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new member but not really (Read 751 times)
kimr
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new member but not really
Apr 25th, 2013 at 5:28am
 
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.  Wink
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.
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wimsey1
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Re: new member but not really
Reply #1 - Apr 25th, 2013 at 8:25am
 
Oh my, it seems you are still on the merry-go-round of migraine vs. cluster with you doc. Cambia is specifically proscribed for cluster headaches and can be problematic for those who have had a stroke. For you doctor to say this will work better than O2 shows a complete lack of experience and knowledge with our disease. The O2 you get at work is probably a low flow? And are you using the standard rebreather mask (the ones with the valves that allow room air in)? You need a new doctor, and you need to read all you can on this site about O2. There are other interventions here, as well. Read and read and take notes and become your own best advocate. If you have any questions do not hesitate to ask. God bless. lance
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