Imagine feeling like you have a sweat bee stuck in your eye socket that randomly stings you. The sting hurts for seconds. My left eye is red and tearing. My nostril on that side is stuffy and runny. My left eyelid is swollen and my eye is droopy. Every time I move my eyeball, I am met with an extra sting. Just opening my unaffected eye moves my pained eye so I must keep my eyes closed and myself calm for 5-7 days until the cycle ends despite the constant stings.
My Journey
My journey of headache disease has been messy. I had headaches when I was a kid and when I was in my 20s, I spoke to a doctor and was diagnosed with migraine disease. In 2012, I developed a new headache disease, but my doctor told me it had to be just another migraine. He did provide me with a new medication that helped, but I knew it wasn’t a migraine. In 2017, I developed more new symptoms that felt like dental pain, but since nothing was wrong with my teeth, I was eventually diagnosed with trigeminal neuralgia. Shortly after that, the headaches came back and I realized I needed a new doctor. I was finally diagnosed with cluster headache. In 2020, I had another new onset headache disease, and this time it took a bit longer to get diagnosed because it is very rare. I was diagnosed with SUNCT.
What is SUNCT?
SUNCT is one of the trigeminal autonomic cephalgia primary headache diseases. Cluster headache is the most prevalent in the category. SUNCT is an acronym listing out the symptoms of the disease: Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing. Other autonomic symptoms may include: runny/stuff nose, swollen/droopy eyelid, facial sweating, pupil abnormally small and restlessness which includes pacing, rocking, etc. The attacks are short lasting – only lasting 1-600 seconds each, however a patient may experience hundreds of attacks per day. The majority of people are chronic, though some are episodic. There are no FDA approved treatments and very little is known about the condition or what will work to help prevent the condition in those who develop it. There is another diagnosis that is similar called SUNA, which stands for Short-lasting, Unilateral, Neuralgiform headache attacks with Autonomic Symptoms. In the case of SUNA, the patient has at least one autonomic symptom. It could be conjunctival injection OR tearing or another autonomic symptom.
Talking with my Doctor
Since little is known, I had a hard time getting diagnosed. My local neurologist had never heard of SUNCT so I consulted with a headache specialist out of the area. My daughter had helped me get a quick video and I was able to show him and get diagnosed. However, getting diagnosed just gave me a name, no treatments. While there are some treatments that have been used in some patients, there is no protocol. In my situation, since it presented alongside my cluster headache attacks, getting those managed has helped me attain remission for SUNCT as well. In my experience, the attacks follow a similar pattern to my cluster attacks and preventing the cluster attacks has prevented the SUNCT attacks.
Treatment Plan
Prevention has been a very long process for me. I started with a CGRP blocking medication. I then added vitamin supplements to address my insufficiency. I then added an alternative medication (psychedelic) that helps many with cluster headache. Finally I was down to 1-4 attack days per month. This is when I learned about gammaCore and added it to my routine. This got me down to my elusive zero and have been in remission from SUNCT since March 2021. However, the disease does not have a cure and will require lifetime management. By sharing my story and helping raise awareness I hope to connect to others who experience this disease and to get attention of researchers who can help us find more understanding and hopefully treatments.
