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  • 8 months later...
Posted
17 hours ago, CyMan said:

Moral of the story.. we CHs need to stick together because nobody understands us not even the so called medical specialists who treat us 

...NOBODY who hasn't been "hit" understands...it's just not possible...and not something i ever held against..

....the best HA specialist i ever had listened to my description: "pain so bad you can't believe its possible to survive, the worst ones...forgetting to breathe, i can't count the times i just wanted to die". she sucked in her breath like at least she partly understood. then said, which made me cry..."i treat this VERY aggressively, which she did!..probably too aggressively. but we figured out OXYGEN, Zomig ns as last resort, and (personally) energy drinks which she forbid because "we just don't know enough about taurine" (i did anyway, just had to)....

...but YES!...we are our own best, and frequently only advocates. what i've learned here and ch dot com have been life savers...

best

jon

  • Like 3

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