Jump to content

Bejeeber

Moderators
  • Posts

    4,771
  • Joined

  • Last visited

  • Days Won

    275

Everything posted by Bejeeber

  1. It sounds to me like your your cycle could be ending - unless you started on the verap recently enough that it might have only started kicking in 10 nights ago, in which case it is hard to tell, hard to know at this point. Sorry you've been hit with this, but glad at least you got diagnosed right away - that's rare! Typical. I do wish headache specialists would practice triage (maybe that isn't taught in headache specialist school? ), but from what I've seen, most or all do not. @Cindi you may have already noticed that if you hang about here some and read through stuff such as is found at the blue New Users - Read Here First banner above, there's a good chance you could prevent altogether any next cycle that might want to come a knockin'.
  2. “I have patients in our cohort and our clinic who say they go to neurologists with all the symptoms of cluster headache, and the neurologists say that ‘you can’t have cluster headache because you’re a woman,’ “Dr Belin said. The fact that this could still be occurring to this day is just so mind bogglingly far beyond negligent.
  3. Bejeeber

    Question

    I had the same 'shadows' thought as @CHfather, since what you're describing sounds like it might fit in that box. Saying that makes me feel like I'm a 'shadow boxer'. Wow that's such a groaner of a lowest-form-of-humor pun I hope the worldwide eye rolling it unleashes doesn't trigger any CH attacks.
  4. That was the sagest of advice as usual from @CHfather - certainly lots of us have armed ourselves with various combos of the above when in cycle and hitting the road. O2 E tanks have enjoyed some real popularity as vehicle companions. In a mid-shopping scenario like that, you might drop everything and down an energy shot while beelining it to the car with Sophie, where you'd be hitting the O2 ASAP. There was one clusterhead who was a patrol officer, driving in the car all day, who for many years had an E tank outfitted with a demand valve in the trunk at all times, and the way I remember it, he was consistently able to abort every single attack that tried to rear up whenever he was on duty.
  5. "all crossable extremities" - watch out, @BoscoPiko, that's another one of your contributions I'll likely be adopting use of.
  6. Rotate - that sounds fair! Best of results to you @BoscoPiko!
  7. When I have shadows, they often tend to be the same 'ol right behind the eyeball routine, same as real CH hit, but mild in comparison. With those there can be a fine and tricky line whether to consider them shadows or mild attacks though, right? For me, if they last more than 3-4 hours I feel I can legit label them as shadows. Now Im getting a lil' worried, because what you're describing would be warning signs for a cycle wanting to rear up for me. Hopefully different for you, but I'd sure be trying to find a way to prioritize a bust. Granted that sounds tuff trying to sleep through RC with the whole Abby situation, but maybe we can take a vote here whether you hubby could be asked to hold down the Abby fort one night while you luxuriate in the spacious regular bed with some RC. I vote yes. Not sure who might despise that scenario more though, poor Abby or the poor hub.
  8. I too find these to be differences worth noting - enough that next time you go to stock up on energy drinks, you may wish to consider energy shots instead - I eventually ended up switching to the shots for the conveniency, efficiency etc. after many successes with Red Bull (probably 16 oz size cans) as my O2 helper. Wow, that is sensitive! Weirdly and inexplicably, CHers can typically go right back to sleep after aborting a wake up attack with O2/caffeine.
  9. Red Bull is known to work well, yes - many, many have used it, and at least at first it was the most widely used for helping to abort CH attacks.
  10. Woops, forgot: 3) GOOD GIRL, Abby!
  11. 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!
  12. 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.
  13. 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.
  14. 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!
  15. 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.
  16. 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).
  17. 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.
  18. Wha?! Did not know, gotta check this out - thanks for the hedzup DD.
  19. 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).
  20. 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.
  21. 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.
  22. 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).
  23. What!!?? The things we learn about CHfather.
  24. 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.
  25. As someone who somehow hasn't had any bad experiences with countless injected doses of imitrex, I still agree with Jon'n Bosco, whom I may now refer to collectively as JoBo. Same regarding this: I do thank my lucky stars I was able to find my way to this community/forum and embed here before FB groups were a thing.
×
×
  • Create New...