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jon019

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Posts posted by jon019

  1. ....unlikely that cooking oil in and of itself would be a trigger....however, old/used/stale/high temp abused cooking oils have high levels of free fatty acids which, among other things, are bitter, darken the oil, cause greasy mouthfeel and are just all around nasty. it wouldn't surprise that among these there could be triggers due to vasoactivity. minimize re use of fry oil, old oil, or restaurant foods deep fried in never changed oil (you will know by taste and mouthfeel). high volume food service uses oil fast enough to minimize excessive free fatty acids, as well as being able to afford frequent oil changes. low volume stores use til gone and frequently do not clean out food particles from fryer, which just worsens the problem. 

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  2. hiya Mox...good to hear from you...very happy for your success!

    ...yup, that is exactly what happened to me on about 3-4 cycles over 30+ yrs. the first time i was sure i was dead with a stroke. 0-10-0 in 1-2 minutes. took me to my knees. once i knew i wasn't dieing i wished for that kind of cycle every time....quick and gone and get this shit out of the way fast. the difference for me was no other CH symptoms, except maybe the mental/physical fatigue intense pain causes.

    ...i dunno what SUNCT is so can't comment there. didn't seem to me a different HA type, same tho more intense pain, in exactly same spots...just a different presentation of CH...

    best

    j

    • Like 1
  3. On 3/13/2024 at 11:44 PM, Snowflake said:

    Does any one know if oxygen helps for panic attacks?

    .....i think its the breathing part with or w/o oxygen. while not a panic attack in the true sense my initial reaction to a hit, yrs ago, was panic and thrashing and swearing and working myself into a frenzy. it took a while but i finally figured this over the top reaction was getting me nowhere. all this to say i adopted a verrrry slow deep breathing technique when aborting with O2 that had a remarkably calming, almost meditative effect and actually used an lpm similar to yours. aborts became quicker and calmer! your breathe and hold is another favorite....try this slow/deep....maybe even w/o the O2.

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  4. 10 minutes ago, Celtic Cluster said:

    I get a prescription for my O2 but I don’t think it goes through the insurnace and have to pay $15 a bottle

    ...might not make any difference....when i self paid it was $14/e-tank....when insurance covered it was a $14 co-pay. they got us coming and going...

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  5. 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...

    • Like 3
  6. 6 hours ago, charleywildtree said:

    Apologies in advance if I missed this. I recently started drinking N.A. Beer. It seems to set off a CH similar to alcoholic beer. Thoughts??

    ...probably tyramine found in fermented products and/or the 0.5% alcohol that is allowed. one of the few 10 hits i've had was after na wine...hurt so bad i forgot to breathe....

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  7. 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...

    • Like 6
  8. Hello friends, 

    Anyone here have experience with Lexapro anti-depressant as a trigger. just started and getting some fierce shadows. pharmacist said headache a common side effect but CH and "headache" are different animals. i can do those...not so much CH. 

    PM replies fine.

    Thanks

    jon

    • Sad 1
  9. Hello.

    ...my mother was a Special Ed teacher, it is a subject dear to my heart...not the least of it being the times i saw her come home in tears...sometimes joy but usually frustration. no need to bore with details, but it is an underfunded, understaffed, underappreciated, under most everything but the front line folks who give their heart and life and mostly LOVE to the effort...

    ....i say this not in disagreement with this initiative at all, but to CAUTION to be VERY careful what is proposed/enacted.  these kids absolutely need a type of care and instruction beyond what most "regular" classrooms can provide. i wonder if the experience of Covid has advised school districts on the needs of kids outside the "norm". i doubt it...but i don't know. what i do know is that regulating that these kids be classified as "special needs" w/o careful wording, will, in many cases, result in some districts dumping them into classes with developmentally disabled kids far below age normal. kids requiring one on one, sometimes very basic instruction, and frequently repeatedly. 

    ...most anyone in the headache community realizes that it is not a cognitive issue we are dealing with, and placing these kids in the environment i describe will leave them with insufficient attention and instruction based on what is practical and possible. CAREFUL  please......

    best

    jon

    • Like 6
  10. 10 hours ago, Racer1_NC said:

    It's good thing to try various techniques. What works for one doesn't work for all. I talk to people that have successful aborts in a short amount of time using methods that would just serve to piss me off while getting hit. It works for them and that's all that counts in my book.

    I would recommend a complete exhale in every breathing cycle as a starting point. Where someone goes from there will vary with the individual....and maybe from hit to hit.

    THIS!  ^^^^^^^^^^

    • Like 4
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