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Posts posted by xBoss

  1. 11 hours ago, jon019 said:

    .....i'll chime in too....same fears but dang it, there was stuff to do! more than 20 trips and never hit once in air or just after. carried imi or zomig and energy drink on plane just in case, oxygen at the destination usually through Lincare travel program. you adapt, clusterheads are good at that! get your well prepared first one out of the way....it gets less anxiety inducing every time after that......

    The only time flying got me was when I was dumb enough to drink a couple beers before a flight. It was a nightmare! I flew about 60 times that year and the rest were fine. Crazy thing was it was just one giant attack with no cycle.

  2. If you really do have CH you are light years ahead of about 99% of all sufferers since most of us went through years of hell to figure it out and get diagnosed so you have that going for you. AND you are on cluster busters!

    • Like 5
  3. 18 hours ago, Darren said:

    If there's one thing that I've learned over the years; it's that just when you think you have cluster headaches figured out...they change. Unfortunately, I don't you can ever know with any certainty. You just have to hope for the best, but, be prepared for the worst. 

    Yep, no normal for me anymore. They have shifted from early in the year to mid to late and back again.

    • Like 1
  4. 10 hours ago, KIF said:

    Hi I’m new. Not firmly diagnosed by my neurologist yet (says he’s not convinced) but I and an ER doctor suspect cluster. Mine have always been side locked to the right side today I was woken up with one of the worst ones I’ve ever had on my right side with poker like eye pain and Lots of Tearing and red eye. It subsided within 30 minutes and I was able to go back to sleep Then about two hours later woke up with my left eye just mildly irritated and watering and puffy. I’ve never noticed both sides affected before, although I didn’t have severe pain on the left more irritated . Does this happen to others? Thanks 

    Sure sounds like CH

  5. Hey, Sorry you are hurting. Try a super hot soak or shower but I like the soaks. They can abort the attack just like oxygen can and quickly. It does not work for everybody but it works for me! GL Warrior.




    • Like 3
  6. On 3/7/2022 at 8:31 AM, BustOrNothing said:

    One of my attacks came after blowing a candle out and breathing in the smoke of the wicks. After that, no blowing out candles only capping them to put it out. This lead to cooking things at lower heat to not burn it and avoiding smoke entirely. 

    Especially hard because smoking Mari makes the stomach and mood feel better but don’t want to do it so that I don’t trigger a CH.

    Burning cooking oil used to trigger me instantly but the strange thing is that it stopped being a trigger a couple years ago.

    • Like 2
  7. 8 hours ago, EmpiresBurn said:

    and yes please before everyone jumps on the O2 being the best. I live in the US and that's just not happening at this current time I've gone down that road with 2 regular doctors and 3 Neurologist and 1 Headache specialist. It's currently not in the cards for me as an option. 

    You can always go gonzo and do the welding oxygen. The route I am about to take...

    • Like 1
  8. 3 hours ago, EmpiresBurn said:

    Thanks everyone. I'm still trying to figure out this beast. January was pretty much 1 hit a day at nighttime and now as we have progressed into February it's moved to an afternoon hit and nighttime. So I feel it's ramping up to a climax. Hopefully at least. 

    Not too bad at all. My worst is about 7 hits a day but there are people that have 14 or more.

    • Like 1
  9. 7 minutes ago, EmpiresBurn said:

    So this probably isn't a sign of a cycle coming to an end?

    It's so different for each person but for me it ramps up before it tapers down. You may be at the beginning of stage two of three etc. 

    • Like 1
  10. 1 hour ago, EmpiresBurn said:

    When they switch do they usually continue at the original time as well or switch from one time to the other?

    They switch all over the place time wise. Usually it's a couple weeks of right on time three times a day starting at 9pm then they go to every time you fall asleep all night then switch to random day hits. Early on in my cluster career they were like clockwork for the most part but it just keeps changing. Oh, and I have never used pharma for CH but I was trying to bust so many that was a factor.

    • Like 1
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