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Showing content with the highest reputation on 08/08/2020 in all areas

  1. Welcome to the community Nick! Unfortunately, there aren't any answers to your questions that are set in stone! However, the Beast does morph over time......mine were just a few weeks with mostly late evening hits the first couple of cycles but by 1998 they had progressed to 20 to 26 weeks weeks with an 18 to 19 month remission period, and the vast majority of my hits were nocturnal. The good news is that you have a bonafide dx just months after your clusters prevented......7 years from onset was the average when I was dx'd in 91..mine began in 84, so I fit exactly! And, you've found us and believe me, collectively, the active members here know more about clusters and their treatment than most docs! Many excellent treatments available to you in the way of oxygen to treat individual hits in cycle, anti inflammatory vitamin D3 regimen that you can take all the time to lessen frequency and severity, and for some it even seems to prevent cycles......and other remedies you can read about in the clusterbusters files and busting stories section of the forum! Although it can vary, many of the clusterheads I've known for a long time have been dealing with the Beast for 30+ years...36 personally and I'm 73....but, like I say, you've got a leg up on us old farts with what's available to manage clusters today!! Read and ask questions! Be well! Dallas Denny
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  2. Wanted to give an update on my experience with Emgality. My insurance fully covered the prescription. I took the three 100 mg injections (300 mg) about 3 weeks ago. The good: I experienced no site injection reaction. I had been experiencing 2-4 attacks per day. Within 12 hours, I began having very faint head pain around my normal times that lasted 30 minutes or so and was very tolerable. Around once a day I feel a faint headache. For me, Emgality works and has almost totally eliminated the pain. The bad: on about day 3 my left arm had pretty strong nerve pain the radiated from my left shoulder blade to my fingertips. My stomach has been upset a lot and digestion seems affected. Nausea and fatigue for several days but not really strong nausea. By week 2 these symptoms faded a bit and I’ve had some sciatic nerve pain. All in all, I‘m experiencing quite a few side effects. For me, the side effects aren’t as bad as the beast. Since I’m episodic, I figure if I use Emgality 1 week into my cycle it might eliminate most of my worst attacks. I can still go to work (commercial/industrial electrician) with these side effects if I take it a little easy. The side effects are more than I expected, though it’s possible not all of them are from Emgality.
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