Intracranial Hypotension or Paroxysmal hemicrania

Posted by josieglow @josieglow, Nov 1 2:33am

HI everyone, first time poster here. Just wondering whether anyone here has had a CSF leak or paroxysmal hemicrania and would be happy to share their symptoms and reaching a diagnosis?
About 5 weeks ago new headache symptoms appeared and have not left 🙁 Incredibly painful searing, throbbing stabbing pain when rolling over in bed, going from sitting to standing, bending down and even slight head movement, otherwise a moderate dull ache, lightheadedness constant. The pain is weird like when I move it takes a few seconds for the searing pain to start and it builds to peak and then tapers off. I have had a CT angiogram which was normal. Next step is to see a neurologist.
I am a 63 year old Fragile X carrier so I have a multiplicity of FX associated conditions going on also including neuropathy. I am from New Zealand and have been lucky enough to have been to the Mayo Clinic in Rochester a few years ago, which was an amazing and helpful experience.
My daughter in law is a neurologist and she thinks there is a possibility of these two conditions now we have ruled out others with CT. Using panadol and just trialing medical CBD to control pain, well at least enough for me to function. Its really affecting my QOL. Thanks in anticipation

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Lisa Lucier, Moderator | @lisalucier | Nov 1 10:16am

Hi, @josieglow - glad you've joined Mayo Clinic Connect and made a first post. It seems like you are dealing with quite a bit of pain and your quality of life is not what you'd want right now.

-One discussion on Mayo Clinic Connect that might be useful for you is:
CSF leak in spine
https://connect.mayoclinic.org/discussion/csf-leak-in-spine/
-Here's a comment in a thread about migraines that discusses paroxysmal hemicrania:
https://connect.mayoclinic.org/comment/993642/
Going to a neurologist next sounds wise. Do you have specific questions you want to ask the neurologist when you get to your appointment?

josieglow | @josieglow | Nov 1 3:30pm

In reply to @lisalucier "Hi, @josieglow - glad you've joined Mayo Clinic Connect and made a first post. It seems..." + (show)

HI Lisa
Thanks for your reply to my post.
I have had a look at the threads in the links you provided, which provided some useful information.
I will ask neurologist about CT Myelogram and DSM.
Other than that, I would like to know 'what's going on, and what are the potential options of management'. Pretty basic questions, but the answer I suspect might not be so easy to answer.
One thing I don't want is to have to use drugs ongoing without knowing what I'm dealing with (there is always a trade off with health and long-term medication)
The thought of having these symptoms for years as was mentioned by other people suffering with a similar thing (whom I have much sympathy for) is very daunting.