Dan32

Great news Willy, glad to hear!

Thanks Batch, Brain On Fire and Pebbles. Ordering my D3 supplies, feeling positive about what's ahead and looking forward to being involved in this community. Underestimated how validating it has been to see others talk about their experiences and treatments. Feel like it's helped me be able to properly see this thing in the light for the first time.

@Willy I'm very new here as well so would be inclined to put other people's advice ahead of my own but wanted to chime in. I also have had nerve blocks in the past, but I also found a medication called Verapamil was really effective. It's a blood pressure med with very little side effects (constipation, can lower heart rate at high doses) and I was taking 2 x 240mg/day when I'm in my cluster period. Would still get some shadows but it has been the biggest help to me, you just need a prescription for it. Most people recommend getting the standard release, not the slow release, and I would take it for a few weeks until I felt like I'm free of cluster. It wasnt something that would abort a headache in progress, but after a few days taking it was like the inflammation got under control. As I understand it though it's not effective for all CH sufferers but the fact you'd previously had success with the nerve blocks rang true for me so wanted to throw it out there. I'm ordering what I need for Batch's D3 vitamin regimen now so I can have 2 x lines of defence.

Thanks @Pebblesthecorgi You've hit the nail on the head. This bout of cluster has shown me my illness will change and evolve and I cant pretend it's going to go away. I'm trying to be as proactive as possible and prepare for the worst while I'm not crippled by it. Looking into the D3 now and going to start collecting what I need for Busting. Thankfully have a good support structure and some experience so if I need to go down the path of Busting I should be alright. @Batch if you’ve got a current D3 guide you’d be able to post here that would be amazing, sounds like it might have changed from an older one I found. Will be following @Dana129‘s links for Australian suppliers of the vitamins. Interested by the Benadryl, hadnt come across that as a treatment. Interestingly I've been plagued by sinus issues and had a long planned septoplasty to correct a deviated septum 4 weeks ago. Got lucky in that the CH was under control and I didnt have to cancel my surgery, but wonder if the recovery around that has changed the nature of my headaches this time around.

Hi all, first off big thanks to those who frequent this forum and give advice. It’s really appreciated. Im in my late 20s and have been dealing with annual clusters for about 8 years. I’ll usually have a 4 week period where I’m getting clusters for about 2-3 times a day and then it disappears. During the cluster period verapamil, oxygen and nerve blocks mean I can usually get through with only a couple of attacks. 2 x 240mg slow release Verapamil has been the key for me and then high flow oxygen during attacks. I’ve also been getting the nerve block injection but after having recent experience where the clusters broke through anyway, I feel like it’s the Verapamil that is helping the most. I step down off the 240 x 2 dose over about 5 weeks. About 6 weeks ago my most recent cluster period started and it took longer than expected for it to get under control. Previous 2 years the verapamil and nerve block injection combo meant I would only have 1 or 2 days worth of attacks. This time around it was a week’s worth of attacks before stopping. The problem: 2 weeks ago I woke up one morning in a panic because the feeling of an incoming headache was present. But no headache ever came. Instead the pressure feeling/ghost headache has remained and doesn’t want to go away. I’ve kept doing my 240mg x 2 dose for a week and then nervously began stepping down to 2 x 180mg with no change. So now I’m about to enter my 3rd week with this persistent headache feeling like the onset of cluster and I’m getting a bit frustrated. Unfortunately I can’t get an appointment with my neurologist until October so looking to see if anyone else has had this experience? Worried this is the first sign of ongoing cluster which is a bit terrifying. Considering stepping down completely off the verapamil, giving it a few days and then jumping up to 3 x 240mg to see if that knocks it out. Thanks for the help, regardless of any suggestions it’s so nice not feeling along with all this!