I have been dealing with Clusters for about 4 years now and have viewed this site several times over the years. I created a login this week to just release a little. I started out thinking I needed a root canal due to headaches and had that done with no relief. I was then sent to a different oral surgeon who knew I had cluster headaches as soon as I walked in the door of his office. I was then sent to a neurologist who seems to be on top of his game with the newest cutting edge treatments for clusters and he set me up with a clinical trial for a stimulation implant that went into my cheek. I have been in that study for a year and a half now and it does not seem to help me.
I am on the verapamil 3x's a day, Motrin like candy when a hit comes on and sumatriptan to try to kill the pain. I have tried oxygen in the past with no luck. Ice packs and rolling around on the floor until the pain lets up. I broke my hand from hitting the floor during a bad night of headaches and did not know it till the next morning. After reading about the oxygen on this site over the last few weeks I decided to try it again. I picked up 3 tanks this past Monday and gave it a try 3 times the first day. I only got the crappy mask that came with the tanks and I could not get the high flow regulator but I figured that was better then nothing and I had the headache anyway so what the hell. It seemed to help on the first go around but knowing I needed the better mask and regulator I went on a hunt for the better tools. I ordered a regulator from amazon that will let me get the better flow rate and a recommended mask from another cluster site so I hope that with the correct setup I will have much better luck.
I am not really sure why I am posting this because I know that many more people have it much worse off then I do. I only get 2 or 3 headaches a day and 2 out of the 3 only last about an hour average. I was just wondering how to manage family? I have a wife and 3 kids that also have to live with this, how do I not put the burden on them? They are great and jump at the chance to help me when I need it but I never thought something as small as a headaches could cause so much feeling of separation. I am signing up for another trial to see if that will help me out at all but first need the o2 to work because I can not take any triptan for 2 weeks before the study starts.
Has anyone else tried any of the clinical trials with any good results? I figured I should try that route to help us all find some kind of treatment to better our lives.
That is about all I have to say, Thank you for taking the time to listen to me ramble on a little.
