Hi everyone

I’m Joanne, a computer programmer, I’m 26 and I suffer with Cluster Headaches.
I am currently clawing my way through my third cycle, the others were five and three years ago.

This cycle has been much more severe then the last two and think I understand a little more about my condition now.

I am currently on week 5 of this cycle. I am generally much worse at night time, where the excurutionating attacks wake me. More recently, I have been having attacks in the day and a horrible dull tension pain inbetween – what my neurologist calls a “back ground headache”

I’m not sure if it’s to do with the fact that I am female, but I do not tend to “pace” unless it is a 9 or 10 scale attack. I tend to scrunch up in a ball and sort of withdraw into myself, not bearing to be touched etc… but when the pain gets really bad… I get aggressive. I really thrash out. This is horrifying to me because I haven’t usually got an aggressive bone in my body.

This weekend just gone, I was having an attack that was so severe that my bf called 999. I was in hospital for three days. The general doctors insisted on giving me oral codeine, and paracetomol which I know for a fact would be useless but it was extremely frustrating and difficult getting anyone to listen to me. I’m shocked how little most doctors understand stand about Cluster Headaches. It took them a long time to get me to a Neurologist and only when they did they saw that I was right – only IV painkillers were going to help me during an attack. For the rest of my hospital visit I have been in a IV morphine fog. Not nice, but better then the brain twisting pain.

Also during my visit I have an MRI Scan (came back normal), blood tests (normal) and a lumberpuncture (again, normal). Diagnosis: Cluster Headaches with Some Migraine Features. No idea to underlying cause.

I am now at home. I am surrounded by oxygen bottles, which I use at 15 l/m  during an attack. Since leaving hospital they have prescribed me 25mg Topiramate (going up to 50mg in 7 days), 25mg Amitriptyline as preventative drugs. During an attack I use 6mg injectactable Sumatriptan. I was using nasal but I am trying this method instead. I have handed the Sumatriptan over to my bf to give to me as I fear I may overdose in desperation as I can only have two doses a day. I find it frustrating that doctors will only provide it in such little doses (4 injections at a time)

Before my hospitalisation I was on a course of Prednisone but it didn’t work for me. In fact coming off the drug (slowly) seemed to aggravate my attacks.

I am also taking Ibuprofen regularly to try and ease the background headache.

Has anyone ever taken Amitriptyline and Topiramate? Did it work? If so how long did it take to start working it’s magic?

I have been in bed all day today and been asleep throughout. I just feel so weak. I’m not sure if it’s a drug side effect or if I have a bug from the hospital. Even walking it a very difficult task. I’m lucky that my my bf is amazing and is looking after me very well but I want my heath back… my normality… to go back to work!

I’m scared that the cycle will never end and it will change to chronic. That I will never have quality of life back. This terrifies me so much

So that’s my intro…*rubs temple*….nice to meet you all

Joanne x

That Trex trick sound horrific! 

I get my bf to inject me normally so not sure he would be up for messing around with the dose.

My o2 is a non rebreatheable - it even says FOR CLUSTER HEADACHES on the website

J x