Danielle Teal’s Battle with Cluster Headaches
In an effort to create more awareness around #clusterheadaches (CH), I thought I would share some personal pictures to give you an idea of what it’s like. Cluster headaches are a neurological disorder that can be either episodic (longer remission) or chronic (little to no remission). They are not migraines and often confused with sinus infections or headaches too.
On the medical scale of 1-10 in pain, it’s an 11 or more to give you an idea.
Cluster headaches, which occur in cyclical patterns or clusters, are one of the most painful types of headache. A cluster headache commonly awakens you in the middle of the night with intense pain in or around one eye on one side of your head. – Mayo Clinic
Symptoms include but not limited to: drooping eyelid, pupil constriction, redness of the conjunctiva, tearing, runny nose, facial blushing, swelling, or sweating, typically appearing on the same side (unilateral) of the head as the pain increases.
The images I have shared are just a small part of this long journey. I took these photos along the way. I can remember symptoms occurring as long ago as 2000. Initially, I thought I had allergies. Redness? Nasal discharge? Except Benadryl and Sudafed never worked to touch the pain. Tylenol never did either. I was so confused. I went to an ENT, allergists, Opthamologist, Dentist, etc. and no one could figure out what was going on.
The extreme pain occurs in seconds. My CH always resides in the right eye and right side of my face. As you can see in the bottom picture, that’s the start of the CH. I forced myself to open my eyes and not cry so that the full effect can be seen clearly. My eye feels like a hot poker was shoved through it. My right nostril and around my eye and temple feels like when you have to sneeze and you get that burning sensation when you’re unable to sneeze? Imagine that a billion times worse and it doesn’t go away. My body trembles and my blood pressure increases as it prepares for the pain. The images up top are when I’m in a full blown CH attack. I get these attacks multiple times a day, typically in the early mornings: 1am, 6am and 8am timeframes but it’s not limited to that. I could get them all day and have. Last year, I was hospitalized with them. I kept getting the attacks and my medicine wasn’t working, they had to keep me on oxygen until the attacks subsided. I can’t even begin to explain the intensity of the pain. It’s worst than anything I’ve experienced, even related to a broken bone and childbirth.
You feel desperate to take away the pain.
In 2007, I googled “eye pain, want to die” and cluster headaches popped up in the search. I went to the website it referenced and read all the content in its entirety. I remember sitting back in my chair shocked that I could very well have a disorder when the majority of the time I was completely utterly healthy. The catch too? It’s rare in women.
After some urging with my primary, I was referred to a neurologist for the first time in my quest to figure out what I had. I had a headache diary and brought my tracking of my symptoms. Because it was rare in women and I was at the tail end of my suspected CH cycle that doctor didn’t formally diagnose me. I was frustrated.
The following year, the attacks started again. A co-worker recommended I see a specific doctor that specialized in cluster headaches. I reached out to him directly. Pleaded with him to take me as a patient and to review my records. He did. And after careful review and examination I was finally diagnosed accurately. Which meant I would finally be given the appropriate medication to help. Words cannot even convey enough how grateful I am to have my doctor for almost ten years. He has been attentive and an advocate to my quality of life and well-being. As a single parent mother and working professional, he understands I need to be upright and functioning.
While there’s still much research and efforts to be done to figure out this debilitating disorder, I am grateful to be so close to a medical institution that can assist me. I’m also grateful that I’m only episodic and not chronic. My cycles last between six weeks to six months. Dependent on how aggressive the cycle is, depends on how aggressive my doctor and I get with the preventative and abortive medicine regimen. I work very hard to not let this impact my life. I am currently in a CH cycle and every day is a gift when the pain is prevented.
And while I’m grateful to only be episodic it pains my heart to know there’s thousands out there like me and many are chronic with little to no reprieve of the pain. I cannot imagine life like this every single day with no end of the pain in sight. So show that cluster headaches impacts so many lives, one notable celebrity that has them is Daniel Radcliffe, actor from Harry Potter.
My hope by sharing something so personal is that it helps spread awareness, it helps someone that might have cluster headaches and it shows that no matter what you can make it through some tough pain with a wonderful network of love and support. If you suspect you might have cluster headaches, this is a great place to get started.
If you know someone that has cluster headaches, give all the love and support you can. If you are someone that suffers from any sort of neurological disorder/condition, my heart goes out to you too. Reach out if you need support.
Cluster headaches are not just a head ache. <3