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Thread: A Leak or Not a Leak, that is the question...

  1. #1
    New Community Member
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    Nov 2013
    Inverness, Scotland

    Lightbulb A Leak or Not a Leak, that is the question...

    Hi Folks,

    My name is Dàibhidh (Scots Gaelic for David) and I live in Scotland. I’m in my early thirties and, until June 2013, I was a very active person, involved in white water kayaking, mountain biking, hiking etc. I worked hard and played hard, and enjoyed life.

    Then one morning I woke up and as soon as I got into the shower, a small but niggling headache began. Over that day – Day One - it got worse, but still ‘manageable’. I got home from work, lay down to watch TV, felt a little better and went to bed.

    The next day I woke up feeling ok, but as soon as I got up, the headache began building again. Throughout Day Two it got progressively worse – this time along with woozy feelings in my head – and I had to leave work early. I took pain killers, but they didn’t make any difference. I lay down on the sofa and the headache reduced after a few minutes. Went to bed early.

    Day Three, I woke up and, you guessed it, as soon as I got up, the headache reappeared. This time it was a lot more painful – back of head and around eyes - and I was aware that my vision was a wee bit blurry. As the day progressed, the pain got worse. Probably about 6-7 out of 10. Went to the doctor who treated me for a tension headache.

    A couple of days passed and all the time the headache got worse. The pain was so extreme I could barely walk the 3m between my bed and the en suite bathroom without needing to lie down immediately. I would have to almost lie on the bathroom floor just to clean my teeth. My vision began to get much worse and pain started behind eyes/when moving eyes. Wooziness increased. I began to get a pressure sensation in my ears and head. Stiff neck at times. Sometimes ear ache too and a dull pain in my jaw. When I lay down, the symptom would all-but diappear.

    This is how I was for about two months – with symptoms ebbing and flowing, some days a little better, others worse - until my doctor finally accepted that it was more than just a tension headache and, eventually, I was admitted to hospital for further tests. After two weeks in hospital, 1 CT scan and 3 MRI scans head/neck/spine (two normal, one MRI myleography), the neurologist suspected low pressure headaches (and associated symptoms) due to a CSF leak, but he has found no clear evidence of a leak. The only hint was ‘very mild enhancement (non-specific)’ at the bottom rear of my brain.

    It is now almost 6 months since my symptoms started and I still don’t have a clear diagnosis. While the head pain has reduced and I am able on a good day to walk for about an hour as opposed to a few seconds before I have to lie down, I am still unable to work, I cannot do any sport or activities and can’t drive. My vision is constantly blurry and the longer I’m sitting or standing, the greater the ear popping, head-in-a-vice sensations, blurry vision etc. Things have seemed to improve a wee bit over the months, but then I’ll have a relapse and something will get worse again (this week its blurred vision and stabbing headaches that are getting worse again).

    The neurologist says he wants to do a Radio-nuclide cisternograpy in London (only place in the UK that can do it), but I’m still waiting for this. It’ll be a month or two away yet. I have not had any treatment (no blind blood patches etc.) and pain killers just don’t touch the pain. I’ve tried caffeine, but while some days it seems like it might be helping, others it doesn’t seem to do anything.

    I’m a pretty philosophical person and I’m not in a mad panic (mainly because panicking doesn’t help anything and keeping positive is half the battle), but I am looking to get advice from others who’ve had leaks. I’m young, I’m determined and I’m not going to let this beat me, but it is getting very frustrating and worrying nonetheless; not least as the neurologist says I have classic leak symptoms, but he can’t find the spot.

    I have no signs of connective tissue problems or any other reason for a spontaneous leak occurring. I have always been in good health. I was white water kayaking the night before the headaches started (playboating, paddling off a waterfall etc.) and I’m convinced that this is how it all started, but the doctors say they don’t think it could have...I don’t think they fully understand the type of kayaking I do!

    • Front headache
    • Rear headache
    • Random stabbing headaches
    • Pain/pressure behind eyes (sometimes one, sometimes both)
    • Pain when moving eyes
    • Blurred vision
    • Slight greying of vision in left eye when pain greatest
    • Over-saturation of colours
    • Occasional pressure in sinuses
    • Pressure sensation in my head
    • Popping ears/pressure in ears
    • Ear ache
    • Pain in neck/stiff neck
    • Woozy/spaced out feeling
    • Head feels physically heavy at times

    Guys, does I sound like I have a leak, or could there be another explanation for these symptoms?

    I did also bash the back of my neck quite heavily with my boat the night before – could I have don’t nerve or muscle damage, for example?

    I’ve also had a stiff jaw on and off, a couple of times I’ve woken and it’s locked. Could this be something to do with it, or just another unrelated ailment??!

    Main issue is that it’s all postural – only a problem when I’m standing - which does point towards a leak.

    My symptoms often seem to ease in the evening. Sometimes if I push points in my neck, I can relieve the pain in my head. Symptoms often seem to get worse the day after I do any lifting or ‘strenuous’ activity.

    The pain and symptoms were horrendous for the first few months, but now they’re more manageable. While I still can’t return to my job, I don’t have to lie in bed all day. Is this a sign of things slowly improving, can a leak slowly improve and then heal? Or is it just ebbing and flowing? What have other folk experienced?

    Any advice or thoughts would be appreciated. My neurologist is lovely, but his English is not great and I just don’t understand him half of the time. There doesn’t seem to be a huge amount of knowledge of CSK leaks in the UK and I just don’t know if I’m getting all the medical help I should be.

    Many thanks,

    Last edited by daibhidh; 11-24-2013 at 12:59 PM.

  2. #2


    Hello Daibhidh,

    For what it's worth, my neurologist said that sometimes you really can't see a leak, that in 85% of cases the MRI comes back completely normal, and that those are the good cases because it means the leak is small, you don't appear to have other problems, and those tend to respond better to blood patches.

    If you have trouble communicating with your doctor and you want to stay with this doctor, maybe you could try writing things out. If you bring some paper with you, you could have prewritten your questions or key phrases (like "my jaw is locked - I sometimes cannot move my jaw - is this related?"). And he might write his answers back to you. Or he could take the paper home and google translate it or something.

    I'm not sure if people know what causes CSF leaks. But I think it's like, boxers and football players don't all have CSF leaks, so it's not just getting thrown around or bopped on the head that makes a leak?

    Edit: I forgot to add - I think it sounds like a CSF leak only because it goes away when you're lying down. If you just stay lying down, do you start to feel basically healthy (except for having lain around for so long)? But of course it's possible that it's something else. I'm not a doctor. Hopefully your neurologist has done more reading up on it than I have.
    Last edited by elephantm; 12-04-2013 at 07:15 AM.

  3. #3


    Headache is more common in our family. my mom most of the time suffer from headache. Sometimes , i have this problem , mostly during my starvation. I can not tolerate that pain .

  4. #4


    HI David,
    I'm so sorry for your suffering and I hope the doctors find some way to give you back your health. I've just started reading this forum so I'm new here. I live in South Florida and also would appreciate any thoughts. I don't normally have headaches or migraines but in January, I got the worst headaches of my life. i was trying to get in shape so I did two weeks of personal training while my husband was away so it was some intense ab work and the day before it all started, I went mountain biking on a group ride on a dusty, cold morning and I sprinted hard for the last mile. It makes me wonder if I overdid it even though I felt fine until the next afternoon. By day 2 of the headaches, it was like a vise on top of my head and down the sides. I was so nauseous by day three that I could hardly function. I was taking all kinds of medicines but nothing worked. I went to the ER on day 4 and they gave me a catscan, some meds and sent me home with a tension headache. I had a whooshing sound in my right ear as well as a swollen lymph node under my right arm with a low grade fever (which I still have). I went through all kinds of meds: Ibuprofen, Imitrex, Fioricet, lots of Zofran, Soma, some strong painkillers... but nothing really worked. Then the first weekend in Jan, I lost the ability to focus my right eye-the nerve stopped working. My nausea was intense for a few weeks but the headaches gradually lessened but I haven't had a single day go by without one. Now they seem to be more focused up my neck and back of my head. If I stand up it's like a big whooshing pain running up my head in the back. The first neurologist sent me for an MRI of the brain and one of my head. Came back perfectly normal. I tried acupuncture. I went to a neuro opthalmologist who suspected a csf leak. He sent me for an MRI of the brain and orbitz w/wo contrast and he told me where to go for it so he could have a specific neuro radiologist read it. It was not read by the person requested and came back with a notation referencing low pressure in the brain but it was downplayed almost as irrelevant. When he got the report back from the neuro radiologist, he said I have a leak in my spinal fluid. He wants me to go to a neurologist and have a blood patch. I don't like the neurologist info so I am looking for the right person to go to. I would think they have to find the leak before they randomly do a blood patch so I have a lot to learn before my next visit with a new neurologist. I am also a caregiver for my husband so I want to make good choices. My vision is the same (double) but my eye seems to be moving back toward center a bit so I think that's a good sign. My neck pain wasn't there in the first month so I'm concerned. Thank you for any thoughts you may have. Jeanne

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