If you know nothing about cluster headaches I hope you will lean something.
If you know me I hope you understand me more
And if nothing else, maybe you will just be glad you don't have cluster headaches.
There is a lot to share, including some funny stories, some really sad stories and some true heroes so don't expect it all in one go. If nothing else, I'm still living this roller coaster journey. If you hang on in there for the ride i will try and give you an honest insight into this devastating condition and share the good times too.
What is cluster headache?
Let me take you back to the start. Well the start of this chapter of my life anyway. I was 26 years old. A PhD student with a good degree and a masters degree. I had a wonderful relationship and amazing friends. A happy and healthy family.
Then it started, pain like I never knew existed. It had happened before, twice , and each time I was told that it was migraine. But when I described the frequency of the pain, I was told 'you can't possibly be having migraine every day.' When you hear something enough you believe it.
But this time it was worse, the pain came harder and more frequently than ever before. I started to notice that I couldn't remember things, I'd read something and have to read it again straight away. Not a great symptom for someone reading for a phd. I started missing meetings, deadlines and generally falling behind. My life was falling apart. I tried to hide it, but i couldn't do that forever.
We started having to cancel get togethers with friends and we didn't visit our family much. My girlfriend, as she was at the time was amazing, supporting me through the whole thing. She couldn't do anything, no one could but she believed me, she knew the pain was real and she knew I wasn't being lazy...it meant the world. I hope she knows that, I hope she can remember despite all that has happened since that I said thank you... I hope I said thank you... If I didn't ,then I'm saying it now.
We didn't know where to turn for help, our local GP dismissed it as migraine, but again with the caveat of 'you can't be having migraines everyday'. Hearing this again and again is soul destroying, especially when they have no alternatives for you. They look at you like you are making up the extent of the symptoms. Believe me, no hyperbole was needed.
One of the heros in my story is a doctor at my GP practice locally to my parents. A doctor who after 10 years of me being misdiagnosed and being told that the symptoms weren't what i said they were listened to me when i described them and said 'I believe you'. Doesn't sound like much does it? but no one had before, not a doctor anyway. That same day I was referred to a neurologist who I met for the 1st time 5 weeks later.
May 11th...I'll never forget the date, or the appointment. My appointment was at 8:50am and I let the hospital at 1:45. Sounds like a long time, but I left with three things; a prescription, a diagnosis and hope. He had listened to me, he had asked me questions and it all made sense, finally someone who understood the pain I was in.
Cluster headaches; doesn't sound bad does it, sounds like a lot of headache, clustered together, not great but not too bad. As much as I was glad to have a diagnosis, the name of the condition has caused me a lot of issues in the last few years. Because it sounds... well it sounds like nothing. When you read the literature, the condition used to be referred to as 'suicide headaches'. Headaches so bad that someone chooses to take their life. To me, a headache is something that you take a couple of paracetamols for, not sure that what I experience is comparable.
I once said to a friend that they used to be referred to as suicide headaches, she was a medical professional, I thought she would, understand. But she made me feel stupid, over dramatic, attention seeking and like I was making up the life shattering affect that this illness had had on our life. I was pretty quiet for the rest of our visit there and cried myself to sleep that night.I have never mentioned my illness again around her. In fact we are not friends anymore. One of the casualties of my illness.
People don't understand my illness unless they have seen me when I'm ill. Very few people have seen that mainly because i find It's embarrassing. I thrash around, I bang my head, I swear and scream, I cry. When I'm having an attack i think it's never going to end. I must have had over 10,000 cluster headaches and they have all ended, but in the middle,of each one I've thought it will never end. Irrational I know but when in the midst of all that pain thinking rationality is not my strong point!
Like most people would do, my 1st port of call was the Internet. I held my breath as I read the information I found, half scared that he had not told me everything and I would suddenly read 'terminal' somewhere in the information. But it was all there, everything I'd been experiencing. There was a long list of possible treatments and ways of coping. All I saw was hope, a life without pain. More than that, my life finally made sense! So how did I get from this first hopeful meeting to the operating room, not only in as much pain as when that May Day but also now empty, dejected, suicidal.
There have been many parts of this story that have left me empty and sometimes suicidal. I've had help, lots of help, from counsellors, doctors, family and friends. I know that the feelings were real but something has always kept me tied to life. I have enough tablets in this room right now to kill a small elephant... But I've never tried. I wanted to leave, I wanted it all to be over, but I don't think I ever lost sight of the good things in my life, even when I couldn't see them. There's a song that starts with the lyrics 'I woke up and wished that I was dead, with an aching in my head, I lay motionless in bed...and the world spins madly on.' Never have i felt more connected to a song! It's true it does spin madly on, and a lot of the time I was angry that the world was carrying on and I was missing it, but on reflection I'm glad, I'm glad that my friends rang me to say, ' I'm getting married' , ' I'm pregnant' 'I dumped him' 'I hate her!' It reminded me that their was a world out there worth fighting this bloody illness to rejoin!
