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Original poster

Cfs leak!

28 replies

Princesslucky1 · 11/03/2021 17:09

Has anyone experienced this? It was confirmed today I have one it started after a lumber puncture I had 9 weeks ago!! It’s absolute torture the pressure in my head is unreal. Blood patch next week to try and stop it

OP posts:
FuzzyPuffling · 11/03/2021 17:14

Oh I thought this was going to be some fun and entertaining thread about some cheeky fuckers and a leaky tap. Disappointed.

But sorry to hear your back is not behaving, and hope it all gets sorted very soon.

Original poster
Princesslucky1 · 11/03/2021 17:16

Haha I wish it was😂 no it’s the brain

OP posts:
AnneTwacky · 11/03/2021 17:18

Oh no. Sounds awful. 😞 Hope you're feeling better soon.

Whirlwind14 · 11/03/2021 17:18

Ouch! A friend had one after an epidural when she had her last baby. Her appointment for the blood patch was on the Monday but after lying down all weekend (easy peasy with a newborn and toddler Confused) it sorted itself!

Hope you’re better soon Flowers

Watto1 · 11/03/2021 17:19

I had this after an epidural. Worst headache ever whenever I wasn’t lying flat on my back. That was fun with a newborn! The blood patch was fine and only took a few minutes. I had to lay flat afterwards for an hour or so if I recall correctly. The blood patch worked immediately. The relief to sit up without a blinding headache was immense. Hope all goes well for you Flowers

willibald · 11/03/2021 17:21

I had one! Felt a lot better after the blood patch. My headache was so bad I was vomiting.

Original poster
Princesslucky1 · 11/03/2021 17:24

Thank you so much everyone. I can’t believe it’s still happening worst 9 weeks ever I didn’t realise the cause

OP posts:
Watto1 · 11/03/2021 17:29

9 weeks! You poor thing. Mine was ‘only’ 5 days and that was bad enough.

Jemma2907 · 11/03/2021 17:46

I had one 6 weeks after spinal surgery. It was so rare, the details of it went into a medical journal. The tear happened during sex! I had to have surgery to repair it and I was in hospital for 3 weeks. It took me 6 months to recover as the 2nd surgery messed up my back, it kept going into spasm at the slightest movement so that I couldn't even move in bed, let alone get up and walk. I also ended up with an infection in my spine which took 12 weeks to clear. It was one of the worst times of my life, I was only 27. My case was extremely rare, normally people can heal by themselves or a quick surgery to fix it. I really do sympathise with you over the pain though, its indescribable.

flower1677 · 11/03/2021 18:14

Caffeine is also supposed to help but the blood patch will be you saviour

SplendidSuns1000 · 11/03/2021 18:46

Laying on your back and drinking caffeine seems to help. A friend had one after an epidural and suffered for weeks with doctors not diagnosing it!

Original poster
Princesslucky1 · 11/03/2021 18:55

Yes coffee and coke and chocolate does help but once I stand up it’s back in a few minutes. Gemma that sounds awful glad u ok now. The reason I had spinal tap cos I’m ill with other symptoms and now this on top of it. Hopefully blood patch fixes all and I can get back to normal

OP posts:
Utilityroomenvy · 11/03/2021 19:00

Yes I had one post-epidural. It was left for a few days to heal naturally but no such luck so it was the blood patch for me. The headache I could cope with as it disappeared on lying down, not being able to hear people properly as everything sounded underwater was horrid. I felt so detached from everyone as well. It was the oddest sensation.

NeedanIdea · 11/03/2021 19:06

Hugs, it's horrible. My DP experienced this at Christmas, gushes of water came out of his nose! He was rushed to A&E and he was told it will heal up on its own. It was so scary! But he didn't feel any pain though. It has healed up but it took several weeks. x

Leah2005 · 11/03/2021 19:20

Sounds dreadful. What is a blood patch? I don't know which sounds worse.

FrankieDettol · 11/03/2021 19:27

I had an 8 day crippling headache after a LP. Its like nothing else so you have my sympathy. Hope the patch fixes it.

voxnihili · 11/03/2021 19:29

I had one post lumbar puncture for meningitis. The pain from the csf leak was worse than the meningitis. I was in so much pain I couldn’t even sit up. I didn’t have to have a blood patch in the end but once things started improving the initial recovery was quick. The head pain resolved really quickly although I was left with pain in my back for a while. Good luck - hope you feel better soon

Original poster
Princesslucky1 · 11/03/2021 19:39

Leah it’s a epidural blood patch they take my blood and inject it in spine I think to seal the hole.
Voxnihili glad yours went on it’s own I was really hoping that would happen but after 9 weeks I don’t think it will. Pain was horrible first 3 weeks now I just feel like someone is sitting on my head just pressure really

OP posts:
NotPaloma · 11/03/2021 19:42

Oh poor you. I had this after multiple epidurals during birth a few months ago. The blood patch sorted it but wore off after 48 hrs so I had to have it redone. I then ended up with excruciating nerve like / sciatica pain in my cocyxx for 4 weeks.

FickleFingerOfCake · 11/03/2021 19:48

I too had a lumbar puncture for suspected meningitis, when I was 16... when I was discharged from hospital the headache that started at home was the worst pain I have ever felt, I thought I was about to die. My parents, who were understandably alarmed, called the hospital and were told that this is an expected after effect. Yeah, an after effect THAT NOT A SINGLE DOCTOR HAD MENTIONED!!!! Shock

Rexasaurus · 11/03/2021 20:39

I had meningitis about 3/4 years ago. I was starting to feel a little better. Had a lumbar puncture as they didn’t have a diagnosis at that point & then couldn’t sit up for a week.

Had problems for 2 years. Not one doctor has ever mentioned a CFS leak. Confused

Original poster
Princesslucky1 · 11/03/2021 20:57

Gosh so many with similar. I’ve never even heard of it until lately. The hosp I attended was useless with info as well and I went to gp on Monday and explained all my symptoms and she diagnosed sinus put me on steroids and antibiotics. It was only the neurologist that has confirmed thank god because I rang back gp and she wouldn’t believe I could have a leak. It seems like it’s often misdiagnosed unfortunately

OP posts:
JaceLancs · 11/03/2021 21:08

I was really unwell with this for nearly 6 months - had 3 failed blood patches before 4th actually worked
Numerous brain scans MRI etc
It turned out in the end that my occasional bad back following a car accident 20 years earlier was much worse than they thought and the blood patches were being put in too far away from the leak and the spine injury was stopping them working
The last one that worked I also had to lay completely flat for 48 hours catheterised nil by mouth etc just to make sure it worked
Every sympathy OP hope you get it sorted soon

B33Fr33 · 11/03/2021 22:09

My sister in law had this after back surgery. They sorted it and she was fine, no more headaches being the very key thing. Best wishes.

Confusedmeanderings · 12/03/2021 00:48

I had this too after the removal of a tumour from my spine. It did sort itself out but I had to lay flat for several days.