I have had ECH since around 1990 but was only diagnosed when I was 30 in 2005. I get bouts once every 18 months and they last for six weeks and my headaches last around 4 hours and the pain feels like I'm being cracked over the temple with a scaffolding pole but where the pain at the point of impact lasts for those 4 hours. I get them every day or twice a day during the middle of the six week bout. This is a well established pattern. I avoid sexual activity, milk, gluten and alcohol during the six weeks. I am not sure if the milk and gluten have any effect but I know the other two definitely do.
For people with similar patterns does anybody relate to the need to stop taking sumatriptan injections for one attack out of three or four and just sit through a headache? Or am I being unnecessarily masochistic? I don't have access to high flow oxygen and am in the middle of a bout now. I just want to know whether, besides the maximum dose, whether there is any reason to not take an injection when an attack comes.
Login to add comments
The only reason I can see for not having an injection would be if you had already had 2 injections in the last 24 hours, or you were getting unacceptable side effects.
Can I ask why you do not have oxygen?
Sounds like you have a similar situation to me Craig, but all I can say is get some oxygen. It took a long time before my GP finally caved and gave me oxygen but it was worth every minute I spent trying to get it.
Just because my GP has refused and I haven't fought it. I'm not sure why they won't just try and help but it was hard enough getting my script for injections up to six, but I think I need to keep educating them.
Thanks Scott, I'll phone them in the morning.
You need to persist with your GP about the oxygen, in the doctors prescribing bible the BNF (British National Formulary) it states the first line of abortive treatment for Cluster Headaches is Sumatriptan Injections and then oxygen! There is a clinically completed HOOF (Home Oxygen Order Form) on this website under downloads that you can print off and take to your GP. The only reason your GP cannot do this is if you live in Scotland and then it does have to be a Neuro who orders oxygen.