A.I. Generated Image of Cluster Headache

[dmlonghorn]

I asked an A.I. image generator to convey the dark agony of a cluster headache...

 

[CyMan]

Pretty good and normally I would have said brilliant but recently I was ina consultation with my consultant who is the UK leading specialist on CH and she asked me 'what does it actually feel like'? I then realised how little she truly understood us. She read the books and carried outvsome experiments but ultimately it's just a topic of interest for her, not a desperate desire to have a normal life. 

In response to her question i said 'it's like being axed in the skull 8 times a day and still trying to carry on with life as best you can'. 

Her response was 'oh wow I've never heard it put like that '

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

[jon019]

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