Hi fellow CH sufferers,
I got diagnosed 8 years ago with Clusters by my neurologist, and after that bout I forgot all about them until about 1 1/2 months ago when the monster came back out of nowhere and decided to attack me again. My neurologist has moved, so I went to a local NP who had no knowledge of CH's. I told her what I had been prescribed before, Depakote and Prednisone, and Imitrex injections. Suffice to say, this has not been helping much this time. So I went to a real doctor who had some knowledge of CH's. He gave me a higher dosage of Prednisone, started me on Verapimil, and for a week (while the steroids lasted) I was mostly headache free with only a couple of very minor ones. Steroids are gone, CH's came back fierce, so doctor doesn't want to keep doing prednisone, and put me on a non-steroidal anti-inflammoratory called Toradan.... and still having CH's. I came to these boards to see what or is there was anything out there to help with the pain, because it has reached my max pain threshold twice during this last 1 1/2 months and I have come close to putting an end to it all. Insurance will only pay for Imitrex injections (2) every 9 days, leaving me 7 days of anxiety worrying about an attack without a shot at hand, I had to go the ER one night to get a shot even.
Do you think there will ever be any help out there for people like us who suffer through this pain from hell???