who didn’t believe that selective serotonin reuptake inhibitors could cause me to have self-destructive thoughts.
2. Doctors with a lot of knowledge who didn’t want to refer me to other specialists who would have helped me more, because of money issues, and even knowing that I was my own (weak) service coordinator.
3. A balance treatment that was done before proving that my neck could withstand so much stress. (I hadn’t done any neck rehabilitation yet and was put on a machine that rotated me 360 ​​degrees very slowly.)

Pleasant surprises:

1. When I finally got up the nerve to talk about my mental health issues, very specifically with a TBI specialist, he told me that the issues were rooted in brain damage. He told me that it could be healed. This gave me some much needed hope and helped me let go of my fear about this issue.
2. A doctor put me in touch with a psychologist who specializes in people with brain issues and he has helped me with the stresses of the injury and also with other issues throughout my life. I now feel mentally and emotionally healthier than ever.
3. A woman I went to for craniosacral therapy referred me to two very good doctors. One who is both a specialist and a service coordinator for me. And the other who helped tremendously to begin the process of calming down my neurological system so that we could improve brain functions one by one.
4. The person who is now my service coordinator has helped me choose the right pace of treatment for me. She also found that I had SIBO and treated it with supplements. She also detected a more subtle problem in my neck and has helped me choose a “nucca” chiropractor and a physical therapist who has been able to recognize and treat the neck well after a TBI.
5. The person who helped me with the neurological system was also a source of much information and education about the condition as she treats it and suffered from it herself. Her support and the insights she has given me are priceless.
6. Online communities of people who suffer from TBI and are seeking and offering help. In particular I was greatly helped by The Concussion Community (run by a Dutch woman, with the content in English.)
7. The fact that here in the region where I live there is a group of doctors who work with patients with brain problems who meet from time to time to share resources, knowledge, ideas, research, etc. I am very lucky to be here and I am very grateful to all of them for the time and dedication they put in every day to help people like me.

I want you to know that there are often frustrations (sometimes many, often seemingly insurmountable) on the road to health. But it is not impossible to find a way forward. Each of us is in a different situation and I sincerely hope that you find the tribe that can support you and that you can find solutions according to your possibilities and resources.