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Posts posted by AnitaJ

  1. 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.

  2. Hi, all.


    My husband's a cluster sufferer, diagnosed about 4 years ago. Seeing him go through this pain is heartbreaking, and I want to do whatever I can to help him. I drive him to the hospital, stay with him for days, get all of his meds, keep the oxygen tank filled, advocate for him when he's in too much pain to speak, whatever he needs.


    Do you have any tips or advice for spouses who hope to support? Even if it's just to tell me to stay out of the way, which I do frequently.


    Thanks for your support.