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Showing content with the highest reputation on 01/15/2023 in Posts
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I don't think the walking has any real effect on CH as far as prevention with the exception of a short term abort/reprieve. On some of my super long 3-4hr. attacks I will take a swift walk to get a little "banger break" but they always come back as soon as I sit down and relax for more than a minute or so. Consistent sleep is a biggie for me, interrupted schedule always has me shadowing super bad the morning after. Anyhow.. two cents for what it's worth.4 points
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Well, there are triggers, in the strictest sense of that word. For many, epinephrine (anesthetic used in dental work and other situations) will create an attack, in or out of cycle. Nitroglycerine is used in experiments to trigger attacks in people who are not in cycle. For some/many, alcohol will bring on an attack outside of a person's "regular interval" attack schedule while in cycle, to the extent that such regularity actually exists. (And maybe a little outside of a cycle, too -- seems like a lot of people who think their cycle has ended find out from the "beer test" that it isn't -- certainly at this point they are not having attacks at regular intervals, or they wouldn't think their cycle might be over.) Overall, in the list you provided, maybe you're just naming things differently -- if something makes an attack worse and/or longer, or brings on an unexpected attack, I think we have put it in the category of a "trigger," but maybe it should be called a "worsener." Whatever they are called, they are things to be avoided (in general, though not all of them for everyone). I knew a person with CH who could drink anything alcoholic, any time including in cycle, and get not any effect on attacks. I know a lot of people consider stress a factor, and I also knew a person who, like jon', had their longest attack-free period when under very significant stress. Generalizing about CH can be risky. Just for the record, I also know someone who stayed away from caffeine at all times except when in cycle to help directly abort an attack. It wasn't that caffeine drunk at other times would trigger anything, just that this person found that the abortive effect was stronger when that was the only time they drank caffeine. More importantly to me, I have to say that if you are having so many attacks, and some of them so long, maybe we can add some suggestions to the ones you have offered to provide. Oxygen, as jon' says, being the first but not the only. This file contains some suggestions that I gathered from this group's experience: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/3 points
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A real trigger for me too (and plenty of others), hence the motto for some while in cycle: "Stay stressed".3 points
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...hi ft...welcome! very interesting post...thanks, herein my comments... Cluster Headaches has no triggers. ...gonna have to disagree....aint no absolutes with CH except the pain. lotsa triggers for me...., but, like you say...when IN cycle They attack in regular intervals. ....definition of CH....then it changes... Certain foods and alcoholic drinks will make the attack periods last longer and the headaches much more intense. .....naw, not for me.... 35 yrs....a hit was a hit no matter the cause... A headache that last 10 to 15 minutes with a beer in your system might last a few hours. ...if my hits hits were 10-15 mins i wouldn't even be posting....90 mins every damn time....tho several cycles the hits were 0-10-0 in 2-3 mins, i was very willing to accept that over unaborted 90 mins.... Alcohol and chocolate for me can trigger an attack while in a cluster period - i got ralnot while I am in remission. Alcohol is the worst. Avoid it at all cost while going through a cluster period. All kinds. Alcohol will only make things worst. YUP! Eats dry soups and teas often. Stay hydrated. ...absolutely but watch them dry soup mixes.....lots with msg (massive trigger for many) in various hidden forms. hydration is critical for CH and many other issues.... Responsibly consume caffeine such as hot coffee. It helps; each individual might have to figure out how to use coffee for their own selves. ....caffeine at the wrong time for me was a trigger.....as an abort ONLY, in the form of 2 oz energy drink, vital. folks really do need to figure this.... A warm shower during an attack can help.LY, i ...hottest setting i could stand on hit spot helped as long as i could stand....hit was back full force when stopped... Relaxation is also needed. ....a trigger for me....20 yrs of hits 20 mins AFTER work stress stopped nearly every day. relaxation in the form of deep/slow breathing of oxygen at first sign of hit, enhanced with energy drink was my salvation... Stress does not cause clusters; stress causes the attacks to last longer and makes it take longer for us to return to remission. ...different strokes for different folks...stress was ALWAYS a prevent for me.....cortisol/adrenaline? dunno. my longest remission was while caring for Ma her last days...and will executor. days after that 5-6 months....BLAM! hits were back to "normal" If you are an anxious person pre- and post cluster periods you may be subject to panicky feelings; panic attacks. This is part it this disease. The pain is intense and during periods you had then will executorve to take time to deal with your feelings so that you can expedite a return to remission. ...the mental aspects of dealing with CH are incredibly important. i considered maintaining sanity thru this nightmare as a lifetime achievement.... You have to remain active and have a regular sleep pattern and wind down after activities slowly - never to fast. ...ok...i walked 5-16 mi/dy on the job, which felt great, but not any effect on CH. maintaining a consistent sleep routine, actually any routine, was very important for me.... I had not had an attack since Oct. 2021 until a little before Christmas Day 2022. I am about three weeks into a cluster period now. Sometimes I get about 8 - 10 attacks a day imainly at night and some early in morning around 9:00 am. Most lasting about 30 minutes and some lasting longer up to 3 hours. I have had these a long time, about 20 years and can share remedies that might helpful to people. Thanks for listening and have a wonderful day. ....do you use oxygen? life changing abortive for me. please do share, we depend on it... best jon3 points
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May you have a wonderful day too fulltime! My concern is that you do not have O2, which is the number one abortive out there! That is important enough that it should never be omitted! I am glad that you have found the methods that suit you to control your CH. I do wish that you had a decent, reliable way to abort your hits though. It is confusing that you say 'Clusters have no triggers', then state triggers that you personally have. You saying that these are only triggers when you are in cycle? That makes sense. But there are some things that will trigger a hit even out of cycle, so please consider those too. They can be devastating.2 points
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Uff.. I'll start with apologizing for my weak moment. My older lab Abby Doo has been home and injured for nearly two weeks. My husband and I have been rotating office and home time to ensure she is not left alone as she has a torn tendon in her rt rear leg and can't make it far to potty. My home is covered in potty pads, my husband and I are sleeping on an air mattress down stairs to be with her because using the stairs is out of the question, my sleep schedule is out the window at the moment due to being awoken with the need to go and my stress is through the roof! I had an attack last Friday because the cluster bunny managed to somehow get through my barriers. I dosed with a good deal of seeds and have been ok since but my goodness I am a wreck between the 3 emergency visits to our 24/hr. animal hospital, the run around to get her set for surgery, the worries of her being put under at 11 years of age and the body aches from in-home camping... My shadows are out of control and my moral is lacking. Not sure why i am posting this other than anxt. Anyhow thanks for putting up with me . My animals are my children... Rant over.1 point
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LP3, only those of us in this hell can understand your rage and feelings of hopelessness. But DO NOT give in to those feelings. You did well to vent to your brothers and sisters on here. We all get it. I dosed this morning at 4 am and then stood in the kitchen about an hour ago and wept as a KIP 8/9 hit me again. I was devastated. I could hear laughter and happiness in the next room as family celebrated-just as it should be. . The beast had once again reared its ugly head on one of the holiest times of the year for our family. I hate being made the center of attention when the beast interrupts everyone’s life - not just mine. No one complains because they understand-as much as they can anyway AND because they love me After the entire family prayed for me I was humiliated by once again being the center of attention. I was grateful for the love but once again I had been crushed by the beast. However, I somehow found the strength to get back into the fight So I open the forums and your post is the first one I see. Surprisingly I wasn’t discouraged by it but my first thought was LP3 needs us. Of course, so many had responded that very day to you with kindness and understanding that only a fellow cluster head can have. it dawned on me that is what keeps us all going in those dark moments: the fact that we’re not alone, that someone somewhere needs to hear that someone else understands, and that there is no way in hell we will let each other down. thank you for your post and I hope you had a wonderful holiday weekend-despite the beast.1 point
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Rage as much as you want @lp3, but remember life is for living . Don't let the beast win buddy .We are all here for you when your in a bad place1 point