Living with HIV and epilepsy

  • December 1, 2020
  • 3
In this article
Red ribbon for HIV and epilepsy

Has your doctor ever used the word ‘comorbidity’? This is a term used to describe when someone has two illnesses at the same time. One of the many different kinds of comorbidity is to have HIV and epilepsy. 

According to the American Academy of Neurology, around 11% of people with HIV also have seizures at some point in their lives. Depending on your circumstances, you might:

  • Have HIV, and then begin having seizures because of the disease
  • Have epilepsy, and then contract HIV
  • Be unsure which one came first

Let’s learn more about the link between HIV and seizures.  

  1. I had HIV and seizures came later

If you have HIV and recently started having seizures, there are a number of possible reasons why this might happen. HIV and seizures are more likely to happen at advanced stages of the disease (especially if you have AIDS):

  • HIV brain damage: HIV can cause brain lesions (scars/damage), and damaged brain cells can cause epileptic seizures
  • Meningitis: If your immune system cannot fight off diseases like meningitis, this can cause brain damage and lead to seizures
  • Other brain lesions: Brain damage caused by other diseases may also be responsible for the seizures
  • Another cause: People develop epilepsy for all kinds of reasons - including genetics, head injuries or unrelated diseases

Today’s antiretroviral drugs (medication that fights HIV) are able to dramatically slow down the virus, so you minimize the risk of many of these kinds of brain damage ever happening. So, if you think you may have been at risk of catching HIV, it is very important to get tested and begin treatment as soon as possible. 

Learn more: Why do people get epilepsy?

  1. I had epilepsy first and HIV came later

If you already have epilepsy and have recently been diagnosed with HIV, this may at first seem scary - you will likely have many questions to ask. 

It is important to remember that there are now many treatments for HIV which can control the virus and most people with HIV in the US are able to live normal lives and do most things anyone else would do. If you have any questions about what having HIV and epilepsy means, you should always speak to your treatment team for advice and look at how taking HIV medication may affect your current epilepsy treatment plan.  

HIV and epilepsy treatments

One of the most important issues for people with the comorbidity of HIV and epilepsy is to think about possible drug interactions. Most people with HIV take antiretroviral (ARV) drugs to suppress the virus. At the same time, many people with epilepsy take anti-epilepsy drugs (AED’s) to control seizures. Unfortunately, these different drugs may interact - and make one or the other less effective. 

That said, there are some combinations of ARV’s and AED’s which seem to not affect one another, so you should work with your epilepsy doctor to choose the right combination for you. 

Managing HIV and epilepsy comorbidity

If you have the comorbidity of HIV and seizures, it is usually possible to successfully treat both conditions at once. And, while this may require some planning, most people with HIV and epilepsy can live a normal, fulfilling life.

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