CapeReef Posted March 1 Share Posted March 1 Hello all, new user here. I've been suffering CH for 2.5 years now. And only known what to call them CH for about 6 months of that. In the beginning they would only last about a week and then disappear for months. Now remissions are only a few days at a time oddly though that always seems to happen when I travel for work. At home I drink 2 cups of coffee every morning. When I travel, I don't bother. Sure enough this seems to be very predictable. I'm currently in day 5 of a remission, after a particularly bad couple of weeks. Going to keep caffeine free and see if I can keep this roll going or if it's just coincidence. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 1 Share Posted March 1 Hi CapeReef, It's sort of the opposite for most. Many of us use caffeine prior to jumping on o2 to help abort an attack. I think it might be a coincidence but you never know.. it could odly be a trigger for you. I hope you stay pain free! 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 1 Share Posted March 1 It does seem odd, but with CH, there's always a surprise. Since you're new to this, you might get some benefit from reading this overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ 3 Quote Link to comment Share on other sites More sharing options...
Amholla3 Posted March 1 Share Posted March 1 2 hours ago, CapeReef said: Hello all, new user here. I've been suffering CH for 2.5 years now. And only known what to call them CH for about 6 months of that. In the beginning they would only last about a week and then disappear for months. Now remissions are only a few days at a time oddly though that always seems to happen when I travel for work. At home I drink 2 cups of coffee every morning. When I travel, I don't bother. Sure enough this seems to be very predictable. I'm currently in day 5 of a remission, after a particularly bad couple of weeks. Going to keep caffeine free and see if I can keep this roll going or if it's just coincidence. When I am in a cycle, caffeine at unusual times will trigger a shadow for me. Like if I drink a soda at 10am rather than at lunch, I will definitely feel it. Same with an evening caffeinated beverage. I usually avoid caffeine out of cycle too since it keeps me awake at night. On the other hand... I am definitely team caffeine to abort! 5 Hour Energy is my go to since it's easy to drink. There is the added benefit of taurine but I'm not sure what role that plays in aborting the hit, I just remembered reading that it's helpful lol. Even at 4am or 8pm, I am able to fall asleep no problem after drinking a 5 Hour Energy and aborting the hit. Sometimes I've even had a 5 hour energy at 8pm and another at 4am and still slept fine once the pain ended. I don't understand it! Best of luck! 3 Quote Link to comment Share on other sites More sharing options...
jon019 Posted March 1 Share Posted March 1 (edited) 1 hour ago, Amholla3 said: When I am in a cycle, caffeine at unusual times will trigger a shadow for me. Like if I drink a soda at 10am rather than at lunch, I will definitely feel it. Same with an evening caffeinated beverage. .....was exactly same.....in cycle only as an abort/O2 enhancer....between typical hit times was a trigger. but out of cycle no problems.. 1 hour ago, Amholla3 said: There is the added benefit of taurine but I'm not sure what role that plays in aborting the hit, I just remembered reading that it's helpful lol. ....vasoactive substance that seems to turbo boost caffeine. some find supplements alone helpful... 1 hour ago, Amholla3 said: Sometimes I've even had a 5 hour energy at 8pm and another at 4am and still slept fine once the pain ended. I don't understand it! ...none of us do...its the dangdest thing but way common for clusterheads... 1 hour ago, Amholla3 said: On the other hand... I am definitely team caffeine to abort! 5 Hour Energy is my go to since it's easy to drink. ....me too...fast, portable, tsa compliant, more caffeine/taurine than many energy drinks w/o the ridiculous gross amount of sugar... Edited March 1 by jon019 6 Quote Link to comment Share on other sites More sharing options...
devonrex Posted March 3 Share Posted March 3 Team caffeine as well, I am on team chronic and go through so many monster 'zeroes' sugar free so not guzzling calories, taurine can act as an anti-inflammatory so I think that is why it helps in conjunction with caffeine. Caffeine has never been a trigger, strong smells (chlorine, bleach, pinesol etc) Alcohol, the rest just after exertion, fluorescent lights can trigger but tend to just ramp it a bit. O2, opioids (does not kill it but rounds off the sharp edges, even a 9 to an 8.5 is a huge jump for these.) been getting high dose lidocaine injections (nerve blocks) all around my eye, bridge of nose, forehead, cheekbone, temple once a week for the last couple months and they also seem to lower the overall pain, but no abort from it. (4% lidocaine in large doses, looks like I have been stung by bees). Everyone here is helpful and so much advise and simply support here. Glad you found us, also a shame you had the need to find us. Welcome to a most horrible club to join. 2 Quote Link to comment Share on other sites More sharing options...
CapeReef Posted March 3 Author Share Posted March 3 11 hours ago, devonrex said: Glad you found us, also a shame you had the need to find us. Welcome to a most horrible club to join. Wow if that doesn't sum it up. Thanks for all the responses and the welcome. From reading, I sure am an odd ball or just in one heck of a coincidence. 7 full days now no caffeine and no attacks. The first time I've been a full week since late December. I did however get the "shadow" I think is what I've seen them called yesterday. Had the tension in my forehead and some pain in my molars. They always signal the start for me and precede that wonderful ice pick in the eye feeling. They were mild though and never quite established into a full out attack. Another thing I find odd about mine is I've read that ibuprofen is not supposed to help. This and Advil cold and sinus have been my go to to fend off the pain since day one when I was trying to figure out the correlational between home and being attack free when I come down to work. Home/Work are North Florida/South Florida. So at first I was thinking allergies in the different zones and because attacks always come with nasal congestion. Quote Link to comment Share on other sites More sharing options...
jon019 Posted March 3 Share Posted March 3 47 minutes ago, CapeReef said: Another thing I find odd about mine is I've read that ibuprofen is not supposed to help. This and Advil cold and sinus have been my go to to fend off the pain since day one when I was trying to figure out the correlational between home and being attack free when I come down to work. Home/Work are North Florida/South Florida. So at first I was thinking allergies in the different zones and because attacks always come with nasal congestion. ...hey, if it works it works! more typical for nsaids to help with shadows. you may have nailed it with the allergies connection. anything that causes inflammation, histamine release, vitamin D3 depletion, hormone releases can be triggers for us. my first few yrs antihistamines were helpful....many find help with Benadryl prior to sleep or even daily during certain cycle parts (will make you sleepy). note that while the nasal congestion could be an allergy symptom.....it is also absolutely typical of cluster autonomic symptoms. i used Tiger Balm inhaling to clear sinuses....didn't affect the hit but cleared the awful congestion that makes a hit even more miserable... 3 Quote Link to comment Share on other sites More sharing options...
CapeReef Posted March 4 Author Share Posted March 4 Well, that was fun while it lasted, last night was NO FUN. On the bright side, I think I'll have a coffee. 3 Quote Link to comment Share on other sites More sharing options...
Amholla3 Posted March 4 Share Posted March 4 So sorry to hear you had a rough night!! I hope things start to get better for you. Regardless, hoping you can at least enjoy the coffee Quote Link to comment Share on other sites More sharing options...
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