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You do what you have to do. The short acting seems to work better for many. I do the D3 myself, but the first time I tried it, I was unsuccessful. The next try, it worked. I suspect that is because I stayed on it year round that time, rather than trying to load up before cycle or during one.

https://m.facebook.com/story.php?story_fbid=574070690152948 It is wonderful to read Tom has finally found relief.

They have not caused those problems for me. I was able to nap during the day for several years prior to it becoming a trigger. It did not extend or worsen my cycle, but gave me an extra hour of sleep every 24 hours. The two the I got from 6am to 8am were not sufficient to keep me going for long. After they became a trigger, I weighed the cost and decided based on how I felt that day. With naps, cycle was 6 months. Without naps, cycle was 6 months. ATB!

@elSchreib...OXYGEN OXYGEN OXYGEN....from a tank, not a concentrator, with a non rebreather mask/mouthpiece/demand valve at minimum 15-25+ liters per minute. an energy drink/strong caffeine downed at the first sign of a hit increases effectiveness for many. stay on for 5-10 mins post hit. decades of success for me that saved sanity (perhaps life) with NO side effects, NO rebounds, mostly quick aborts, cheaper than Imitrex, way more portable than one would think..... ....have no experience with Wim Hof breathing...certainly worth a try. some aspects kinda what i did (personally I'd combine with O2.) .... this cluster journey changed DRAMATICALLY for me when I discovered (by painful experience doing it WRONG) that using the O2 with slow, DEEP, meditative breathing, reduced my anger, agitation, angst, overheating, and excess adrenaline. all contributing to successful hit aborting. many find that a hyperventilation technique is the most successful, others breath and hold......sometimes i would combine all 3. try 'em all...point is: there is no "right way".... ...check out the D3 regimen....it's good fer ya whether you are a clusterhead or not... regards jonathan

Hi all - just wanted to post a little positivity as I feel like I’m really on top of my Clusters at the moment and wanted to pass on my success (or what we could call a success with a condition that has no cure!) 39 years old - Episodic CH since I was about 21. Really struggled through my 30s with some very long episodes and not managing the pain very well. 4 years ago today I was in the middle of a mega-bout - 3 months in and crying on the floor asking my wife to kill me. I was splitting Imigran injections to have 4 of a day, nasal sprays, 6-7 melatonin gels every night and getting through 2 big bottles of oxygen a week. I was a mess and CH had just taken over my life. Tried magic mushrooms which unfortunately was an awful experience as well. Finally went to see a CH specialist doc who turned things around for me, weaned me off the Imigran injections and sprays and put me on verapamil. His opinion is that there’s a dose for verapamil that will work for every CH patient, but of course some people can’t take a high enough dose due to health problems / blood pressure etc. Now whenever I feel a new cluster period coming on I start straight on with 560mg verapamil a day (taken in 4 doses over the day), and I’m allowed to up that to 960 if it’s not quite working. I also take 4000iu vitamin D throughout the year now as a matter of course (thanks Batch). Right now I’m nearly 3 months into this season’s bout and my days are completely pain free. At night I’m still being woken by 1 or 2 clusters, but they’re a 3 or 4 pain max and I just roll over to my oxygen, 10mins sucking on the o2 and I’m straight back to sleep. Now I always make sure to have my ammunition tucked away safely at home ready to grab whenever I feel a new season starting: 2 week big-dose Predinsolone steroid dose on a taper - these are to have while the verapamil starts to work as it can take up to 2 weeks. I think the steroids are actual magic as they work within 24 hours and give you a week pain free - you can even drink alcohol, but ideally I think people are only supposed to use once or twice a year due to long term effects. Lots of packs of verapamil stocked piled during my none-CH periods. 2 full Oxygen cylinders in the garage Fortunately I’m in the UK so verapamil prescription costs me £9 for 2 weeks worth and Oxygen tanks are just delivered for free whenever I call up and ask. Thank you NHS . It’s really empowering to feel like you’re winning the fight, and I’m sure I’ll have bad clusters again at some point, but right now I’ve got my defences all shored up and the enemy can’t get through. TLDR: - If you’ve not tried high dose (500mg +) verapamil and you’re in relatively good health, please speak to your doc about it. Remember it can take 2 weeks to feel the effects, and you’ll feel shitty, dizzy and a bit poorly for a few days. It will pass. - Oxygen is a basic necessity and every CH sufferer should have this. - Try and stay away from Sumatriptan if you can - it’s instant relief but with long time problems.

When I start typing I often feel like I am spoiling something when the vibe in the conversation has been good before I entered. I personally would recommend Verapamil to no one. I have been actively (daily) working in the online communities for 10 years now. I don't know anyone for whom verapamil would have worked for 10, there are few who can stay on it for 5 years. Even if the response stays there are cardiac problems, detectable or not detectable. I would say if you are in relatively good health and have not tried verapamil, please keep it that way. I was on 480mg almost for a decade, 720mg for years and in the end 960mg and almost 1200mg. I regret every pill of it. I too started getting relief on my cycles, especially night hits. For me it was Vitamin D I was taking alongside verapamil. But I am not this against it because of my personal experience but because I admin finnish patient community and there is nothing in patient experiences - especially in long term - that would look good for verapamil. And when high dose patients get problems it's too late. Steroids (prednisolone) are more dangerous than verapamil. They abort the first few cycles and doctors have limits on the dosages you can get as tablets. When the highest dosage steroid course does not abort a cycle anymore, usually the steroids have altered your cluster headache to hell of a lot worse it was before them. At this point some get steroids as IV. Again, not against these either based on my own experience (though I have lots) but they create nothing but tragedy if you follow same set of patients for 10 years. Oxygen, Anti-inflammatory regimen and busting are giving nothing but great results though, in long term, in our community.

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

Hi all, I registered because it might eventually benefit someone else to know what caused my CH to go into indefinite remission - at least, it's been over 25 years now since the last episode *knock on wood*. I'm a Dutch woman, and I started having these dreadful headaches when I was 22. Of course I went to see the doctor, but he apparently never heard of this, but sent me to the hospital for an x-ray and some other tests to exclude some possible causes for the pain. When nothing showed up, he concluded that it was some kind of stress-related headache. That was, of course, entirely unhelpful, as were the other visits to the doctor related to finding some relief. The first two seasonal clusters did not last very long, but after that they took off seriously, settling on a pattern of two three-month clusters, each separated by three pain-free months every year. Some clusters I had one attack per day (usually after dinner), sometimes there were two (one of which woke me around 5 am, the other around 8 pm). It's strange that I now hardly remember any individual attacks, apart from two that stood out for lasting much longer than usual - the worst of those raged on for maybe six hours, and took me 14 hours of sleep to recover from. I suppose it was more or less the usual CH pattern. Because my mother was prescribed DES when she was pregnant of me, I was tested for possible effects of that when I was 31. One of the results of that was that I was rather low on estrogen, so I was prescribed "the pill" (a regular anti conception one), had my blood tested again after that, and eventually it seemed to be OK. This happend just when a new cluster was about to take off, but - I hardly dared to believe it at first - the estrogens also seemed to have an effect on the CH. It was as if the attacks became somehow "half-hearted": they lasted shorter, and were not as bad as they used to; and after a week or two they ceased altogether. Even now, 25 years later, it still feels as if I'm tempting fate by mentioning it - but they have not returned since; apart from one "shadow" attack when I tried out a different formulation of the hormones (and quickly switched back). Some years ago it was considered better to switch to using a low-dosage estrogen patch instead of the oral medication, gently tapering off - and so far, I'm still pain free. I did a search on this forum for the keyword estrogen and found that someone reported that using estrogens had actually triggered CH - and some people reporting that testosterone helped them. It seems that hormones are complex; but it seems obvious that there is in any case some relation to CH, somewhere. I actually found out that it was CH that I had in my twenties after it stopped. I certainly hope that by now doctors can better diagnose this because there are more options available to sufferers. Wishing you all the very best and may you tame the beast! Lúthien

Writes rant about religion being like a penis. Deletes said post. Bites tongue. Whatever. Mox P.S. Please don't pray for me. No, I'm serious. Just don't.

I truly hope horses do not have this. http://www.headshakingsyndrome.com/proposed_pathways.html