Discussions By Condition: I cannot get a diagnosis.

Can't walk for more than 45mins

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: allie181
  • November 5, 2006
  • 01:26 AM

For the past 10 days I've been bedridden (I tried to go to work 2 days last week and only lasted a few hours before nearly collapsing).


When I stand up and walk for about 30mins I get a blinding headache across my head (in a straight line above my eyebrows) and through my right eye that even strong painkillers don't ease. (On a pain scale it is definately a 9 or 10 out of 10, and I normally have a good pain threshold). It only eases up if I lie flat on my back for about 15mins or more.
If I try and push myself and stay up longer I get nauseous, dizzy and develop photophobia. My mind also becomes 'cloudy' and I find it difficult to think.
I think the headache gets worse if I'm holding a bag over my shoulder. (I went out for an hour today. After 15 mins I felt the headache coming on so I gave my bag to a friend to hold. My headache eased a little and I was able to last for almost an hour before I absolutely had to lie down.)
About a week before this started I had a bit of a fever, a slight headache and was really tired (I slept for an entire weekend; I went to sleep on Friday after work and remained in bed until I got up for work on Monday morning. During that time I was awake for maybe a total of 6 hours.) I went to the dr on the Monday and he thought I just had a virus.I've seen my dr a couple of times and he has no idea what is going on and says he has never heard of a "positional headache" like this.

I've had two CT scans of my brain which revealed 'some minimal fluid in the posterior air cell in the right mastoid'. My dr says this could cause headaches but not to the degree I'm experiencing them, and lying down shouldn't make any difference.

My dr has put me on a course of antibiotics hoping that the fluid in my right mastoid is maybe just an infection. I've been on the antibiotics for 3 days now and so far it doesn't seem to have made much of a difference.

Does anyone have any ideas? I really must go back to work (as a secretary) tomorrow and I'm terrified of experiencing more blinding headaches. I tried to force myself to stay at work last week and nearly collapsed with the pain and nausea. (I honestly thought I was dying.)

If "Dr Gregory House" was real I would go to him because I am that desperate for a solution.

p.s. I'm wondering if maybe there could be a problem with my spine or neck... (If I am unable to manage at work tomorrow I'm going to ask my dr to do scans of my back and neck. I may also ask him to refer me for a spinal tap to rule out viral meningitis.)

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  • I just got out of hospital. I was first diagnosed with a CSF leak. This diagnosis was based purely on symptoms as the MRI did not show a leak (although apparently this is not uncommon). I was treated with a blood patch (10mls of blood was taken from me and then injected into my spine). This procedure made me soooo sick and I can honestly say I thought I was dying. Several days later the headache upon standing had resolved but had been replaced by a chronic migraine which in fact got worse when I laid down (the opposite of before). After a week of rest the headache/migraine was still there. I was then treated with a 'subcutaneous lignocaine infusion' (lignocaine 2g in 80mls of saline was administered at a rate of 6ml per hour). This treatment continued for 7 days. It took several days to start working but gradually I noticed a difference. At about day 5 it got worse and then on days 6 & 7 I got a lot better. I have now been released from hospital. My neurologist has diagnosed me as suffering from migraines. I'd apparently had it my whole life (25 yrs) but had simply experienced other symptoms of migraines (visual disturbances, noise/light sensitivity etc) rather than the actual migraines themselves, which is why I'd never been diagnosed before. The bump on my head and the blood patch for the CSF leak probably changed this and now I'll experience the occasional migraine, but this can be managed with medication. Hopefully I'll not experience such a severe attack. NOTE 1: I suffer Marfans Syndrome. My first neurologist said this had no effect on CSF leaks. My subsequent neurologist said this is incorrect; Marfans are susceptible to spontaneous CSF leaks. NOTE 2: If there are any people with neurological problems living on the Gold Coast, Australia, I HIGHLY recommend you seek treatment from Dr Max Williams, Neurologist. He is BRILLIANT. He is an older doctor with a traditional bedside manner. (My first neurologist, Dr Melinda Pascoe, admitted me to hospital and I was lucky to see her once every 5 days or so, even though she practiced in the same building!!! Dr Williams came in to see me at the same time EVERY morning including weekends, and he doesn't even practice at the hospital that I was in!!! I cannot speak highly enough of him!)
    allie181 2 Replies
    • December 7, 2006
    • 00:54 AM
    • 0
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