My father, niece and I all three have had it and had to have surgery because of the symptons were getting really bad. The doctors were surprised it happened in each generation. My niece was only about 5 when she had her surgery. We are doing good now but we do get our headaches back every so often.

Have they suggested decompression surgery if you are having a lot of pain with it? It is quite specialised work, but I understand it can relieve symptoms fairly substantially although to be honest they wont know exactly what they are dealing with until they go in. It's not uncommon for it to present as early onset MS
Not really the reassuring answer you were probably looking for but it is treatable .... usually

Been there, and the pain does get unbearable I'm hoping they find a way for you to get relief. I ended up having surgery cause it was effecting my hands ( at first they thought carpal tunnel). That was in 1998 so many years later I hope they have something not so invasive to help. Good luck at your appointment coming up.

Hi @A MyChronicPainTeam Member I did not realise there was an hereditary element to it although since other bone structure can be no reason why it should not be too. It is really good that they have been able to treat it and at least @A MyChronicPainTeam Member knows that others who have had it have been treated successfully. Makes a difference :)

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My daughter in-law has this you need good doctors to fight this follow thru....help but the criteria is complicated. Prayers for you ,