Johnd1983 Posted May 5, 2021 Share Posted May 5, 2021 Hi everyone, I hope you're all doing well... I just wanted to share something with you. I have been suffering with clusters now for around 15 years or so and, thankfully, I did not have any cycles during 2020 but they kicked in for me this year on Friday last week (30th April 2021). I was prescribed Verapamil previously, in 2015/16, which has actually worked really well for me in the past but always takes a good few days to take effect - Luckily, I had a supply stored away so I started with them straight away on Friday evening and have been taking them daily, morning and evening, as before. Unfortunately, it doesn't seem to be working so great this time around for me, though. I have been practicing various types of breath work now for around 18 months in my day to day life, as well as meditation etc. and one of the breath work techniques that I have been using is the 'Wim Hof' method. On Sunday this past weekend, I was hit hard by a cluster and randomly thought to try the WH breath work, because why not!? Anyway, the long and short of it is that it actually worked and cleared my headache by the third and final round...completely (approx. 8-10 minutes)! I have since used it every single time I have had a cluster and it has worked every single time! I am unsure why this is working for me but I am guessing that it is due to the amount of oxygen that is being forced into my system - Possibly similar to the oxygen treatment? I wanted to share this with you guys to see if this would help anyone else, without the need for pharmaceutical medications (although I don't know if it is a combination of this and the Verapamil). The link to the video that I watch each time is below: I really hope that his information is useful to some of you and it helps you as it is helping me! Wishing you all the best John. 1 Quote Link to comment Share on other sites More sharing options...
Archimedes Posted May 5, 2021 Share Posted May 5, 2021 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. Quote Link to comment Share on other sites More sharing options...
Cast Iron Posted May 5, 2021 Share Posted May 5, 2021 My neuro advised me to first see a cardiologist and have a contra-indication of doing the cold showers because my intake of verapamil is quite high and the cold may have an adverse effect on my heart. If you’re not on verapamil, by all means step into your budgie smugglers and have that ice cold water bath Quote Link to comment Share on other sites More sharing options...
Johnd1983 Posted May 5, 2021 Author Share Posted May 5, 2021 19 minutes ago, Cast Iron said: My neuro advised me to first see a cardiologist and have a contra-indication of doing the cold showers because my intake of verapamil is quite high and the cold may have an adverse effect on my heart. If you’re not on verapamil, by all means step into your budgie smugglers and have that ice cold water bath I never tried the cold water therapy...yet anyway!! Only the breathing technique. I am going to keep it up for as long as it works. Just hoping it helps more people on here! Quote Link to comment Share on other sites More sharing options...
Johnd1983 Posted May 5, 2021 Author Share Posted May 5, 2021 5 hours ago, Archimedes said: 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. Yes, same here. I have been doing it anyway and just gave it a shot, it worked, and has done each time since, thankfully but I am still taking verapamil also. I hope you get through your cycle alright mate! All the best to you. Quote Link to comment Share on other sites More sharing options...
elSchreib Posted May 6, 2021 Share Posted May 6, 2021 I only found out today that what I get is a cluster headache. Started getting them again this week but now they are worse than last year and actually wake me up. Tried many things that didnt work, but this cycle I did stretches and then ice and repeat. Finally something actually helped! and think it was the bigger breathing I did. Ill try Wim Hof way, Nowadays we live in a world where we shallow breath all day at work from sitting, could be a good place to start.. Quote Link to comment Share on other sites More sharing options...
jon019 Posted May 6, 2021 Share Posted May 6, 2021 @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 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 6, 2021 Share Posted May 6, 2021 elSchreib, What jon says. Since you're new to CH, this overview file might be helpful. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Quote Link to comment Share on other sites More sharing options...
Archimedes Posted May 6, 2021 Share Posted May 6, 2021 15 hours ago, Johnd1983 said: I never tried the cold water therapy...yet anyway!! Only the breathing technique. I am going to keep it up for as long as it works. Just hoping it helps more people on here! 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 Quote Link to comment Share on other sites More sharing options...
TimothyH Posted May 12, 2021 Share Posted May 12, 2021 Huge fast breathing worked for me yesterday! I've been in a cycle of attacks for 12 days, taking Verapamil, and asked to get prescription of O2 but doctor said they don't prescribe that. (Going to see neurologist today to see if they do.) I started getting a daytime attack yesterday morning, and started "hyperventilating" if that's the right word - taking huge deep breaths, sucking air in and pushing it out rapidly, to try to mimic what I've seen people post about using O2 for attacks. Attack aborted in about 5-10 minutes. Started coming back half hour later, so I did the breathing again, and aborted in 10-15 minutes and no extreme pain. Thanks for sharing about the Wim Hof technique - seems similar to what I did, I want to look into that... I know I have a problem with shallow breathing when I'm stressed or when I'm too much in my mind - not sure how that is related to CH or the regular headaches I get when not in a cycle, but definitely seems like oxygen and breathing is a factor. 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 12, 2021 Share Posted May 12, 2021 1 hour ago, TimothyH said: asked to get prescription of O2 but doctor said they don't prescribe that. (Going to see neurologist today to see if they do.) Timothy', here's hoping you see a competent neurologist today and you do get a prescription. Let us know. If you don't, you can set up your own system using welding oxygen, as many people with CH have done. We can tell you more about that. Many people without O2 find that an energy shot such as 5-Hour Energy will stop an attack or significantly reduce its severity. Here's a file with a lot of info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Quote Link to comment Share on other sites More sharing options...
TimothyH Posted May 12, 2021 Share Posted May 12, 2021 Thanks! I felt very prepared to go to the appointment with all the knowledge I've learned from these forums! Neurologist was knowledgeable and helpful. Happy to write a prescription for high-flow 02 and asked the staff to start looking into supply and insurance. She also gave me Rx for 2% viscous lidocaine - and she pulled up the ClusterBusters website to show me where to find instructions how to use it intranasally! And gave me samples and Rx for Sumatriptan injection. And she will increase Verapamil if needed. Since I've never had an MRI, she suggested I could do that with a focus on the pituitary gland. Since I'll need blood work done before the MRI, I asked to get a reading of my vitamin D3 levels to see if that's low. Lmk if you have any advice about this course of action. 3 Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 12, 2021 Share Posted May 12, 2021 Great!!! Consider splitting the injection if it's 6mg (and if you use it): https://clusterbusters.org/forums/topic/2446-extending-imitrex/. This knowledgeable doctor might be willing to prescribe sumatriptan in vials with syringes. You should probably try the triptan nasal spray, too. I suppose you could start looking on your own for O2 suppliers. Depending on your area, Lincare and Airgas are typical big suppliers. Just google medical oxygen. I don't know that many people are using lidocaine to help with aborting attacks, but maybe I've just missed that. What I've read about it is typically a 4% solution, but again, I have very limited knowledge. The MRI is a good idea. As I say, sounds like a good doc! Hooray!!! 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted May 12, 2021 Share Posted May 12, 2021 ...hi Timothy...sounds like you got a winner neuro...that's a good get as they are hard to find... ...agreeing with CHf re lidocaine...typical is 4% solution from a compounding pharmacy. definitely worth a try but a very awkward procedure, especially so in the midst of a hit. delighted she referred you to CB but not sure why she thinks there are instructions for use...never seen such here... ...get the O2 yesterday....tis a life changer... best jonathan Quote Link to comment Share on other sites More sharing options...
TimothyH Posted May 12, 2021 Share Posted May 12, 2021 Thanks, I definitely want to get the O2! Here's the page she pulled up on lidocaine nasal: https://clusterbusters.org/resource/home-instructions-for-intranasal-lidocaine-sphenopalatine-ganglion-block/ 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted May 12, 2021 Share Posted May 12, 2021 (edited) ...wow...cool....quite specific instructs.....comes up in the treatment option section but not on a forums search.... Edited May 13, 2021 by jon019 1 Quote Link to comment Share on other sites More sharing options...
mr_watts Posted May 21, 2021 Share Posted May 21, 2021 thanks so much for sharing @Johnd1983- super useful to read about your experience with this. I’ve used Wim Hof before for meditation but am very interested in giving this a go when an attack hits. I’m currently waiting on a referral to get oxygen prescribed and will test this out in the interim. Quote Link to comment Share on other sites More sharing options...
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