Natty have quite a few questions if you dont mind, am so interested how did you find Kjetil, was it a recommendation on another forum or yourself researching? also how did you come across Dr Carroll, through the csf leak forum? Another member on the headache group posted a link to his video which I watched, and thought he was so inspiring, particularly that he was working on imanging not seeing all the leaks he was getting from the POTS clinic.
So was it on Kjetil’s imaging that your leaks were seen? How did you get to Dr Ellis, your own research and asked to go to him? So interesting that Dr Ellis agreed with Kjetil and your neurol about your optic dilating, but the opthalmology didnt!
You asked if my daughter is better lying down, NO! that has been one of the worst symptoms, she hasnt been able to lie flat since her headache began, sleeps literally sitting up with bean bag sausage wrapped round to keep her up; also never been able to bend forward; any exertion ( so has had to walk slowly) all made her headache like going to burst, this all went even worse a year ago, (after going to the dentist for a checkup)and she started to get pain turning her head and feels sick, struggled to walk up stairs, even walking really slowly now is terrible, so something started to go worse and has really stuck there. She also developed really bad back ache, after her headache started, they havent got to the bottom, at the moment saying ’ central sensitisation’ due to chronic headache. We are waiting for a rhuematology appointment.
Interestingly after looking in the resources here, how the styloids might crystalise? there was a reference to systemic conditions …( some medical word I can’t remember) I clicked through and it came to ankolysing spondylatis as a possible systemic cause of crystalising, . AS is an arthiritis of the spine, hips more common in boys, but is in girls also and can start in your teens, so be very interested to see if that( or likely others we have not heard of) can be considered. She has to have a boiling hot water bottle all the time on her back, just to cope.
Our thinking possibly is, thinking out of the box; could be a virus( she had about 6 months before her headache, then started aching in joints which has stayed)so it could have set off this arthritis; and if she has ES vascular, then the vagus nerve could be suffering, which has let alot of inflammation happen and run riot, and given the persisitng headache, as well as pinching a vein/ artery of the ESV.
So the more we find, it actually means we can think back wards, up to now everyone seemed to focus on the headache, and she just isnt getting better, and medicines giving more headache, but not taking all the other symptoms and seeing if they are linked - until this prof neurology we now have who is starting to try and join up
So grateful of all of you, and all insights trully welcomed
Here’s hoping …