It has been so long since I posted that original request for comments that I confess I’d forgotten that I’d done it (Hi Ssssue!). When I first saw these recent responses in my inbox, I didn’t realise that it was my first post that had started the thread off. I’m still here though and it’s interesting to read the recent posts. So … here’s an update:
After 5 years since that first post and nothing very conclusive to link MS and cluster headache, I’m still none the wiser about that specific issue (although thanks to those of you have responded). I’ve been very fortunate that my MS has not developed to the point that it has become anything other than the very occasional inconvenience. I’m just celebrating (?) 20 years since my diagnosis and at the age of 62 I still lead a full and active life.
But I still get bouts of cluster headache. They are usually about 3 years apart and I guess I’m probably due another one some time quite soon. I have no way of describing the pain other than to say that it is truly, I mean truly, hideous.
It took three episodes before I found out what they were. After that, I was fortunate to have a consultation with a locum at my GP practice who recognised the symptoms and told me what the proble was. I’d not heard of cluster headache until then. I was put onto Verapamil in increasing doses of up to 4 per day, with Naproxen and Dihydrocodeine for pain-killing, neither of which worked fast enough to be of much use. Typically 2, 3 or 4 attacks daily (almost all of them waking me in the night, sometimes just an hour apart) and I’d get up, get dressed and walk for 45 minutes in agony, often on the streets, holding my head, nose and eyes streaming, until it was over for an hour or two. I had a circuit around my local area and I’m surprised I was never picked up for my weird behaviour.
But the last but one attack coincided with my GP prescribing oxygen treatment. That completely revolutionised the control of my condition. Last time, I knew as soon as they started again to get straight onto my GP. The oxygen kills the pain in minutes. Two cylinders are delivered so that there’s a spare available when the first one runs out and needs replacing. As I understand it, a company in each region has the agency for supplying oxygen specifically for cluster headache. In my area it’s British Oxygen and (somewhere) I have the contact details for when I need them again.
Although I’m still working full time and away from home during the day, the attacks are almost always at night, so I can slip into the spare room, put on the mask and start inhaling oxygen. I know that when the next bout starts I’ll have 2 or 3 ghastly nights but as soon as I have the oxygen again, I’ll be able to manage it … unless I happen to be away on holiday (that did happen once and was awful).
Still nothing more to add re possible links between MS and cluster headache but I have the comfort of knowing that there’s a way of coping with the headaches. So if you’re reading this and haven’t come across it, speak to your GP about oxygen and get everything set up and ready for your next bout.
By the way: I learned very early that alcohol is completely out of the question during a bout. But you’ll almost certainly know that! Good luck with both conditions.
Neil