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A morning in the life of a Cluster Headache survivor
Posted by rishin
7th Sep 2017

I was diagnosed with chronic cluster headaches about seven years ago. However, I had been dealing with them for at least another four years previous to diagnosis. The following is an off the cuff blog about a particularly stressful time when I was still looking for some form of reliable treatment. I wrote it at the time and it has been sitting on my hard drive in one form or another since then, recently I decided to put it out on the internet after starting mindfullyminded.com .

I've had mental health problems for many years, back to my teens and I'm 40 now, so the added stress of chronic pain simply added more to an already difficult load.


A morning in the life of a Cluster Headache survivor

Waking up

I awoke to a bomb going off in my head, the smell of stale coffee and cigarettes lingering in my mind from last night’s dream. The cacophony coming from down stairs signalled that the daily ritual of the school run had begun, the patter of tiny feet having long been replaced by a tribal dance. Light from the hall hit me like a bullet to the brain, searing into the fragments of my “self” and burning away any hope that this would be a reasonable day.

Breakfast

I dragged myself down stairs to be greeted by a domestic whirlwind. Plates and cups scattered around like the misbegotten remnants of the morning after the night before. Commands being issued by the kitchen’s commander in chief bringing some semblance of order to the chaos. The cup of coffee on the side welcomed me. I didn’t taste the first gulp, I was too busy trying to convince the jackhammer in my head to quieten down. The second mouthful didn’t soothe my concerns about the day ahead, I really did need a decent coffee machine.

The guy with the jackhammer shifted it up a gear as I reached for my pills. A dizzy mix of epilepsy meds and prescription opiates washed down with a steaming cup of coffee. There were probably better ways to start the day but right then I couldn’t think of any. Half an hour later and the jackhammer was down to a moderate drumming, I could see this day being as mean as it was long. The prospect of yet another hospital appointment excited me about as much as a hole in the head and I’d already got someone working on that.

At the hospital

The hospital was a hive of activity, a bustle of professional exuberance with enough white coats and uniforms to make me feel twitchy. I walked through clouds of tobacco smoke and into the main building, nodded to the security guard as he pretended to look busy, and decided to seek out my vice of choice. The coffee wasn’t as bad as I remembered. In my head, Mr. Jackhammer had finished his own coffee break and set back to work with renewed vigor. Despite the air conditioning, the heat of the day played its part and the resulting knot of pain behind my eye reminded me that the self I still clung to was long gone.

What once was

The occasional haze of a memory gives me a glimpse into who I was, what I felt but these are always across voids I’ve no hope of crossing. Memories turned into casualties of war, their bodies littering my mind. Corpses that bear only a passing resemblance to what they once were.

I assumed I was tired, worn down from the day to day pain that gnaws at my skull but I was wrong. It was grief boring into my “self” pulling a dark shroud over my senses. Tainting them, twisting them. I missed who I had been. I headed to the lift, a feeling of awkward self-consciousness skittering through me. Drs, nurses, and other professionals coming and going about their daily routine yet here I was having trouble simply getting through a morning. What did they think? Did they notice?

Hiding

The inside of the lift was a welcome reprieve from the weight of public opinion, taking a breath, I pushed the button and headed to the next floor. A small group greeted me in the waiting room, only two other “patients” were present but I was thankful for the small numbers. The last thing I wanted to do was have a staring contest with societal expectations.

Sitting down I pressed my head against the cool wall behind me. Welcoming the pressure I was tempted to slam into it but decided that all those white coats might give me some unwanted attention. Paranoid delusion? Maybe but then again maybe not. An unfortunate consequence due to lack of awareness is the horrified reaction I can get when I talk about the beast in my head.

The appointment

The beast coiled tighter around my trigeminal nerve making my head scream and my eye water. I just needed to see the consultant, that’s all, I could do it. The idea of seeing my regular neurologist thrilled me with a buzz of excitement. At last, it would be someone who would understand. Someone who could help. I heard a nurse saying something but I couldn’t focus. My attention was taken fighting the beast in my head. She raised her voice. It was my name. At last, it was my turn, at last, I would get my treatment changed and I could get some relief.

We walked through the doors towards the consultation rooms. It was there, literally a light at the end of the corridor, my escort could see I was having trouble and the look of genuine concern on her face warmed me in a way I can’t fully put into words. She didn’t know me, didn’t know what I’d been like before, all she knew was that I was hurting and she wanted to help.

Betrayal

We reached the room and I breathed out with relief. I’d done it. I could get my meds changed and we could move on to the next stage of treatment, whatever that would be. It was then that I realised I’d been falling since waking. Breakfast. The journey here. Waiting. All of these had all been my descent. Now as the locum turned to face me I hit the floor.

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