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...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is treating appropriately tho the vison issue sounds more migraine than CH... .....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed.... .....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV best jonathan

I wish I had answers for you Kat! It is hard with the presentation of your symptoms and such to say 'Oh yea, those are CH.' I just don't have a good answer to that one. The ramp-up at the same time of year does sound like it of course. CCH's have that occur. And some people begin with not so 'typical' CH, only to have it become more obviously CH over time. On the other hand, because there is one, you are on the Extended Release Verap. The short acting works better. As in you take it three times a day, not twice. Patients have a better response to the short acting version. Can you get your doctor to change that so that you can try it? And 320mg/day is a fairly low dose. So, you could get the short acting and go a bit higher to see if that does a better job. Just make sure that your BP is okay with a higher dose. You are taking the full D3 Regimen, right? The vitamins all work together. Have you added Benadryl? Sorry, I don't recall. Hugs!!!

Taking it twice a day means it is extended release. The regular one you take three times a day. Your script likely says 'ER' on it. Not sure why, but the old fast acting works better for us.

Yes. It took about 2 years and I had to do all the work. The lawyer didn't expect me to win and just took the fee, and the administrative court judge acted like he was doing me a favor. ... Oh I should note that this is in the U.S.

@Tom1956 welcome to the forum. Sorry to hear that. Was it difficult getting disability pension? Kat

It's hard to figure weight on YouTube comments with so many following The channel. No one in the lynch mob on social media has carried this out for 3 weeks, many have not tried at all. I too was thinking about thought processes and distraction - and also thinking something like this might have worked on me when my clusters began, before they were amplified with pharmaceuticals. I have done severe self injuring but never this sort of a "regime". I wanna hug this man anyway

....the ending about using as a prevent is definitely a "yeah right" moment... ...most of it looks like stuff I've done...tho a LOT more violently and near involuntarily.... ....what does intrigue me is the possibility that a regimented plan involves a thought process and distraction that most definitely could be helpful...the few times I was able to put my mind somewheres else were remarkably successful........it was too hard to replicate consistently

Penises are not as dangerous, are they ? " There are things known and there are things unknownand in between are The Doors " - Jim Morrison

My diagnosis from a neurologist was chronic paroxysmal hemicrania, atypical. I don't have the red eye or tearing. Indomethacin is somewhat successful in treatment, but headaches still sneak in most days. So I don't have clusters, I have chronic, cluster-type headaches, perhaps 9 days out of 10. Most headaches are fairly short in duration, around 10 minutes. But after them, my brain doesn't work well. Verapamil was tried, unsuccessfully. Mushrooms have no effect, medicinal or psychoactive. probably because I take Effexxor. I also need to take a benzo and trazodone, an SSRI, for sleep. I've tried to taper down on these meds, but it's impossible for me to do so without horrendous side effects. I'm going to try out some 100% oxygen in a can to see if that might help during the attack. Otherwise, 10 years in, I just live with them, on disability pension.