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Thread: Headaches are driving me crazy...

  1. #1
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    Default Headaches are driving me crazy...

    I am at the end of my tether with headaches. I have had headaches on and off for about three years but since December 2010 they have got much worse in intensity and have changed from the norm. I had 12 days of constant headache that stopped last week and I woke up this morning and it was there again.I told someone who said I should look up CSF leaks.

    If I tell you my symptoms, can you tell me what you think please, seeing as you are all suffering with this.

    Headache made much worse by standing and lately even just by sitting. Made worse by coughing and sneezing. Gets better when I lay down - but dull headache remains.

    Lots of hearing issues with my left ear since the beginning of this year too but seems to coincide with the headaches. Last week I had intermittent hearing in the left ear, lots of tinnitus left ear (high pitched sound and a hissing), popping sound in my left ear, painful hearing with certain noises. I was pretty scared when my hearing went last week - it was like having headphones on but there was a faulty connection in the left side, and turning on and off.

    Edit to add, I am also aware of a whooshing noise - like I can hear the blood whooshing through the back of my skull and neck with my heartbeat.

    Really nauseous to the point of vomiting esp when I brush my teeth (this never happened before last week) and my right nostril run like crazy.

    This morning, even straightening my head up made the headache worse. I have been getting a horrid salty taste down my throat today.

    I was given an MRI brachial plexus as they thought I had thoracic outlet syndrome as I was getting shoulder, neck and arm pain (left arm)and also numbness in my hand constantly since March 19th 2011. The MRI was clear of any compression in that area.

    I have serious stiff neck pain (not all the time but daily) which is worse when I get headaches(it feels like my spine is getting caught on my skull)- had an MRI and it showed MINIMAL bone spurs not enough to cause this pain and symptoms.

    I am woken in the night by tremors in my upper arm so much so that my arm is really aching and stiff the next morning.

    And I get really sensitve smell - things are just disgustingly strong - normally I have a poor sense of smell.

    I have had painful pins and needles in the back/top of my scalp a few times too.

    I have been diagnosed with ehlers danlos and autonomic dysfunction and read that CSF leaks can be related with ehlers danlos.

    I am due for a neuro appointment in London in a few months but these headaches have me worried.

    I know there are no docs on here, but friendly advice would be appreciated.

    Lou
    Last edited by Peglegs; 09-27-2011 at 02:57 AM.

  2. #2
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    First of all, I would say to take care of yourself, by avoiding positions and actions that bring on the headaches, and also to ease your pain with medicine. Keep checking with your doctors, to follow up diagnosis and treatment, even with general practitioners, if need be, until that neuro appointment. Hopefully, some readers who have relevant experience will post soon with useful information.

  3. #3
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    Yes, it would be good to look into CSF leaks.

  4. #4
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    Your symptoms sound suspicious to me for a CSF leak: positional h/a, tinnitus, hearing changes. With having Ehlers-Danlos it only adds to the suspicion.

    You have already had a couple of MRI's. Does the C-Spine MRI show the base of your brain? Often the scan goes up high enough to see the cerebellum and you can see if it is sagging below the base of the skull (foramen magnum). This is called a "Chiari Malformation" which can be genetic but can also be acquired if there is a CSF leak. It often is seen in ED patients and it is thought that the compression of the brainstem is the cause of the autonomic instability.

    You need to get to see a neurologist or neurosurgeon about this. A "few months" seems an awfully long time to wait. Perhaps your family doctor can help move things along? Hopefully you can get an opinion, investigations and treatment organized in a more timely fashion.

    My CSF leak headaches felt like someone was squeezing me at the back of my neck. My empathy with your symptoms.

  5. #5
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    Hi and thanks for your timely replies. Unfortunately I do not have access to the MRI so am not sure what it shows. The Neuro hospital is the only autonomic unit in the UK so has a huge waiting list - however I did call them and asked to be placed on the 'cancellation shortlist'. I have been getting surges of extremely high blood pressure so they want me to have a tilt table test. I did go to my local GP last week and he told me to go back to him if the headaches continued or if anything else 'odd' happens. Since I saw him last week I have had vomiting on brushing teeth and just the awful headache yesterday. The thing is is that I get so many strange symptoms I do not know what is autonomic and what isn't.

    If you have a leak, are the headaches not ALL the time, everyday. Mine seem to go in batches - like the 12 days. Then they go for a while and come back.

    Not sure if this is relevant but I did notice yesterday that when I stood up the headaches got worse straight away, horrendously worse, dropped a bit,(but still much much worse than when laying down) but as oon as I sat down, the pain intensified again for about a minute until I lay down.

    It takes about a minute of laying down for the headaches to ease (but they do not go completely and stay at a dull level).

    Xtcds1 my headaches are at the back/top of my head neck but I don't know how to describe the pain - I know it makes me wince.

    Does any one else get either a cold/hot (burning) liquid sensation at the base of skull/top of neck?? If so what could this be?

    Thanks again for all the replies, Lou

  6. #6
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    There are a lot of descriptions of headaches from CSF leaks, everyone feels things differently. For me it was like an "ice cream headache".

    Only you can make the decision if you are willing to wait for your turn at the consultant. Polite persistence often will move things along quicker if needed.

    For what it's worth here are the diagnostic criteria neurologists use when listening to your history to decide if it is a spontaneous CSF leak or not:

    A. Diffuse and/or dull headache that worsens within 15 minutes after sitting or standing, fulfilling criterion D and with 1 of the following:
    1. Neck stiffness
    2. Tinnitus
    3. Hypacusia
    4. Photophobia
    5. Nausea

    B. At least 1 of the following:
    1. Evidence of low CSF pressure on MRI
    2. Evidence of CSF leakage on conventional myelography, CT myelography, or cisternography
    3. CSF opening pressure 60 mm H2O or less in sitting position

    C. No history of dural puncture or other cause of CSF fistula

    D. Headache resolves within 72 hours after epidural blood patching

  7. #7
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    Hi Xtcds1

    Is hypacusia the same as hyperaccusis? My doc said he thinks this is why my ears hurt with certain noises. If it is then I have all the list A. Are the headaches constant as mine are not - they tend to come in batches.

  8. #8
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    Hi Xtcds1

    Is hypacusia the same as hyperaccusis? My doc said he thinks this is why my ears hurt with certain noises. If it is then I have all the list A. Are the headaches constant as mine are not - they tend to come in batches.

  9. #9
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    Sorry, I think I made a typo there. It is hyperacusis.

    It could well be you leak intermittently hence the "batch" headaches.

    Hopefully you will get some answers and therapy soon! Best wishes.

  10. #10
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    Hopefully Xtcds. Thanks for your input.

    Another strange thing I have noticed, this morning when I stood up, my head was really painful, then eased but I nipped to the toilet and when I sat down, the pain got really bad. Stood up, it wax ok but then when I sat down again it started - the complete opposite of the other day. It lasted about 45 mins then stopped completely (thankfully). Something is odd I know.

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