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Rose

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Everything posted by Rose

  1. Hi Mel! First of all, sorry to hear of your diagnosis. The good news is that you've come to the right place for advice. My CH started at the age of 20...and is certainly more common in males. Back then, doctors had no idea what was wrong with me! I happened across a story in our local newspaper that had a caricature of a figure with a hot dagger in his head. I did a double take, read the story, and knew that was me, a 'ClusterHead'. Been suffering 40+ years with an awesome, supportive husband, good docs, and lots of great support and advice from sites like this and CH.com. What I have found is that there is no silver bullet for the bunch of us, but individually, we find a 'cocktail' that works. I too, am in the process of retrying O2. It is challenging, as we live outside of most delivery areas. Try, try, and try again! The best of luck to you... Rose...a CH sister!
  2. Thanks Jon...didn't realize the link took me to the clusterheadaches.com website! Your advice is appreciated! Rose
  3. Spiny, read about it on this site, and am following the regimen. Had blood work yesterday to determine Vitamin D levels. You just answered another question of mine, and that is whether to take high dose Vitamin D only during cycle or every day...thanks! You guys are awesome!
  4. Good morning everyone, had a good visit with GP yesterday. (Never had luck with neurologists). I have prescription for O2 in hand! She says if it isn't everything they need to fill the scrip, we'll keep working til we get it right. Can't ask for anymore than that! Not in a cluster cycle at the moment, but could be at anytime. Trying to stay ahead of the pain! I have swore off prednisone, and am looking for something to add to my ammo. Cannot tell each of you how very much I appreciate your help...this site is truly a life saver! Thanks for your quick responses! BTW...I will be purchasing the ClusterO2 Kit from this site as soon as I have that lovely tank in hand! Have a great day...Rose
  5. Hi everyone...seeing my doctor tomorrow, and I need to know how to ask for a O2 prescription in the correct terms and amount. Not sure if she will understand how to write script. Thanks for any advice!?
  6. Thank you so much for your response. I have tried O2 and Verapamil, with no success, unfortunately. My cycles are typically 6-8 weeks. Sansert was my wander drug, it is NLA. Indeed, Prednisone is awful, but my Dr. is aware of bone issues. I do have osteopenia. I so fear the overuse of any drugs as I age especially prednisone and sumatriptan. Again, thanks. Rose
  7. Hi everyone, new to ClusterBusters...but so familiar with clusters! Prednisone has been my go to drug for years, for many reasons. It is very effective for me, once I reach the right level. In the past, it has alleviated all other aches and pains, but for some reason, this time around, it seems to be causing pain. Full disclosure, I am 62, very physical, but always have been. The more prednisone I take (highest dose 60 mg) the worse I feel. Breakthrough CH treated with sumatriptan injection (split). I have had episodal clusters since the age of 19. Appreciate any input you might have. Thanks for now, Rose
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