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Spontaneous CSF Leak Causing Severe Postural Headache - Misdiagnosed as Tension Headache

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Spontaneous CSF Leak Misdiagnosed Causing Severe Postural Headache Misdiagnosed as aTension Headache



 I'm currently lying in bed in tears after reading your story at

Itís the first thing I have seen which makes me feel validated and describes the pain in a way that lots of people could relate to.  The biggest thing is that I feel like I can stop doubting myself and my ability to cope with pain.  I have had amazing support from my partner and family but I have felt very alone and have tried to cope and put on a facade to stop them worrying too much.  Whenever Iím alone I have spent my time in tears before pulling myself together again and getting on with the day.  I can only cope with one day at a time or I feel completely overwhelmed.  Getting from one hour to the next via cups of strong coffee is the only thing I can do.  I should be due shares in Starbucks (other brands are available!)... The staffs get my double shot drink ready without asking now.  I used to love coffee as a treat to start the day.  Now I hate it, it's like medicine but it's the only hint of respite apart from lying on my back for an hour or so.  NOTHING takes the pain away.  Coffee and lying horizontal only help.

My story so far:

On Friday 1st April 2011 my headache came on like a bolt from the blue.  One minute I was walking through the hallway in my house, the next I was grasping my head and reeling from a pain like being hit on the head with an iron bar.  I have never felt pain like it.

I have never suffered from any type of headaches and thought it was maybe a severe migraine and went to bed.  No pain killers I tried worked at all.  I couldn't even bear to lie on my side or have a pillow beneath my head.  Getting up to go to the toilet terrified me as I knew I would be overcome by the pain and collapse on the floor again. I stayed in bed all of Friday and Saturday.

On the Sunday I started to get spasms in my neck and back and started to get really scared.  Called NHS 24 and paramedics were sent out to me.  They said it was probably a migraine but I should call again if it got any worse and they left again.

I called my GP surgery at 8am on the Monday morning and someone called me back at 4.30pm saying a prescription for aspirin and co-caramel was waiting for my partner to collect.  The duty doctor didn't feel the need to visit me at home.  These drugs did nothing for me.

On toes morn I started to vomit and I couldn't take any more.  I called the doctors' surgery again and spoke to my own GP who arranged for an ambulance to take me to hospital for tests.

I was kept in overnight and given a CT scan and lumbar puncture to rule out aneurysms, tumours and meningitis.  They tried codeine and morphine for the pain but nothing took it away in the slightest.  I was then discharged by a general medicine consultant who told me it was probably a trapped nerve in my neck.  I knew it was not anything like this but I was tired explaining to so many medical professionals and not being heard.

2 weeks after the headache came on I was reduced to tears lying on the waiting room floor of my GP surgery.  I was prescribed amitriptyline which (at last) gave me a tiny bit of relief.  Over the next few weeks I gradually increased the dosage from 10 to 30mg.

Four weeks after being discharged from the hospital (almost 5 weeks since headache came on) I saw the same general medicine consultant again who insisted it was a tension headache and I should gradually increase the amitriptyline to 50mg and see him in 12 weeks.  I went back to work feeling like a pathetic wretch and although the drugs gave me enough relief to stand up, I was still in constant pain and became exhausted very quickly. 

When I saw him 12 weeks later I was not coping at all and became very tearful.  I told him I had looked into my symptoms and was there any possibility I could have a CSF leak?  he told me 'my dear, your distress is disproportionate to your pain' and 'that is exceptionally rare and that's NOT what you have - as far as Iím concerned you have a tension headache with migraines symptoms'  however, he eventually agreed to refer me to one of his 'neurology chums' but could give me no indication of timescales for this.  So, I did lots of rooting around on my own and harassed his secretary until I found out who I was being referred to and contacted the neurologist myself.  I paid to see him privately and his first diagnosis was... low CSF pressure!

Its 6 months since this struck and I now have a diagnosis.  But I don't have a cure.  as this didn't happen due to an epidural or lumbar puncture,  we don't know if it's due to a leak and where that may be, or if it's due to lack of production of CSF.

Iím going to see a consultant anaesthetist on Monday (26th set 2011) to discuss how we can try to find out what's going on and what can be done.

I have spent the last 6 months in constant debilitating pain with what feels like no help at all until I took matters into my own hands and stopped taking standard medical advice.  I have constantly doubted myself and my ability to cope with simple tension headache pain.  And because of that I didn't feel I could go to my employers to ask for more time off or amended hours (would you change your management structure to allow time off for someone's tension headache?)

Now I feel I can start asking the right questions and looking into possibilities more positively and less desperately.  And I can make the changes in my life that I need to in order to better cope with day to day life while I have this pain.

Iíve done some major crying today. I am a snotty mess.  But I feel like a weight has been lifted.


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