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Showing content with the highest reputation on 07/10/2020 in all areas

  1. Hi Omar I am a Canadian in Montreal and newly diagnosed (formally this year). This cycle has come on strong and hard, multiple daily attacks, 8 weeks so far. I am early in my journey treating this but I am also a research scientist (Immunologist) and have reviewed the literature on psilocyban/LSD even before I became a CH patient. I am making plans as we speak to try a busting treatment. You are welcome to contact me if you are interested in discussing my experience. Julie
    2 points
  2. Hi Tom, I have chronic paroxysmal hemicrania. I do not have attacks all the time but in recurrent blocks of 2-3 days. When it's active, I can easily do +20 attacks a day. Average attack duration is 10 minutes. I have also migraine and such an attack series always start with a light migraine that then escalates. 100 mg indomethacin stops it completely, I mean the hemicrania attacks... the migraine is not affected by that and just continue. For migraine, I use oxygen which -very atypical- abort nearly all my attacks. Oxygen and indomethacin make me now nearly 100 % painfree. what doses of indocin do you take ? I had no effect on 75 mg, 150 was much better but I did 3 x 50. I changed that to start with 100 and then 50 8 hours later and that worked much better ! So I would advise you to experiment a bit with how you divide the doses. I have no side-effects from indocin and it cancels the attacks completely; which should normally be the expected result if you have CPH. You can try oxygen but I can tell you for CPH, it will make the headache a bit more bearable but don't expect a miracle. And anyway, attacks only take 10 min so until you opened your bottle and start breathing; the attack is already over. When I have CPH attacks I never use oxygen. Something that often can work for CPH is topiramate. Maybe you can ask to give that a try. But really, this ugly indocin should be your friend. Previous month, I had one occasion where I felt a new series was coming but I did not take my 100 mg indocin on time... well, a few hours later I ended up in the ICU begging they would do whatever to stop the pain ! siegfried
    1 point
  3. What you are doing with the O2 - inhale, hold, and exhale with a crunch seems to work best for most of us. Not being able to get enough O2 per breath sucks. You need the cadence that works for you and plenty of O2 to maintain that rhythm that is most effective for you. It is often the case that a 25lpm regulator is needed. So, I am not surprised that the tank with the 25lpm works better for you. If you can outrun it, you need a higher flow rate. If you still have a shadow when you quit the O2, the hit will return for most if not all of us. And when you are PF, do your post breathing as well.I have walked away from my tank with a 'minor' shadow, only to have it ramp right back up and I do a bat turn back to the O2. It needs to be completely gone for me and then 5 minutes of post to remain PF for a some number of hours. And heading to a new locale can begin a cycle sometimes. So, I suggest that you keep the Benadryl in the mix. Maybe only at night when you are traveling, but once there, go back to taking the ones during the day if possible. The different pollen can be a big problem. ATB and Welcome to the site!!!
    1 point
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