Sunday, 25 April 2010

How I discovered I had chiari

So on the 26th March I woke up with a slight headache. I took some paracetamol and that shut it up. Had it for the next few days, nothing too bad, just a slight nagging that would go away with regular painkillers. I didn't think too much of it and spent the weekend out clubbing with friends.

Come the Monday morning I was still suffering so I booked an opticians appointment. I've had problems with my eyes since I was about 13. I am short sighted and have a squint in both eyes. The only time I have ever had a headache is when my glasses are due for an update.

Went on the Tuesday and the optician seemed worried about my headache, as by this point I had also gained double vision to add to my symptom list, which would increase in length quite rapidly over the next 24 hours. She was very nice and gave me my new pescription. She told me that my pescription had almost doubled in the 3 months since my last eye test. She also said she was concerned about my headache symptoms and told me to go to a doctor or A and E if my symptoms got worse.

Went to work the next day and was feeling very spaced out. I can't really remember anything about this day. Worryingly I don't rememer driving home. My headache had got worse throughout the day so after getting home at about 3.30 I had a nap in a dark room. Then when I stood up I passed out and was sick.

My mum then told me to get to A and E. My friend took me, I felt a bit silly and thought I would be told to go home and take more painkillers. I was seen by a triage nurse and rushed straight through to major incidents and put in a private room, as it turns out they thought I had meningitis when I first arrived. Ended up on morphine due to the pain, I would be on regular morphine for the next week and a half. My heart was at 150BPM and the doctors were concerned about this along with my pain, vomiting and constant spaced outness?!
Had an emergancy CT scan and was taken through to acute care. I spent the next 2 weeks in the nurological center being monitored. During this time I had regular blood tests and a lumber puncture. This was the worst experiance of my life, felt like my brain was being sucked out of my head.
Was told I had chiari, which was spotted on my CT.

I am currently waiting for an "urgent" MRI scan. Urgent in NHS terms means leaving me in pain and unable to do anything. I've been out of hospital now for almost 2 weeks and still have not got a date for my MRI scan. If I don't receive anything by Monday I will start hassling.

So that's all, I'm stuck in limbo. Not able to work or drive but not unwell enough to be in hospital and most days I am able to get out and about for at least a few hours. I think some people think I'm not that unwell, like if I tell them my brain is falling out I'm not supposed to be able to go out. They don't realise its a relief to get out, as it means the pain in my head is giving me a little break. I can't go far, to the shops or be driven to a friends house, but that's better than nothing.

Currently my symptoms are:
Double vision
Pressure in my ears
Neck pain
Top of my back hurts when the headache is really bad
Short term memory loss
Fuzzy head
I sometimes space out, I can loose hours doing nothing.
I get obsessed with silly things like playing solitare on my phone (I'm not normally such a geek, honest)
I also am having slight difficulty swallowing, like I forget for a moment how to swallow.

Medication I am currently on:
Gabapentin 100mg three times per day
Paracetamol 1000mg four times per day
Dihydocodine 60mg four times per day
Ranitidine 150mg twice per day
Amatriptlyine 60mg at night
Folic acid 5mg in the morning
Ibuprofen when needed up to four times per day
This just about controls the pain. It's still there, but I can ignore it. It gets worse at night, around 8pm and it wakes me up during the night quite regularly.

Next update when I get an answer about my MRI.

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