15-year-old with constant headache and LP pressure of 23, any experience?

[Sezza123123]

My daughter is 15 and had lumbar puncture yesterday opening pressure was 23 which they said was normal (apparently this can be a grey area as normal is upto 20 ) she has had an MRI and they found just a slight increase in fluid behind her eyes, she has had eyes checked all ok (she can't pass visual field test). She has been diagnosed with cfs/me and possible endometriosis she has a constant headache everyday, dizzy spells and episodes only lasting few seconds of blurriness. Has anyone ever dealt with these symptoms or the same LP pressure and what happened ? Thanks 😊

Has she seen a neurologist? Could be chronic migraine or another headache disorder. I think headache is also a side effect of LP. Happy to recommend an amazing private neurologist if you want x

Thank you she's currently on the list for neurology, yeah she has said her headaches are worse than usual today after having LP but it's just a constant headache for her everyday 😔

Is she overweight?

No she's not

If you can afford it, see Dr Nick Silver through Spire. It’s £475 for initial consultation but he he THE consultant to see for headache disorders. He has three videos online and I self diagnosed and self referred after 6 years. I’ll pop the links in a separate message. Feel free to ignore x I feel for her: it’s hard enough as an adult xx

These links do work, I’ve checked them.

Watch or listen in order. Watching is good but most of the information is verbal and only supported by rather than dependent on the slide presentation.

Also, the first one is THE one to watch so start with that and maybe then watch the others if you’re limited for time.

Good luck ❤️

Also, I’ve just reread your post. Her symptoms are exactly like mine. I had a diagnosis of CFS 6 years ago. Dr Silver’s letters say that this “label” likely reflects chronic migraine. His CV on the Spire website states treatment for CFS - by which I take to mean untreated chronic migraine.

Does she have a history of travel sickness?

Any family history of migraine?

Does she suffer from PMS?

Raynauds? (Fingers going white in the cold) xxx

https://www.spirehealthcare.com/consultant-profiles/dr-nicholas-silver-c3311615/

Also, I’m guessing as they have excluded high/low ICP, they are thinking she must have a primary headache disorder rather than a secondary one x. My chronic migraine went undiagnosed / misdiagnosed for 6 years when a simple preventative from primary care might have stopped or limited its progression. For this reason, I’d say watch the videos and if you recognise the symptoms, get her seen quickly. NHS neurology appts are ridiculously slow x Sorry for the multiple posts; just trying to help xxx