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Showing content with the highest reputation on 09/04/2021 in all areas

  1. Yes. It's possible for your cycle to change. Mine has changed greatly over the many years I've had CH. How CH responds to medications can and often will change. When I first started out verapamil would work very well. Over the years it's effectiveness decreased .... I second Bejeeber's suggestion on O2 usage. How you use O2 can and often does have a great deal to do with how you respond.
    3 points
  2. Hi @Hoodoo, sorry to hear of the cycle gone rogue, but yep, it appears common for CH to establish what seems like an inviolable pattern of timings for cycles and/or hits, even for ultra consistent decades on end, then suddenly out of nowhere when you least expect it, pull the old switcheroo on you. This can even go for which side you get hit on. Glad to hear it is starting to respond to the O2 and triptans again though - I too would definitely consider that a very hopeful sign. For future reference, I wouldn't be surprised if adopting the full power user O2 approach (if you haven't already) could help you still be able to abort stronger hits.
    2 points
  3. It was actually a new experimental treatment specifically for CH that I was reading about that showed promise for those willing to endure it….. If you google “Botox for cluster headache” you should find the article from “medical daily”…..tried to put link but it wouldn’t work (probably user error….LOL)
    1 point
  4. As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit. I did read recently about success with Botox for CH but not traditional Botox. Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option
    1 point
  5. ....a consult can't hurt....i'd ask their experience (success?) with CH patients....then weigh that alongside your willingness to bear the out of pocket costs. various types of nerve blocks do indeed work for some, personal belief that the skill of the practitioner at least as important as procedure itself... ..have had 2 ONB's, neither of which had any effect, but don't regret the attempt. keep in mind that the potential side effects of botox are more significant... ...never tried a SPG block...
    1 point
  6. That's ok too! Tell me I have to go to the dentist and watch the crocodile tears flow:)
    1 point
  7. Hey Cloudy, The vitamin D3 regimen has a ten year track record of proven efficacy in controlling CH and the maintenance dose costs ~ 50 cents/day. A little data on VYEPTI (eptinezumab-jjmr) your doctor may not have explained. As you can see from the naming convention used for monoclonal antibodies, VYEPTI (eptinezumab-jjmr) contains murine genes, a polite way of saying mouse genes. Take care and please keep us posted. V/R, Batch
    1 point
  8. After reading this thread I started to look for clinical trials in the UK that I might volunteer for - I contacted the Beckley Foundation as they were involved with BOL-148 trials www.beckleyfoundation.org . I got a response from them today - thgey're not currently doing any trials but said that there are two clinical trials recruiting participants for psilocybin and cluster headaches: One at the Rigshospitalet’s Neurobiology Research Institute in Copenhagen, Denmark (Contact: Gitte Moos Knudsen, +4535456720, gmk@nru.dk), and one in West Haven, Connecticut, USA (Contact: Emmanuelle Schindler, 203-932-5711 ext 4335, emmanuelle.schindler@yale.edu; or Christina Forte, 203-932-5711, ext 2526, christina.forte@yale.edu). Thought I'd pass this on in case anyone wants to volunteer Phil
    1 point
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