Results 1 to 4 of 4

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

Threaded View

  1. #1
    New Community Member
    Join Date
    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.

Similar Threads

  1. possible csf leak?
    By darpa6132002 in forum Cerebrospinal Fluid (CSF) Leak
    Replies: 4
    Last Post: 09-19-2016, 10:43 AM
  2. Previous CSF I have it again?
    By virgin747 in forum Cerebrospinal Fluid (CSF) Leak
    Replies: 1
    Last Post: 12-04-2013, 06:30 AM
  3. Ct confirmed my leak
    By LeakyLaurainwv in forum Cerebrospinal Fluid (CSF) Leak
    Replies: 3
    Last Post: 08-21-2011, 05:30 PM
  4. CSF Leak and Tinnitus
    By LeakingnHissinginPotomac in forum Cerebrospinal Fluid (CSF) Leak
    Replies: 0
    Last Post: 08-16-2011, 09:51 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts

BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.