Jennygriffbc

Hello All, My name is Jennifer. I am one of the few woman that is unlucky enough to suffer from cluster headaches. I am a lifetime migraine sufferer. They started to be manageable with imitrex and then IT happened. The worst pain of my life. I don't have to describe to any of you how I thought I was dying. I quickly realized this is not a migraine this is a whole other level. I had my husband rush me to the hospital thinking I had a tumor or aneurism for sure. I was scared really really how are my boys going to live without me scared. At Stonybrook hospital they put me on oxygen which helped a bit. They did a cat scan and mri within the next two weeks and deemed it cluster. They put me on Verapamil and sent me on my way. It did not help me at all. I didn't understand at first about the characteristics of clusters and I was not sleeping at night so I would try to nap and have more. I was a wreck having constant clusters, no sleep and just a mess. I lost ten pounds in two weeks. I found a great neurologist who tried Elevil which is an antidepressant and it made me weepy because I am the opposite of a depressed person. I am happy and optimistic by nature. Boy have cluster headaches tested that theory lately though. I went three years cluster free. I was thinking that this horror was behind me until I moved to Florida. I cycled in for over a month had three weeks off, got a sinus infection and cycled back in. During that time I have tried topomax, propranonol (probably not spelled correctly), verapamil again, steroid shots (which made me have temporary hair loss) and botox.. Other than having a wrinkle free forehead nothing has worked. The Topomax did actually work but it made me feel really weird. I don't like not feeling like myself. It appears that you are all doing some sort of oxygen treatment. It looks like I should look into that. I have tried oxygen in regular doses and it doesn't really help. Have any of you had any luck with a hyperbaric chamber? My new neurologist uses one. Speaking of my new neurologist., (my last one was a real jerk,) he does seem to think outside of the box which I love. He just gave me a litacaine treatment with a catheter up my nostril. Unfortunately tilting my head back made my left aka bad side hurt more. He does think outside the box and I do appreciate that though. Please let me know what drugs do work. I have never tried prednisone or cluster. He is starting me on Zomig I think next. I have to say that I am happy this message board is available. People have no idea what we go through at night and then we wake up, pull ourselves together and put a smile on our faces. I feel like I am being tortured what I call the night stalker. I am fine all day most days and as soon as I go to sleep I wake up in hell. I have been taking imitrex and melatonin every night to sleep for months and I know I cant keep going on this way. I am the sickest feeling healthy person I know. I can't even think about touching alcohol. I look at all of those carefree people at the tiki bars sipping their cocktails and enjoying life and think why can't I just feel normal. I sure used to. Jennifer