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Mjedwards409

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Mjedwards409 last won the day on May 26 2020

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  1. Thanks guys!! She's now hit a week after prednisone with no CH. She flew yesterday to Denver (high altitude) with no headaches on the plane, and no headaches overnight. I know you can never say never with these but really hoping the cycle is done.
  2. As posted in another thread, my wife started the 3rd cluster of her lifetime the first week of May. In 2014 her cluster lasted 5-6 weeks, in 2015 2 weeks, and she's currently in the 5th week since this one started. (The other two were in late June/early July, so the May cycle is a first). For the first weeks of this cycle it was consistently a single Kip 6-8 once per night, each night between 2AM and 4AM. She went on a prednisone taper the 3rd week of 30mg for 5 days, 20mg for 4 days, and 10mg for 4 days. She was CH free the first day of the prednisone, and currently she's 5 days past her
  3. Thanks all. On the note about my wife....weird night. It was her first night off of the prednisone fully. It was 30mg for 5 days, 20mg for 4 days, and 10mg for 4 days and she was completely PF the entire time so we were hoping the Verapamil and D3 were making a measurable difference since it was a relatively small pred dose. First night off she woke up at the same time with what I guess was a bad shadow, (not as piercing, probably a 5 pain level), but the shadow was on the opposite side of her head as the other headaches this cycle and lingered well into the morning. So strange. She even
  4. Thanks Freud. Yes I've done a ton of research on all of the options. (I've read all the stickies and probably gone 4-5 pages back on every section of the forum) Her first two cycles she never had more than 1-2 CH's per day, and both were less than 5 weeks. (Her latest cycle was 2015 before this one which she was able to cut to 2 weeks with the D3) She was only properly diagnosed this time around and she's trying some of the common pharma solutions. She's certainly open to the alternative therapies if this cycle proves to be longer/more stubborn than the first two. We were able to get me
  5. Supporter here for my wife who is going through her 3rd cluster. A former coworker of mine who has since retired battled CH for nearly 30 years. He's in his late 60's and has been in remission for nearly 6 years and is now living his retirement dream golfing and fishing in Florida. He started the D3 regimen back in 2014 before his fall cycle started (amongst other things) and was able to drop all of his CH meds. He was always episodic with his clusters in September and October. I called him two weeks ago to let him know that my wife was back in cycle and to get his advice on a few th
  6. Mjedwards409

    oxygen

    When I called around trying to find O2 here in Atlanta for my wife, had 4 straight providers deny her service even when we had the prescription and I offered to pay out of pocket, pick it up, etc. Multiple providers said verbatim “we don’t service people with CH, prescription or not”. On the 5th try I finally had a manager agree to provide on the basis that I paid out of pocket and I picked up from their location. The prescription stated CH so I couldn’t really hide what it was for.
  7. I’m my time floating around CH.com and joining here, it seems like there are a lot of Australian CH sufferers in proportion to some other nationalities. Am I imagining that or does anyone have any theories as to why that may be? My wife whom was just diagnosed is half Australian on her mother’s side so it was a curious observation.
  8. Thanks so much all for the supportive yet honest words. I have to remind myself to take it one day at a time, for the sake of my wife. God I hope the find a cure for these bastards someday...
  9. Quick background - my wife has CH and was officially diagnosed this time around after being told in 2014 and 2015 that they were migraines because she was a woman. Her cycle started at the beginning of May after a 4 year hiatus. Her CH are consistently 1-2 at night, generally 1, and rarely during the day. Obviously I'm well aware that these things can and do change for anyone that gets CH. That said, I am the "nervous Nelly" of our family, and I often over-research, over-analyze, and over-worry about everything. (Maybe I should try "busting" my anxiety? ). That said, I've been making
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