This is terrible. I am so sorry that you are getting no support. While the community can’t offer financial assistance, I encourage you to join the Facebook group for this organization. There are over 9,000 members, and it’s very active – more so than the forums here at this time. There may even be somebody in your area that could point you to a better doctor. Where are you located?
Here’s the Facebook group. https://www.facebook.com/groups/CHSupport/
You have to answer three simple questions to be admitted. Honestly, I have met some of the most important people in my life through this group. I’ve met a lot of people with CH in person through it too.
One of the most comforting things is that feeling of community – knowing that you aren’t the only one who feels this way.
I hope you join and engage and find the support you need.