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Bejeeber last won the day on January 31

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About Bejeeber

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    : Keep-It-Weird-ville USA

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  1. That top photo with her beeyootiful smile, her favorite stuffed animal, and just the slightest bit of side eye lol is so encouraging. I only have two things to add: 1) Congrats! 2) PHEW!
  2. I had the same thought as @CHfather regarding the cluster-like HC (hemicrania continua) when you described your 24/7 symptoms @Jackie mielniczek. Even HC is unilateral though - are your headaches on one side at a time (which is a hallmark of both CH and HC)? The thing about topamax is it is a near universally reviled POS for being both ineffective and having the worst debilitating side effects (just as @kat_92 has described her experience), so since it is not helping you at all, well if it were me, I'd get off of it. Hate to say it, but if your neurologist isn't a headache specialist, you should seriously consider scooting on over to a specialist instead. Regular old non-specialist neurologists all too often don't know what to do with us.
  3. Regarding the buggy behavior with mobile posts, here's our IT response so far: can't find any official bugs about this. I'm wondering if it could be a cache issue. There's a couple ways to test this on mobile, but none easy. * If on Android, (temporarily) try posting from a different browser. * If on iOS or Android, try posting from an incognito browser. If the problem goes away, they'll need to clear the internet browser cache on their phone. This link goes over how to do it for various platforms. https://harvard.service-now.com/ithelp?id=kb_article&sys_id=e934a5cf6fc9a204a3a79b9eae3ee4bf Warning: Some of those instructions include clearing cookies, which will log you out of all sites on your phone. However, it may be a necessary evil to resolve the issue.
  4. Have been wondering about this - completely understood how stressy McNerve-Wracking it has to be, but I bet it will be a really successful procedure, and it'll be a case where we end up being really thankful for modern surgical advances. Still expecting to see springtime 2023 photos here of your pup bounding around pain free and carefree. Our Cluster Bunny is like some kind of sociopath in that way. Without reservation I'm sure I can speak for a whole gnarly load of clusterheads here when I say the same back atcha, double!
  5. As if we din't have enough beasts around here already, now this bug, and its handmaiden, Satan. Thanks for alerting - I've notified some people, hopefully something can be dun.
  6. Hi @Dmiller0326, If you've searched "lithium infusion" on this message board, I imagine it came up as blank for you as it did me. I'm unfamiliar with lithium infusions, only familiar with the old, fallen by the wayside lithium via pill for CH, which admittedly may not offer as effective results. In surveys of CH'ers the pill form hasn't scored high for effectiveness. Last I checked, many of us have tried it (I have), but you don't often find others recommending it. What is effective and much more routinely suggested you cry ?! Well that'd be this stuff that @CHfather kindly links to often: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ And real live busting, covered at the blue New Users - Please Read Here First banner/link above ^^^. If it was me, the guy who has apparently become some kind of sudden, evangelistic ketamine pusher , I'd be considering ketamine infusions before lithium infusions (but busting is working for me ATM, so I'm fortunate to not have to be considering any infusions).
  7. Ah, at first when I saw your mention of this I thought of the older nat Geo segment profiling our buddy Dan and his busting activities, but now that DD informs there's some new clusterbusters coverage in episode 3 of a Nat Geo series on LSD, I bet that's what you saw...? Your injuries from that fall sound truly horrific. I can't imagine the struggle it must have been since - it leaves me pretty much stunned, but we can directly relate to your clusters, and of course the hope is some of the non toxic yet effective treatments such as @FunTimes mentions could help bring some relief. Then there's this week's discussion of ketamine infusions for CH. I've been kind of bringing it up a lot just lately, hoping I won't regret it after results are in from more CH'ers reporting their experiences, giving us a better idea how consistently/universally effective it really may be, but here I am broaching it again, with you this time @Jusnobody, because I know it's reputed to be effective for pain in general, plus brain stuff. Just wondering if you've looked into it? Glad you have that wonderful dog - would love to see a photo of the pooch sometime.
  8. Wha?! Did not know, gotta check this out - thanks for the hedzup DD.
  9. My mom was a gerontology research professor at a prestigious university, and your quote above is the same as how she summed up her findings to me once (really).
  10. I like to think the Vit D regimen is responsible for your nice remission, but in an attempt to remain objective, and risking going overboard on a technicality, I'd also acknowledge that while typically we find our attacks returning following a prednisone taper (mine always have), occasionally prednisone treatment will put a CH'er into a sustained remission continuing after taper down, and it sounds like that could be an additional possibility in your case. I still like the D theory though.
  11. And while I ordinarily shy from anything resembling amateur diagnosis, no, your attacks don't sound like migraines to me. I would hope a female doctor wouldn't be capable of one of the worst CH medical miscues, but there is a long and terrible history of ill informed doctors who have simply seen 'female' on a patient's profile and denied a CH diagnosis.
  12. Ouch. so sorry you tangled with what seems to be the wrong neurologist! Looks like it's second opinion time to me, this next time accepting nothing less than a [bold for emphasis] headache specialist neurologist. Meantime I would set all advice received from this one such as "stop the Vit D treatment" to hard ignore. The more concerned you become about losing the Imitrex prescription, the more I'd suggest splitting your remaining doses in order to significantly conserve supply, etc. (if you're not already doing this).
  13. What!!?? The things we learn about CHfather.
  14. You really have your contingencies in a row, especially with the pre-busting, D3 loading, and that steroid taper security blanket in your back pocket. IMPRESSIVE ARSENAL. I vigorously salute this plan. I would just advise to get the shots form of Red Bull (or whatever energy drink), since those are way more convenient than the cans for travel. I've purchased such shots at the little airport stores by the gates before, but no guarantees there. Seems the only insurmountable gap is the previously discussed denial of the zomig spray you've suffered. I'd say f**k the ergotamine, but you know that's not just because it has been found ineffective by others, but also because I'm biased from my personal experience. I suppose others may opine on whether it's still of any use pursuing the O2 for after you land. My prediction is you'll have a great, CH uneventful vacay, and will be raring to go on more and more of these afterwards.
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