Chiari Online Support Group

New to support sites

Hi everyone. I was diagnosed 18 months ago. Lots of headaches, trouble sleeping. Pain is worse than at the beginning. I live in New Zealand. I don’t know anyone with Chiari. Not many doctors know much about it.

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Welcome to the group, Bella. Read and ask questions. Good luck in finding a qualified medical team to assist. Remember that if people are not helping it is just that they do not know what to do with you. Chiari and its wonky symptoms are beyond their scope of practice. Do not take it personally (easy, right?) and move on to someone who can.

I am jealous of you being on the other side of the world and being closer to physical therapists trained in courses from the Neuro-orthopedic Institute based in Australia. They are pain gurus in my mind!

Thanks for your encouragement. I’m still getting to grips with Chiari. Lots of people give me advice on what I should be doing which I appreciate but unfortunately they have no idea what it’s like to have headaches 24/7. We still have to live and enjoy life. That is what I have decided to do. Do the things I love doing and appreciate life.push through the tough days and make the most of the better ones. Blessings