I write down every attack and log them for my neurosurgeon to review so each appointment he has a log for reprogramming the neurostimulator. My next appointment is in April. Which is about 3 months of present programming.
Throughout my almost 8 year stint of Cluster Headaches and benig chronic I have never had any consistency of headaches in time of day. They have always been sporadic. As of lately most of my bad attacks are occurring between 11:30am and 1 am. Which for me is weird.
This past few weeks I been really fatigued, irritable and moody but only another person with CH can relate. I am wiped out. Sick from meds and my right arm / chest area has been very sore from the pacemaker. I have also had or felt like electric shocks in my chest. The jolts and pain is about an inch or two above my pacemaker.
I started a new log, more in depth and more detailed on when, how long,severity,my stress level,medication and comments. Since Feb 21, and today being March 4 ( 11 days), I have had 18 headaches. That includes tensions, migraines and Cluster Headaches. CH being most prominent.
These 18 headaches in 11 days is a tad less than what I normally experience before surgery. But you can not account for stress I am under as that always increases my attacks, climate, foods and other triggers. My guesstimate on average would be 4-6 attacks per day. So I guess I am getting less, but I do feel I am getting more severe ones than anything. Less with worse isn't better. I do have hope and faith in my lifetime and it maybe when I am 80 that I may one day get "a day off". I have strong faith God will help. Hope my neurosurgeon will continue his best. And despite my fatigue remain positive that there is light at the end of the tunnel.
I have not written many blogs because to be honest have felt like a bag of crap lately. To exhausted and fatigued for the gym. Too sick from my meds. And hoping spring will show up soon.
If you have CH, and or had DBS, remain positive, have faith, keep hope going. I know today I am not smiling. Tomorrow I might. I did not have brain surgery 4x to give up.