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
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.
Please or to access all these features
Please
or
to access all these features
Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.
General health
Anyone suffer from / supporting a sufferer of cluster headaches?
4 replies
weebleswillwobble · 19/11/2015 21:13
OP posts:
Please create an account
To comment on this thread you need to create a Mumsnet account.