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ClusterBusters

AnitaJ

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Everything posted by AnitaJ

  1. AnitaJ

    Spousal support?

    Thank you all again! I'm very interested in learning more about busting, and I hope my husband will as well. Once this cluster subsides I'll be diving into that option. CHfather, THANK YOU for the tip about splitting the injections. We did that last night and it was so helpful. I will also definitely check out the vitamin D regimen. And yes, for anyone in the DC area, we have a truly wonderful neurologist and I'm happy to share his information. My husband is lucky to have found someone who knows about clusters and is always willing to listen and assist. And I feel lucky to have found this forum! Just having support and knowing we are not alone is so helpful.
  2. AnitaJ

    Spousal support?

    Thanks to everyone for taking the time to respond and for your kind words. I truly believe that you with CH are the real heroes! You are all brave and strong, and I salute you. CHfather, thank you for your note about oxygen. After doing some more research on this site last night, I've come to the conclusion that we are NOT using oxygen as it is meant to be administered! We have a small tank with a regular mask, and after all I've read, it appears that it's working as a band-aid on a gunshot wound. Luckily, my husband was able to get an appointment with his very caring neurologist this morning. I printed out some of the resources from this site and gave them to him to discuss with the doctor. I'm hopeful that we'll be able to procure a larger tank, a proper regulator, and the correct mask. BUT--any tips for this would be extremely helpful! I'm familiar with how to open/close a tank, but relatively clueless as to all of the other more complicated steps that are noted in the materials on this site. As far as other measures, he takes daily verapamil, has emergency sumatriptan injectors, and will drink the energy shots/drinks when he feels a cluster coming on. You are absolutely right that the hospital is NOT the best place, but when he's truly in so much pain, the only thing that seems to help is knocking him out with morphine so that he can rest until it passes. But as has been noted on this site, opiates are a temporary solution and often end up making it worse. This last hospital stay we were lucky to start a steroid taper immediately, which helped him in the short term. We are still in the middle of a cluster, however. Again, thank you for your support, and any more advice is truly appreciated.
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