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About igdc

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  1. igdc

    Has anyone tried emgality?

    I've taken two months worth of shots. I'll let you know in a few more if it's done anything (for me). But I don't see any negative side effects thus far.
  2. I had my CH first cycle from September to January. Full-blown, debilitating attacks about five times each day (some much worse than others). I was diagnosed in mid-November, started medicines and that made a big difference. It tapered off, and I haven't had a full-blown one or series of headaches since. BUT... I am getting what my doctor says are "shadows." I can feel it starting in my jaw and moving up my face. My cheek starts drooping a bit. It is the sensation, but it's not the real thing. Like maybe 1-2 on a 10-pt scale. Then it goes away in 10-15 mins. This is maybe 0-5 times a day. Does this happen to you, too? Will this go on until my next cycle? Is this a sign that something is coming soon (or maybe the last cycle didn't really end)? I have migraines, as well, and shadows or false-starts are common. I usually don't take meds for those unless they really get started. I've never found a pattern or meaning in those. They just happen. Is it the same for CH? Thanks.
  3. igdc

    Anyone need a Zoom Chat?

    If you do this again, I might try to join. Please let us know if this becomes an option down the road. Thanks.
  4. igdc

    Prayers and positive thoughts needed..

  5. With a bit of research, EBM Medical appears to be a MLM program for healthcare providers. Here's the company explaining how selling their products to patients will up the revenue to one's practice: https://ebmmedicalacademy.com/p/building-practice-revenue1 Curing everything under the sun. And "medical foods" in the form of capsules? That's very iffy, with little science to back it up. FDA does not regulate it (just monitors) so you would be taking whatever gunk someone decides to mush into a capsule. (Note, too, that this EBM site is cash-only, no insurance... in part bc most insurance won't cover such things).
  6. igdc

    Pregnant and new CH episode

    I have no guidance, but I wanted to say congratulations... and I'm sorry that you have CH at the same time. Wishing you a safe and otherwise uneventful pregnancy!
  7. No. And non-ionizing radiation doesn't... ugh. No.
  8. igdc

    Influenza and CH

    So NO, COVID19 is NOT at all like the flu. Done... Don't even go there. But a question for those of you who've had CH longer than I: When you've had the flu, have you also had CH simultaneously? Or maybe seen CH taper off? Sometimes, when you have one illness/condition, others mysteriously subside. For example, it's not clear why, but if someone has the flu, then they're not likely to also have a cold. https://www.webmd.com/cold-and-flu/news/20191217/why-colds-and-flu-rarely-strike-at-same-time Pregnancy can make autoimmune symptoms or migraines dissipate (temporarily)... or come on full force. (Different than a virus, of course, but same general idea.) As I sit here teleworking, with asthma, and worrying about what's to come, I may be having a mild CH attack. This is the first in maybe a month. I'll watch to see how long it goes and if it comes back, but I suddenly got this vision of being on a respirator with a CH, and ugh... Like I need to expand my anxiety (or yours) at this stage. So curious if CH may be one of those things that lays off when other things are heightened. A weird flex for peace of mind, but figured I'd ask. Thanks.
  9. igdc

    Emgality and BC/BS FEP

    FEP is Federal Employee Program. BC/BC has tons of programs and this is one of the big ones. I think it's determined pgm by pgm and not across the board, but I don't know.
  10. igdc

    Emgality and BC/BS FEP

    I don't know if this is for BC/BS writ large or just FEP. But an FYI: Emgality for cluster headaches was NOT covered under this very large plan.... but last week, that changed. If you have been turned down and presented with an insane bill, they'll now cover a big chunk of it. (I am guessing here, but based on my conversations with the insurance company and the documents reviewed, I think that BC/BS approved the migraine Emgality dosage bc FDA approved that first. The CH approval from FDA came later and the insurance coverage rules just hadn't caught up yet. I was frustrated that I could get shots for migraines, but the right dosage for CH - 100mg/3x - wasn't available. Same drug, different dose, different DX, different insurance response. Again, though, that's changed. We did have to have my doc file a form with the insurance company to confirm that I needed this drug, but once that was done, they paid the majority of the cost.) I hope that might help anyone who tried and gave up...
  11. igdc

    CH and Migraines

    For those of you who also have chronic migraine, do you find that your migraines get worse and/or more frequent during a CH cycle? I seem to be tapering down from my CH cycle, and it occurred to me that I've had fewer migraines (more like my normal number) in the last month. I asked my doctor and she said that her patients with both often see an increase in the migraines during a CH cycle. While miserable for us the oh-so-lucky ones, that's kinda interesting. Curious if others here have experienced the same, and if you've seen anything that explains that. Thanks.
  12. igdc

    Lithium or Occipital nerve block

    The nerve block was very helpful for me. I had it in November and again earlier this month. I'm on other things like Verapamil, but I found that made a big difference, almost immediately. Was there a particular reason that you refused it?
  13. igdc

    Just to put it in perspective

    I have or have had so many of those... Chronic pain sucks.
  14. igdc

    For the milder of the headaches...

    Thanks for the reply. Agreed that falling off on my preventatives was really stupid. Also, do you have any formal citations for the above piece of it? Thanks.
  15. Do you take your rescue medicine (e.g., Zomig) for the milder of the cluster headaches? It's so expensive and there are so few of them in a prescription... I feel like I'm hoarding it for the really terrible attacks, but maybe there's some reason to try to kill all of them quickly? Like having one can lead to having another and another? I have a mild one now and am not sure if I should just wait through it (doable) or take the medicine so I don't trigger a new cycle. (And definitely, I need to take my verapamil. I've been lazy with the doses the last week or so due to work and holidays. Dumb of me...) Thanks. P.S. I don't have oxygen therapy. I started my first cycle - this same one - in September. We're working with a ton of different medicines with success (mostly), but I'm not on that yet...