So helpful - thanks CHfather!

[Mum3115]

Such a great help and resource for newbies. Several PMs back and forth and I’ve gained a  wealth of information on this brutal condition! 

[CHfather]

Thank you.  How's your son doing?

Edited August 20, 2018 by CHfather

[MoxieGirl]

The people here totally rock! To say they saved my life is not an exaggeration.

MG

[Mum3115]

 How’s he doing? He’s on day 6 of the vitamin D loading dose and has had 2 kip 8 headaches.  however we still think we need to give it time. 

[CHfather]

Well, we know that his D level is still very low, so indeed you do have to give it time.  The oxygen and trex he was prescribed today will almost surely make such fierce attacks very, very unlikely in the future, and getting his D level up will benefit him in future cycles (if he has them) or in this cycle if it continues for very long.  Soon his worst suffering will be a thing of the past.  I'm not saying that anyone with CH can or should ever consider himself/herself "lucky," but he got a quick diagnosis, a good doctor, and other good advice, and hope of a treatment (Aimovig) that might eliminate his attacks, all of which is true of only a very small percentage of people with CH (the average time just to get a correct diagnosis is 3-5 years).  No consolation when he is suffering and you are suffering, too, but a very good thing.

[Mum3115]

You are 100% correct CHFather. I do indeed feel blessed in so many ways - that my son had a fast diagnosis and options for treatment. Then to have this community as a support - I feel blessed. So so blessed.