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  1. ShawnM


    Not yet, I sent some attack logs and other info in Friday to neuro, and hoping to hear back soon. I'd like to attempt to go back to work. I work a physically demanding job and would like to know if I'm at risk, my blood pressure has steadily been rising for a few years now and could be from the vessels being restricted in my head. Don't want to be a bug but might just have to.
  2. ShawnM


    Thanks spiny, Dr. Beuthin is a neurologist, he seems to have a good team from what I can tell. The attacks started just before I turned 15, there was a CT scan done at that time but I've been having trouble getting old records as that was in 2000 and the hospital may not have the records anymore. I don't believe the granuloma was there in 2000 but it would be nice to know. The mri/mra scan appears to show the growth larger so he sent me in for another CT to compare. I haven't heard back yet on that. I didn't know cluster could be a result of other issues, still learning so much! Great info, thanks again! Will update as results come in.
  3. Had an MRI/MRA on Tues and was "yellow flagged" for irregularities, got the CT done today, the way they are rushing really has me anxious. Anyone else finding the squished trig bundle a common effect of the attacks? Heres some notes from the doc with better explanation. From Dr. Justin Beuthin, Today's visit was primarily to discuss the most recent imaging finding. We discussed that the MRI had shown reflection of the prior right-sided cholesterol granuloma on the CT, although it is difficult to compare a CT an MRI, it does appear to have increased in size which has also put impact on the right carotid artery. There also appears to be flattening of the trigeminal bundle which we discussed may have some influence on his head pain as it is on the right side. To help clarify this particular issue I will order a CTA of the head. Also I will request a referral with Neurosurgery to discuss further monitoring and consideration for evaluation/treatment. I don't know what to make of it yet. My emotions are all over lately. On the positive side I've been skipping nights, severity, and duration are coming down. I'll take that as a win!
  4. This was my first conference and first for many things I didn't know of with this beast. I'm glad I didn't explore more of the videos available online before going because I probably wouldn't have held it together as well as I did. I cried most of the drive home and cried a whole hell of a lot more since. Truly life changing and I'm greatful to have had the opportunity to meet the community of people who have saved my life. There is so much to process it hasn't all really set in yet. I've got tools in the box now i never knew of and I know now everything is going to be ok. It was a video of Mr. Wold from 2013 that started my journey to Clusterbusters in 2018 and it just happened to be Mr. Wold who would be the first clusterhead I would look eyes and shake hands with, call it fate, I call it an honor! I love you all!
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