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Thread: Is CSF leak or sinusitis?

  1. #1

    Default Is CSF leak or sinusitis?

    Hi, I'm Reeta, I'm from the UK and I have a slight problem.

    I have ehlers danlos syndrome, type 3 (hyper mobility) and postural orthostatic tachycardia syndrome.
    If you haven't heard of either then you are in great company. Most Drs haven't heard of EDS though more have heard of POTs. I also suffer from tinnitus.

    I have been to my Drs a few times about an issue I have which is a clear water fluid running from my left nostril and headaches. It happens when I lean over, as if to pick up something from the floor, and sometimes in my sleep- I actually wake up from a headache and literally as I move to get up the fluid runs from my nostril- only my left.
    I don't always get the intense headache (to the point of crying) but do get a dull ache sometimes. I'm unsure if my pain tolerance helps me with this, the EDS causes chronic widespread pain from dislocations and micro trauma to joints- like bad arthritis- so I can handle a LOT of pain before it gets past a level 2/3 on the scale.

    When I say it runs out of my nose, I mean it literally runs and then slows to a drip.
    It's a clear fluid and it doesn't crust up on tissue or clothes like mucus does.

    The headaches I get are like a vice around my head and I get very sound sensitive and it's like my hearing goes into hyper mode and every little noise is magnified and unbearable, there's no light sensitivity. Laying down flat helps but doesn't allievate them. As I suffer from pain all over my body I'm unsure if the neck pain is related to the headaches or just general neck pain.

    Everytime I talk to my gp about it they insist its sinusitis as I seem to have an inflamed/stuffy (but no mucus) nose most of the time- though no other symptoms of sinusitis at all.

    I've tried the nasal sprays but they make no difference to the leaking fluid or my nose. It's not a constant thing either, it might happen for a number of days in a row and then not happen for months.

    I'm really getting bothered by it though- more so the headaches but if it is a CSF leak I know that could be dangerous and lead to possible infections.

    Do my symptoms sound familiar to anyone at all?

  2. #2

    Default

    Hi Reeta,

    I am from the UK also and have had very very similar symptoms.

    I have occasional leakage from my right nostril when leaning over along with slight dizziness and fatigue. I have had CT and MRI scans and had fluid collected for testing all so far negative for CSF. I have seen two ENT specialists and my GP, all say that they can't 100 percent rule out a leak but are certain it isn't one.

    My GP has diagnosed me with health anxiety which I am on medication for but I am just not at all convinced that this is all just anxiety!! My GP says it is sinus issues as well.

    I totally understand your situation with this, it is so frightening! I just don't know what step to take next!

    Are you pursuing it any further?

  3. #3
    New Community Member
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    I have a csf leak from my left nostril... do a beta2 transferrin test... that was the only way anyone believed me. Can u taste anything weird? I can taste something gross. If it isn't coming out my nose, I'm swallowing it. It is positional. Quit the nose spray. I'm getting my MRIs done tomorrow... to confirm csf fluid I did the transferrin test. I had to demand from my ENT dr. They didn't even know how to order it. Mine is a spontaneous csf leak from my left nostril. I have seen a neurosurgeon as well. Waiting on MRIs and Ct scans. Good luck!

  4. #4
    New Community Member
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    Oh I forget another quick way is to buy glucose test strips... we did that in the office...from what I understood... csf will show glucose .... I'm talking for clear fluid.. as u described .. mine is like tears from my left nostril only

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