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Jacqui

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Everything posted by Jacqui

  1. It's very late in the game but if anyone is looking for an additional person to share a room, let me know. This will be the first time I'm finally able to come. Feel free to message me or email me.
  2. I am a scuba diver. Fortunately I have not had a cluster cycle yet that coincided with a diving trip. I'm episodic and diving also didn't trigger me into a cycle.
  3. Prednisone to date has been my only effective long lasting abortive treatment, however, I have to taper very very slowly or I rebound at the 10 or 20 mg level. I've never started at a dose higher than 60 or 80 mg, and lower the dose by 10mg every five days until I get to 20mg. Then I'm tapered down by 5 mg every five days and when I get to 5mg I taper to 2.5 mg for five days and then go to every other day. Are you started at such a high dose because initial lower doses are NOT effective? I'm episodic... A 6-8 week cycle that occur anywhere from 12, 18 or 24 months apart. Since the whole point of the prednisone taper is to break the cycle long enough for a prophylactic medication to become effective, tapering too fast, especially with such a high dose, sounds like it's become counterproductive. Oxygen is successful for me but only for a few hours and then I get hit again. Imitrex is also very effective but again, the attacks just end up coming more often. I've been tried on high doses of verapamil, lithium, and many others and none effective during a year long cycle. Should I ever have another cycle like that, I will try busting. So far, the prednisone (slow) taper for my episodic clusters, has been most effective and I've had a bone density study and many other tests showing healthy normal bone density and very little arthritis in my joints. I chalk it up to good genetics in that area..
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