Hi joined this site today as I dont know who to talk to. I am a male and 65 years old. 6 years I have had clusters and am just about at the end of my tether. My clusters last for 2 months and in that time I get about 130 Cluster Headaches, attacks ranging from from 1 - 5 a day mostly at night. I have Oxygen thank god which stops the cluster headache from getting to the bad place, you will know what I mean and it normally only takes about 10 minutes. They then go away for 8 months leaving me with severe headaches every day, in the night or when I wake up in the morning or even if I take a nap in the afternoon. So the cycle is 2 months clusters then 8 months headaches and then it all repeatsand off we go again. Does anyone else get this sort of pain.
Hi Dennis,
Firstly, I'm so sorry you are suffering from cluster headaches and having such a bad time of it.
I suffer from SUNCT which never goes away and is closely related to cluster headaches, so I know what you are going through.
I had an Occipital Nerve Stimulator fitted in London at the National Hospital for Neurology and Neurosurgery back in 2012 and haven't looked back since. It has taken a while for it to become effective and I do still get the occasional severe attacks, however, I am now not on any drugs which is a major achievement considering how I was before.
They only do this op in London, so it may be worth trying to get a referral from your Neurologist - they are excellent there and obviously top in their field, so it may be worth exploring?
Hope things improve for you.
Sarah
Hi sarah thanks for taking the time to answer. Can I ask did you have to pay for your optical nerve stimulator operation. Do you get headaches other than the clusters. I have booked an appointment with a chinese acupuncture lady today I have been told that that may help. Hope so good luck with your nerve Stimulator I will look into it. Regards
Dennis
Hi Dennis,
The hospital apply for funding from your local PCT on your behalf - it's a long process and they have to make sure you have tried everything else first because it is quite expensive andy they need to be convinced that this is your last option, however, I can categorically state that is has been worth it for me.
My headaches take the form of stabbing pains each and every day and night - at best I get about 30 pains an hour at a low pain severity (2/10) and at worst 200+ pains an hour at a severe pain level (10/10), however since the ONS, whilst I still get pain, the severe times have become so much more infrequent, so much so that I am now back working and running my own business 
Just google Occpital Nerve Stimulation and there are plenty of sites which explain what it is. I think it was originally developed for migraine sufferers but they now use it for lots of different types of headaches.
I tried acupuncture too but it didn't help me - maybe you'll have more luck.
Take care,
Sarah
It sounds like you are getting a thing called wind up where the neurons are sparking very quickly causing the head aches. Have you tried a pain clinic.
Richard
In 2012 I was DX with what is called a perminent heacache ...... Neuropahy in eyes and head area.. I am not comfortable with them saying it was cased all by Diabetes. I dd fall and hit my head alot....hard, Anyway, I had a nerve stimulator put in m neck. It took me awhile to understand and get used to it but it does good though.