I’ve been thinking about writing a blog for a while now but never knew where to start. I knew what I wanted to write but unsure if I should put pen to paper or write an online blog. Hand writing a diary as I once did as a teenager is fine but there is the factor of misplacing the diary or the diary being destroyed, so that idea was scraped. The stories I want to share in this blog are my own thoughts and ideas which I believe need to be shared with a wider audience other than my own private diary. I want others to know that they are not alone in this fight and hopefully learn or take relief from my own personal experiences. I don’t expect this blog to be read by many but I do hope there are others out there that can relate to what I have to share. I know I am not alone, even on my darkest days I certainly feel alone and wish nothing else but an end to this misery. I don’t want pity, I just feel an obligation to share my stories with others, so here goes…

Life’s not easy, we have all had our ups and downs and there will always be people worse off than yourself, but I’m not here to compare your pain with mine or to discuss all forms of pain and pain management. My purpose is just to share my story.

My Story

I have lived with headaches and migraines since my teenage years, that is 28 years of torment and debilitating pain when an episode strikes. Back in the teenage years I would get approximately 2-4 headaches and up to 3 migraines a month. These migraines would be hormonal migraines that would last anywhere between 2-3 days duration of my menstrual cycle or triggered by food such as chocolate and oranges especially around that time of the month. Migraines are nothing like a headache, headaches are manageable where as a migraine can cripple you for days on end, the only thing you can do is wait it out in a quiet, darkened room. It really does feel like the end of the world and if anyone else experiences these, knows exactly what I am talking about.

More recently, during the past 2 years I have been living with chronic daily headache (CDH) which can very easily evolve into migraine if I don’t manage my migraine triggers. This means that I suffer from more than 15 headaches (or days) a month. Furthermore, because these headaches last longer than 4 hours duration, these are called chronic tension-type headaches (CTTH). Similarly, they are called chronic migraine (CM) if there are over 15 migraines per month which is very easily achieved in my case. So for all of you who have had a headache, or maybe, one of the unfortunate ones who have experienced a migraine, will certainly know what it feels like. Now multiple that by 15+ per month! It’s crap in so many ways.

So, how did I get to this stage of wanting to share my story. These last 2 years have been the worse I have experienced, not knowing anything about CDH or CDM, I felt something was wrong when the headaches started to increase over 4 days and nothing I did provided any form of relief. I went to bed with a headache, suffered terribly with insomnia and woke with a headache to live through another day, it is a vicious cycle. It’s not just the pain from a migraine, there’s depression, anxiety and social isolation that join the ride. Continuously, living with a brain fog, not thinking clearly, seeing the world through hazy eyes, slurred speech or difficultly finding words, being vague, distant, these are just some of the attributes I face daily. I visit my GP, who tells me to have a Panadol, reduce stress and get some rest…headaches continue.

Over two years ago, I started taking sick days and leave to cover my illness at work. Work started to suffer, you see I worked in a lab under florescence lights all day, looking down a microscope or worked on a computer. I commuted 3 hours daily to work on a train leaving home early in the morning so I could be home early afternoon to have some sort of home life in the evening. I was a public servant working 7.5 hrs daily in the office which was easily spread up to 12 hrs per day when working in the field. I am educated in science and had been working for the Australian government for over 7.5 years.

During that first year I couldn’t blame my diet for these headaches, I ate healthy, trained with a personal trainer and felt at my own personal best. However, as the headaches became more severe and frequent my health started to slip. Exercise was becoming a strain, headaches became more frequent or severe post work out, I was cancelling more and more sessions and felt guilty that I was a burden to my trainer who had his own business. I was depriving him of money each cancelled session. Over time, I stopped exercise all together and my diet started to slip as the exercise stopped. I was heading downhill…fast.

So, after 28 years of headache complaints to multiple doctors and being told over and over again that they are stress related, I would try one last time. This new GP referred me for a CT scan and a pelvic ultrasound, both came back normal. Feeling deflated and completely frustrated, I wished something had shown in the scans so I could at least put my finger on what was causing the pain. You see, I feel guilty every time I visit a doctor, I feel like a hypochondriac making up stories for something that medicine can not explain. I wish I was. If scans don’t show anything, does that mean all my pain is in my imagination? It is difficult for people to understand migraines, it is not just the intensity of an attack, it can continue affecting the body days later. My attacks can last anywhere up to 3 days, if I’m lucky I may have a day rest before another builds.

Within the past year or so, I began a headache diary and noticed a pattern in my headaches, I found that I tended to rub the back of my neck and shoulders a lot more, especially from lunch onwards. I put this down to posture and the way I was carrying myself at the microscope so I got the Health and Safety officer to file a report on my headaches. He worked with me and identified possible ergonomic equipment and suggested physiotherapy. Headaches continued…

Meanwhile, I also found I was more frequently rubbing my eyes which felt sore all the time even after applying copious amounts of eye drops. I have always had 20/20 vision but lately my vision included a fuzzy, spotty haze especially in my right eye where most of these migraines started. I also complained about the brightness of the lab and asked to dim the lights or remove a couple of the fluorescence bulbs, this was never followed through whilst I was employed there. At this point of time I had no idea about migraine triggers, I still thought it was stress (as my GP’s told me). I got my eyes tested with an optometrist, once again no problems here, my sight was fine.

Weeks passed and headaches persisted, I was now up to 5-6 headaches/migraines per week. Taking more and more time off work, living in a dark isolated room, turning down social events and feeling utterly hopeless in what life had become. Something had to give so I made one final push with my GP asking to see a neurologist, got the referral and waited a couple of weeks for my first visit. The neurologist sent me for an MRI (yep..you guessed it…all clear) and checked my headache diary. She diagnosed the headaches as CDM and started me on prescription tablets generally used for high blood pressure and heart failure.

The following month I was identified to be made redundant at work. This unbelievably increased stress and my migraines took on a whole new level. I was required to soldier on at work and get the job done knowing all too well that my time was up in 3 months. This whole time trying to deal with a heightened level of CDM. My life was hell!

With very little changes in my headache diary I took my last prescription tablet in January 2015. I had been on them for 6 months and pumped many pills down my throat with very little relief from this treatment. Over the last couple of months I have read many forums and blogs of fellow sufferers and am coming to the realisation that my headaches and migraines are going nowhere, there seems to be no cure. Doctors and specialists have tried, they’ve had 28 years, I need to start helping myself, take ownership, and learn to understand my own triggers, symptoms and find treatment that suits my condition. It is time to find out the truth about my migraine!

To this day I have continued without strong medication, suffering with daily headaches and migraines. I have the added stress of searching for work with 5-6 headache/migraines per week even though I wonder who would employ me in this condition. I refuse to give up, I just need to find that balance.  My head hasn’t exploded yet but there have been many of times I just wish it would!

This is my story….

(to read more of my story, see tabs at top of page)

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