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    Jayfly09's Avatar
    Jayfly09 Posts: 1, Reputation: 1
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    #1

    Nov 8, 2013, 08:11 PM
    Spontaneous Spinal Headaches
    Hi, I have been experiencing a postural headache consistently for two weeks now, accompanied by neck stiffness double vision nausea and light sensitivity and hearing loss. The headaches go away when I lay down. I have tried pain medication, topamax, imitrex, prednisone, and had a LP, CT, and MRI with clean results. Keep in mind the headaches started BEFORE my LP. My neurologist suspects spontaneous intracranial hypotension and that there's a CSF leak somewhere. Now the medicines have helped with SOME of the symptoms such as the neck stiffness and intensity of the headaches (as it was a 10 and now is around a 7) but have now developed zapping back pain. Does this mean the medicines are helping the leak? Or just helping with the symptoms? We are thinking of going forward with a blood patch next week. Also, is the back pain related? It is localized to one spot. Thank you.
    joypulv's Avatar
    joypulv Posts: 21,591, Reputation: 2941
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    #2

    Nov 9, 2013, 03:07 AM
    Even 10 specialists together would say that this is beyond the scope of online suggestions.
    It sounds like you are getting good care from a doctor who isn't giving up.

    Do you have a (good quality) BP cuff at home, to take BP both standing and lying down, at set intervals starting with the second you stand or lie down?
    You were able to see a neurologist and have all those tests, all within two weeks, prompting me to ask if you have significant other medical history?
    And a far out question, what happens if you lie down but keep your eyes open, in bright daylight?

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