Cluster headaches

[crocus146]

I experienced cluster headaches about 5 years ago - it lasted for roughly 2/3 months from memory. Was referred to Neurology but by the time the appointment came through, they had disappeared.

Seems like they've come back with a vengeance for the last 2 months.

It starts every day with a pain in my right eye socket that gradually gets worse during the day. By early evening, I start to get a drilling sensation in the top right of my head that is quite painful and keeps me awake in the early hours. I've been taking a fair few ibruprofen each day which helps to a degree. Trying to reduce screen time and alcohol too. Also been referred again to Neurology.

Am hoping they will disappear again .

Had my eyes checked at Moorfields too and they look healthy.

Anyone else had this and any tips on how to cope?

Similar story here, bad stabbing migraine headaches a few years ago that just stopped before I saw the neuro.
He said then ‘they’ll come back I guarantee’ and he was right. Iirc he prescribed me propranolol or something along those lines as a preventative to take if they did come back.
Another friend who suffers badly is taking them and finds they really help.
For me I’m definitely not drinking enough water - I suddenly realised the other day that i had reduced my fluid intake inadvertently to 3 coffees and 2 glasses of juice a day! So water has definitely helped, and glasses.

Yes, drinking more water is a good idea. I probably don't drink enough of it.

I wonder what triggers the headaches. I'm usually a well person who is rarely unwell.

My husband has been prescribed securon for these and they have helped enormously

My husband has had cluster headaches since he was 21. They occurred every 2 years and lasted around 4/6 weeks. He had all tests and everything was ok, but back then 1980’s there wasn’t much in the way of treatment. He seemed to be ok at work, but as soon as he came home and relaxed his headache would start. There are much better medications now, but it’s hit and miss which ones work and some take a while to work and by then they’ve gone. My niece has them too, she is on daily medication, which helps hers, she got referred to a migraine specialist. My husband is 64 now and hasn’t had them for over 7 years. The only way he coped was to lie in dark room with head against a cold wall, he literally rolled round on the floor until they passed. Your GP should at least be starting you on one of the triptan medications which are specifically for migraine/cluster headaches.

Thanks for the comments so far.

My doctor has also prescribed me some medication which I will collect tomorrow - can't remember what he said it was.

It's so annoying - I manage to get through the day just about and then the evening is a write off!

I’ve had clusters for about 25 years now, get one cycle per year usually starting in Autumn when the seasons change. I rely on Immigran nasal sprays, this is also available as an injection but I didn’t get on so well with that. I tried Verapamil as a preventative in the past which worked quite well but you have to build up the dose slowly and gradually and my headaches were usually on the way out by then.

Other things which have helped me - no alcohol during the cycle, it’s a major trigger, also no baths (showers ok strangely but somehow submerging myself in hot water would instantly bring one on) and Red Bull for the shadows (the mix of caffeine and taurine is supposed to help).

There is a new non-invasive treatment called gammacore, some sort of hand held device which you hold against a certain place on your neck. My GP hadn’t heard of it and from what I’ve since read, it can’t be prescribed by a GP so would need a referral.

Hope that helps and you’re cluster free soon.

I don't get clusters, but my migraines are similar to yours, with the intense pain behind one eye (and ear). I take sumatriptan.

An ENT specialist could see nothing wrong, and an MRI was clear. I still suspect it's sinus related though in my case - seems to get worse with pollen/dust and perhaps also thick dairy eg Greek yoghurt.

Thanks all - very helpful to hear your suggestions and sorry to hear you are suffering too.

Is it change of season? My brother used to get them when he was late 20s/early 30s, and always at this time of the year. He had the odd one or two in spring but not like he had them in autumn. I can’t remember what medication he was one, if he was on any. He now late 40s and he hasn’t had one for a few years now.