SUNCT - Discovering a New Diagnosis
Last updated: September 2021
How do you navigate experiencing new symptoms? How do you handle it when your doctor doesn't know a diagnosis or a treatment plan for the new presentation? I experienced this recently, and here is my process from my mind freaking out to my logical mind taking the steps necessary for diagnosis.
My first episode
I've had cluster headache attacks for a while now. I have learned to manage them and know what to expect. However, a little over a year ago, after a cluster attack, I had what felt like a needle sticking me in the eye over and over. My eye got red and watery again. Then my nose was runny and stuffy. Finally, my eyelid swelled, and my eye drooped. I thought the cluster attack was trying to come back. Every time my eye moved, more needle stabs. I couldn't open my eye because it watered so much and caused more needle stabs. I called my neurologist's office on Monday morning after experiencing this most of the weekend. The attacks came to a sudden stop on Tuesday, and on Wednesday, my doctor's office returned my call! The message I was given stated, "Since you have eye pain, you should see an eye doctor."
Continued episodes and no answers
I felt very frustrated, but I did have an appointment the following month and was able to talk to my neurologist face to face. He was perplexed by my new symptoms and unsure how to help. I went on to experience two more cycles of these attacks. As I experienced each cycle, my research kept landing me with the same diagnosis. I needed a doctor who was familiar with the diagnosis to confirm. However, between insurance and doctor navigation, which can be a tedious process, no one was sure where to go from here.
When I had two more episodes, it was hard to remain calm! My mind tried to remember that it had come to a sudden stop before, so surely it would happen again...right? Each episode got longer, though. The sensations changed from needle pokes to feeling like I had a sweat bee stuck in my eye randomly stinging me. The ER didn't seem like a good idea, but it was a terrifying experience. Not only was the pain severe, but I literally could not open my eyes. I wondered if this could become my new normal. I knew when the episode ended, I had to seek answers.
Neura Health: Virtual headache medicine
I had an opportunity to try a new to market virtual headache clinic, Neura Health. While the company is still expanding medical licensing in each state, I was able to get an educational visit. This visit moved mountains for me. I was able to share a video my daughter helped me capture of these new attacks. The appointment resulted in a new diagnosis and new treatment options. Since Neura Health cannot currently prescribe, they will work with my current neurologist to help me implement the medical plan we decide to try. My favorite part of Neura Health is I can send them a message anytime. When I send a medical question in, the message is delivered to my doctor by my concierge agent. I can get a response that isn't lost in translation.
What is SUNCT?
My new diagnosis is also a member of the trigeminal autonomic cephalgia primary headache family. SUNCT: Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing is a rare condition. The rare status makes it hard to know the prevalence.
- Short-lasting: The attacks typically last 1-600 seconds each.
- Unilateral: They occur on one side of the head.
- Neuralgiform: These attacks strike the trigeminal nerve (typically in the orbital, supraorbital or temporal area)
- Conjunctival injection & Tearing: This would refer to the red, watery eyes. There may be other autonomic features present, but this is how it differs from SUNA, which is the same as above, but patients who experience SUNA do not experience conjunctival injection & tearing, but another autonomic symptom.
Working to manage SUNCT
During my last episode of SUNCT, my brain began to imagine I had a sweat bee stuck in my eye socket. It would sting me randomly. This has become my most debilitating diagnosis. While I am currently working hard to manage well and prevent attacks, it will take time for me to find treatments that will work for me when the next episode strikes.
Have you experienced new symptoms or a new diagnosis? Do you experience a rare headache type?
Are the family and friends you will be seeing this holiday season understanding about migraine?