National Migraine Centre
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Cluster Headaches

I am 28 and have suffered from cluster headaches for around 12 years now. it took the doctors nearly 7 years to diagnose this and was a long and very painful process! I still find it extremely frustrating as not many doctors know much about the condition!

has anyone found any good doctors with knowledge in Leicester?

I currently use the sumatriptan injections but they don't always 100% work. often now I suffer more with the effect on my eye, where the pain is excruciating. I have oxygen at home which can help to ease the headache element but doesn't do anything for the eye pain - does anyone else experience this?

it really is the worst pain I've ever felt, and I don't find people can understand this pain and think its 'just a headache' until someone has actually been through it!

2 Replies

I feel like I could have written this post-I too have suffered for 12 years and completely understand the pain and frustration you are going through. It took 7 years and a trip to hell and back before I was referred to a headache clinic where I met a Dr Kernick, (google him), and he was the first person to help me and understand the disability-First he put me on steroids which aborted the attacks within the first week, then Lithium which I still take daily today as I suffer from chronic cluster headaches. He has turned things around for me -They still break through, usually every couple of years, but can usually be controlled with another course of steroids. I also take Sumatriptan when necessary but also make sure you have the correct mask on your oxygen-it has to be a re-breathable mask to work effectively-i.e. it should have a bag attached to the mask-otherwise you are not getting 100% oxygen and it won't help.

You need to insist on being referred to a specialist or a good neurologist-I would suggest contacting Dr Kernick at the Exeter headache clinic just to see if he knows of someone in your area.

I have utmost sympathy for you, be strong and don't take no for an answer from your Doctor's-I don't think they can possibly imagine the horrendous pain you are going through! Keep in touch xx


thanks for your reply!

I was referred to a neurologist and didn't get anywhere with him - in the end I paid to go private to finally get a proper diagnosis, amazing what some money can do!

thanks for your tips, I shall have a look into them!

it is so frustrating isn't it, glad its not just me going through it, makes you feel like you're going mad!

mine are often triggered by stress and hormones, it is good to finally have someone understand the pain though! x

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