Cluster headaches- 6 weeks of living hell. I couldn’t cope any longer.
First things first I want to apologise for my absence. For the last 6 weeks, I have been in a small hole of hell. That may sound dramatic, and people who know me- have seen me around and about or on social media. At home, I have been dealing with another bout of cluster headaches. In fact, the worst ones I have ever had. They have been ruining my life.
A cluster headache is not like a migraine. It isn’t like any any other headache. 1% of the country have them and in essence, they are a headache which comes in clusters. Let’s start on 5th November- a Saturday where I went to the local football match with Matt. I got to the ground and bam. An attack started. A cluster attack can come on within minutes and all down the left side of my face I feel like someone has a crowbar behind my eye and is also pulling out all of my teeth. My right side is fine. Alongside this, my eye waters and droops and so does my nose.
I got home that night and injected Sumatriptan and went to bed. I thought it would be like my other attacks which can be stopped by injection and are infrequent.
Over the next few weeks, I was having at least one attack a day. I was managing with my injections but it was a huge inconvenience to life. The third week came and I was now having 1-2 attacks a day. It was horrendously painful and I wasn’t able to get injections through repeat prescription’s quick enough. They are really hard to get hold of. I booked a doctor’s appointment.
At this stage, my clusters were ruining my life. The fear of another coming and having to constantly worry. On top of this, I had shadows (a dull pain) as a constant. Trying to look after a five-year-old, have a relationship, keep on top of your housework and deal with it all was too much.
I was in so much pain and people look at you like you have gone mad. The only person who understood was my mum. I looked fine but I would suddenly be crying in pain. When I went to the doctors they tried some of the things I had researched. I ended up on the following every day;
12 steroid tablets
9 Calcium blockers
Now I felt like a huge pill head. The steroids stopped me sleeping to the point where I was struggling to function on such little sleep and I ended up with sleeping tablets as well. I sat and thought- what has my life come to. I am 29 years old not 90. Relatives were telling me that I didn’t need all the medication at my age. I didn’t want to be on it. But I had to be. There was no other option, it was the only thing that took the pain away for a few hours at a time.
The doctor told me I needed to taper my steroids down and stop taking them. I went to Devon with Matt to try and relax one weekend and forgot to take them with me. All I can tell you it was a weekend of hell. I ruined it for everyone. I had 4 clusters in 24 hours and was at my wit’s end. Matt had booked a romantic meal, which ended up with me crying across the table within 5 minutes of us being in the restaurant and leaving.
This wasn’t a life I wanted to lead. I was now 4 and a half weeks into my cluster bout. It felt never-ending. Erin was having to get used to me with an oxygen mask and I had even had to have one delivered to work. It’s not how I want people to view me, but it was the only option to carry on.
When I got home from Devon I went back onto my steroids which calmed down my clusters again.
I am writing this on 14th December and it will be 6 weeks on Saturday. Three days have passed without a cluster attack or any steroids. Praying and hoping this is the end of it because I can’t cope anymore.