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LLL

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  1. Interesting. I also, one time responded to indomethacin. Another time I did not respond, or was unable to get to a high enough dose because of an NSAID allergy I have (took massive amounts of Benadryl to do the trials). For a while I had an HC diagnosis, but current doc has me as CCH, which also fits for me. He felt that HC and CH were on a continuum of sorts. I'm planning on bringing this back up with him next appointment. Unfortunately, the matter of occipital blocks is not straight forward for me. I had an ablation done, greater occipital, third medial branch (?), and something else - I remember 3 nerves were blocked. Quite a while ago. Did not help, and seemed to make things worse. I just had a left and right occipital block that helped for a couple days but then really aggravated things. My assumption there is that after the blocking agents and maybe steroid wore off, the inflammation for the injections gets me. Don't really know. Starting the busting and batch/D3 journey. Also, going to press my doctor for oxygen. Thanks for sharing your insights and thoughts.
  2. @trjonas Thank you for your response. I'm glad you had a pathway that had clearer indications and a positive result. For me, MRI's and other scans have all been clear or "clear enough" might be more accurate because I do have various findings on my neck such as foraminal narrowing and some bulging. That said, I've always wondered about compression, and given what you passed along from your doc about no imaging being able to show the damage, I still wonder about it. I have also read studies that seemed relevant, as does your case. I've mentioned compression to many docs over the years but none really seemed to indicate it was on their radar as something they were familiar with, or not relevant for me given the other symptoms and imaging. Too much seems to be unknown about the pathophysiology and the nature of the beast... I did just have a occipital block recently, which is on the CH "treatment pathway" with my current neurology doc. It did have a bit of benefit for a couple days. I've tried the long list of meds and blocks over there years, and a long list of specialists, without much benefit. I do think the CCH is part of the picture. Is there also, nerve compression, or cervicalgia? Maybe... Hemicrania Continua has also come up in my treatment because I have very high baseline headaches in addition to attacks (and other CCH symptoms like the knot in my neck, rhino/sinus and eye swelling, etc). One odd thing that does seem uncommon is that I have a lot of nausea, as if the vagus nerve is somehow getting crosstalk or something (who knows really - that's just my imagination trying to peer inside my head :)) Maybe I'll start a new thread asking the community about nausea... All that said, I am grateful to have some new options thanks to this community. I wish I had found this sooner! For now, it seems busting and D3 are the way to go. RC seeds on the way as a quick way to start. I'll be watching for your updates as well - fingers crossed for good results for all. Thanks, L
  3. @trjonas I'm glad you were able to get some releif at last for part of your symptoms. Can I ask how you were able to tell what components of your headaches/symptoms were from the compressed nerves vs CH? I ask because I have clear cluster symptoms and a diagnosis, but also seem to have strong triggers from neck posture/position and neck motion and I have wondered about nerve compression and/or cervical component. Was there any testing or imaging that was able to confirm the diagnosis of compression of the nerves? I have had many nerve blocks over the years with some partial response but with nothing clear or repeateable. My somewhat recent CCH diagnosis (after 11 years) does seem correct for what is going on and I am getting ready to follow the guidelines clearly laid out here at clusterbusters. Like others, it is a long bumpy road. @spp-fan There is a study from the 1990 that does indicate that neck position/flexion IS a factor in cluster headaches for at least some percent of patients, more so with CCH, according to the abstract. [Nuchal features of cluster headache - PubMed]. This seems true for me and has been part of why it took so long for me to get to the cluster diagnosis. And being my first post, I do want to thank the community for all the kindness and effort that is shown across the forum. Thank you, L
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