Hello all-
I wanted to introduce myself. I posted here years ago, but I couldnt remember my username or any info so I am new again. I have suffered from episodic clusters since I was a teenager. When I first found you, I felt like I had arrived home from a foreign land. I am a 44 year old woman, mother of 3 teens.
There wasnt internet when I was a teen- and if there was, we were too poor to know about it. I went through many drs and many ER trips and even accusations of being a drug addict looking for a fix before I was diagnosed. One doctor even told the nurse he was writing the script for a placebo- thinking I didnt know what that word meant.
I remember crying when the neuro diagnosed my clusters and knew what I was going through. That he actually believed me.
A couple decades of cluster cycles on the left side, I had a stroke and they miraculously stopped. Its been five years. I thought I was home free. So much so that when the first stabbing pain started in my right eye- I didnt recognize it. Warning shot is how I refer to it. I am in full cycle now, have been for about four weeks. They happen every day. They were hitting me in my sleep, but now they are coming mid-afternoon. Each one lasts about thirty minutes, with lingering...brain fog...for about an hour afterwards. I have had a tingling feeling at the top right area of my scalp for about six weeks- that in itself is making me crazy. That is pretty constant. I am a supervisor of two departments in the veterinary field- I actually was conducting an interview when I felt the beginning pings of a cluster coming on. Fastest interview I ever conducted, and Im sure the tech thinks Im insane. Droopy eye and all.

Im allergic to Imitrex, and morphine. I went to my neuro yesterday and he prescribed topomax and cambia powder and some nasal spray. I cant recall the name. He promised it would work better than oxygen and imitrex. My pharmacist had to order it. I had false hope yesterday, but today I am not surprised, because nothing ever works. I questioned the doc because he has my daughter on topomax (and many other meds) for her epilepsy- and he said it will help me too. When I told my fourteen year old, she laughed and said all it will do is keep me from sleeping. I wish the doctor would have given me a script for oxygen. (however- I do have access to oxygen at work, if I happen to get hit while there).
That about sums it up. I think I covered everything. Thats me. Thank you for being here- I wish there was a way to let every cluster sufferer know that there are other people out there that understand.