Archimedes

Hi folks, another question - I am sick of having CH control my life and just as with my other post about daytime napping I consider rather tacking a hit then continue living in this prison. A question on beer - I never attempted to drink during cycle, in fact I am pretty much not drinking alcohol at all (last drink was like 1.5 years ago). If so I just drank clear liquor / cocktails which I actually didnt enjoy, I dont like booze to be honest so I just stopped completely. However since years and years I still can´t suppress my craving to sit in the evening sun together with friends, having a nice barbecue and some beers. Its not about getting drunk but this is my ultimate personal recreation setting from the "good old times" without the beast. Please dont start a discussion of you dont need alcohol to be happy etc thats not what its about. I have tried for years and years to shift my mindset but it does not work. I miss it too much. My question is - can I abort a hit after a beer just like any other hits, or do I risk to face a long lasting, severe, eventually not stoppable hit ? Body needs to metabolize the beer etc so thats why I think there is an increased risk then other triggers. The obvious answer is "try it" i know but I am just overly cautious and frankly afraid. Maybe someone can share experiences. thanks again & best

Thanks both, yes agree I also avoided daytime naps like a vampire does holy water but I this cycle I have just crossed a line of bearable tiredness. So my question stands however, do we have any evidence that day time naps - disregarding the additional hit, may extend / worsen the cycle due to further circadian rhythm interruption or does it rather not matter as the cycle runs it course anyways. best

Yes true I have not considered for those taking Verapamil that it would be maybe better to check upfront if cold showers could be a contraindication in regards to lowered blood pressure. I am not sure though its actually an issue if you do it slow. Anyways I highly, highly recommend give yourself a week to 10 days to start the cold shower routine combined with the breathing. You basically flood your cells with Oxygen by doing it correct. We humans are masters of adjustment, I think the regular timeframe to adapt to change whatever it is takes roughly 10 days (which fits to the roughly 15 day busting schedule actually). Just do it, you have nothing to lose. Also you do not have to be hardcore and jump right in, you can slowly adjust your body to it. I.e shower regular warm, then gradually decrease to cold and hold. You dont have to go to "full" cold either for the start, just so its not comfortable and hold for like a minute. After some days you will notice that you can drop the temperature even further. Its also not just the cold, the mindset is important as well. Bottom line is that you should enter a sort of meditation like state of mind - its just cold water, you can overcome your urge to leave the shower. The Mantra could be as simple as as "its just cold water - slower spinning molecules then my bodies so this is what creates the sensation" If you are able to pull this through for a couple of days, you will notice something very interesting. The cold water actually starts to feel warm. Sounds silly but it works. Your lymphatic system still gets the benefits from the cold but your mind starts to develop the capability to "switch off". This whole thing isnt just about enduring cold water or kick starting fat burning or what not (thats what most articles who address this technique speak about, fitness / health benefits etc) but for us CHers there is more to gain. Developing resilience. Strengthen and train your mind when you have to endure a bad attack. Just like cold water, a bad attack is also "just" pain. I am sorry I dont want to be offensive I have the same then you and I understand some might be put off by stating its just pain - but ultimately it is just pain. At least as far as we know CH is no degenerative disease, shortening lifespans or what not. The things that come along might affect our life spans, but not the attacks themselves. I might be wrong, maybe an optical nerve actually ripped in someones head but I have not heard about this yet. I think you get my point. This is no snake oil science or else, Wim Hoff did not invent this either. After the death of a family member he slipped into a bad state and was seeking ways out of it and pulled up some more or less forgotten stuff from back in the days. The whole cold water / breathing combination is age old, at least to 1821 where the Priest Sebastian Kneipp first introduced Hydrotherapy. (check wikipedia on Mr. Kneipp)A And no, this sure is no cure or will help everyone which is the usual disclaimer. Its a tool among many which is harmless, has no costs and can done anywhere. all the best to everyone around here

Hi Folks, when I first got diagnosed a decade ago I got a leaflet from my then Neuro stating a couple of "simple" no-no´s for a CH newbie. (Triggers etc). One thing that was mentioned on there (and I have read it here as well) was to not practice daytime sleeping / napping as this can act as a trigger. The past cycles I sticked to this and did not sleep during the day. Since the current cycle is so bad with not a single day of relief from the severe nightly attacks since weeks and weeks, I just have crossed the line that I can not endure my day anymore as is. I am so dead tired. Like not just tired, absolutely non functional horrible tired sometimes seeing hallucinations already. Coffee and Energy drinks do trigger this cycle as well (never did before) so I cant push myself artificially either. Now, I could not take it anymore and had a 1hr nap some days ago at around 3pm-4pm. Yes, it seems it is a trigger for me as I was welcomed after waking up with a very bad attack. My question is - I am honestly in the situation to rather take the hit / pain and abort it then having to carry on with this tiredness. Is there any more detailed research around if a daytime nap is making the whole situation even worse, lengthening the cycle etc ? Yes, daytime sleep is - at least what the media tells us - generally not that good if exceeds the power napping timeframe of like 20 minutes or so, but I am curious on your view if I mess up things more by rather taking the hit and have a bit of rest at least, or if it does not matter and there is no worsening affect other then an additional daytime hit. Yes, I understand the circadian rhythm / Hypothalamus is once more interrupted with a sleep during the day but its f***cked anyways so maybe it doesn't matter anymore at this stage. Babies / Toddlers / older people also nap, so it can´t be universally "bad" for our internal clock.

I did try both Benadryl as well as quercetin as recommend, not dice at all. It gets worse every day with day time hits sneaking in as well recently and o2 hardly aborting the severe night attacks. I am loading up d3+cofactors once again (50k / day) since a week now but no change whatsoever. Same frequency, only that they last even longer it seems. (I was on the Regime since late 2020, always start in Q4 so I am not just beginning to load now. I just try to re-load but this time something else is going on.) Gonna start Verapamil now again. Helped the last cycles, I was hoping to be able to stay off meds and get it cleared with D3 only but not this time or not yet. Lets see.

Wim Hof is great guy / method and definitely should be picked up by more folks around the globe (not just for CH). I do this since I first came across it around 4 year ago on and off ( I should be more consisted and disciplined then I was in the beginning especially with the cold showers but its hard to get past the first week or so once you stopped doing it for while) I was hoping it helps for this cycle as well but does not do it for me. I was able to abort 2 or 3 attacks the last weeks though so its always worth a try. I seriously recommend anyone who has not hear about this to look into it, its good for your overall health (not just the breathing but the full programm with cold showers etc). No costs attached either, you can watch youtube tutorials thats it.

You are right, I let down my guard with the decision to drop it right now but I was 4 years in remission and typically out of cycle so yeah I felt overly confident. I am still not sure it is really related but the timing just is so perfect. Unfortunately (or rather fortunately) no "normal" Headaches as side effects, yes I know these might come along with tapering off but its the full blown cluster ass. Sitting here now at the PC getting hit every 2 hours during day time as well since last night. 10 hits or whatever by now. Never had that, ever. Just a bad combination of too many things right now but dosing up the Zoloft again sure is also not the way to go. I have no one to ask frankly so feeling a bit helpless if I am on the right track with trying to get off the Zoloft, my Doc would just say "dose it up again if you feel it affects your cluster" (no, I want to get off of it !)

Hi all, upfront sorry if that would belong into theory and implementation. I have tried the search function for "SSRI withdrawal" but nothing directly related showed up. (*disclaimer for those I had no interaction with yet, i have a correct o2 setup, zomig nasal emergency packs, am on the d3 regime, have added Quercetin, am ware of triggers etc. My career is nearly 16 years or so). I have not busted yet because I am afraid to worsen things but would be open at this point.No option right now because of the SSRI intake anyways. My Neuro is on sick leave for a longer time so I have no one to speak to at the moment on potential withdrawal affecting CH matter. No worries, I will not take any answer as medical advice I just seek input / feedback / discussion with people who might have had something similar. I am on Sertraline (Zoloft) since end of August ´20 so nearing 8 months now. I take 100mg and want to finally get rid of it by slowly weaning off of it. I do my own schedule as I didnt like what doctors told me (I got told "half it each week and then just stop - No, I dont want to do it that quick). So I reduce in 25mg steps each week, I am at 50mg since yesterday. Now - what happened is that my cycle started around the same days I reduced from 100mg to 75mg. (cant remember if it was the day before or 2 days before). Horrible first cycle night. I reduced to 50mg yesterday, and once again had a very terrible night, 5 intense hits each 2 hours apart hardly to stop with o2. I burned through nearly all of my remaining o2, luckily I get an emergency delivery tomorrow. On both days I worked out in the morning (just very mild) so this could also be the reason - unsure. Has anyone here experienced something similar when decreasing SSRI intake ? (starting a cycle, worsening attacks, not abortable by o2 in the usual time etc) I understand the basic functionality of SSRIs, also that the mess with sleep schedules etc but I am unclear on the potential withdraw effects for us CH heads specifically. Basically I wonder if I should rather start dosing up again and wean off in summer when I never had a cycle but frankly I am worried that it does not matter when I reduce it, it will always kick the beast out of sleep so I rather pull through with it now and am at least off the meds.. Option B = maybe even reducing in quarter steps is too much and I should consider going down in lower doses. I am not clear enough on the process of technically adjusting my serotonin receptors to my "normal" balances. thanks all

I witnessed something similar this cycle, never had that before in terms of workout. I have not worked out (at all) for around 10 months and the same day I started again some weeks ago, my cycle started. (which is over a month late then usual, I thought I passed a cycle again this year) I did not start out with intensive training, I know what I am doing in terms of very slowly getting into lifting again after a longer pause. Seems this time I angered my CH - I have since tried again to workout on 2 more occasions with very moderate units in the morning, the hits the following night where absolute horrible with high frequency and took a too long time to abort with o2. Very odd - I´ll test on some more days but need to prepare already that another thing that brings joy and would be good for me is not allowed. I know that there are many posts here stating that intense workout does not abort for them but actually trigger an attack. (I am not triggered after the training in the morning but it starts early at nighttime) My neck feels worse as well during attack build up. My theory right now is lifting tingles a back / neck nerve involved with signal paths to the trigeminal nerve or what ever. Our cases might be totally unrelated, as usual the disclaimer we are all different but still leaving my experience here.

Hi Jonathan, thanks for your response. Yes I've tried energy drinks the past years but found it made it worse. I don't suspect the coffeine / taurine or else but rather the high amount of sugar being a problem for me. Sure there are zero/diet versions around but same here, maybe the artificial sweeter isn't well tolerated. For coffee, I am a coffee lover (black and strong) but unfortunately it also seems to rather kick something off then help. Out of cycle I get sometimes shadows after a coffee so jury -for me- is still out . Agree on the gut feeling part. Interesting what you say, it goes a bit in the direction what I meant in terms of allowing an attack to build up. Challenging to not miss the sweet spot though. Best

Thanks both, I understand this might have sounded like a silly question but guess I am just over cautious / in fear o2 won't work anymore at some point.

Other way around for me, I get often euphoric sensations before the build up of an attack (when not sleeping of course). Not kidding, it sucks. Batch's feedback makes sense as always

Other way around for me, I get often euphoric sensations before the build up of an attack (when not sleeping of course). Not kidding, it sucks. Batch's feedback makes sense as always

Late to the party but figured to response as well in case anyone stumbles upon this post. I looked into wobenzym years ago as well as I knew about its strong anti inflammatory ingredients (had it prescribed because of an inflamed knee, worked wonders) Just to state, this isn't any kind snake oil it's a very well known and reputable brand around here, often prescribed for any kind of joint / limb etc issues by doctors. I don't think it's available in the states for whatever reason (it was not back then, maybe it is now or under another brand name) I didn't try for CH myself as I want to stick to the d3 regimen only if possible but yeah if anyone wants to give it at shot I can confirm the stuff is at least not any hokus pokus when it comes to reducing inflammation but actually worked (for my knee but still)

Hi all, I think I read a thread on this matter some years ago but not sure what the original discussion was, cant find it anymore. Question for long term o2 users - have you ever felt you built up a tolerance with o2 in your CH careers ? I know (have experienced myself) o2 can not abort an attack in some cases but that is very rare so I am not referring to these situations. I am asking because I have started a new cycle after many years and I am not sure I am torturing myself unnecessary since 2 weeks. When I feel an attack is coming - I usually wait it out how bad it gets until I can´t tolerate it anymore (some of the attacks luckily subside) to "save" my o2 usage. Not to save the o2, but to prevent my body / metabolism getting used to it. I also have the feeling I have to let if not any attacks slip through because my body needs to adjust something / attacks are an coping reaction for something (a mix of allergy, stress, hormone disbalance, gut microbiom f+++cked up etc). I often try to let attacks run as long as I can before I hit the o2. I know this may be nuts but its just a feeling I should do this. I did the mistake once and was too late to abort a bad one though, I peeked into the abyss during the attack - I know waiting to long is playing with fire, no need to tell me Is limiting / "portioning" o2 actually a wrong approach / maybe pointless to hurt myself as there are no known cases an o2 tolerace is built ? Whats your views and experiences on that ? Happy to hear your thoughts.

Hi guys, Think I mentioned that in another post, I have an upcoming tooth surgery. I postponed it as long as possible due to fear any anesthesia can cause an attack (I am PF since months but still feel something is there) Now I took the advice and told the doctor please man, no epiphenidrine as this can cause an attack. (I don't know if for me but don't want to find out) Turned out he know what cluster (he mentioned our known triggers so I believe him) is but couldn't comment much on the epi part. He suggested having an anesthesia assistant coming in and go the propofol route. (That's the "Michael Jackson" drug , didn't know that...) Anyways - has anyone experience with that ? I have seen it mentioned in some posts but not in the context of tooth surgery.. Any risks provoking CH ? Thanks all, sweating blood and tears for the upcoming surgery

@urs I strongly believe Vit L can treat your mind just like you say. What I still can not get my head around is why there isn't finally some more research put into this substance or even allowance to get a treatment supervised in a clinic. It doesn't have to be sold on prescription in drug stores so abuse can be ruled out and per my understanding doesn't even have real addiction potential. Heck even cocaine or methadone and what else not is administered in specialized clinics. If it's true that the occurance of CH in the population is 1:1000, then it isn't that rare actually. Similar to MS, which has a lot of attention. I also don't buy the theory of big pharma not interested, they could just sell according new options with an markup and make the same or more then on the triptan or ssri market. Also don't understand why the very promising BOL-45 trial is years ago already and never heard again from.

Yes its the same for me. When not in Cycle, one pain / injury follows the next. And that since a decade. Root chanel infection currently started right after. This goes on year around. Heavy neck pain gone after weeks not able to turn your head or even breath in without pain ? Fine, here you go with a varicocele (swollen vain in your scrotom). Treated ? Get your share of heavy flu not going away for months. One month after the other something else. No I am not waiting for it. I don't sit around saying what's next and so forth. But it still happens. This is a vicious cycle as your body and mind is conditioned towards pain and not enough time in between to recover. This creates a constant (even if sublimal) stress environment which in return opens the door for nasty stuff. This sucks badly and is very dangerous. I am finally seeking psychological treatment and might consider starting Zoloft now which seems the go to stuff for migrane suffered with depression as well. This constant pain spiral did a lot of damage so maybe the SSRI route helps. I always stayed away from that path but think it's worth a try now. Yes I know it can't be done when attempting to bust. Haven't finally decided yet I am convinced this is also for some people the reason why cluster started at all. Either too long constant stress or a severe traumata either physical or psychological before our very first ever atrack that keept lingering and finally kicked of a chain reaction. Not the only thing involved but it greatly added to it.

Signed up !

Yes it does ! I was pleasantly surprised that there was a mouthpiece with amextra "hose" included as well currently

I just like to add that there are also people including me where it actualky works better with the cannula. I had a standard non rebreather mask and then also ordered the (original) clustermax mask. Non did work as fast as sticking the cannula in my mouth, make sure it's shut and close my nose with 2 fingers. Not saying the mask isn't better for most, just saying for some reason it's not for me and others report that as well. Cannula aborts in couple of minutes, masks take up to 15 mins and I know how to breath right. Either way, oxygen done right is great and everyone will find out for themselfes what's best. Just don't give up if technique A doesn't work, try route B Edit - cannula wastes more o2 of course as it keeps streaming when you exhale vs. Filling a bag but well, on the other hand it aborts faster for me. Give and take

I like this Jon, thanks very much !

What I forgot - saw my Neurologist this week again and during our conversation he mentioned I come across severley anxious and tense to him (again, I am PF since a longer time) and that I urgently need to look into that. He said he has many cluster patients and confirms a pattern of people being extremely strong during an active phase and falling into a deep hole when it's over.(even if you don't directly feel you are "falling") Yes, PTSD is real for CH sufferers and yes it's common. He is an internationally known expert and also supports the " alternative " m/l options we also discuss on this board. I mean with that I trust his statement. Anyways - he was strongly suggesting to me to look into a book from Saki Santorelli, director of the Stress Reduction Clinic in Massachusetts. Check his work out on Google, it seems to be an essential reading for med school students. It's basically about the mindfulness topic / power of mind when it comes to healing (or the other way around I guess....) Haven't read it yet, but will look into it or check if a library has it on shelves. Can't hurt.

I have sort of the same thoughts this cycle. It behaves strange and I had the worst frequency with 8 attacks per night during March since ever. My last cycles just went on for some weeks and then one or 2 years remission - I didn't think about it much back then afterwards. Not this year. Due to the prior weeks of 8 attacks per night I find myself now being obsessed with the topic. Even if PF since 3 weeks, I can't think about anything else throughout the day. Obsessing what could trigger. Obsessing reading stuff about it. Coming across other bad desaeses I fear of getting, doing doctor marathons. Full kidney check ups, brain MRI etc. I feel I am not "here" like watching my life as a movie, forgot 3 times now where I parked my car and have trouble reading (seeing different words then are actually there) This behaviour prevents partly the cycle to fully end, I feel somehow it's still not over even after close to 5 months. I am somewhat sure about it. That's bad. I am in psychological treatment already (coincidentally started seeing a psychologist 2 weeks prior to this year's cycle..) It's not helpful yet and I see him since months. He tries to teach mindfulness , training not to focus on medical stuff and inevitable putting yourself in a victim role, letting your mind flow, things like that. Doesn't help. I really try, and I understand the concept and am open to it. It feels to me he doesn't know further currently as well and even if he is no advocate of them, suggesting anti depressants now. I have a prescription lying around but am not at the stage to go this route. There must be other options I haven't given up yet. Long story short. This is a learned behaviour as we adopted to our painful nights / days, eventually creating a constant sublimal fear, anxiety and stress even out of cycle. Sucks badly and has wider consequences then just for CH. I don't know what to do at this stage. Frankly shouldn't even check on this board daily (you are all great but you know what I mean) I don't know, I keep searching and retraining my brain..

The popping is definitely new for me this year, and I am not sure anymore if this is allergy driven. I initially thought it's pollen but counts a very low since some weeks. I found a way to actually trigger the popping - I discovered the Wim Hof method ("the ice man") and try this since a week now. Interestingly this is linked to a natural DMT release as well.. Basically first thing in the morning you do deep breathing exercises, partly controlled hyper ventilation and do a quick HIIT workout like 40 push-ups. Then -> cold shower. Really cold. Boom, ear pops just like after an attack. I am not really trying this method just for CH but it reads as scientifically proofen that this boots your whole immune system. So why not. Cold shower makes you feel awesome afterwards and more oxygen through heavy breathing, can't hurt overall. A bit though to stick to, but we have been through worse...