Confessions of a Cluster Headache Sufferer

11:55 p.m.

Imagine the searing end of a metal fire poker after it’s been thoroughly immersed in hot embers for hours – glowing an angry red. . .furiously hot – and now imagine what it would feel like to be awoken at 11:55 p.m. to that being shoved into your left temple. Every. Night. For weeks, sometimes months.

This is my life with cluster headaches.

Like clockwork. I go to sleep, hoping and praying for a pain-free night, only to be awoken by blinding pain in my left temple, that radiates through my left ear, jaw, eye socket and eye ball.

It comes on instantly, full force. And immediately I’m awake and incapacitated. Writhing in my bed, or on the bathroom floor if I can make it that far. Forcefully pounding my fist repeatedly into the side of my head because for the split second it hits my temple I have a false sense of temporary relief, or at least, a better pain.

My husband rushes in with ice packs, which I crush against my head and face as tightly as possible, as the icy sensation momentarily distracts from the searing pain of the cluster headache. He repeatedly tries to get me to stop hitting myself in the head with my fist and instead digs his thumb into my temple in attempt to relieve the pain.

I feel sick, as though I could vomit at any moment. I have no energy – completely weak and unable to function. All I can do is writhe and kick my legs, moan and whimper like a small child.

In my head I’m SCREAMING. I’m thinking every angry cuss word you’ve ever heard, and simultaneously begging God to take the pain away. Over and over. Please make it stop. Please make it stop. Please make it stop.

Time passes…30 minutes, 45 minutes, sometimes an hour, sometimes two. And then, finally, it ends. I gather myself up and make my way back to bed and try to get what’s left of a night’s sleep.

Cluster headaches. Still a mystery to doctors, and something I’ve been experiencing since I was 12 years old, when I was diagnosed by a neurologist after worrying my parents for months. I’m somewhat of an anomaly, as they’re more commonly associated with males and usually start later in life. Some people, bless their souls, experience chronic clusters. Every day of their lives. The thought of it terrifies me. What if this cluster period never ends? How do they live like this?

I’ve been “lucky” so far. My clusters come and go…for several weeks or months at a time, every year and a half or so. This time especially lucky, because they’ve been during the night. In previous periods, they’ve come in the middle of the day, severely affecting school and work. But every period I reach a breaking point of sorts. Due in part to lack of sleep, part in terror that they won’t end, and part in light of the fact that you start rearranging your life to accommodate them. Because while they come like clockwork daily, they can also show up unexpectedly, and be triggered – by alcohol, sun exposure, different lighting scenarios, overheating. Drinks with friends? Not an option. Working out? Can’t risk it. I’ve had two cluster headaches in my lifetime in movie theaters. I’ve thrown up in two movie theaters. I’ve waited in a movie theater bathroom while my sister-in-law brought me random clothes from her car so I could leave the theater not covered in vomit. Basically, your social life goes out the window.

This current cluster period has lasted three weeks so far. Last weekend brought forth a meltdown. “I can’t have another night like this. How can the doctors not have a solution? What if they don’t stop this time? I’m so tired.” Sobbing in the shower, standing in ice cold water hoping that my breakdown wouldn’t lead to another headache and willing myself to stop at the sheer thought of it. Barely breathing.

These are not your average headaches – I know, because I have those, too, more days than not. And they’re not migraines. I know, because I have those, too, pretty regularly. They all deserve a special place in hell, and I don’t mean to diminish any of them. But clusters. Clusters, I would not wish on my worst enemy. Unless I was an incredibly vengeful and vindictive person and someone had seriously wronged me or someone I love. In which case, cluster headaches are exactly what I would wish upon them, because I literally cannot imagine anything more miserable than a life of enduring them.

I don’t expect many people to be able to relate to this post, and I’m not sharing for empathy, but I needed to write this for a few reasons.

  • During a cluster period, the headaches are kind of all consuming. I think about them constantly. I can feel it all the time – just sitting there under the surface – a looming shadow waiting to strike. The anticipation of getting a cluster headache is emotionally and physically draining, and I needed to write it all down in hopes that getting my thoughts on paper might help prevent them from continuously circling around in my mind.
  • If you’re a praying person, I’d really appreciate your prayers. It’s truly a pain I cannot express accurately in words and a much added stress and exhaustion in my life. Your prayers for strength to get through this cluster period, and that it ends soon, would be so deeply appreciated. I’m trying acupuncture for the first time tomorrow, and hopeful it provides some relief.
  • I recently had the absolute most horrendous experience with the neurologist I was referred to, which is adding to my anger and frustration at this time. To be told nonchalantly after a few minutes of meeting with me that “they don’t think I have cluster headaches,” to suggest that “my headaches are emotional, not physical, probably stemming from a childhood trauma or rape I’ve suppressed” (which, I can assure you is ABSOLUTELY not the case), and to recommend I take a supplemental drug that can only be purchased through a rep who happens to work for the doctor’s wife’s pyramid sales scheme, are just a few examples. The fact that the nurse couldn’t tell me if my blood pressure was good or bad because she “needs to brush up on that” skill, should have been my red flag. Needless to say, when I’m lying on the ground each night in agony, the words “how dare you?!?” have been frequently running through my mind. And again, in order to move on from this, I needed to write it down.

If you’ve made it this far, thanks for reading. This was more for me than for anyone else, but your support means a lot, and your prayers are really all I could hope and ask for right now.

All my love.

-Hayley

 

 

Advertisements

5 Comments Add yours

  1. Tami Peck says:

    It tears me up inside to know how much my daughter is hurting!! I wish I could endure her pain for her. I’m hoping and praying she can find a Dr. that will figure out a solution. I love you sweet girl, you are such a caring and loving person and don’t deserve this. Thanks to all who say an extra prayer for her.

  2. Lora says:

    Love you Hayley!!! I hate that you are going through this pain!! I get sinus headaches that make me feel awful, I cannot imagine what you are going through!! Definitely in my prayers love ya cuz!!!

  3. Donna says:

    I will continue to pray for your healing, quickly and thorough healing.

  4. This makes my migraines sound like a walk in the park in the springtime. I am so sorry. I pray you can find a Dr who can help you! 💜

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s