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Thread: Trigeminal Neuralgia and CSF leak

  1. #1
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    Default Trigeminal Neuralgia and CSF leak

    I was diagnosed several years ago with a CSF leak and at the beginning had double vision for a couple of months until the fluid build back up slightly and the brain pushed off of the nerve that was causing the double vision. Here is a question for anyone out there......Over the past couple of months I have had pain on the right side of my face and after many appointments ( dental and doctor ), a couple of antibiotics to rule out sinus infection and finally another MRI scan last Sunday to rule out a tumor, my doctor said that she thinks I have Trigeminal Neuralgia. I am absolutely convinced that I have leaked more fluid than normal, and that the brain is pushing on the Trigeminal Nerve causing this right sided face pain. I have a new doctor who is not really familiar with CSF leaks so for anyone out there....does this sound reasonable to determine that the lack of fluid causing the brain to sink and push on a nerve might cause this pain. I would hate to think on top of my CSF leak and all that goes with that, that I have something new as well. My doctor suggested some medication for pain, which I am not doing yet as I want to try doing bed rest again to try to replenish the fluid.

    If anyone can weigh in on this to either help me dismiss this connection or agree with it, I would appreciate any help......Christa

  2. #2

    Default

    Christa, I can't help you with your diagnosis although I'm much more familiar with both leaks and facial pain than I'd ever wanted to be. None of these diagnoses were bulls eyes IFAIK (in my case). Someone said that there are 200 (or was it 400?) reasons for headache. So be skeptical of the diagnoses you get unless it's very clear cut. It can be really useful to read other headache forums just to see how much many of struggle to get a reasonable diagnosis.

    One thing that's helpful too is to record your own symptoms, perhaps write little memos for yourself. They might become useful later on as you try to understand how your condition changes. Patterns may show up, who knows. You might even try to get your doctors' notes from earlier on to see how they described your pain back then.

    good luck

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