ClusterHubby

Hi folks, apologies for not updating this thread. Just to let you know the last few weeks have been quite difficult. No real days off from CH, just days where intensity and frequency vary. We have seen a neurologist twice now. The first occasion he conducted a nerve block which did not help at all and prescribed melatonin and steroids. The intensity of the CH only seemed to increase while on the steroids, this course has finished today. Today my wife got multiple nerve blocks and steroids into the forehead / temple / back of her head. It gave about 6 hours of relief. We also start verapamil tomorrow at 240mg and we will review in two weeks. I'm very hopeful for this but also understand that we have to start at the lower dose and work our way up. Still waiting on the oxygen but taking vitiman d. Thank you all for the kinds words and advice.

Thank you. I'm thankful that we have a lot of options to try. It's almost overwhelming. It's hard to know where to start as she needs it now. You have given us hope. On a side note after 2 hours of respite it's back in full force. It's so distressing.

Just an update, we have arrived home. Wife is feeling a lot better. We were given the nasal spray to try, the injection helped for now...the spray is for when it wears off. Importantly we have an appointment with a nurolgist on the 6th Dec and from this they can set up a treatment plan, including the oxygen. It's usually an 18 month wait on the NHS but they were able to fit us in which is great. During this appointment I will listen to the advice and I will raise the issues of vit D and verapamil. They will probably not give advice on mushrooms etc. I will update this thread as we go, a huge take away and encouragement is that so many people can survive this and live a quality life.

Hi, My wife is currently on 15lpm of oxygen and just had an injection of sumatriptan I have just arrived to the hospital (finished my shift). The combination of treatment is helping slightly. She looks to be in so much pain. The vit D regime looks interesting but also quite complicated, are there any examples of what we should be taking. The wiki article left me quite confused. What mushrooms would we need? And what are RC seeds? Thank you for your time. It's really appreciated.

Ok. I'll speak with my wife about giving the 02 a try. I'll read up on the vit D. She is in the ER at the moment waiting to be seen. The lack of awareness on this is astounding...especially amongst medical professional. What's the best outcome, just live with it and manage as best you can?

Hi all, I'll get straight to the point. My wife has just been diagnosed with chronic cluster headaches having suffered a single episode approx 6 months ago. This CH started 3 days ago and shows no sign of stopping. She is 31 years old, a mother of two boys, does not smoke / drink and has an underactive thyroid. She had suffered migraines in the past but we now understand the difference between the two. She has the bright red eye in her left side and is suffering approx 8 attacks a day. The most difficult thing for me is watching her writhe in pain and feel utterly helpless. She has been prescribed 50mg tablets of sumatriptan which help a very little. And yesterday in the hospital I believe she had sumatriptan as an injection which help a lot more. We cannot get this at home at the moment as the pharmacist told us there is a supplier issue. My wife is currently on her way down to the hospital to hopefully get another injection which I hope will help as she has ran out of the tablets this morning. She was also on oxygen yesterday which did not help much. I have picked up CBD 500mg oil which she is willing to try in vape from. Can anyone provide a starting point for help, especially within the UK with having the NHS.