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Sandi Suddaby

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Everything posted by Sandi Suddaby

  1. What a beautiful piece of art. There is a lot to interpret in that. I'm sure the bids will be high for this good cause. Thank you!
  2. In Aug. 2003 (after 4 years of no CH) I was on verapamil, lithium and later the neuro added Topamax - I could barely think at 100 mg. but was advised hang in you'll adjust and I did. Gradually up to 400 mg., 300 lithium and 480 verap. And yes, I worked and actually could think...but I still had bouts of CH so it wasn't really a great preventative cocktail after all! I always used 02 also at 12-15 lpm for 10 -12 min.  I was chronic from 2003 to 2009 summer and then ended! Until this August. DANG! I had tapered off the above in Dec. 2009 and except for 2 or 3 brief times, was PF until Aug. Tried RC seeds once and got more hits than before I took them; was going on vacation so back to verap. at 180 for 5 days, then doubled it; a 6-day course of prednisone too. I was desperate to enjoy a vacation! I had a lot of CH on the trip - no fun with no 02 available (Alaska fishing the rivers on a small island). I hate to think of going back on conventionals so hope to taper off again and try RC again though it seemed I sure had some hits afterwards - unless a cycle had just started. I was hoping for a 4-year reprieve again!   Sandi
  3. Hey Eddie, congrtulations on your success. I remember you well from other conferences - couldn't make it to Portland - the first one I've missed. I am so happy for you - and you give such hope to others! Sandi
  4. I'm going to try the mouthpiece too - there is so much trigeminal pain with these CH sessions that the mask is actually painful though nicely padded. Just can't stand anything touching my right side of face when hit. Those usual 10-12 minutes at 12-15 lpm seem like an eternity. Sandi
  5. You have a lot to offer... come back often. But most of all, BE WELL! Y'all read: clusterattack.com for good information also. Sandi
  6. A terrible thing - we feel his pain and that of the family and I know our fearless leader suffers mightily when this occurs. There but for the Grace of God... I will now try LSA after giving up on conventional meds. Sandi P.S. they don't stop at age 50...
  7. You are our hero and inspiration. Thank you for all you do. Sandi
  8. If you are not reading this blog and website regularly, you should take a look and make it must-reading. Dr. Sewell is really getting good information out there. Sandi S.
  9. I clicked on the URL for the YouTube on this and a message comes up that it is no longer available due to a National Geographic copyright claim. I missed the show but will order the video. Sandi
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