Everything posted by lrosenb
lrosenb replied to jchange79's topic in General BoardI had no luck at all with Verapimil OR oxygen. In fact the oxygen, for me, provoked cluster attacks. I tried every known "cure"-- including magic mushrooms. I am quite sure that what caused my headaches was taking an anti-depressant drug called Welbutrin XL. Even after I stopped the Wellbutrin, and the headaches diminished (from 10-12 attacks a day to one or two), they nonetheless continued for almost a full year until quite by accident I discovered a cure-- for me-- which was the anti-depressant celexa. I took it because I was depressed. The side effect was that within two weeks I had no more headaches and have been, thank G-d, without them for the past two years. However I will never forget the agony and the hell of those attacks. Never. Ever. So all I can say is, keep looking for solutions. For me, controlling what I ate, easting tiny portions, avoiding all perfumes and perfumed products, and doing a lot of exercise kept me alive and to some degree kept the attacks less frequent and severe. Staying away from cell phones and laptops also helped. The ONLY drug that addressed the pain was zomig nasal spray. 20 minutes & the pain was erased. And unfortunately the spray DID make the attacks more frequent. Klonopin helped occasionally. You might give it a try and see if it helps you. Good luck to you and don't give up hope.
Hi everyone. First, what a relief to find this forum. Even if it hurts to stay on computer (for me somehow it does.) I wrote a blog (mostly, when not writhing in agony, I'm a writer) about cluster headaches, calling for new names. Neither "cluster" nor "headache" seems to come close to what we feel. So please go read the blog and add your suggestions-- maybe someone out there is listening. I'm tired of feeling embarrassed when people ask why I've lost 40 pounds & look like hell and I answer with "cluster headaches." I'm a word person, I want a name that suggests what this really is, and how it feels. Go to http://lizrosenberg.wordpress.com/wp-admin/post.php?action=edit&post=31 the blog is called A Worry a Day at wordpress and is easy to find. Look forward to your voices, your suggestions, and no doubt, your sense of humor. When it hurts this much, you've got to laugh or die. Thanks, guys, for being there. Maybe some doctors will actually listen to us and we can find a better word to describe this condition. I think it should sound like Crucio! or something to make people shiver.