I guess every medical event comes with some surprises. Something not going as expected, an undiagnosed complication, financial problems, and many other possibilities. Based on what I have read, as well as my experience, concussion/TBI is one of the medical events that is less likely to have a “normal” course of events, with diagnostic surprises occurring 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. The first diagnosis was that nothing had happened to me – what I felt were just side effects from the vaccine (I fainted after getting the COVID vaccine). Then, on my second visit to the ER, they told me it was vertigo and that I should 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 otherwise fine.

As you might imagine, I was feeling 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. The young doctor wanted to give me a referral to speak to the concussion/TBI team at the local hospital, but since I was only there for vacation, I began a search for specialists in Spain. Also, I thought the concussion would just go away with time, as had the minor concussions I’d sustained from heading the ball in soccer games in high school and college.

In Spain, as we were moving to a remote part of the country, I found a virtual neurologist who was willing to take on my case. He was convinced that this was aftereffects of the vaccine, and he gave me medicine for dizziness, and later for depression.

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 before would have made me laugh, I talked to new neighbors and my husband’s coworkers 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 covered by my insurance. She 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, but wasn’t physically able to do. I ended up taking on a two-week work tour as a language examiner in another city in Spain. My husband went with me because I couldn’t drive, and he worked from the hotel 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 had spent month with a brain that wouldn’t calm down and tottered between anxiety and depression. To address this, I had made an appointment with a psychiatrist, something I’d always associated with “going crazy”, and so I had avoided it for a long time. 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.

Later, after the work trip, I would then try another drug from the same family of medicines, with the same result, although perhaps worse. That’s when I called the US and asked for help.

Meanwhile, a private doctor who was another attempt at medical clarity, 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 (I truly believe he saved 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 had provoked. My uncle’s friend’s daughter was suffering from persistent post-concussion syndrome (PPCS), and he helped me see that this is what I was dealing with.

Still, at the time, the doctors I was seeing 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.

There were some tough surprises:

1. A psychiatrist who didn’t believe that selective serotonin reuptake inhibitors could cause me to have self-destructive thoughts, even though I experienced it in my flesh.
2. Doctors with a lot of knowledge who didn’t want to refer me to other specialists who would have helped me more, in order to earn more money, and even while knowing that I was my own (weak) service coordinator.
3. A vestibular/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 in 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 concussion/TBI specialist, he told me that the issues were rooted in brain damage. He told me that it could be healed. This gave me 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 this therapist has helped me with the stresses of the injury as well as with other issues in 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 as well as a physical therapist who recognized and treated the neck well after the original injury.
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. These specialists 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.