Please please please

Won't someone get this pain out of my head?

Admin & paperwork

I have a headache right now. It's pretty tight around my forehead, sharp aching. 
But I'm not writing it down. I've made earlier this evening my cut off point for my headache diary, and I've spent the best part of two hours filling in and typing out and now printing 6 months worth of headache diary. 

I'm almost ready for the appointment tomorrow. Physically anyway, with all the paper work and documents.

But mentally?

Nah. Not at all.


33 pieces of A4 paper, 32 double sided.
Month 1 printed out from my excel document came out as 15 pages.

Thankfully my dad buys the printer paper.

"Somewhat misleading"

I've never had much information about my headache from medical professionals. A diagnosis of "chronic daily tension headache of muscular contraction type" with a side note of "you need to relax more".

I was absentmindedly Googling this week and I discovered this description:

"The term tension headache is somewhat misleading, as it may suggest that the headache is caused by psychological tension or stress. In the past, this was indeed thought to be the cause, but we now know that this is not always so. Tension headache is actually a kind of general name for various types of headache that do not fit into any other category. Tension headache is generally divided into a type that occurs on less than 15 days a month and a chronic type that occurs on more than 15 days a month.

Cause
In many cases, the cause is unknown. Hereditary factors appear to be involved. The disorder is often associated with poor posture, the use of painkillers and fatigue, but psychological stress can also play a role."

So.

Chronic, because I have it everyday.And tension because it's not a migraine or a cluster headache, and it's not caused by a brain tumour or a bad jaw or eyesight or any hormone imbalance.

And have I always had poor posture? Or is it possible that I developed poor posture because I had a really aching head that feels heavy so much of the time and I just want to chop it off and lie it down for a break.
Use of painkillers: possibly. But I've come off them. Twice. I now keep my painkiller days to less than the vital 15 days a month. So...why is it persisting?Oh all that psychological stress...

Sigh. 

Thresher Maw

This is the worst it's been in a long time. That I can remember. 

9 years blur into one long headache.

I remember significant non-headache moments, like year 2 of uni, after some Tui Na. A whole 15 minutes of peace. 
And 4 hours in Melbourne after 6 days of daily or twice daily massages. One afternoon in July when my headache was a 2/10 on the pain scale and I was bouncing off the walls.

This...phase... I'm dealing with, but I'm starting to struggle. I try to resist taking painkillers, and now especially because whenever I take them, they do nothing.  

This pain keeps coming, in sickening, crushing waves. It takes hold suddenly and winds me. 

I feel the breath escaping as it clamps around my head, my neck, it sinks its jaws into my skull.

It's burrowed deep within the bone and flesh always, forever, and like a worm it surfaces for fresh air and a bit of sunlight when it feels like it, displacing the soil as it goes. Imagine as it displaces that soil, it creates pain.   

That would make it right now more akin to a Thresher Maw.

Yes, this is what it feels like I have inside my head. No, I don't expect you to understand if you don't play Mass Effect.

I feel it creeping up through the muscles that hold my face together. Yawning, coughing, chewing: they can all exacerbate the pain and create twinges in my temples not unlike being stabbed. 

And if a glimpse of self-pity emerges, bringing me to tears on my morning commute, I have to quickly suppress them. Crying only ever makes things worse, and after your childhood it stops getting you anything. 

Not long ago, I stopped talking to someone who antagonistically said "F*** your headaches". He refused to believe that doctors couldn't tell me what caused it ("bullsh*t") and proceeded to basically say I wasn't trying hard enough to get rid of them and they couldn't be that serious anyway if I still had it after 9 years.

It's not as simple as saying "this caused/causes it". It's Chronic Daily Tension Headache of Muscular Contraction type, so my muscles are involved. But my muscles weren't this tight & knotted when I first got my headaches, so they were not the primary cause. 

I'm not supposed to take too many painkillers - no more than 15 days a month. Which leaves me in pain the rest of the month, and now apparently even those painkillers won't help.

I've eliminated foods, I've cut out caffeine. I came off the pill. I've been on 7 different medications. I've had blood tests and MRIs.

And now after nearly 5 years of not being under consultant-led care I'm trying to get it again. I made my doctor refer me. And that consultant was useless, so I asked to be referred elsewhere. And after 4 months of waiting for my new referral I discover they forgot to write it, so I'm still waiting.

How can anyone say I'm not trying? I do what they tell me, I try the yoga and the water and lentils and flax seed vitamins. The other night I tried something I saw on Pinterest where I put a pack of frozen peas on the back of my neck, and put my feet in a bowl of hot water.

Blurry photo courtesy of my dad.

It did nothing.

This last 10 days, I have tried to "f*** my headache". I've been to work, I've been to the gym. I've been out and about and drunk litres of water, and got to bed early and attempted mindfulness.

But this is just soul-crushing.

It's when you take ibuprofen and paracetamol, because you can't deal with codeine, and they usually take the edge off of a headache but they've stopped working and sometimes the headache gets worse even after you've taken them.

It's not realising you're crying with pain until it's too late. 

It's feeling an alien life form resting inside your skull and whenever you move your head it feels like it's so much harder to move because of the extra weight.

It's creasing your face up because of twinges of pain. Pain in your temples, behind your eyes, in your neck spreading up, in your forehead spreading down. Arcing over your skull. 

I don't want this. Trust me, I don't want it. But I can't afford 3 to 4 hours of massage once a day, not just in money but in time.

It pounds. It thumps. It thuds.

It pulses and aches and crushes.

It makes lights too bright, and sounds too loud. And functioning can become really difficult. 

And yet I do it. I put one foot in front of the other, and I carry on working and I keep on running. 

Don't tell me I'm not trying. I have to try everyday not to give in and give up.

Late frustration

I've just found out that the National Hospital of Neurology and Neurosurgery, where I am supposed to be referred to for my next consultation, has never had a referral letter from my GP.

I have in front of me the letter to my GP, from St Helier hospital, saying they are discharging me from their hospital and I should be referred to the National Hospital.

It is dated 6th October 2014.

On Friday it will be 4 months since that letter was sent.
I wondered what was taking so long.

Turns out, my GP failed me.

I am fuming beyond words, but I'm taking control of the situation. They will refer me this week, if it takes a phone call everyday to check up on them.


Just when I thought I was feeling the worst I could.

The Wheels on the Bus

So, I'm siting on the bus last night, and I really think I might be sick. 

I don't often get nausea with my headaches, but yesterday was one of those unusual days. I thought it was because I was hungry, when I got it on the way home from London. But I'd eaten, and now it's that dinner I'm threatening to revisit.

And I'm wondering what the hell I'm doing. I'm still going out to the cinema even though I've felt rough all day. When I got home I went straight upstairs and did some mindfulness. And in those moments of quiet my head threatened to get worse. The throbbing quickened, sharpened. And then it calmed. 
But then as I did some washing up, it tightened. I almost burst into tears at sheer frustration. Then I took a few deep breaths, hardened my resolve, and carried on.

And now I was sitting on the bus, feeling sick and getting awful sharp pulses in my neck - my neck! - that were only adding to the deep aching that had spent most of the day in the right side of my head, but now for some reason was residing in the left temple. 
A drink or two, and then two hours in a dark room with bright lights on a big screen and loud noises all around. Just what the doctor didn't order.

But you know what?
My head got bearable halfway through my first rum and coke. And whilst I was aware of the pain, I was too distracted to pay attention to it. 
It was bearable throughout the movie. 
And outside, it only reared ugly, aching, nauseous head again when I had to run like a superhero for the bus. 

So there I was - again - sitting on a bus, with a pounding head and that feeling in my mouth that you get just before you vomit.
But I didn't. I got home. I took my pills. I went to bed.

And today is another day. Today is another day of fighting my head. Fighting for a pain free life. 
Fighting for myself. 

Irreparably Damaged

On Friday night, I went to bed at half 10, because my head hurt.
I woke up on Saturday feeling almost as fresh as a daisy - as fresh as a person with chronic pain and muscle tension can feel. My head felt fine, better than fine - it felt great. 
Until it didn't. 

It was about 11am, I think, when it started hurting. I still managed to tidy the garage up. 
And it got to 3pm when I decided to have a nap, hoping I could sleep it away. 
When I got up at 6pm, I felt better.
Until I didn't, again. 

It's on these days when you feel there is no hope. When you feel as though you are going through a constant cycle, on a rollercoaster, through continual ups and downs. A ride you're not enjoying, but you can't get off.

It grinds you down in the end. It grinds you down and wears you out and you become exhausted.
Even though in the morning I felt really pretty good, last night it didn't seem like there would ever be anything different. Like my life would never be anything but pain.

And I started to think: this is my brain causing this. This pain may not just reside in my head - it may spread to my neck and shoulders and down my back and into my hips, but it starts there. And the brain is the nerve centre for the body, telling it what to do, keeping it functioning. 

And mine seems to be damaged. 
I am damaged. 

Probably irreparably.

And I'm supposed to come to terms with that?