What is CTE?
CTE, chronic traumatic encephalopathy, is a brain disease that is degenerative and progressive.
CTE occurs as a result of repetitive head impacts (RHI). CTE has been found in people with or without a history of concussions. Concussions may add to the likelihood of getting CTE, but the biggest factor seems to be the length of time exposed to repetitive hitting, and the force of that hitting. CTE was originally only thought to exist with boxers but it was later discovered in victims of physical abuse, head banging and poorly controlled epilepsy. Now it is being associated with athletes playing contact sports including American football, ice hockey, soccer, wrestling, extreme sports, as well as veterans and military personnel with a history of being exposed to repetitive blows from training or blasting. One of the largest concerns is the growing discovery of CTE in high school and college athletes and tragically athletes who only played sports at the youth level.
The brain of a person with CTE gradually deteriorates and tau proteins begin to become defective and interfere with neuron functioning. At the current time CTE can only be verified through a specific autopsy. But there is a growing consensus among researchers that see the possibility of a clinical diagnosis of CTE, or TES (traumatic encephalopathy syndrome). The clinical presentation of CTE or RHI usually begins with a lack of behavioral control: explosivity, impulsivity, rage behaviors, paranoia, violence, and loss of control. In most cases mood behaviors such as depression and anxiety occur. Memory issues, executive functioning deficits, and attention problems have also been noted. Addictive behaviors and suicidal thinking are also associated with CTE & RHI. Since often times the onset of CTE symptoms occurs many years after the repetitive head impacts (RHI), it is imperative for doctors, family members, morticians, policing entities, and rehab facilities to look for the possibility of CTE or RHI through examination of the history of each individual.
CTE is not a concussion?
A concussion has occurred any time you have had a blow to the head that caused you to have symptoms for any amount of time. You do NOT need to have lost consciousness to have a concussion. These symptoms include blurred or double vision, seeing stars, sensitivity to light or noise, headache, dizziness or balance problems, nausea, vomiting, trouble sleeping, fatigue, confusion, difficulty remembering, difficulty concentrating, or loss of consciousness. A concussion has also occurred when a person gets a “ding” or gets their “bell rung.” An athlete that has a history of RHI will probably have a very inflamed brain and is probably more likely to get a concussion. A concussion is due to physical damage in the brain. A second concussion can be deadly.
What is the difference between CTE and a concussion?
The symptoms of CTE or RHI generally do not present until years or decades after the brain traumas occurred or after one stops actively playing contact sports. While concussion symptoms may resolve within a few weeks, the symptoms can last for months or, in severe cases, even years. When this occurs, it is called post-concussion syndrome. Post-concussion syndrome is different from CTE, and the symptoms of post-concussive syndrome usually resolve years or decades before the onset of CTE symptoms. If you believe you are suffering from either an acute concussion or post-concussion syndrome, contact your physician. For more information on concussions, visit the Center for Disease Control (CDC) website at https://www.cdc.gov/traumaticbraininjury/index.html. For more information on physicians in your area who work with those suffering from brain trauma, please contact your local Brain Injury Association or Brain Injury Alliance. See this page for more info: https://stopcte.org/for-you/if-you-are-an-athlete/when-to-see-a-doctor/
If I have the symptoms of CTE, do I have the disease itself?
Just because you have some or many of the symptoms of CTE does not necessarily mean that you have the disease itself. There are many possible causes of these types of symptoms including RHI. If you are having difficulties, you should speak with your primary care or specialist physician. Make sure they have an understanding of CTE (it is a new disease) and have them rule out that possibility for you. We created this healthcare navigation guide to take with you to the doctor’s office. It will greatly improve your chances of having a worthwhile and helpful experience. https://stopcte.org/wp-content/uploads/2020/12/Doctor-Form-CTE.pdf
How is CTE diagnosed?
At this time CTE can only be diagnosed after death by postmortem neuropathological autopsy but RHI damage may be possible with diffusion tensor imaging. Scientists are working on a blood test. There is a lot of research going on to come up with a diagnosis similar to the way we diagnose other neurodegenerative brain diseases. We expect to see that soon.
Can CTE be cured? What can I do if I think I have CTE?
Unfortunately at this time there is no cure for CTE. However, so much research is being done to try and slow the disease progression and prevent the disease. In the meantime following a healthy diet and avoiding sugars and alcohol and processed foods can go a long way to reduce brain inflammation and stop the disease. The symptoms of CTE & RHI, such as depression, anger, sleep problems and anxiety, can be treated individually. If you believe you may have CTE or RHI damage, please talk with your physician. For more information on treatment discussions to have with your doctor, please see this page: https://stopcte.org/whats-cte/treatment-discussions/
We know many people with possible CTE or RHI or PCS and they live happy lives. Never give up on finding a way to find that sweet spot. It is like any other disease or disability. It can be overcome and life can be fun again.
Please also see:
https://stopcte.org/what-is-cte/symptoms-of-cte/
See the CDC Fact sheet on CTE at this link:
A lot has changed since 2018 but this seminar we did for the Council on Brain Injury Clinical Forum Series is a good introduction on CTE for the layperson.
https://remed.zoom.us/recording/share/DPK_Np6JnwyGpHxtQt0bkUJ0h3O9–ESbA3pdTRmDJY