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Hi Ellen,
I am so sorry to hear you are having this repeat of your bad headaches. I have struggled with headaches through this process, but not like the ones you are having and not with facial numbness and vision issues.
I think it sounds like a good idea to get Dr. Nash's opinion. I know little about this, but a Google search just now on 'autoimmune headaches' produced many hits. Especially about a condition called 'Vasculitis' related to blood vessel inflammation. It looks like it can be treated with steroids or immune suppressants, so maybe there could be a relation to the cyclosporine taper.
I hope you can get some sleep tonight, but based on your symptoms I think if it isn't any better in the morning you should go to the emergency room at Kaiser if another doctor won't see you right away.
Kevin
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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