Axel_B Posted October 27, 2021 Share Posted October 27, 2021 My techniques when I have nothing effective to abort: Pacing in an upright position ** Breath through open mouth to stop crushing my teeth. Exhale quickly and inhale deeply Keep head upright, and shoulders back to allow deep breathing pathways Keep body temperature down with cool clothing/ remove jackets /heavy shirts /jeans/scarves etc ' Do not lie down', for me the stabbing / pulsing increases 3 to 4 times from an already KIP 10 situation. Staggering difference between standing and lying down. I assume because more blood is flowing to the head !! When standing/pacing the stabbing through the eye is opprox every 20 to 60 seconds, if lying down can be approx every 5 to 15 seconds, Each stab can be like breaking a bone !! I feel sick to the stomach with pain and nausea ! so STAND and pace Keep pacing Cold or iced strong coffee and/or red bull / or any other coffee taurine energy drink if available Darkest possible glasses to shut out the light so help not to squeeze the eye closed for such long periods Try to eat anything with a high ginger / ginger root content Where possible I remove myself from any social situation in a seperate space, as I can curse loudly and grunt and moan somewhat ** Reminder, to keep mouth open for breathing to help prevent the crush / grinding on teeth, so important for long term dental health, could eventually grind the molars flat which is costly to fix. If I have to grind to tolerate the pain, chew on matches/toothpicks or a soft piece of timber or thick silicon type of plastic that you cannot grind through Cold/ice pack, if no cold pack rinse cold water over head or wrap soaked T-shirt /towel over head, and renew with cold water regularly If noisy use ear protection, however with biggest/loosest possible fit as ear pads can push painfully on the side of head. Not noise cancelling as frequency is audible during the attack Silence and darkness is best More coffee and/or red bull/ similar, cold or iced More cold packs if available More deep breathing The crushing and stabbing feelings are completely agonising so keep pacing and breath and try to meditate through it ' ZEN Keep pacing, if I have to sit because have been pacing for an hour or more already, again keeping head upright sit upright, and pace again as soon as possible This can last between 1.5 to 3 hours. AND REPEAT daily until I can Bust......... Power Hope Courage Axel_B 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 27, 2021 Share Posted October 27, 2021 1 hour ago, Axel_B said: My techniques when I have nothing effective to abort: Pacing in an upright position ** Breath through open mouth to stop crushing my teeth. Exhale quickly and inhale deeply Keep head upright, and shoulders back to allow deep breathing pathways Keep body temperature down with cool clothing/ remove jackets /heavy shirts /jeans/scarves etc ' Do not lie down', for me the stabbing / pulsing increases 3 to 4 times from an already KIP 10 situation. Staggering difference between standing and lying down. I assume because more blood is flowing to the head !! When standing/pacing the stabbing through the eye is opprox every 20 to 60 seconds, if lying down can be approx every 5 to 15 seconds, Each stab can be like breaking a bone !! I feel sick to the stomach with pain and nausea ! so STAND and pace Keep pacing Cold or iced strong coffee and/or red bull / or any other coffee taurine energy drink if available Darkest possible glasses to shut out the light so help not to squeeze the eye closed for such long periods Tissues if need to blow nose / clear breathing pathways Try to eat anything with a high ginger content Where possible I remove myself from any social situation in a seperate space, as I can curse loudly and grunt and moan somewhat ** Reminder, to keep mouth open for breathing. Don't crush / grind teeth, so important for long term dental health, could eventually grind the molars flat which is costly to fix. If I have to grind to tolerate the pain, chew on matches/toothpicks or a soft piece of timber or thick silicon type of plastic that you cannot grind through Cold/ice pack, if no cold pack rinse cold water over head or wrap soaked T-shirt /towel over head, and renew with cold water regularly If noisy use ear protection, however with biggest/loosest possible fit as ear pads can push painfully on the side of head. Not noise cancelling as frequency is audible during the attack Silence and darkness is best More coffee and/or red bull/ similar, cold or iced More cold packs if available More deep breathing The crushing and stabbing feelings are completely agonising so keep pacing and breath and try to meditate through it ' ZEN Keep pacing, if I have to sit because have been pacing for an hour or more already, again keeping head upright sit upright, and pace again as soon as possible This can last between 1.5 to 3 hours. AND REPEAT daily until I can Bust......... Power Hope Courage Axel_B This sounds awful! I'm so sorry you are dealing with this.. oxygen dosent work for you? Do you have access to it? Have you see a neurologist or headache specialist? You sound like a veteran at this? I'm not only 3 years in and um I hate it. Not a helpful response but any respons helps get more attention.. 3 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 27, 2021 Share Posted October 27, 2021 (edited) There might be some thoughts in here that you might want to try. This is copied from this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ “Treatments” without O2 or other meds (or as supplements to other treatments) A lot of people arrive here with nothing effective to treat their CH, either because they have crappy doctors or because they just got diagnosed (or self-diagnosed) or because they have come to believe that they have “tried everything” and “nothing works.” That latter might in fact sometimes be the case, but most often we find that (a) they haven’t actually “tried everything” (such as busting, or D3, or other methods), and/or (b) what they did try was prescribed or delivered ineffectively, as I described above. Here are some strategies that help some people abort or prevent attacks (again, I’m not addressing busting here, though of course it must be seriously considered since it’s a highly-effective, low-side-effect method for ending cycles and possibly preventing them). Some people get relief from bodywork (massage, chiropractic, craniosacral, etc.) and some from other “alternative” methods such as acupuncture. Most people don’t. 1. Preventive Batch has observed that allergies (even if they aren’t causing allergy symptoms) can cause or ramp up CH, so he recommends Benadryl at 25mg four times a day, including one at bedtime. Other anti-allergy medicines, such as Claritin, seem to help some people. Most people with CH have learned that alcohol is a trigger. But there are many other triggers that are not so obvious. See this thread: https://clusterbusters.org/forums/topic/4568-triggers/ Drinking lots and lots of water seems to help prevent or lessen attacks. A ketogenic diet seems to help prevent or lessen attacks. Magnesium helps some, taken at 400mg daily, started about a month or so before an anticipated cycle. If taking magnesium for a relatively long time, calcium should be added. It also can help with a typical side effect of verapamil, constipation. A licorice root protocol has been helpful for some. You can read about that here: https://clusterbusters.org/forums/topic/941-licorice-root-summary/ Kudzu root has helped some. Dosages are not clear to me. Caution is recommended with all supplements! Know what you’re doing. Some have said that deeply massaging the “cluster knot” in their neck helps them. 2. Abortive Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time. Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks. “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Some people find that taking melatonin at bedtime helps (not wise to take both melatonin and Benadryl at night.). Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Several people have reported that DMT is an excellent abortive for them. You can read more about that here: https://clusterbusters.org/forums/topic/7444-dmt-first-time-finding-an-effective-abortive/ Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water. Sex. Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack. Edited October 27, 2021 by CHfather 4 Quote Link to comment Share on other sites More sharing options...
Axel_B Posted October 28, 2021 Author Share Posted October 28, 2021 Yes I have tried O2 , for a month. result was aborting from KIP10 to KIP4-6 constant shadows. AARRGGH continuously so stopped the O2 and busted with MM. This was two+ years ago at which time I discovered the MM as a preventative/ longer term bust. Haven't tried the O2 since then. .... (..in 2014 my neurologist scripted me Imigran nasal spray as abortive, and verapamil / calcium and beta blockers as preventative, but did not help, on them for more than 12 months with no effect whatsoever) Paracetamol and codeine combo work as abortive, also Imigran nasal spray, but take up to an hour, so a lot of the time I just ride out the storm. Thanks CHF, I have checked the links and info and have recently started D3 with fish oil and ginger as a daily regimen. Also including extra fatty fish and fatty foods and Chinese ginger sweets through the day on top of the vitamins. . Drinking extra ginger tea at night because I fear being woken by a KIP 10 at 2 am Going extra on ginger as understand that it lowers blood pressure. Seems to be helping by extending the time between attacks by up to 30 hours, but have to be super vigilant with the triggers I will start the melatonin soon to include in daily regimen And thanks you for the Benadryl advice. I live on a large property with pets and a dusty shed Some other interesting techniques with the hot water reducing blood pressure so will have to experiment I have been trying to source RC seeds but no joy :/ Quote Link to comment Share on other sites More sharing options...
Axel_B Posted October 29, 2021 Author Share Posted October 29, 2021 On 10/28/2021 at 1:56 AM, CHfather said: There might be some thoughts in here that you might want to try. This is copied from this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ “Treatments” without O2 or other meds (or as supplements to other treatments) A lot of people arrive here with nothing effective to treat their CH, either because they have crappy doctors or because they just got diagnosed (or self-diagnosed) or because they have come to believe that they have “tried everything” and “nothing works.” That latter might in fact sometimes be the case, but most often we find that (a) they haven’t actually “tried everything” (such as busting, or D3, or other methods), and/or (b) what they did try was prescribed or delivered ineffectively, as I described above. Here are some strategies that help some people abort or prevent attacks (again, I’m not addressing busting here, though of course it must be seriously considered since it’s a highly-effective, low-side-effect method for ending cycles and possibly preventing them). Some people get relief from bodywork (massage, chiropractic, craniosacral, etc.) and some from other “alternative” methods such as acupuncture. Most people don’t. 1. Preventive Batch has observed that allergies (even if they aren’t causing allergy symptoms) can cause or ramp up CH, so he recommends Benadryl at 25mg four times a day, including one at bedtime. Other anti-allergy medicines, such as Claritin, seem to help some people. Most people with CH have learned that alcohol is a trigger. But there are many other triggers that are not so obvious. See this thread: https://clusterbusters.org/forums/topic/4568-triggers/ Drinking lots and lots of water seems to help prevent or lessen attacks. A ketogenic diet seems to help prevent or lessen attacks. Magnesium helps some, taken at 400mg daily, started about a month or so before an anticipated cycle. If taking magnesium for a relatively long time, calcium should be added. It also can help with a typical side effect of verapamil, constipation. A licorice root protocol has been helpful for some. You can read about that here: https://clusterbusters.org/forums/topic/941-licorice-root-summary/ Kudzu root has helped some. Dosages are not clear to me. Caution is recommended with all supplements! Know what you’re doing. Some have said that deeply massaging the “cluster knot” in their neck helps them. 2. Abortive Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time. Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks. “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Some people find that taking melatonin at bedtime helps (not wise to take both melatonin and Benadryl at night.). Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Several people have reported that DMT is an excellent abortive for them. You can read more about that here: https://clusterbusters.org/forums/topic/7444-dmt-first-time-finding-an-effective-abortive/ Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water. Sex. Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack. OH WOW !! I woke up to a blinding CH/KIP10 this morning and thought fuck it, before any abortive or other techniques I will run try the HOT WATER TECHNIQUE. Stood in a bucket of hot water for 5 minutes approx, to just below the ankles, and went from a KIP10 to KIP5 within a few minutes. GREAT !! THANKS A BUNCH, great for instantly lowering blood pressure>..... however KIP 5/ Nasty eye pulling shadow is persisting for some hours now since the hot water, but I can manage to function somewhat with KIP5. Thank you CHF for those interesting treatments / Will definitely be trying that again ..... 5 Quote Link to comment Share on other sites More sharing options...
xBoss Posted October 29, 2021 Share Posted October 29, 2021 Pretty good list. Only thing I have to add is hot bath soaks. They seem to abort the easy attacks pretty well for me at least. 3 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 29, 2021 Share Posted October 29, 2021 1 hour ago, Axel_B said: Stood in a bucket of hot water for 5 minutes approx, to just below the ankles, and went from a KIP10 to KIP5 within a few minutes. GREAT !! NICE, @CHfather and @xBossstrike again! 1 Quote Link to comment Share on other sites More sharing options...
Cast Iron Posted October 29, 2021 Share Posted October 29, 2021 On 10/27/2021 at 4:33 AM, Axel_B said: More cold packs if available I learned that if I step into the cold swimming pool at the onset, within 5 minutes I can abort by inducing vasoconstriction 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 29, 2021 Share Posted October 29, 2021 Hot water was my main 'go to' for some years!!! Glad that it helped you so much!! Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 29, 2021 Share Posted October 29, 2021 Have you tried Topiramate as a preventative Axel , not saying its gonna work for you buddy , but ive used it for years know .im episodic and i have missed a couple of cycles ,again im not saying its down to the Topiramate but as i wasn't on any other meds i couldn't put it down to anything else , and of course my neurologist jumped at the chance to credit the Topiramate with me missing a couple of cycles Quote Link to comment Share on other sites More sharing options...
Axel_B Posted October 29, 2021 Author Share Posted October 29, 2021 1 hour ago, Shaun brearley said: Have you tried Topiramate as a preventative Axel , not saying its gonna work for you buddy , but ive used it for years know .im episodic and i have missed a couple of cycles ,again im not saying its down to the Topiramate but as i wasn't on any other meds i couldn't put it down to anything else , and of course my neurologist jumped at the chance to credit the Topiramate with me missing a couple of cycles Greetings Shaun, no I have never heard of Topiramate. Just had a little look online, and will mention this to my doctor. After the verapamil and a couple of other pharmaceutical blockers that didn't work, I have become a CH pharmaceutical sceptic, and really have started to lean towards proven alternative methods for a real bust. I will probably go for LSA/ RC seeds or similar treatment in the near future. Have enough for 2 more MM busts and then I will be desperately seeking new alternatives........ 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 29, 2021 Share Posted October 29, 2021 10 hours ago, Cast Iron said: I learned that if I step into the cold swimming pool at the onset, within 5 minutes I can abort by inducing vasoconstriction Interesting! Is that full submersion or partial? I would imagine full..... Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 29, 2021 Share Posted October 29, 2021 11 hours ago, Cast Iron said: I learned that if I step into the cold swimming pool at the onset, within 5 minutes I can abort by inducing vasoconstriction 33 minutes ago, Bejeeber said: Interesting! Is that full submersion or partial? I would imagine full..... ...hmmm...thinking partial for blood flow diversion. i had access to a walk-in -20 F cold storage... and it always pissed me off that it never stopped a hit, just cooled off the hot flash that always came along.... 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 29, 2021 Share Posted October 29, 2021 Ah! well that would make sense I suppose - I was thinking of how going out in freezing weather with head exposed and breathing deeply through the shnoz used to abort some milder attacks for me. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 29, 2021 Share Posted October 29, 2021 Topiramate is am epileptic drug mot the best drug in the world buddy . I had a rew side effects when first taking them i bit of short term memory lose and things seemed to sliw down a bit , but after a while things got better or i just got used to it or my brain just got mashed by it dont know really , i hold down a decent job so can't be that bad Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 29, 2021 Share Posted October 29, 2021 God my spelling is s__t must be the Topiramate 1 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 29, 2021 Share Posted October 29, 2021 7 hours ago, Axel_B said: After the verapamil Just curious if you have tried the rapid release or the ER (extended release)? I am on the ER and many people say that it doesn't help them but the rapid release has been mentioned on the site with pretty good success (not complete cessation but cutting duration and what not). I would definitely start the D3 as it really has positive responses from many on here. 1 Quote Link to comment Share on other sites More sharing options...
Cast Iron Posted November 1, 2021 Share Posted November 1, 2021 On 10/29/2021 at 10:14 PM, jon019 said: ...hmmm...thinking partial for blood flow diversion. i had access to a walk-in -20 F cold storage... and it always pissed me off that it never stopped a hit, just cooled off the hot flash that always came along.... @jon019 @Bejeeber full submersion. I do think that vasoconstriction needs to take place on the whole body, with a partial on only the head exposed is maybe not efficient enough and still allows the rest of the blood vessels to be expanded. think it can be compared with a short of sumatriptan that also affects all the blood vessels. the Wim Hof ice baths work in a similar way, but can only take the cold submersion, not the ice baths. neuro said I need to have clearance from the cardiologist as the amount of verap I take is quite high and ice baths may have an adverse effect on my heart 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 1, 2021 Share Posted November 1, 2021 12 hours ago, Cast Iron said: Wim Hof ice baths work in a similar way OK, so it sounds like maybe the rest of us who aren't currently on verap can just go jump in the (icy) lake. @spiny please let us know your results with this. Actually, if I had a cold pool and needed to abort an attack I think I would totally try this. 1 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted November 1, 2021 Share Posted November 1, 2021 Lol sod that buddy not doing that Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 1, 2021 Share Posted November 1, 2021 How about just plopping into a bathtub full of cold water then @Shaun brearley? , Wuh woh now I might not have an excuse not to try this next time I'm in cycle. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted November 1, 2021 Share Posted November 1, 2021 Im gonna give the hot bath a go . Really dont fancy the cold 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted November 1, 2021 Share Posted November 1, 2021 I was in switzerland skiing in 2003 and fell in a lake nearly killed me with shock Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 1, 2021 Share Posted November 1, 2021 OK so apparently it's not not a preventive. 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted November 1, 2021 Share Posted November 1, 2021 Jeebs, cold and I will try to kill whatever is close by!! Hubs barely survived!!! Hot on the lower parts. As it cools. add more hot. By the end of the hit, it could be waist deep and I was a lobster!!! But, the hit was gone. 1 1 Quote Link to comment Share on other sites More sharing options...
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