drewbie

I'm in the UK, within 90mins drive of the University of Essex. I suppose it's most likely that this effect won't be widely replicated amongst CH patients, but, as others have alluded to, it seems to warrant some attention. Even if it worked for must a handful of sufferers, that would be better than nothing. I would absolutely be willing to participate in any study should one be forthcoming. To be honest, I'm keen just to get my hands on some glasses now. Seems like little to lose in giving it a go.

The place I got them from is one of the ones recommend regularly here. I just wasn't sure I should mention they were willing to ship to UK in case that implicated then in some way. They are definitely untreated, viable seeds. Thanks for mentioning, though, @jon019.

Although not directly answering the original question, I thought it would be of use to people that I can confirm I was able to obtain RC Seeds in the UK by ordering from a US based source. I ordered on 2nd July and have just received the delivery today. I do have some concerns with regards to whether the changing conditions that they would have been subjected to during international transit may have affected their potency, but it's still encouraging that I was able to get them. I guess time will tell with regards to their potency. Not sure I should mention the name of the purchase source openly as I'm not totally sure of where the law stands specifically on this stuff in the UK. But if anyone wants to know, just PM me. Cheers, Drewbie

Hi all, A pretty unusual post this! In the last six months, I've had some testing periods with CH. These experiences lead me to write a couple of songs inspired by what I've gone through. I figured it would be cathartic to share the recordings (only rough demo tracks!) with the community here. It got me wondering whether anyone knows of any professional/famous artists who have ever released songs inspired by CH?! Anyway, here are links to the two songs. I hope there's something there you can associate with - if not, that will say a lot about my song writing skills Until The Next Time - https://soundcloud.app.goo.gl/fqGAE Two Sides - https://bit.ly/3hupDYB Best wishes to you all, Drewbie

It would be very inadvisable to self prescribe increased dosage of verapamil. Only a medical professional should be doing that as there are potential cardiac side effects to verapamil that need to be carefully monitored with ECG. Certainly your dose is too low, but it's important you work with a neurologist/doctor to increase it.

With regard to whether it's safe/dangerous to overdose, I guess it's not recommended. However, I've read stories of people injecting sumatriptan more than ten times a day without it killing them. That said, I really don't think it's a good idea to consistently overdose.

If you're taking that much sumatriptan, there's a possibility you'd be creating rebounds. But that's not definitive. Also, it seems you're taking tablets - how come you're not on injections or nasal spray? Tablets are generally considered somewhat useless for CH in that they take too long to work. Finally, do you have oxygen as an alternative abortive?

I'm sorry to hear what a tough time you're going through. You didn't mention in your message anything about oxygen - do you use that as an abortive? The general consensus seems to be that oxygen should be the first line abortive, leaving Imitrex as a backup option. I believe there's plenty of evidence that using lots of Imitrex can worsen and lengthen cycles.

Interesting article: https://www.theguardian.com/lifeandstyle/2021/mar/13/it-blew-my-mind-can-psychedelic-drugs-cure-addiction-depression I guess it could very much work in favour of CHers if psilocybin does become legalised for medical use for mental health disorders. The market for mental health is obviously huge (much bigger than for CH) so anything that brings psylicobin closer to legal prescription is a good thing.

I'm pretty convinced this applies to me. The more I'm working out my brain either with stress or taxing work, the less likely it seems I am to have attacks. In fact I think my cycle started in January partly due to me having wound down over the Xmas break after an intense amount of hard work prior to the holiday period.

Hi everyone. Thanks for checking up on me @spiny, that's really kind. Latest update is that I'm fortunately feeling quite improved on the mental side. I don't feel like I'm living out a 24/7 panic attack! I think I found a reason for why I hit a really low point anxiety wise. I think I mentioned I've started up the ketogenic diet? That was mid last week, and, with the benefit of hindsight, I realise I was being clobbered pretty hard by "keto flu" on Friday and Saturday especially. At the time I'd put the way I felt physically and mentally down to anxiety. However, the fog seemed to little suddenly on Sunday and I've just felt much more chilled since - my mind's ability to catastrophise has noticeably mellowed. It's certainly not unknown for the keto adaptation process to press hard on mental health buttons. I have an appointment with my neurologist today to discuss where things are at. My CH symptoms remain fairly muted but it's obviously difficult to know whether that's because I'm reaching the end of the cycle or whether the interventions I'm making (d3 regimen, keto, melatonin, nerve block) are keeping it at bay. In a perverse way, I sort of see the benefit of having not used any preventative treatments in my first two cycles (2009, 2016) because at least I could follow the natural course of each cycle! As things currently stand, it's just really hard to know, although there is some sense building in my mind that MAYBE the beast is retreating. It's 4 weeks since this ramped up and that's historically been a rough indicator of cycle length, at least the length of period during which I'd experience full attacks. @spiny i was thinking of mentioning TGN to my neurologist. The reason being that I noticed at the beginning of this cycle that the attacks of pain could be triggered by eating - I could almost instantaneously trigger it by something cold striking my lower teeth (on the right hand side). I just think the length of time the pain lasts is not indicative of TGN. I have been massively conscious the last 4 weeks to avoid chewing any food using my right hand side teeth.

@spinythis did occur to me too. However I was wondering whether it might be the extreme shifting in exposure to sunlight and the outdoors that did it for me. From April to September, I partook in the most extensive period of working out in my life. I'd call myself a road cyclist, and last year the pandemic lockdown restrictions in the UK allowed for me to really up my game. I was out on my bike 5-6 times a week, covering pretty much 6000km outside in that time. I was averaging over 200km a week, 7-10 hours out riding. Then the clocks changed, the weather changed. And I switched to the turbo trainer in my garage. No more buckets of sunshine, and my activity levels dropped by more than 50%. So, I had been thinking that going on an obsessive binge of sunlight and exercise, only to follow it with a cold turkey removal of it, might have messed me up pretty bad.

Thanks @xxx I think I might speak to my neurologist about this. Seems like it wouldn't be a bad thing to add in quercetin, so will be interesting to see whether I could do that without having to change anything else up.

Thank you all for your kind support and advice. Anxiety is a rocky ride with good days and dreadful days. Yesterday was not a good day for me. Just got to keep fighting. We're all fighting something.

p.s. I'm in the UK and frankly wouldn't know where to begin in getting hold of something like RC seeds. I've looked it up and it's certainly not obvious, and I wouldn't know how to trust any potential source anyway.

Thank you both for your replies, it really does mean a lot to have such a supportive community to offer help and advice. To be honest, I've tried very little in some regard. I haven't really needed to go crazy with meds as my cycles of severe CH attacks have been few and far between. 2009 was first (diagnosed with eCH once cycle was basically over - lasted 4 weeks). 2016 had another cycle, 3 weeks long, with quite a few weeks of lingering pain/discomfort (shadows?). Since then, any sign of a full blown cycle, I've managed to get a nerve block within 2/3 days of suspecting it, and it's fizzled out quickly. Looking back, between 2009 and 2016, I did have varying symptoms and episodes that weren't really like the classic CH I'd presented with in 2009. I did consult more than one neuro during that time and those symptoms were always classified as migraine (i had migraine from a very young age). Took my first triptan for migraine in 2016 and was blown away how well it worked, proper miracle. But have been suspicious ever since that my discovery of triptans was followed a few months later by my second definitive CH cycle. Towards the end of that 3 week 2016 CH cycle, I was prescribed oxygen and it seemed to work well. Red Bull was also pretty reliable as it had been in 2009. I got hold of Imitrex injections (my sumatriptan usage for migraine was always tablet) too but actually didn't get round to using one specifically for a textbook CH attack as the cycle faded soon after, and the O2 was both working and seemed generally preferable given it being natural. Since that CH bout in 2016 though, I was experiencing a worsening of my "migraine" symptoms. 95% of the time hitting my left hand side, whereas my textbook cluster cycles have always been right sided. My neurologist settled on a diagnosis of chronic migraine and eCH. I tried various things for my chronic headaches - Botox, Aimovig, keto diet. I had a different neurologist suggest HC and I tried indomethacin, but didn't experience any obvious benefit. Eventually I found the best control with melatonin and candesartan. This got things under control to the extent that my pain levels were manageable 90% of the time, with only the odd more severe headache needing a triptan dose. And the preventive meds meant any severe headache would normally require a very distinct trigger (e.g. prolonged exertion). Not once can I recall a triptan failing to treat one of those headaches, so I had built up considerable confidence in my treatment protocol. The only caveat really being that my residual lower grade chronic pain has generally not been particularly responsive to triptans). Then just under 4 weeks ago I felt the telltale signs of a CH cycle. Literally to the day it coincided with the same thing last year. Difference is, last year I got the nerve block 3 days after suspecting it. This year, the pandemic scuppered things and it was 7 days. And it was during those additional 4 days that things kicked off big. It just seemed crazy compared with my prior CH experiences. The most worrying thing being the limited effectiveness of the Imitrex injections (which, by the way, have always been rapidly effective for my severe migraines, just like tablets have been), and the oxygen reattacks (very quick to abort but then recurrence of attack very soon after). Once I'd had the nerve block, though, there was an almost immediate rapid improvement. Since then (2.5 weeks), I've not really needed to use abortives other then energy shots. My fear stems from a belief that my chronic milder headaches are all actually CH (chronic shadows?). And, assuming that to be the case, would make me one biological flick of a switch away from full blown cCH. And that's what I fear right now is happening. I'm resigned to a belief that this current cycle will never end, that this is the new normal. I've convinced myself that my baseline has now changed. That's the crux of my situation. Sorry to dump it all out here. It's somehow cathartic just to share it, irrespective of whether anyone actually replies!

Hi everyone, The regulars around here will no doubt have seen me pop up a few times recently - thanks for being such a supportive community. I've shared in other posts more about the specifics of my diagnosis, symptoms and history in other posts. Truth be told, I've never come to terms with being a CHer and I've suffered pretty crippling anxiety a few times in the past during active cycles. At the moment, I've reached possibly my lowest point ever with regard to my ability to cope psychologically with the beast. It's completely broken me this time. I'm gripped by intense fear pretty much constantly. All I can see is a future full of extreme pain and suffering, where all medications fail and where I'm ultimately pushed into ending my own life to escape the pain. I just can't escape a feeling of inevitability that I'm going to be fully chronic from here on in. I've only had a handful of full cycles in the past 12 years (partly down to the last few seemingly terminated by nerve blocks before they got going), but I fear the symptoms that persist between cycles (that my neuro has insisted are migraine) are evidence the beast never really leaves, and that I'm going to run out of luck. This current active cycle has been muted right down by a bilateral occipital nerve block, but I'm resigned to the therapeutic benefits wearing off shortly, leaving me fully exposed again. Before the nerve block, my symptoms were out of control compared with my history of CH. The pain has moved completely, from eye/temple to now being in my jaw and teeth. I don't know what this means. The frequency of attacks had gone from a usual 1-2 a day, to 5-6 a day. And worst of all, it seemed like Imitrex injections had just ceased to really work. Oxygen (15l/m, non rebreather) aborted pain, but pretty much every time I got reattacked 15-30mins later, despite staying on oxygen for a while after the pain had gone. This time the nerve block hasn't terminated the cycle, I continue to get mild attacks. My escape hatch abortives failing makes me feel like I'm staring at a future against the beast with no plan B. This is setting off a truly exquisite level of fear/anxiety which I just can't cope with. I've always taken some comfort in believing triptans and oxygen would save me. To feel that comfort blanket might have been removed is just an unbearable reality to contemplate. I've been on the D3 regimen now for just over a week, and started a ketogenic diet 4 days ago. I have no idea if the nerve block continues to work and/or these other measures are helping to keep things at bay. I guess I just want some encouragement that my worst fears might be overblown, that there's still hope for me, that I will find a way to cope. I feel like I'm going to be a lost cause with that just culminating in me being forced into suicide. It's a bleak place to be mentally. Last year I cycled 7000km on my bike, I was the picture of health/strength. Now I just feel physically and mentally broken - a shadow of my former self. How do the rest of you cope with the anxiety/fear? Are there some tried and tested techniques that I can utilise to help me fight back against the hugely imposing threat of this menacing disease? Right now I see no hope, no chance of future happiness. My two young kids need a good dad to make their lives happy and I fear that won't be possible because of me. It breaks my heart that my own misfortune will damage their lives too. Sorry to download like this. I'm just desperate to find some hope to cling onto. Anything at all. I'm seeing my neurologist on Tuesday. I'm just praying there is something I can do to help me control this beast long term. The uncertainty this disease creates really is like nothing else.

I agree with @Chris Moore. Surely there's something the CH community can do to help things like this on their way? I just find it completely staggering that, despite the obvious potential of BOL-148, that here we are over 10 years after a successful study, this option remains elusive as a treatment. I find it so damn demoralising that options exist to potentially change lives and yet those things don't reach patients at all, or at least not in legal ways. It's kind of abhorrent, for example, that CH sufferers who benefit from psychedelics have to break the law - a face considerable jail time - in order to do so. It just seems inhumane that governments and the medical community aren't able to make pragmatic decisions in the interests of reducing suffering. There just seems to be a whole lot of hypocrisy where it comes to pharmaceuticals. So many legal prescription drugs that are capable of far greater harm than currently illegal therapeutics. It just makes me feel depressed that we've not been able to move forward as a human race to make more pragmatic decisions. I just really hope we're on the verge of change this time around. It's just appalling that people have to suffer great pain when there really might be a solution already out there. It's just wrong.

It's probably worth mentioning that a ketogenic diet has shown some very promising results for cluster headache. The keto diet is more than just a diet, though, as it fundamentally shifts your body's biological functioning. I'd have thought that just eliminating certain food groups is something that's going to be a very individual thing - sure, it's going to work for some people but it's unlikely to be a consistently replicable approach. I do find it more believable, however, that shifting one's body into ketosis could be helpful for a greater chunk of sufferers. The success of keto for other neurological disease and the anti-inflammatory properties of ketosis do have relevance. It's clear there's nothing that works for 100% of sufferers, but I think keto is worth a try as a natural option. It has shown promise in clinical trials and there's plenty of decent anecdotal evidence too. My understanding is that going keto alongside the d3 regimen may be a valuable combination too.

@xxx with regards to quercetin, I think I may have an issue with that as I take the blood pressure medication candesartan. This is not for high blood pressure but a headache preventative prescribed by my neurologist. My general diagnosis is chronic migraine and eCH, and the candesartan has shown some success, at least on the migraine side. That said, there's still real difficulty in objectively distinguishing between between the root cause of some of my symptoms - I've always been suspicious that the symptoms my neuro says are migrainous might just be persistent CH shadows. I had a long history of migraine prior to CH so it's always been a bit hard to conclusively explain all my symptoms. Do you think I'd have to stop the candesartan before adding quercetin to the d3 regimen? The suggested dose is particularly high, especially in the context of me taking candesartan (which I believe is a drug changed by the liver?)

This was actually a pretty interesting thing to read. Surely this isn't unconditionally true?

O2 condensors are essentially pointless for CH. You really do need to fast track getting the right O2 setup. Others on this forum are super helpful and knowledgeable about this.

I can speak from experience that I've aborted a headache before by jumping into a very cold sea. You know that shock to the body you get when you enter cold water, the feeling of your breath being taken away? It seems like that can be enough to knock out any headaches for me, CH, migraine or otherwise. Maybe there's a vasoconstrictor effect triggered by that, I'm not sure. I know I've read articles in the past about chronic migraine sufferers who've managed to significantly cut down their headache frequency by doing cold water swimming every morning. So, it doesn't necessarily surprise me that being in extreme cold might help to abort a CH attack. However, in terms of medications to simulate that effect, it would most likely be anything that causes vasconstriction. So, triptans, oxygen therapy etc. Does your husband have access to oxygen? And, if so, does he definitely have access to the right oxygen equipment to get a satisfactory therapeutic effect? That means O2 tanks with a least 15 l/m flow rate, non-rebreather mask etc. There's also different techniques that can be used to improve efficacy of oxygen for those who may have found just standard breathing doesn't work well. Energy drinks high in caffeine can also trigger vasoconstriction and do seem to help many abort attacks. They can also be taken at the same time as starting oxygen to enhance the oxygen effect in a lot of people, speeding up abort times. Some people say they work even better if they are really cold from the fridge (which might be relevant for your husband). Generally it means rapidly chugging down a can, or using one the concentrated energy shots.

I remain conscious that since joining this community a few days ago I risk getting a bit spammy with all my questions - I hope you don't mind! Just a quick one really about the d3 regimen. One thing that seems consistent with CH is the idea that the beast has a habit of changing - e.g. things that used to work suddenly stop working. However, anecdotally, I'm picking up a general sense that the d3 regimen appears quite promising in terms of consistent response over time. Sure, there might be variations/fluctuations, but the general perception I get from reading sufferer experiences is that, if you're a responder, there's pretty decent long(ish) term benefits being derived from it. Is this perception wide of the mark, or would you generally agree that there's some truth in that analysis?

Thanks @jon019 I'm sure through trial and error I'll find a way to make this work better for me. There's got to be some positives to be derived from knowing that the oxygen does work to abort in the first instance. And it seems that reattacks are a known phenomenon that others have conquered with the right technique. So I don't intend on just giving up on it. Fortunately, my cycle seems (fingers and toes crossed) to be descending fast from its peak (the nerve block almost certainly had a positive effect, even if it wasn't as definitive as in the past) - it does mean that the trial and error may have to wait until next time. Would still appreciate anyone else contributing any suggestions about mitigating the oxygen reattacks/rebounds. I'm sure I saw @xxx has collected some data on this phenomenon at some point (the "vascular toning" effect I referred to), but just can't find much reference to it now.