Thank you to all who have responded to my general inquiry about doctors. We actually like the doctor we have however I wonder about options. He even suggested we get into this site to see what other clusterheads are doing.
We are into 4 years of CH Diagnosis which did not come quickly and with much pain and suffering. Finally got combination of preventative meds that seemed to work, oxygen and sumatriptan as abortives. (Cant afford imitrex) Over the last year has become what I guess is more chronic. Before that he did have breaks in the headaches for a few months at a time. "My Guy" is resistant to documenting and keeping a headache diary so it makes it difficult to look back and see a good timeline. He was given a series of IV high dose prednisone infusions in an attempt to beak a cycle about a year ago . Did not break it but did slow down occurances and intensity of headaches. This last year has been living primarily in "the shadows" (I just read that phrase over the weekend on this site....great way to describe it) Nagging, persistant, occurances 10-20 through the day and night. Pressure, drainage, congestion, little sleep and fear of escalating to a full blown attack. We are considering SPG block at our drs recommendation but it appears to me it is a very short term fix if it works at all. We have not discussed other blocks. He is on Verapamil and Topamax as preventative. Increasing confusion and memory loss with Topamax. Especially difficult the last month as dr RX Chantix for him in an attempt to stop smoking. Extreme frustration and moodiness. Now off that and we want to DC Topamax as well. Tried Topamax XR but no better. Dr just ordered Indomethacin for him as we talked about trying other meds. We discussed lithium -he's never taken. Side effects of that don't seem much better but if it will keep him out of a cycle I guess its worth a try. He says he is so tired of feeling stupid. He has a job that requires a lot of detail and hes really struggling to maintain work day to day. He takes his O2 tank to work uses it and sumatritan(1-2 a day-cuts in half) when he feels something coming on. As I have been reading the info on indomethacin I read that its use has been highly effective in treating chronic paroxysmal hemicranias. A subtype of clusters? Another diagnosis? Dr never mentioned details of why we are trying it. I assumed just another pill to try along with everything else. He has only taken 2 days worth, increasing amount over next week. I'll be anxious to see if any results.
We see doc next week . Want to try D3 and ask about some of the other remedies mentioned I read on this site over the weekend.
Busting is not a consideration at this time.
