jon019
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Posts posted by jon019
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....no particular place on head is definitive..... but anywhere the trigeminal nerve goes is a possible. my pain was a straight red hot poker from temple thru eye, into tooth..... ymmv
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7 hours ago, JMK said:
the utter "pointlessness" of excruciating pain that's about nothing.
...yup, part of the curse..."just give me a friggin' reason!" plays in my life library..
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8 hours ago, sam123 said:
I'm not sure how successful the Emgality has been, but interestingly the neurologist has suggested trying taking it as an IV infusion
...that struck me as good thought...why not? haven't heard of for Emgality before but seems might provide enough extra blood serum level to work. will never forget the first methylprednisolone IV that stopped a cycle mid cycle for me. seemed miraculous! alas, never worked again...
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....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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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
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...OXYGEN, OXYGEN, OXYGEN................................
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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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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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....be sure to read dosage instructions for the nasal...some create an endless loop need if over used....
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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...
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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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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...
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...cool vibes for a cool cat...
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....enough....please...
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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
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...yup...sorry X, my response to that stinkin noise would be...
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...try this: Locations | Lincare lots in Mass
...even if they don't accept your insurance go talk to shop mgr...i did self pay half the time..was same cost as insurance copay. Lincare did me right...
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...please do share how you got short term disability....is rare
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...we got a wonky hypothalamus.....google "hypothalamus and immune system"....
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...sorry for the ads, this is a .com so be aware...a bit of confirmation for anti inflammatory we all know. i follow autoimmune info as i have several and believe there is a connection between CH and the immune system....the extent i know not
Autoimmune diseases: Ginger supplements may help manage inflammation (medicalnewstoday.com)
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It’s always the beer!
in General Board
Posted · Edited by jon019
...mee...2 days or 2 weeks post cycle...depending on the need and the courage...