17 Years in Cluster Headache Hell

Happy anniversary to me!

October 17, 1999 marks the day my life changed forever.

I’d been fighting a stubborn migraine attack for over 24 hours and it wouldn’t let up. I was tired, but couldn’t sleep.


A lightning strike to my head sent me reeling to my knees. Something had exploded inside and set my whole head ablaze with searing flames of agonizing torture.

You probably think I’m exaggerating.

Honestly, those words don’t do it justice. It was much, much worse.

No matter what I did, how many pain pills I took, or how desperately I tried to relax and sleep it off, the fire would not go out. I didn’t wait long to call for help, yet those few minutes felt like an eternity. As I asked my then 7 year old daughter to call 911, I was convinced this nightmare was going to kill me. We were the only ones in the house and I did not want her to watch me die. It was bad enough she had to watch me beat my head against a cast iron claw-foot tub while we waited for paramedics to arrive.

My husband arrived home as I was being carried to the ambulance. He quickly made arrangements for child care so he could meet me at the ER. Due to the extreme pain, the doctor immediately ordered a CT scan to rule out catastrophic brain injury. It was a frustrating disappointment to hear that the scan was completely normal. How in the world could such excruciating pain leave absolutely no trace evidence? I was out of my mind in agony, screaming, cursing, and thrashing about. This was no ordinary migraine.

The nightmare kept coming back.

I continued to get these attacks at least twice a week for the next 6 months. My doctor prescribed powerful pain killers that did absolutely nothing to stop the pain. Assuming they were migraine attacks, we tried one preventive after another, hoping something would work.

Desperate for relief, I went searching online for answers. It took some time, but I finally found the answer…a name for this living hell…CLUSTER HEADACHES. My doctor was such a good sport about my self-diagnosis — accepting it without question and even calling in an order for oxygen tanks. It took the oxygen supply company a few trys to get it right, but I was relentless at insisting on a HIGH FLOW regulator and NON-REBREATHER mask. Miracle of all miracles, the O2 stopped the attacks COLD.

But they still kept coming back.

That’s when my doctor gently got in my face. “Tammy,” he quietly suggested, “I think you need to see a neurologist. These aren’t ordinary migraines and I’m not sure how to help you anymore.” Thank God for doctors with humility!

That’s when I met my current neurologist. I didn’t want him to get defensive, so I didn’t tell him that I already knew my diagnosis.  Instead, I simply answered his questions. When he asked, “Where does it hurt?” I shoved the palm of my hand into my right eye.  Instantly he replied, “I think you have cluster headaches. They’re really rare, especially in women, but there really is no other explanation. We need to start you on verapamil and some oxygen.” The new medicine made the attacks less painful and less frequent. While the attacks never really went away, they certainly gotten easier to deal with. Even with the right treatment, some attacks can still leave me screaming and begging for death.

I’ve survived 17 years in hell.

It’s hard to believe that I’ve been living with cluster headaches this long. When I explain this disease to strangers, they respond with shock and horror, often wondering aloud how I can possibly cope with such terrible pain.

Most of the time I smile, shrug my shoulders, and say, “What choice do I have?

One thought on “17 Years in Cluster Headache Hell

  • November 3, 2016 at 8:34 pm

    Reading your story reminded me so much of ours. My husband is the one with the chronic migraine though. It’s funny we don’t say “it’s in the contract” we always say “we have a license that says so”. Humor has been a huge part for us as well. We talk about the “in sickness & in health part” always discussing the health part isn’t accurate. I really enjoyed your post.

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