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Is there any information on times for the agenda? I'm assuming it's throughout the day, not at night? I can't take off two days from work, but I'd like to add some of the sessions to my schedule. Thanks.

Completely exhausted. If I use Zomig to abort, then that may be a part of it (as the other triptans are for my migraines). Either way, though, CH attacks make me sleepy.

How do I pay for a spot at the 2020 virtual conference? I registered back when you were asking about preferences... but I've never paid (I think?). When I try to re-register or find a payment option, it says that I'm already registered. Thanks.

@spiny, Is it really that exact, to the day? I think my first was September 26th. A migraine (for which I'm also chronic) or jaw pain following a replaced filling, I thought. I traveled for work, did alright with headaches here and there... and by the middle of October, it was full-blown terrible. Do I need to keep a calendar to map patterns for future years? And yes, it does help me to know that I have a good doctor whose treatments seemed to help... but even then, it takes time. And I suppose there's no way to know if it would work again. Ack... scary. Thanks for the replies and wishing you both well.

I just realized that fall is coming. Like air-sucked out of my chest bc a new cycle could be on the horizon. That's when my first cycle started last year (lasting about 4mos, if you don't count the one-offs that followed for a few mos). I have this sudden feeling of dread that this could begin at the end of September again. I have lots of painful ailments, but I don't tend to live in fear of the next one. (e.g., I know that I have other kidney stones w surgery in my future but meh, when it happens, it happens.) Realizing, though, that a new CH cycle could be weeks away just knocked me for a loop. How do you cope with the fear?

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.

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.

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

Sent.

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).

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!

No. And non-ionizing radiation doesn't... ugh. No.

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.

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.

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...

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.

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?

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

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.

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...

Not for me. I am completely wiped out after they subside. Just exhausted.

If you're ending a cycle, do your headaches simply stop or do they taper off? And if they taper off, do you feel them still (like the patterns of the headache/pain/shocks), but they're less intense over time until they're gone? Similarly, if a new cycle is starting, does it hit you all at once or did you experience an on-ramp in terms of incident and intensity? Thanks.

Thanks to those who replied. I take 160mg, 3x/day. (If I'm remembering that dosage correctly.) If I don't take a colace/ducolax or two each day, I get stuck with at least an hour daily of terrible stomach pain. I'm assuming it's the verapamil since most of my other medicines are ones that I've had for a while. Between the headaches and the stomach problem (plus a myriad of other things), it's fun times. I'm open to any additional ideas.

If you've had stomach issues with verapamil, what has your doctor suggested that you do/use to deal with that? And what has worked for you? Thanks.

I have searched the forums/website and googled it, too. Perhaps I'm just missing this completely: Is there a list available (here or elsewhere online) of in-person support groups for CH? If not a list, any suggestions on how to find such a group? (Perhaps I'd might start one myself? If you've done that, any tips?) Thanks!