Like a hole in the head!
Those of you who know me will know that I get headaches. A LOT of them!
I first noticed that I was getting really bad headaches about 11 years ago. I remember sitting in a French lesson one afternoon and realising that I’d had a headache solidly for a week. A few days later it disappeared, but then within a week I had another headache, again lasting quite a few days. This continued for quite a while, and they were pretty horrific. I don’t think my parents really took it too seriously for a while, until I was nearly in tears on Christmas day because I was in so much pain, so they knew something was wrong if I was nearly crying on Christmas day. (For some context – I am a BIG kid when it comes to Christmas, I just want to open all my presents straight away, and have to restrain myself when we all take turns opening up each present. This year nearly killed me when I’d only opened 3 presents by 7pm on Christmas day!!!)
So Mum quickly shipped me off to the doctors. I was given some medication. It did nothing. So I went back to the doctors. I was given a different type of medication. It did nothing. At this point I was having to keep a ‘headache diary’, which basically consisted of writing down when my headache started, and finished. What I’d eaten/drank/done before the headache started, and the same again for when it stopped. It was tedious and there was no pattern at all I, or anyone else, could find. At this point I had a headache pretty much every day, with very little relief, and they were completely debilitating.
Eventually, in March I was referred to a neurologist. Just the thought of that scared the crap out of me. Surely having to see a neurologist meant that something serious must be wrong? So after several weeks of stewing on this I went off to the hospital with my dad. Answered a lot of questions, did a lot of tests, and was finally told that most than likely I had Chronic Daily Headaches, but they would send me for an MRI scan just to check. Chronic Daily Headaches!? I could have bloody told you that!!! I was given some new medication, which should hopefully lessen the frequency of them. They seemed to help a bit, but it wasn’t amazingly effective.
I finally had my MRI scan at the end of December, and again I was crapping myself about it! My then boyfriend told me something very true that strangely put my mind at ease. He said ‘to be fair, if you had a brain tumour, you would have already dropped down dead by now!’. The results came back, and guess what? They found nothing! No, before you all laugh, they found a normal brain, nothing that could be causing my headaches.
By the end of 6th form I’d probably missed half of my last year as, although my medication lessened the frequency of them slightly, there was still nothing that worked when I had a headache to get rid of it. My parents felt equally as annoyed and helpless when week after week I would be crying my eyes out cos I was in so much pain, not sleeping for more than a couple of hours at a time, and so keeping them awake too!!
Things went on like this for a few years. Once I finished uni, they were getting worse again so back I went to the neurologist. He changed my medication, and that was it. He said my headaches were still to frequent for him to give me a certain type of abortive medication, as the more you take it the less effect it has. My headaches still didn’t improve with this new medication.
I started work at a psychiatric hospital, and it was so good to know that one of the nurses on my ward also suffered from CDH’s, so she understood that it wasn’t just a headache, that it’s completely debilitating and the same headache can last for weeks on end. It was so good to be able to talk to someone else who went through it all as well. She suggested I tried a different type of medication that she was on, as at that time I was on the maximum dose I could take of my current meds, and it was doing nothing. So off I went to the doctors again, he tried me on the new meds, they improved things slightly, but not enough, so they were increased and increased until I was at the top dose, but they made me feel so groggy all the time that I couldn’t take them anymore. I started work at 7am, so it made getting out of bed really difficult (anyone that knows me knows that I struggle getting out of bed no matter what time of day it is!), and it just wasn’t safe for me to be groggy and sluggish when working on an intensive care unit in a psych hospital!!
So once again, my medication was changed. And stop press! It was the best I’ve taken yet, after getting to the right dose it decreased my headaches to maybe once every 2-3 weeks (and later down the line once every 3-4 weeks). Admittedly, they still lasted for a week at a time, but knowing that I would have 2-3 weeks without a headache was just bliss! And the best news was that it meant I could try to abortive medication my neurologist has mentioned. Oh. Dear. God! It was a wonder drug! I got a headache, I took what I refer to as ‘my magic pills’, and within 2 hours my headache was gone!! I’ve never had that before, I can take 2 co-codamol (the strongest one you can get), as well as 2 ibuprofen every 4 hours and it wouldn’t touch my headache, and luckily enough it also didn’t give me any of the unpleasant side effects so many people I know get on co-codamol.
So 11 years down the line, I still get headaches, they’re not as often these days as they were. I still don’t know what causes them. And as the neurologist warned, the more I take my magic pills, the less effective they get with each time. These days I can take 3-4 of them in a day and they work for a little while, but as I only get given 12 at a time, I try not to take too many, so either put up with the headache and muster on, or take some co-codamol and ibuprofen and muster on.
There doesn’t really seem to be nearly as much information on the internet about Chronic Daily Headaches as there is about Migraines or even Cluster Headaches, which is frustrating. And most people haven’t heard of them, so often just think ‘oh, you just have a headache, get over it, we all get headaches’ or ask ‘are you stressed over something’ or ‘is it a migraine?’ – no it’s just a headache, no it’s not a migraine. It’s a headache that can last for days, sometimes weeks at a time. Usually on a scale on 0-10 for the pain, I would score an average headache as at least a 6-7. It’s rare I get a 10 when I just can’t cope, throwing up with it cos the pain is so intense, can’t sleep, just cry and feel pathetic cos there’s nothing anyone can do. An 8-9 headache usually only happens maybe 3-4 times a year.
I’m dreading the day that my magic pills no longer work, I’m hoping I’ve got at least another few years of them working yet, but who knows. I’ve got friends who have CDH’s and they reckon their headaches got much better when they were pregnant (maybe I should start hinting at Chris when I next have a really bad headache and keep waking him up in the middle of the night!)
I’ve got to the point where usually I’m able to manage them quite well, and often the only way my work colleagues know I’ve got a headache is when they make me a cup of tea and I ask for no milk (dairy makes me sick when I’ve got a headache for some reason – this is only something that started about 5-6 years ago), or it’s got so bad I need to take some meds. I’m hoping one day there will be a miracle cure…or they’ll just stop…but fear I could be waiting a long time for this.
I’m sorry that I’ve wittered on about this for quite a while, but it’s unfortunately a huge part of my life!