Quinton

Will any of the sessions from this conference be recorded or streamed for those who are not able to attend?

Hi everyone, just joining this forum. Excited to connect with this community and see how we can support one another. Been experiencing episodic cluster for about 8 years. When a cycle starts I take 160mg verapamil 3x per day and this has worked to end cycles in the past. Around 5 months ago, after being attack free for a few months I tried to get off of the verapamil and within a few days the attacks came back in full force. I then started verapamil again and after a few weeks the attacks ended. I continued taking it for a few months with no attacks and then tried to get off again. Again, attacks came back in full force. But this time starting the verapamil has only lessened severity, not prevented attacks. May be just psychological, but I was worrying that the verapamil was causing the problems and triggering rebound headaches. I started a 9 day prednisone taper to try to end the cycle and I stopped taking verapamil, but I am on my 4th day and attacks are getting more frequent and severe. I am not sure what to do at this point. I only have a few doses of sumatriptan injection left as I have been burning through my stockpile. Been using them to stop attacks daily. Any suggestions or insights into what is going on? And why things that have worked in the past (verapamil, prednisone taper) do not appear as effective currently? I am working on getting oxygen but waiting on insurance approval. Appreciate the help and support! Quinton