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.

Running up that road

This morning when I woke up, I could barely lift my head off the pillow.
In my right temple sat a weight so heavy that it hurt to move.
For the first time all week, I had hit a 9 out of 10 on the pain scale, and it warranted some painkillers.

I'd had this particular for about 18 hours at this point. All the entries in my headache diary were 7s and 8s, and even 8.8s. But never a 9.
At lunchtime today, despite taking 2 aspirin at 9am when I got up, I was at a 9.2. It hadn't touched my pain, and I could barely do anything.
I was lying in the dark just after midday, wondering how the hell I was going to get through the day if this aspirin wasn't going to help, when my friend rang.
And my first thought was to ignore it.
But instead I answered.

And it could have been the honest, friendly chatter of two mates hashing out dilemmas, exchanging the dramas in our lives, or it could have been the radiation that mobile phones release. Or maybe, 3 and a half hours later, the aspirin I took started working.
But whatever it was, my headache actually got better.
It went from a 9 down to a 7. A 7 I can bear, even if it's a constant 7. You'd think a 7 sounds high, but if I was going to say my base state is anything, it'd be somewhere around 6. So a 7 isn't all that bad.
I'll add up all the scores in my headache diary and find a median state for you, if you'd like.

I was meant to get up for a run this morning. At 9am this morning I would never have thought I could go for a run at all today. 
But at 4pm I did. 

I was going to say I am not the same woman this evening as I was this morning. But the fact is I am. I am two different mental, physical and emotional states of the same woman. The difference is that the woman that's writing this right now is positive about life and the woman that made the below video blog was in a state of despair.

And that's something I need to work on.

My Head Aches: Part 4

Crappy head, crappy mindset

It's a wonder I've kept hold of my sanity, though when I think about it nearly 9 years of pain must have had some effect on my mental abilities too, not just my mental health.

I got through my A-Levels with this brand new, confusing headache. I studied for my degree with an ever-increasing feeling of despair, and disbelief, and graduated with a 1st.
I've been working for 4 years, and still I can get through a normal working day, sometimes a lengthier than normal day, with this head.

But sometimes, I stare at the screen, and the light burns my eyes. Sometimes the noises in the office, of phones and talking, is hard to bare.
Sometimes I wonder how the hell I manage to do anything when it feels like someone is drilling from the inside of my head outwards.

Sometimes it's all I can manage not to cry and admit defeat and just drop my head on my desk and do nothing.
And that's usually when I swallow the pills.

The roads are bumpy in Tasmania

On my last full day in Tasmania, I emerged from MONA to heat. Actual sunshine, and warmth with it. Standing on the jetty awaiting the arrival of the ferry back to Hobart, I watched the water lapping over the rocks. Again and again and again.

And my mind felt as dark as the water surrounding me.

I imagined myself putting down my handbag, taking off my trainers, removing my sunglasses, and hopping lightly over the glass barrier, plunging into the water. But the water by the jetty is rocky, so I wouldn't just plunge down into the dark, shivery depths; I would fall hard and fast against solid stone.

And I imagined for a moment: what if I did that, and my headaches went away? If I smashed myself against them, would they correct this abomination inside me? Would it die? Would it finally subside and disappear as I have dreamt of it doing countless times?

This headache is like those waves. They break over me again, and again, countless times, never ending.
And I am promised salvation by those that never deliver it. I put my faith and trust in them, and they never deliver the freedom they promise me. It's a wonder my trust isn't used up, that the well of hope hasn't dried up.

It's still full enough to provide me with tears.

On Tuesday, I went most of the day with a headache. A headache I pushed and prodded at, tried to breathe through, that made my head, and my soul, feel heavy. At 6pm I took painkillers. And by 7pm the 8/10 scale headache I had pushed through all day was down to a 3. I could engage with life again.

If I could, I would take painkillers every day. But I am on medication designed to free me from a dependence on them. Frequent painkiller self-medication can and does result in medication overuse headaches and then I'm adding another resident to the can of worms that is my head. And sometimes when I take painkillers, they only take the edge off - taking a 9 down to a 6. But I'm willing to bet anyone else's 9 is my 6 in the first place. I tolerate the pain because what the hell else can I do?

How can a person thrive when every beautiful, amazing, incredible experience is marred by a constant agony?

If a bird or animal in the wild is too ill to carry out it's everyday tasks, it dies.
And yet I live.



And yet I live and there is so much left to see. I am slightly nonplussed by the ancient rainforest and bush of Australia, having seen it a fair few times. But I live for the day I step into the wilderness and am overawed by the sheer scale and beauty this earth is capable of producing.


And yet I live and there is so much left to do. Exploring new places, learning about new cultures. There are mountains to climb, though the first is within me it seems.

Is the answer to ending this abomination inside the very organ causing me such agony? Could my brain hold the key to what is torturing it? Can the healing only come from me?

I am haunted by what was, what is, and what may be. I do not want to live a life where the moments I savour most are marred by pain, or the moments of freedom from that pain are brief, as though they never happened in the first place.

Amitrip-down memory lane

I'm back on medication for my headache.


I haven't been on prescription medication of any sort for my headache for 3 years or more. The only regular medication I was taking was painkillers, Paracetamol mainly because years of abusing Ibuprofen had led to a sort of immunity to it. I'd gone back to it recently, since sometimes all the body needs is a break.  

But that abuse of pain killers could have been the root cause of my headache. Medication overuse. My body just stopped responding to all the painkillers I was chucking down my throat. Or just stopped responding in the right way.

I have tried to go cold turkey, but it's hard. Whilst I would never classify it as an addiction, it works in a similar way. When my body notices a withdrawal, it suffers. Like a caffeine lover, not having your morning latte can give you a headache. It's a rebound headache. And it's dependence. 

And quite frankly, I really can't be depending on anyone or anything other than myself. Friends, family, medical practitioners, I can't depend on them to get rid of my headache. Not unless I can depend on myself to fight the good fight against it.  

Knowing that I could have caused one element of this headache is painful. It brings up sad, bad memories. It's hard to think that there were times that I could only cope if I took painkillers. And it crushes my soul slightly to realise that actually when I take painkillers to cope with my headache, it's the same solution.  

So, no more. I have a battle plan, and this is part of it. 

Yes I have mental issues that could be contributing to my headache.
Yes, I'm sure as hell struggling because all my muscles are knots and that causes my headache too. 

But one size does not fit all, and the painkillers I've been taking are only one size. And that size is too small for me. 

So I'm back on a medication that I first took in 2008. It's called Amitriptyline, and it's an anti-depressant. But in taking 10mg once a day, I'm actually on it to help treat chronic pain, and prevent pain that could be caused by the rebound headaches. This way - whilst maybe not the best way - I can get off painkillers and I can break that cycle.  

And it's not the easiest way either. Looking back at the hospital notes from 2008, I struggled with sedation and a dry mouth on this drug. By the end of the 6-month period, I was on 30mg a day, three times what I'm on now. And I've only been on it 9 days, and the same side effects are back. I am so tired! Often, I just feel foggy. Yesterday I felt so spaced out and sedated I had to grab a can of coke.

Not a clever move, my head said. Here, feel the consequences!!

The pain that emerged as I dredged the can of remaining caffeine-filled drops was unpleasant, obviously. But actually, I was grateful. Because if I wasn't on the meds, I wouldn't have noticed the effect coke had on my head like that. Usually my head is so rooted in pain already that it doesn't affect it in the slightest. This I would gloriously cry as I washed down all the meals of the day with it. "It makes no difference to my head!" I would shout triumphantly. 

And granted, when I cut it out for 3 months in 2006, my headache persisted, so I was pleased that my favourite fizzy drink wasn't the culprit. And neither was chocolate. Chocolate, by the way, continues to make no difference. I should know - I consumed a whole bag of Wispa bites today.  

The sedation should settle soon: it can take about 4 weeks for the side effects to settle down when you start a new medication, sometimes longer. And I have only been given a month’s supply, so I will be returning to the GP at the beginning of July to discuss where we go from here. I have really noticed a difference in the last 9 days – so much so that only 4 days in, I actually noticed that my head was bad for the whole day, when I’d only been bothered by it in the evenings.

So we shall see. I see this not as a failure. Resorting to medication to get off…medication. It just has to be done. I need to break the cycle. I need to eliminate this aspect of my headache, so I can focus on the other aspects: the tension muscular and emotional; the health physical and mental.

The biggest difference between me now, and me a year ago, my Hypnotherapist said, was my attitude. I’m taking control. I’m not a victim anymore. This headache doesn’t own me. And I’ll fight tooth and nail until I own it.

Trying to be NICE

The Chiltern Health Centre, where I have been most recently for a chiropractic consultation, and at the beginning of last year for hypnotherapy, drew my attention to a recent report from NICE, regarding medication overuse headaches. This blog, written by one of the practitioners at the clinic, talks about the report's findings and looks at it from a Chiropractic and Osteopathic perspective (the author is herself an Osteopath).

Medication Overuse headache is caused, put simply, by taking too many painkillers. This amounts to taking over the counter medicines such as aspirin, paracetamol and ibuprofen (which is an NSAID - non-steroidal anti-inflammatory drug) on more than 15 days a month, or opioids, ergots, triptans for more than 10 days a month. These latter three are anti-migraine medicines. I have in fact been prescribed with Triptans, to help fight any migraine attacks. I got a prescription of 6 tablets about 3 or 4 years ago, and am now down to my last tablet.

Taking painkillers for a headache can result in a withdrawal headache if you rely too much on the drugs to eliminate the pain. The "vicious cycle" as it so often described is accurate. My head hurts, and I want it to stop. So I take a pill. But taking the pill makes my head hurt, and because my head still hurts, I take another pill. My head still hurts. And so the cycle continues.

NICE's recommendation, according to the blog & the report, is cease taking the medication immediately, and stay off them for a month. Unfortunately, as is pointed out by the blog and many other sources, "Headache symptoms are likely to get worse in the short term before they improve and there may be associated withdrawal symptoms"

So. My head hurts. I take a pill. The pill makes my head hurt. I take another pill. Cycle.
My head hurts. I stop taking pills. My still hurts, and in fact, almost like a nicotine craving in the brain when you quit smoking, the head goes ballistic with pain because it's not getting any pills, and because you can't take any pills, the pain doesn't go away or decrease when you need or want it to. Slowly, this pain does subside, and the dependence dissipates. Eventually, hopefully, cycle broken.

I am hopelessly reliant on painkillers. It used to be ibuprofen, but more recently it is paracetamol, because (inevitably, really) ibuprofen wasn't really doing the trick. And at first, paracetamol did too. And to some extent, paracetamol still works because it often takes the edge off the worst headaches (and I now reserve painkiller usage to when I can't move without my head or face searing with pain).

The chiropractor I saw for my second opinion reminded me of these findings/recommendations, and after I saw him, I decided to give two weeks a go. I had already accidentally managed a week, so I decided to try for another week. Needless to say, this second week has not been as breezy (because my headache is self-aware and resists any attempts to remove it?) From Sunday through to Tuesday, I was in quite a lot of pain. Alcohol dulled the pain, but left me open to dehydration related agony the following day, so I kept that at a glass or two in the evening.
By Tuesday (1st Jan) I couldn't do it. I couldn't move without my head being in agony, and I couldn't get to sleep to try and make it go away. So I gave in and took a triptan tablet. This isn't strictly forbidden, from my understanding, since my dependence is on regular painkillers. And it certainly helped take most of the headache away, and I was able to actually get stuff done and be myself again. As I commented to a friend, Monday was "just one of those days that no matter what, I am my headache. There's no happiness, sadness, excitement, nothing." And that was only day two. So by day three, even though I was willing myself to be strong, I'm not made of stone, and I took a pill.

But today is the last day of two weeks without paracetamol, ibuprofen or aspirin.  Tomorrow, I'll embark on another two weeks and hopefully be able to negotiate any agony with resistance.
The end goal is freedom. If I keep that in mind, I think I'll be able to do it.

But I reserve the right to have a duvet day if I feel like my head is expanding from the inside out.

A World of Pain

I am writing this blog from a dark place that I do not visit regularly, or stay in long.
But when I leave, the door to this dark place is always open. Always ready to receive me. Always happy to welcome me into its unrelenting and tortuous arms.

Because the pain that leads to this dark place never stops. It never goes away. I can never turn my back on it, because it is always there. It is such a part of me that I think the only way it will end, is when I do.

I'm stronger than I used to be about it. I am able to write this blog. I have been able to work, and commute home from work, and when I got in I fed the cats. I have been able to take off my jewellery and get into my pyjamas.

But this pain systematically claws at this strength I cling to, looking for the weak spots.

And when it finds them, I end up collapsed on the kitchen floor sobbing my heart out, but afraid to move because every turn of my head results in more agony.

I heard on the radio this morning, that Nice have issued official advice for headache sufferers, which include Acupuncture for tension headaches, and not taking painkillers. My nan even cut out the article from The Telegraph for me.

This is something I already knew. Medication overuse is one of the vague reasons given to me for my 7 year itch headache. That, as well as psychological problems and anxiety about joining Sixth Form, riding too many rollercoasters in Florida, drinking Coca-Cola and eating chocolate. One of my GPs actually suggested that maybe when my parent's divorce had finally been settled, my headaches would get better.
Yes, the divorce they started LAST YEAR. 6 years into this pain.

So, for those suggesting that my Chronic Daily Tension Headache could be treated with Acupuncture, may I inform I have had 2 courses of Acupuncture, one lasting about 8 or 9 weeks when I was in Sixth Form (so right at the beginning of my headache), and another lasting months, and provided by the NHS, during my 2nd and 3rd years at university.
And oh wait, I'm not cured.

As for taking too many painkillers, that's a No Sh*t Sherlock situation. I have not been the most responsible with painkillers over my life time and they have usually been the first thing I reach for when my head hurts. I have pushed myself to resist, and today I did. for 4 hours. Until my headache got so unbearable I could barely walk straight and I thought I was going to pass out and/or vomit from the pain.
3 hours later, the headache is marginally better. I still feel hugely nauseous and faint.

Going cold turkey from painkillers is not mission impossible, but it is mission un-bloody-likely. Not when you've had 7 years of pain already and whilst you can cope with the day to day dull ache that NEVER.GOES.AWAY, the blinding nausea-inducing headaches are not going to go away unless you go to sleep then and there. And when you are trying to make a living and get on with your life, that's not going to happen.

The neurologist in The Telegraph article recommends that coming off the painkillers should be done in consultation with your GP about preventative medication.
Ohhh! Why haven't I tried that??

Oh wait yeah. Years number 3 and 4 of headache. Silly me.

So essentially, this new "official advice" proffered up today to us poor headache sufferers (of which there are 1 million of us with medication overuse headaches, and a further 1.5 million with tension headaches - so which group do I wallow with I if I have a Chronic Tension headache possibly caused by medication overuse and/or tension?) is nothing I haven't heard before.
Oh except that tension headaches are difficult to treat.

No wait, I knew that one too.

**

Do I walk around with haunted eyes?
Do you see the pain that resides
Behind them?

The stabbing, the scraping, the hot poker iron.
The hammer, or mallet, the roar like a lion
When it throbs, and it pounds, and whirls me around
The world of pain.
Welcome. We hope you enjoy your stay.

Origins

5 years and 4 months ago, August 2005, I was about to start Sixth Form. I'd done ok in my GCSE's, well enough to get into the Sixth Form at Overton Grange to do the A-Levels I wanted. I was leaving behind the friends I'd had for 5 years at my old school.

It was in this August I noticed the headaches. I've always been a headachey person, but the last time I'd noticed headaches so regularly I was 8 and it turned out I needed glasses. But this time, I went straight to the opticians and they said I was fine, that I didn't even need the glasses I had. But I continued to get the headaches.

It's been suggested that my headache is psychological - that the stress of joining a new Sixth Form created my headache, and it started to maintain itself through the muscle tension it created as a result. I can understand this theory since I do find it hard to start at new places and make friends, but Sixth Form was the best time of my life, the best two years. So any stress that I had about it dissipated quickly. Why didn't the headache go?

As my diagnosis is Chronic Daily Tension Headache of muscular contraction type, the idea that my headache started psychologically, but remains because of muscle tension is logical, but can't be the whole story. This is where the theories of the consultants come in. My headache specialist nurse and I agreed that it is likely my headache started as a mixture of tension and medication overuse.

Medication overuse is a headache triggered by too many painkillers. Painkillers are designed to turn off the pain switch in your brain, which is switched on when you are in pain. Except, when you take too many painkillers, the your brain, and the pain switch, sort of build up an immunity, and the pain switch doesn't switch off, it just stays on. So, having been someone that relied on painkillers, they stopped working, and my headache never went away.
If my headache was just caused by medication overuse, at the beginning I could possibly have gotten rid of it by going cold turkey from painkillers, that's usually the cure. But I didn't know this until 3 years down the line, and at that point I went cold turkey but nothing happened. By that point, my headache was caused by the muscle tension I still have today.

Without knowing for sure what my headache was caused by, it's been hard to get effective treatment. I had 2 MRI scans incase the headache was caused by something in my brain (the second one was requested because my 2nd consultant thought I had an enlarged pituitary gland. I didn't. I do however, have a cyst in my brain, which is apparently normal... I should probably get that checked out again soon...) I also had blood tests to rule out anything else that could be causing it.

I treat my muscle tension the best I can, but I don't get regular massage and heat rub and heated pillow don't go far enough. My own personal theory is that if I had a whole series of massages in one week, to finally get my body unknotted, then I could start again, and treat my body better in order to be sure it won't get knotted up again.


But sometimes, not knowing what to do, because of not knowing what it is, is the hardest...