Long COVID and NDPH
Many people are finding that they have a constant headache and brain fog after COVID. They are reporting continuous head pain accompanied by other symptoms like heightened anxiety and intense brain fog after “recovering” from COVID. While COVID is a relatively new thing, the concept of a virally triggered constant headache is not new. Previously, it may have been a rare occurrence. The head pain would snatch people out of their lives and jobs after seemingly mild head colds and sinus infections. It put them on a long, painful, and perhaps endless train of failed treatments and frustration. It is called NDPH, New Daily Persistent Headache, and it was first documented in medical literature in the 80’s.
These headaches will derail your life. They are relentless, and though not always what you would describe as “excruciating”, they push you to your limits. The accompanying anxiety and brain fog are just terrible.
I personally never had COVID, but I do have NDPH. Maybe my experience can help save some readers some heartache and pain in navigating this landscape.
One neurologist, Dr. Todd Rozen, has dedicated a good amount of his career to studying NDPH. He has recently published this paper comparing the long COVID situation with the persistent headaches recorded after the 1890 Russian flu pandemic.
Neuroinflammation and Autoimmune
After a viral infection, our immune systems go a bit haywire. Inflammation is a big part of the immune response, and inflammation in various types of tissue seems to be an issue after COVID. Unfortunately, the neuroinflammation that can be responsible for the headaches and brain fog is not easy to address.
Neuroinflammation- Not an Easy Fix
It seems like an easy fix, right? If something is inflamed, just take a medication to calm it down, right? There are dozens of medications in every pharmacy that work on inflammation. Unfortunately, this is not the case with neuroinflammation. Even the strong medication used for inflammatory conditions like rheumatoid arthritis and psoriasis do not cross the blood/brain barrier.
If popping some pills was the cure for neuroinflammation, then we would have a decent solution to problems like Alzheimer’s and other dementias. But we do not. Even Pfizer declined to pursue investigating Enbrel for treating Alzheimer’s because even though it is a strong anti-inflammatory medication, it just does not work well enough on neuroinflammation.
The signaling proteins that are causing the inflammation are called TNFa. Those medications for RA and psoriasis are in a class called biologics. They might be particularly good at suppressing TNF, but they also have gnarly side effects. Inflammation is an important part of our immune system and using these can be more like using a sledgehammer than using a scalpel. If you are in the US, you may have noticed that the commercials for these medications come with a disclaimer warning you that they may make you susceptible to certain infections.
Steroids can often achieve temporary relief. Dexamethasone or other steroids can make you feel almost normal again. But they are a terrible long-term option. The amount of steroid use required to keep me pain free would probably ruin my bones. Long term use causes bone death (osteonecrosis), usually in the hips.
Prognosis: The Good And The Bad
The good news is that the vast majority of people recover fully from a virally triggered persistent headache within a year. Given some time, the immune system settles down and things go back to normal. However, the bad news is that some people do not recover at all. With NDPH, if the symptoms do not resolve within a year, it is unlikely that they will fully resolve at all. Technically, I am in the second group. I remain functional through repeated doses of psilocybin to control the pain.
I know I have not exactly provided bright shining words of hope here. But this is the reality of the situation. Furthermore, additional time in this hellish state is just more time to chip away at our sanity, making time of the essence. We have already lost too many to suicide from these post COVID symptoms.
My personal advice is to focus on the treatments that do reduce neuroinflammation. One legal option is ketamine infusions. The results do not last long, but some people get several weeks or even a month of “normal” back after ketamine infusions at the dose used for chronic pain. Unfortunately, they can be quite pricey. The relief they offer does not last long for me either, so the cost adds up. That is what turned me to psilocybin. It costs nothing, and I can control the schedule to stay pain free and clear headed.