CPH/TN The headache that never goes away.
Last updated: October 2011
I first started out with a headache out of nowhere. At the time I was told that I probably had a migraine and given some meds. I was told that it would go away but it never did. I was seen by a few neurologist that had no idea what was wrong with me except a migraine. I was even asked by a few Drs what kind of meds I wanted to try and what dosage I should start out with. I was treating myself by what I was learning on the internet. I finally got to see a couple of Drs that told me that I suffered from Chronic cluster headaches. They tried to treat me with many many meds. None of them worked. I was then being seen by a neurological intern and the Dr watching over him came in and changed my diagnosis. He told me that he thought that I had CPH and possible TN. They could not treat me with the normal meds for this because I have had a heart attack. They tried indomethacin but could never get me to a therapeutic level due to my heart problems. After seeing some of the best Drs in Boston for my headaches I was referred to a pain clinic in Peabody MA. They tried three nerve blocks that did work for a short time each time they did it.
Then after fighting with my insurance company I got an implant approved. It work perfect but I got an infection in the leads and I had to have an emergency surgery to have it removed. After it healed up I was then forced to fight again with the insurance company. St. Judes hospital offered to donate the implant but only if the Dr and the hospital would also donate their time and operating room. My wife called the insurance company and told them about the donation and told them that she was going to go to every news paper and news channel until everybody knew how they were treating their clients. She called every senator, congressman, and even the President many times. She finally called them and told them that I would go to the ER every day for the rest of my life and they could pay for that if they did not pay for the implant. They agreed to pay for it and I got the second one put in.
After many reprogramings it is still not working as good as the first one did. This one has migrated a little. I am going to go back to see the Dr to see if he can go back in and move it a little. It is helping my headache a little. and along with the pain meds I am able to work again. I hate living on pain meds though. At this point I am willing to try about anything to live without pain. I live in pain from many things though. I pass kidney stones all of the time, I have problems with my gallbladder and bile duct, my knees and ankles are in bad shape due to a couple of bad falls that I have taken. I have to work in an electric chair. I cannot walk for extended piriods of time or my knees give out and I fall and the pain from walking hurts for days after walking just a little bit. It kills my wife just to see me in the pain that I live in. WE have been together for 27 years and this weekend we are re-newing our wedding vows for our 25th wedding aniversary. We have two children that are now 24 and 26 years old. I just want to be able to live without pain for even one day. There is no pain in the world like a headache that will never go away. I feel for everybody that has any kind of headache.
How many medications do you take to manage your chronic migraines?