Let’s discuss the H in MHAM: Headache Diseases. These are non-migraine diseases that members of our community deal with every day. While this is by no means an exhaustive list, it’s always important to remember that we are a diverse group of individuals that have a range symptoms and presentations even within the same disease states.
In 2009, I suffered nerve damage after brain surgery and have been living with Trigeminal Neuralgia (TN) since then. This painful condition affects the right side of my face and produces constant throbbing pain. Some days it’s worse than others, and despite constant searching, I have been unable to find an effective treatment.
Anna Williams is also a patient with TN, though her pain is unilateral. I reached out to Anna to discuss her TN and her other headache diseases, including Cluster and SUNCT/SUNA. Anna is coming up on six years with TN which she laments, “It is absolutely mind boggling how much TN can feel like a dental or sinus problem or in some cases a problem of the eye. My brain keeps telling me if only I didn’t have teeth or something wasn’t wrong with my sinuses, I would be fine. There’s nothing wrong with either. It is the nerve.”
This is a feeling I have heard repeated frequently with TN patients and I myself mentioned it to my dentist at my last visit, even though I know it is just my TN and therefore my brain playing tricks on me. I marvel — and at times with fierce anger — at our brain’s capacity to outwit so many functions of our bodies.
Five years ago, Anna was also diagnosed with cluster headache. She shares, “I never knew the human body could create this level of pain and I could live to keep re-experiencing it over and over.” She continues, “They are so debilitating that when it comes, all I can do is survive the attack. The PTSD of the next attack and thoughts of where will I be when the next one strikes is terrifying.”
Anna was also diagnosed with SUNCT/SUNA two years ago. She said, “It really feels like something is in my eye or wrong with my eye, but it’s the nerve. Just moving my eye creates another attack. Opening my ‘good’ eye triggers another attack in my SUNCT eye, so I’m literally blind until the cycle ends. Realizing most doctors have never heard of it, would never recognize it, and let alone there is no treatment for it, is hard. Knowing there are no treatments and not even any clinical trials being considered right now make it hard to have hope for this rare disease.”
New Daily Persistent Headache
I also reached out to Alan Kaplan to tell us a bit about New Daily Persistent Headache (NDPH). And this is where this blog post gets a little wonky. You see sometimes the H in MHAM doesn’t really stand for a headache at all!
Alan has been diagnosed with NDPH for the last six years. According to the Cleveland Clinic, “people with NDPH have a headache that won’t stop and doesn’t get better with common treatments.” This headache starts for no apparent reason and can go on for many years. What Alan would like you to know about NDPH is that even though it has the H in its name, NHPH is not just a headache. Instead, it has many of the same features as migraine, including photophobia, phonophobia, nausea, sensitivity to barometric weather changes and more.
This was just a brief primer on some of the headache diseases in our community.
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