Hi Barnabus,
From my experience, just telling like it is, is the best way forward. I am very open with my condition towards my coworkers, manager, family, friends etc... Things I mostly tell are like
It's a very rare condition, a neurological disorder that only a few people have. I was unlucky to drew the bad fate and now have to deal with it and it will not go away anytime soon
I tell how an attack feels, how 'clusters' work and that there are fixed periods that I am good and others that I am much worse. Sometimes I let them see a youtube video on how an attack looks like
I also talk about the medications we are using: oxygen, verapamil, medrol, triptans etc... all heavy stuff; so next time they won't recommend you an aspirin
I usually say also that I am still lucky I can have a more or less normal life with this. Many CH sufferers are completely disabled. It's a heavy condition to deal with.
No need to downplay but just stay objective and don't fall into self-pity or compare yourself openly with others with other conditions. Just tell the facts, not your interpretation of the facts.
This way I have actually never encountered anybody who told me to take an aspirin, or lay a bit on my bed or something because they have some background of what it is. They know it's not a usual headache. If they do not have this information, you can not expect people to be aware and react in a right way. There are so many diseases out there and unfortunately cluster headache contains the word 'headache' so that's what they think it is...
Paroxismale hemicrania patients are better off... although the condition is nearly identical, the name sounds very scary and people won't think of a headache
Best Regards !
siegfried