No more Prednisone

[Charles Curry]

Ten years ago I was diagnosed with CH. After learning of this, I sought on line information about my condition and it was enlightening to to learn about these mysterious head aches that seemingly came and went, throughout my life. My aha moment was an event I recalled. I was in my last year of a four year stint of my Coast Guard enlistment. My Grandmother and Grand Father drove from Detroit, Mi. to Sault Ste Marie to visit. We went on the Toonerville Trolley river boat excursion on the Tehquamenon river. An outing that I would have thoroughly enjoyed if it wasn't for the three hour blistering headache I suffered. I was twenty two at the time. Later in life, I identified my pattern.  I remembered a couple rules. My headaches would be over by the time the NHL playoffs began( mid April). Now I know that my C Headaches mostly occur during February and March and last for about fifty days. The days are getting longer (Biological Clock). Except for two events that occurred in Late November into December. Days are getting longer (Biological Clock). Why did my pattern flip flop to fall? Every fall, my fishing buddies get together to Fish for Steelhead Trout in Northern Mi. I tend to drink alcohol during fish camp. I tend to drink heavily during that week. It seems like the heavy drinking may have triggered the Clusters to occur rather than waiting until spring? Throughout my life I have went through spurts of heavy drinking. Now that I am 56 years old, I do not drink what some would consider often. I still drink. Once every two to three weeks. When I do, I tend to over do it, usually eight beers. I am working on eliminating these events as I believe it will help in the severity of the headaches. Anyone out there quit drinking and notice any change? My last event happened last February (2017). A Neurologist prescribed Verapamil. I later learned here at cluster busters that the dosage prescribed was not a strong enough dosage. I was also given the Prednisone that I was accustomed to taking just in case. But after some great advice I became discouraged and weened myself off the Pred. five days in. I implemented the D3 regimen already into my pattern. I was starting it late. It seemed to help. Last years headache cycle had only five days of three hour headaches, which wasn't bad. Most of my days consisted of three fifteen minute headaches. I will implement the D3 regimen beginning in November of 2018 in anticipation of my February 2019 cykle. I'm going with oxygen this time. I'm finally in a position with my employment that I can utilize some of my 1100 hours of sick leave bank. I'm close enough to retirement now that it makes sense to use some of that leave to get through the cycle.Not bragging, just relieved. I won't have to struggle working while suffering through a cykle like I have done so many times before. Remission occurred for me while I played Ice hockey. During my thirties I went through a period of time (before diagnoses) that I didn't notice the headaches. I played Ice hockey in a men"s senior league, skating vigorously two to four times a week depending on my practice. Though I did taste blood in my mouth a handful of times. I had the MRI. I'm fine. My final point, I can tough out the pain having experienced this so many times in the past, knowing that when the cycle ends I'll be fine. I was once a heavy Pot smoker but stopped that around the age of twenty six. I used acid, mescaline and other drugs during my reckless youth. Wish I never did, but I did. I was able to clean up my act and continue on a path of self improvement. I hope that sharing this here, may help others. Try to stay away from the Prednisone, if you can. Rock          

[CHfather]

Thank you for this, Charles.  You don't say when your reckless youth of recreational drug use took place, but I guess you know the founding story of this site, the guy who realized that he hadn't had CH attacks while he was regularly using something -- psilo or acid, I don't recall -- and figured out that whatever he was taking was an effective treatment for CH.  My only suggestion is that you stay on the D3 regimen continually instead of restarting it in November, because you want to get your D level up to a stable high level, which is easier to do over time.  You can get your D level checked (standard blood panel) to make sure it doesn't get higher than you want it to be, but it's highly unlikely that with 10,000IU/day that is going to happen.

[Charles Curry]

Thank you CHfather. I have read about psilo (Mushrooms) as a treatment. The last time I used any of these types of drugs would have been at the age of 21. I have smoked pot occasionally throughout my life, but I rarely do now because I do not enjoy the High. Makes me paranoid. I would not consider psilo as a away of aborting an attack. I'd rather deal with the headaches. I will do as you suggest, begin the regimen and have my vitamin D levels checked. I usually have two panels per year to check Cholesterol anyway. It makes sense that Vitamin D would factor in since we now know that daylight levels factor into this condition. Thank you very much, Charles (Rocky) Curry.