Hi, I have posted a couple of times on a prednisone thread, but wanted to formally introduce myself. My name is Tate and I am a 39 year old wife and mother of two crazy cute red headed twin three year old wild men. I live in New York City and have have had cluster headaches since the age of 20.
I was in college when I experienced my first cycle and went undiagnosed until 1998 when a dr in Houston finally connected the fact that my headaches were waking me up and repeating and said those words...cluster headaches. I had seen numerous drs by that point and been in countless ER's. I dont know how many cat scans, MRI's, spinal taps, I had..."tension headaches," "female related headaches," who knows what...
I had one dr tell me after trying Zomig, Amerge and Maxalt?? that it was was hopeless for me. That was a great day. I tried Imitrex pill and the nasal version, I spent my honeymoon in the room or stuck not being able to get back on the ship...countless flights banging the back of some stranger's seat, roadtrips begging my husband to drop me at the nearest emergency room, days begging my dr to just put me in a coma, as nothing provided relief. I always suffered multiple headaches both day and night. In the early years it was 3 weeks, then 6 then 8. My last cycle went 6 months.
The introduction of the imitrex injectible was a lifesaver and a curse. I could abort the headache and find relief, but the number of headaches I have without imitrex is already high, and add the shots and I am rebound and cluster crazy. I am in constant pain.
Verapamil and every other preventative I tried never worked for me.
So, when prednisone came my way and took away the headaches completely I found my escape. I found drs who would allow me to take it throughout my entire cycle. And I did. I would get one or two headaches...take the prednisone, stay on it two months and when I would taper off the cycle would be over. Cake.
Until my last cycle. We had purchased a textile mill in Italy and were living there for the summer. Chance of a lifetime sort of circumstance...we arrived and I got a headache. I took the prednisone and the headaches went away. Normally, I would never consume any alcohol during a cycle, but I was feeling fine with the steroids masking the pain and we were in such a beautiful setting....so, I drank for the entire time I was taking the prednisone. When I finished the medication I was in full raging headache cycle. The dr said the alcohol was not a factor, but I feel differently. I then tried going on a verapamil/topamax combo and back on the prednisone, but nothing worked and I continued to have the headaches at full strength and almost all the time for 4 more months. I was completely non functioning. I could not leave my bedroom. I had back to back headaches day and night. I would use the imitrex, but not for every headache because it just made things worse. It was not living. I told the dr that he made as well have told me that I was dying because that is what it felt like. I could not care for my children. As the months went on I felt certain that I was chronic and destined to a life of pain. Depression, despair, PAIN, feeling alone...awful.
Finally, miraculously....they subsided and I was released.
So, now I should get the headaches again within the next 6 months. I no longer drink alcohol at all, I have completely changed my diet (mostly for a secondary headache condition that I have) and I am changing doctors. I want to get set up with oxygen and am hopeful that it will work for me. I did try it without success in 1997, but with a regular mask, and I am hoping that with the right mask and proper instruction it will work.
Well, that's a lot of information! Is anyone still reading??
So nice to meet everyone. Wishing that all are free from this terrible pain that we know all too well.
Tate!
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