The pain got too bad
monday morning and I woke up after the night that i thought would never end. The pain was so bad i hadn’t got much sleep all night. mum wrote in her diary “you can see her holding her head and making groaning noises even when asleep”.
I woke pleading for help I couldn’t go on like this I can cope with alot of pain but this was beyond that.
I feel so so sorry for mum – she feels helpless like she cant do anything. She doesn’t realise her cuddles and just being there is all I need from her. Just like all my friends. I feel so bad that I cant do stuff with them and that we had so much planned this summer that couldn’t be done but they come over and spend time and they don’t ever say a bad word. I love them so much – they all give me strength.
sometimes though nothing can beat the security of medical staff and sometimes the pain get so so bad and this is where i was now… the pain was where I could no longer cope.
Mum called the ambulance and I ended up in margate hospital. We waited in A&E an hour before being spoken to by a dr we went through the whole story again. An attack came on and luckily the oxygen helped take the pain down a bit this time. They said they were going to admit me and get me to see the pain team in the next day. After a almost sign of relief that we were going to get some help 1/2 hour later they came and told me i was being discharged…. basically there was no bed space. They said I have an appointment in Dover for the pain team on wednesday.
I was so so concerned and that was it i was at breaking point. I couldn’t take it much longer. How could i possibly get to dover being in the pain I was in?
We were sitting outside the hospital now – we had to wait for a friend to come and pick us up as they were not even concerned with how we were going to get home with me in t he stat i was.. I thought the NHS was a caring service…. How wrong i was.
We eventually got home and the next couple of days nothing really changed.
Then the day of the Dover appointment came. It was about 1 and 1/2 hours drive from us and I was not even strong enough to be out of bed. We packed the car with pillows blankets and morphine syringes and my other pills and the oxygen and off we went. I needed two syringes on the way there but survived without a seizure.
Well what can I say I am glad we went. The dr (tim) was lovely. we spoke to him for an hour and he is the first dr to truly believe the amount of pain im going through and understand it. He was not phased by the answers I was giving him to his questions and diagnosed or sure Cluster headache. (google it, and it will say – “the most painful condition known to man” by medical definition.) I was so relieved that someone understood and took notice of what I was saying and experiencing. The verapamil was put up over the next 2 weeks and told to go up a subsequent three times with two week breaks. He also said I could go back onto my old painkillers as well as the stuff I was on now. He also said that in the future he would like to end me to a guy in London called Chong who is a renowned specialist and the top in the country on cluster headaches. He understood that it not practical I go to London now.
We celebrated with a quick stop at macdonads where I had a iced frappe coffee (i love cold coffee – its definitely my fuel) When we got home I was exhausted and the cycle of headaches and seizures continued.
My epilepsy consultant phoned us that same evening as we couldn’t go to the appointment as it was the same time as this pain specialist… he wants me to see a specialist in London too – a different one who knows about epilepsy in the regions I have mine. he is trying for an appointment ASAP – (joke as recently we have had a letter stating we are on the waiting list for the waiting list – we should receive an appointment in “several months”).
My epilepsy consultant was really happy of the cluster headache diagnosis though – it was him that first said about it however was getting no back up from my previous consultant. This dr tim who i saw over-rides them so he is really happy that is getting sorted. despite being a slow process.
Just knowing what we are fighting helps.