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Showing content with the highest reputation on 09/22/2022 in all areas

  1. 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 points
  2. Hi folks I made this contraption to save on O2. It's seems to be working so far perfectly. Easy trigger. Just thought I would throw this out there to help others save when exhaling as we lose alot of o2 during this time. Flow rate I'm using is 8 litres per minute. I used the trigger from a plant sprayer. Works well. Good luck if you are looking to do the same. Use zip ties to get it to hold tightly at the main sections. Snowflake YouCut_20220922_175607174.mp4
    2 points
  3. 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.
    2 points
  4. 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!
    1 point
  5. 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.
    1 point
  6. Thanks a lot @Snowflake; i´ll take a look at the information section. How long did it take for you to pass that first phase with the D3 regimen? I´ve been free for a few months, but this last episode really scared me. I had only 5 yesterday, 2 today, but I have a phantom pain that is not going away. The only thing different in my day was starting taking D3. So I assume htat was the trigger. I was wondering if it was worth it, so thanks a lot for sharing your experience with me. M.
    1 point
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