UCHL question please

[sassysez63]

Hi All

My husband has, at last been referred to The Headache Services at UCHL having suffered from CH for the last 8/9 years. Our GP referred him on 14th October and I chased yesterday to see when we should hear regarding an appointment. It appears the letter of referral has gone missing. However, my question is, under normal circumstances, how long after a referral should we expect to wait to get an appointment with someone from UCHL? Is anyone under any particular doctor there? We are at our wits end and just need help sooner rather than later. Poor man is reduced to squirming on the floor crying in front of his family as he can't stand the pain.

[Paulacg]

It is always worth telling a department that you will take a cancellation. To be honest ask when the clinics are and phone them on the day asking if they have one. It sounds truly awful for your husband and if his pain is that poorly controlled I would actually suggest taking him into A&E as they will have injectable triptans. And to be cynical, a few A&E visits will concentrate your GPS mind to get that referral sorted.

[sassysez63 in reply to Paulacg]

Thank you Paulacg. They just seem to have ramped up in the last few weeks so I will try and get him to A&E but, knowing him, he'll refuse. Our local A&E in the South East is one of the worst in the country so not completely sure they would know what they were doing. xxxx

[babs1234]

Your poor hubby. Sorry what is CH? To be honest if I was you I would ring an ambulance when he's that bad. No one should be suffering like that. It just might make them get off their backsides if they see how bad he is. Good luck

[sassysez63 in reply to babs1234]

Hi babs1234. CH is Cluster headaches - one of the most painful conditions known to man. Trouble is the 'bad part' of the headache is lasting for approximately 45 minutes and by the time the ambulance came it would be too late for them to do anything. I need a tardis where I can bundle him in and be in A&E within a nano second. I doubt if many medical staff have actually witnessed a patient having a full blown attack. It's horrific. Thanks for your concern though and have a lovely Christmas. We are keeping our fingers crossed that he gets through it without too many episodes. xx

[babs1234]

Why didn't I think of that because that's exactly what I have. I had the daith piercing 5 weeks ago and didn't have one for a full 3 weeks. I really thought I'd cracked but sadly they have started to sneak back. I won't know for a couple of weeks whether they are going to get as bad as they were but at the moment I can say they are not as bad. Some people have claimed they haven't had a migraine since having it done (months) Look into it. It might be worth a try and at the end of the day if it doesn't help all you've lost is the cost of the piercing. If I thought piercing my brain would stop the damn things, I'd go for it. Good luck, hope he gets sorted soon and happy Christmas to you both too x

[babs1234]

By the way my bad part lasts about 4/6 hours. But they don't seem as intense as your hubby's x

[sassysez63 in reply to babs1234]

I'll look them up. Thank you. Not sure I've heard of these so anything is worth a try. Fingers crossed they don't come back as badly as before. xxxxxxxxxxxxx

[SJblue]

Does your husband have home oxygen and triptan injections? The British National Formulary lists these as the first line of defence for CH so GP should already have prescribed them. I am into to my 7th year of chronic CH and, when my GP was reluctant to give me the correct medication, OUCH!UK provided great support and assistance.

[sassysez63 in reply to SJblue]

Hi Sjblue. Yes he's sitting with his oxygen mask on as I type this. He doesn't have the injections but has Zomig nasal spray. Ouch are great but there's only so much they can do. We have had a call from UCHL who say he should be seen in February. Fingers crossed eh?mxx