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Anyone suffer from / supporting a sufferer of cluster headaches?

(5 Posts)
weebleswillwobble Thu 19-Nov-15 21:13:49

Hi, looking for some advice / support from anyone with experience of cluster headaches.

I'm in a relatively new relationship with a cluster headache sufferer (about 5 months, although we have known each other for years and I'm absolutely mad about him). He suffers from pretty extreme cluster headaches, which seem to be getting more frequent / worse. I don't really know why I'm posting, I just want to get it all down somewhere. It's probably going to be long and rambling, so I apologise in advance!

At the moment the 'headaches' (the word does not do justice to the extremity of the pain!) are being controlled with sumatriptan injections which are self administered, but leave him feeling so wiped out. During 'bad' spells (he's in the middle of one now) he might inject up to five times per day. He's on a cocktail of drugs, including verapamil, ibuprofen for the 'shadow' headaches (sort of aches and nagging between full blown headaches) and also currently trying high dose vitamin d which is reported to be helpful to some sufferers.

A few months ago do had nerve block injections in his neck which worked like a miracle - totally pain free for 5 weeks. He's hot another bout of these coming up, which I am desperately counting down the days for as things are so bad at the moment. But even paying privately, there is a pretty lengthy waiting list, so there's no guarantee he can keep himself 'covered' with these injections, plus affording them on such a regular basis is going to be problematic in the future too I think. He's also currently waiting for a gp appointment for being referred for Botox in the neck, which has similar effects as far as I have read.

In fairness, he is handling it all so we'll all things considered, but obviously it gets him so down he sometimes, understandably, feels suicidal. We can't really plan anything in advance because we have no idea how bad he'll be on any given day, although I'm perfectly happy to have lots of evenings in.

I'm finding it all so difficult. I can't voice any of this to him because he feels so guilty that we can't 'date' properly, and hates that the fact he gets so depressed is affecting me, although I do my best to reassure him that I don't care what we do, as long as I'm doing it with him I'm ok and happy. He's had so much hardship in his lifetime and is suffering so much, and yet his sense of humour is truly wicked. The sex, when he is up to it, is mind blowing, and I am completely besotted smile

It's just so isolating, and I long for us being able to do 'normal' stuff together. It's so difficult to explain to people who have no knowledge of the condition. Are there any mumsnetters suffering from, or supporting someone with CH out there? Please come and share your experiences, I would be so grateful for a sympathetic ear.

NanaNina Sat 21-Nov-15 19:53:50

My DIL's sister has had cluster headaches a couple of times. It's more common in men. She is a nurse and someone who never complains about her health and will go to work regardless of how she feels but she actually admitted that she was pressing one foot on the other to stop herself from screaming! She was prescribed sumatriptan but only made her sleepy though it did take the edge off the pain. She has had 2 episodes, with some years apart and fortunately haven't lasted too long (a couple of weeks this last time) here eye in the quarter of the head where the pain is, waters when she has an attack.

I've heard it described as the "suicide" headache! The nerve block injections sound good. The trouble is that so many people have private health insurance through their employment, there is often a long wait.

You can comfort him, re-assure him that the pain will go and give him treats!

MyBeloved Sat 21-Nov-15 21:56:32

He should ask to be referred to a neurologist. I take a prophylactic treatment which seems to be working after triptans stopped having any effect. good luck.

Enfys1649 Sun 22-Nov-15 17:26:30

www.nationalmigrainecentre.org.uk/

The National Migraine Centre is fab. Was able to refer my DS to it a few years ago when he was suffering from neck headaches & the local hospital had run out of ideas. You can self-refer and you pay whatever you can afford. If someone can't cover the costs, the Centre can assist as it's a charity with active voluntary fundraisers. It is in London but we felt that the journeys were well worthwhile - and now DS is pretty much headache-free. They know what they're doing & are very research-active.

I hope your DP has some respite soon. You both deserve it.

redannie118 Tue 24-Nov-15 19:57:45

Hi op can I just say you sound so lovely ,hope you and your darling man get to have some fun soon. Im a cluster headache sufferer but I havent had one for a year now thank god ! The pain is utterly indescribable and as another poster said they are called suicide headaches for good reason ! Does he have triggers?for me it was orgasm blush stress and intense physical exercise. I took beta blockers,wiped out caffine and sugar,learned to meditate and made sure I avoided any codine based painkillers which all helped. Continue to be lovely and calm and understanding as that really helps. Best of luck

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