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Old 04-10-2014, 11:33 AM
Tinkertoo Tinkertoo is offline
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Join Date: Apr 2014
Posts: 1
8 yr Member
Tinkertoo Tinkertoo is offline
New Member
 
Join Date: Apr 2014
Posts: 1
8 yr Member
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Quote:
Originally Posted by baby_diver View Post
Hello all

I'm reposting my intro below - hope that's ok. Was directed to this subgroup.

I've been trying to research post treatment support for people who've suffered from CSF (cerebrospinal fluid) leaks. Happy to talk to anyone but I'm based in Reading, UK.

I got hit with the symptoms back on 30th November 2011 and although was treated swiftly initially (go NHS! ) including CTs, MRIs, failed 7 attempts at lumbur puncture by a junior doctor, they performed a blood patch which initially worked and then failed after a few days. When the symptoms re-occured they tried to say it was migraine; luckily I 'was seen swiftly privately' instead, and got treatment but the fluid levels took a while to regulate and the whole experience meant I was off work for 3 months, back full time after 4 months.

I guess I was just wondering if anyone has struggled with the after-effects as well of this feeling of not being believed/CSF leaks in general, or whether you've been pain free and they've left you alone.

There's just NO information out there on post blood patch/CSF leak long term effects, etc.. have you found your leaks came back? This was a one off for me so far, I have a small child, and the thought of one day waking up with "THAT pain" again frightens me quite frankly...

Thank you for any insight or thoughts you may have - really appreciate any input.
Hi Baby Diver
I was very interested in your message. I had a lumbar puncture and leak in 2011 following a car accident. I was left in a really bad way following the leak but wasn't given a patch. The headaches subsided but I am however continuing to get strong heart palpitations three years on. These seem to be directly linked to how hydrated I am - hence my interest in a possible ongoing leak.
If I don't drink about 4 litres of water a day I'll get the palpitations at night and if I drink any more than 3 glasses of wine they'll come on very strong. The palpitations give me insomnia. I've been back to the hospital and been checked out my multiple consultants relating to cardiology but they haven't found any cause.
If you have any updates to your enquiries I'd be very grateful if you could share.
Thanks!
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