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Original poster

CFS leak

21 replies

IHateLegDay · 16/09/2023 21:45

Posting here for traffic.

I have a suspected CSF leak and an urgent MRI booked for Thursday.
I'm on strict bed rest and keeping up fluids and caffeine intake but nothing is helping with the headache, not even morphine.

Has anyone had this before and come out the other side unscathed? Does anyone have any recommendations for pain relief?
How long until you got better?

Thanks in advance!

OP posts:
Original poster
IHateLegDay · 16/09/2023 21:47

The title should read CSF leak 🙈

OP posts:
Original poster
IHateLegDay · 16/09/2023 22:19

Bump?

OP posts:
voxnihili · 16/09/2023 22:34

Hi

Sorry to hear you have this. I had one many years ago after a lumbar puncture. I cannot describe the pain. The first 5 days were the worst, I couldn’t even get to the toilet without being carried. Very high dose codeine helped. After 5 days I started to feel more human but recovery was slow. I was back at work about a month later but was slow for about 6 months. Still get headaches now (17 years later) but nothing too major. The headaches could be related to the meningitis rather than the cfs leak.

I hope you feel better soon.

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Original poster
IHateLegDay · 16/09/2023 22:54

That sounds awful! I'm glad you've recovered!
Mine is unfortunately spontaneous but all my symptoms are textbook.
I'll try getting some strong codeine and see if it helps 😊

Thank you for sharing xx

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Lizzypet · 16/09/2023 22:58

You've probably already been advised to do this, but make sure you're lying completely flat on the bed (no pillow). I also had this after a lumbar puncture, it's horrible, hope you're sorted soon.

Original poster
IHateLegDay · 16/09/2023 23:04

Lizzypet · 16/09/2023 22:58

You've probably already been advised to do this, but make sure you're lying completely flat on the bed (no pillow). I also had this after a lumbar puncture, it's horrible, hope you're sorted soon.

I actually hadn't been advised this so thank you for sharing! I've just been told bed rest, fluids and caffeine for at least until my MRI on Thursday.

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Lizzypet · 16/09/2023 23:07

IHateLegDay · 16/09/2023 23:04

I actually hadn't been advised this so thank you for sharing! I've just been told bed rest, fluids and caffeine for at least until my MRI on Thursday.

Show quote history

This was recommended for me as the leak was in my spine - so gravity keeps more of the fluid in your head!

Lizzypet · 16/09/2023 23:11

So I guess it depends where they think the leak is? That knew it was from my spine as I'd had the lumbar puncture. So maybe check with your Dr whether lying flat is recommended for you.

TadpoleNerys · 16/09/2023 23:15

I am so very sorry to hear that you have a suspected CSF leak. I had one many years ago following a lumbar puncture, it was just at the onset of the pandemic so I could not access treatment quickly and no one would give me a MRI scan. I ended up diagnosed with a low pressure headache from having low csf pressure and spent 5 months on bed rest not able to sit or stand up without experiencing severe headache pain.

I was initially advised to drink 2 litre of fluids a day and rest in bed completely flat but my symptoms never improved. my neurologist then encouraged me to drink lots of cups of coffee and that never helped the symptoms improve either.

I did recover from the low pressure csf leak following a epidural blood patch patch which I had about 3 and a half months after the symptoms began, it took a while for the blood patch to work.

As I had the low pressure for so long, my brain suffered trauma and became used to having a headache. I now suffer with severe daily migraines and also visual symptoms. the visual symptoms started straight away following the lumbar puncture and have never went away three years later.

I hope you get treated soon and that your symptoms are taken seriously.Please be advised that if a CSF leak does not show up on a MRI scan, that doesn't mean you haven't got one. I saw a private CSF leak doctor who advised me that regarding the MRI scans. My MRI scan I later had (three months after the onset of my symptoms) was clear but the private CSF specialist neurologist did a thorough neurological examination on me and diagnosed me with a CSF leak due to the lumbar puncture procedure.

Original poster
IHateLegDay · 16/09/2023 23:26

Lizzypet · 16/09/2023 23:11

So I guess it depends where they think the leak is? That knew it was from my spine as I'd had the lumbar puncture. So maybe check with your Dr whether lying flat is recommended for you.

As it's currently only suspected, they're not sure. I've been told I have low pressure headaches but the dr himself didn't seem to know an awful lot. I've contacted a specialist in London so I'm hoping I get the right information.

OP posts:
Original poster
IHateLegDay · 16/09/2023 23:29

TadpoleNerys · 16/09/2023 23:15

I am so very sorry to hear that you have a suspected CSF leak. I had one many years ago following a lumbar puncture, it was just at the onset of the pandemic so I could not access treatment quickly and no one would give me a MRI scan. I ended up diagnosed with a low pressure headache from having low csf pressure and spent 5 months on bed rest not able to sit or stand up without experiencing severe headache pain.

I was initially advised to drink 2 litre of fluids a day and rest in bed completely flat but my symptoms never improved. my neurologist then encouraged me to drink lots of cups of coffee and that never helped the symptoms improve either.

I did recover from the low pressure csf leak following a epidural blood patch patch which I had about 3 and a half months after the symptoms began, it took a while for the blood patch to work.

As I had the low pressure for so long, my brain suffered trauma and became used to having a headache. I now suffer with severe daily migraines and also visual symptoms. the visual symptoms started straight away following the lumbar puncture and have never went away three years later.

I hope you get treated soon and that your symptoms are taken seriously.Please be advised that if a CSF leak does not show up on a MRI scan, that doesn't mean you haven't got one. I saw a private CSF leak doctor who advised me that regarding the MRI scans. My MRI scan I later had (three months after the onset of my symptoms) was clear but the private CSF specialist neurologist did a thorough neurological examination on me and diagnosed me with a CSF leak due to the lumbar puncture procedure.

Edited

I'm so sorry this happened to you. It sounds utterly debilitating.
I have a low pressure headache and it started in August. I have been fobbed off my 3 different doctors so far and all have told me it's a migraine (despite the fact it's there from when I wake until when I sleep).
It was a hospital dr last week that told me it was a low pressure headache and booked the MRI. My symptoms are literally textbook.

I'm very nervous about what will happen next.

OP posts:
UndercoverCop · 16/09/2023 23:30

A friend had this, led to a cystic hygroma, the headaches were blinding, then started to affect memory, character, inhibition due to the fluid build up on the brain. Had to have a blood patch operation.

UndercoverCop · 16/09/2023 23:32

It took her several months of repeat hospital trips,a private MRI and the clear deterioration in cognitive function to get anyone to take her seriously.

irisretic · 16/09/2023 23:34

I had this following a lumbar puncture. I spent a week flat on my back and when I sat up I vomited bile. It was awful so my sympathies to you. I can’t recommend anything apart from staying flat and taking pain killers. I hope your MRI shows up the problem.

Original poster
IHateLegDay · 17/09/2023 00:01

I'm sorry that you've all been through this. It's awful!
The worst part is for the past month, doctors have fobbed me off.
Last night I was in agony and went to A&E and they told me they weren't going to see me so sent me to the walk in centre.
The dr there apologised and said the most he could do was give me pain killers.

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Surely2023IsTheYearForMyRainbowBaby · 17/09/2023 00:08

I had it after a lumbar puncture. It was the most vilest headache I've ever had. Getting kicked repeatedly in the back of my skull when I was 15 didn't even come close to it. The only relief I got was, by laying completely flat. Caffeine also helped as well. Unfortunately for me because the drs seemed to think I was at first a druggie wanting my next fix of morphine and then a drama lama because I was complaining I was in a shit load of pain I was given minimal pain relief and mine lasted around 6 weeks before the pain even started subsiding.

Lockthedoorbehindyou · 17/09/2023 00:17

Oh bless you. One of my adult children has also had a spontaneous leak, it's awful isn't it. Everyone's case is different, so I think it'll be a case of waiting and seeing what happens next. My DC was diagnosed quickly as she'd done a lot of research and guessed what was wrong. She had a couple of blood patches, but then went into rebound high pressure (or may have an ongoing small leak, the symptoms are not typical, and a bit confusing).

Things are more settled now, but it's taken a long time. One of the issues is identifying where/if there's is a leak. Even myelograms dont always show it.

There's an FB forum for people (mostly female) with leaks which, once you have a diagnosis, might be useful for you. I think the best advice if it turns out that you do have a leak is to get a referral to a leak expert - there aren't many in the UK.

Wishing you all the best, and do rest wont you. Oh and plenty of Red Bull!

TadpoleNerys · 17/09/2023 07:09

it is so awful. During the first few weeks following my lumbar puncture I was went to A+E twice and was admitted both times.

My GP took me seriously and my neurologists eventually took it seriously following me going to A+E where a neurologist came and diagnosed me with a low pressure headache.

Please push for an epidural blood patch if you can. It is where they take blood from your arm and put it into the areas where they think the CSF leak is to help plug where the hole may be. Mine was completed under MRI direction, don't let them do a epidural blood patch blind.

Original poster
IHateLegDay · 17/09/2023 09:04

@TadpoleNerys I'm so glad they took you seriously. I've been to A&E twice and both times they sent me to the walk in centre.
I feel like screaming tbh

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Original poster
IHateLegDay · 06/10/2023 16:31

Just in case anyone is interested,
I paid privately for a neurologist who has diagnosed me with low pressure headaches.
I had an MRI scan 2 weeks ago but it was done without contrast so was ultimately pointless.
I have another MRI (with contrast) on Wednesday to see if I will need a blood patch or not.

I had a few good days last week but I've spent the past 3 days on bed rest as I'm feeling awful.
Keeping my fingers crossed that I can get the blood patch and start to improve! 🤞

OP posts:
irisretic · 06/10/2023 19:37

I’m glad you have been seen and have a plan for treatment if necessary.

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