Guest guest Posted August 11, 2012 Report Share Posted August 11, 2012 Welcome to the group Sara, I am glad that you have been able to read and find information from others that is similar to yours and hope that by sharing it leads to information that will be helpful. I did have terrible migraines start after diagnoses and continue throughout the years. Towards the end I saw a neurologist and took Gabapentin for some time, which helped lessen the occurrence of them. Eventually I got them less and less and now haven’t had them in a couple of years. I don’t know if they were connected to my Still’s or not. Dr. Cush will be speaking at the Still’s conference this year and I think I will ask him about this manifestation of Still’s if I have the chance. I would like to take use this instance of your looking up past posts to find Harry’s and let others know that at the Yahoo’s group home page a member can visit the past posts and use key words, names, dates or subjects to find any past postings since the group started. It is a valuable tool. I hope we get to know you better Sara. Wishing you all a good day, From: jlkcsara Subject: Meningitis and Stills Hi Harry and everyone, I am new to the group and found your post while searching for others who had meningitis and encephalitis. I also had two hospitalizations- the first for viral meningitis, and two data later, I became encephalopatic and was in the neuro ICU for five days, and in the hospital for a total of 3 weeks while they tried to figure out why I still had a fever. Then they figured out it was Stills. They believe the Stills created the meningoencephalitis, and that it could continue to do so in the future. This was in April 2012. My main concern is my headaches. I have them every day. I have read all about Kirk's horrible experience, and I feel terrible for him. I did wonder if he ever had migraines prior to the Stills? (I did but they were under control-1 a quarter until the meningitis). I am wondering if Harry's Stills presents in the brain and cns as they believe mine does. I would like to learn more about his experience. .. I am seeing my rheumy for Stlls and a neuro for the headaches. They are trying some migraine preventatives to address the headaches (nortiptyline, propranolol and depakote) but so far, not much luck. As my CRP increases, so do my headaches, so I think it is a systematic problem. Does anyone have any experience with these headaches/meningitis or encephalopathy? Sara Quote Link to comment Share on other sites More sharing options...
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