PotatoHead44 Posted September 21, 2022 Share Posted September 21, 2022 Hello, a little back history: I have had cycles in 2018, 2020 and 2022. This current cycle started on the exact date as it did in 2020 and I am under the care of my general MD and a neurologist. My 2018 and 2020 cycles lasted approx. 3 weeks. They started slow, ramped up (3/4 attacks per day) and then petered down and stopped for 2 years. Prednisone didn't work, so I've only been using oral sumatriptan (we are going to try Verapamil for next cycle) and some Advil and Tylenol. This current cycle has been different. We are now in week 5. The attacks stopped at the end of week 3 (like past cycles), but now I am still getting 1 to 2 dull headaches a day that seem to linger much longer than a true 10/10 hit. I'd imagine these are what many of you refer to as "shadows." They are also like clockwork, 12 hours in between. My doctors insist the cycle is ramping down, but it just seems to be morphing and not ending. Again the pain is 2/10 vs a 10/10 for proper attack, but it's still happening. If I take half of a sumatriptan (50mg) it knocks it out, but I am so over taking meds. Has anyone experienced a pattern like this and if so do you think it's better to just take the pain or is it better to knock them out with the .5 sumatriptan? Could the suma be prolonging this cycle? Thank you in advance for your insight and much love to all of you enduring these horrid headaches. Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 21, 2022 Share Posted September 21, 2022 OXYGEN!!!?? 3 Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 21, 2022 Share Posted September 21, 2022 Prednisone didn't work, so I've only been using oral sumatriptan (we are going to try Verapamil for next cycle) and some Advil and Tylenol. ...unusual for pred to not at least interrupt cycle while a prevent kicks in. note that verapamil is very dose dependent, and the lower levels have less chance of success. 480 mg/dy in divided doses seems to be the sweet spot...some go much higher. hopefully your doc willing to up the doses, if needed, to find what works for you. many inexperienced with CH are reluctant to use the dosage we need. immediate release (IR) better results than extended (ER). LOTS of water and fiber to keep GI moving along... ....advil and tylenol basically worthless for CH and care must be taken not to use too much. some folks find they help with shadows (naproxen sorta helped me there on occasion) This current cycle has been different. We are now in week 5. The attacks stopuped at the end of week 3 (like past cycles), but now I am hstill getting 1 to 2 dull headaches a day that seem to linger much longer than a true 10/10 hit. I'd imagine these are what many of you refer to as "shadows." They are also like clockwork, 12 hours in between. ....that sounds more like "subtle" hits than shadows...which most find less predictable than the dang predictable timing hits My doctors insist the cycle is ramping down, but it just seems to be morphing and not ending. Again the pain is 2/10 vs a 10/10 for proper attack, but it's still happening. If I take half of a sumatriptan (50mg) it knocks it out, but I am so over taking meds. Has anyone experienced a pattern like this and if so do you think it's better to just take the pain or is it better to knock them out with the .5 sumatriptan? Could the suma be prolonging this cycle? ...YUP.... it can cause rebounds and extend cycles....your gut feel on meds is correct. OXYGEN has none of these negatives ...fast, easy, and relatively cheaper compared to sumatriptan ...combining (or even alone) an energy drink (minimum 100 mg caffeine/1000 mg taurine) or other high caffeine drink AT FIRST SIGN OF A HIT with the oxygen was my go to....sometimes all by itself was sufficient. ....have you considered or tried the D3 regimen and or busting.... Thank you in advance for your insight and much love to all of you enduring these horrid headaches. 3 Quote Link to comment Share on other sites More sharing options...
PotatoHead44 Posted September 21, 2022 Author Share Posted September 21, 2022 Thank you, I think you're right about the headaches being "subtle hits" and earlier today I just let one rock instead of taking a .5 suma and I'm glad I did. Furthermore, that is the difference from this cycle vs past, I took an exorbitant amount of sumatriptan this cycle. So much that several times the pharmacist objected to my scripts and the doctor had to have a conversation with him to approve. My doctor thought it was going to be like the last, but it was much more persistent causing me to need a lot more suma. I will def be using oxygen for next cycle and thank you for the info about Verapamil and I will def consider the D3 regiment too! Taking caffeine for a hit didn't work, I tried it with a monster and it gave me one of my worst hits. Caffeine afterwards though def made my head feel better. Thank you again for all of the info! 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 21, 2022 Share Posted September 21, 2022 jon' has covered the bases very nicely (as always). A doctor who thinks anyone's current cycle is going to be like their last cycle doesn't have much familiarity with CH. (I'd say the same about a doctor that doesn't prescribe oxygen.) You might benefit from getting to a headache center, if there's one near you. You might want to look at this overview, which has a lot of info about a lot of stuff, including ways to possibly stop hits without oxygen, and things you can try for shadows. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ 3 Quote Link to comment Share on other sites More sharing options...
PotatoHead44 Posted September 22, 2022 Author Share Posted September 22, 2022 Thank you for the info! It is greatly appreciated. Quote Link to comment Share on other sites More sharing options...
PotatoHead44 Posted September 22, 2022 Author Share Posted September 22, 2022 PS If this info helps anyone, I just realized a lot. My current cycle followed the EXACT pattern it did in 2020. It started on August 17th and ended September 1st. After reviewing my headache log, I realized this is the EXACT pattern I am in now (attack wise). They stopped on the same day. The only difference is this time I took A LOT of oral sumatriptan and since the 1st of September I have been getting dull, lingering 2/10 headaches, which makes me think the past two week headaches are the result of so much suma. Who knows, but hopefully this info helps... It is crazy how I've had 3 cycles, 2018, 2020, and 2022 and they all happened in the summer and the past 2 started and stopped on the same days (attack wise). Much love to all. PS I will be getting oxygen and Verapamil for next cycle. 3 Quote Link to comment Share on other sites More sharing options...
PotatoHead44 Posted September 27, 2022 Author Share Posted September 27, 2022 One last question if anyone has feedback: I am now 10/10 cluster attack free for 3 weeks and 1 week without ingesting any sumatriptan. Still, every day between 12-3pm I get a dull headache that starts on top of my head and (sometimes) moves to my temple (sometimes pulse included). Is this just the cycle still rocking? Again, as stated above my past 2 cycles lasted three weeks, but this is now on week 6... Thanks in advance for the feedback. Quote Link to comment Share on other sites More sharing options...
spiny Posted September 28, 2022 Share Posted September 28, 2022 Some have their cycles peter out, others go out with a bang. Have you tried an Excedrin Migraine? They help many with the nagging hangers on. The 'migraine' part means it has caffeine in it. I take Ibuprofen. You can try a cup of coffee, two aspirin, whatever your normal goto is for minor pain. See if that helps and let us know! You do eat lunch, right? Lack of food can cause a headache too!! 2 Quote Link to comment Share on other sites More sharing options...
PotatoHead44 Posted September 29, 2022 Author Share Posted September 29, 2022 Thank you, @spiny! It's so random, my schedule is pretty regular. Wake up, gym (caffeine), eat, start to work and then between 12pm-2pm I get hit with a dull headache (2/10) that usually lasts 30minutes to an hour, then goes away. I haven't taken any sumatriptan or over the counters in a week, but I am still getting hit with a daily. Sometimes on top of head and then others to the right side. I am having an MRI on Monday and going back to Neurologist on Wednesday. It's just so annoying at this point. Like every day, here we go, a dull (but manageable) headache then pretty much nothing. Could be sinus? But the timing makes me think it has to do with my cluster cycle. Again, I haven't had a proper cluster headache in over three weeks and at this point have sworn off all meds. Thanks again. Love to all. 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted September 29, 2022 Share Posted September 29, 2022 I would try coffee at noon then. Just add an extra cup a day and see if it helps. It is food, not med! I had so many 'sinus' infections treated that weren't sinus at all, that I never suspect them at all now. Like many others, I also had the roto rooter sucky one too. Doctors were determined that it was causing my hits. Nope. Glad to know that you are getting a scan! 1 Quote Link to comment Share on other sites More sharing options...
mit12 Posted September 30, 2022 Share Posted September 30, 2022 On 9/28/2022 at 1:01 PM, spiny said: Some have their cycles peter out, others go out with a bang. Have you tried an Excedrin Migraine? They help many with the nagging hangers on. The 'migraine' part means it has caffeine in it. I take Ibuprofen. You can try a cup of coffee, two aspirin, whatever your normal goto is for minor pain. See if that helps and let us know! You do eat lunch, right? Lack of food can cause a headache too!! My go to is 3 to 4 Advil PM followed by a large cup of strong coffee, or an energy drink. 2 Quote Link to comment Share on other sites More sharing options...
PotatoHead44 Posted September 30, 2022 Author Share Posted September 30, 2022 20 hours ago, spiny said: I would try coffee at noon then. Just add an extra cup a day and see if it helps. It is food, not med! I had so many 'sinus' infections treated that weren't sinus at all, that I never suspect them at all now. Like many others, I also had the roto rooter sucky one too. Doctors were determined that it was causing my hits. Nope. Glad to know that you are getting a scan! Thank you! A little stressed about the MRI, but it is what it is. I will try another coffee this afternoon! Thanks! 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted September 30, 2022 Share Posted September 30, 2022 Let me know how that works out for you! Quote Link to comment Share on other sites More sharing options...
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