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This can’t actually be spinal fluid... right?!

85 replies

SinkGirl · 09/03/2020 18:53

I realise this sounds absolutely bonkers. I should start off by saying that I am not a fan of Dr Google. I have some existing health issues, some symptoms aren’t fully explained by the diagnoses I have, but I have never once thought I have some rare disease or anything sinister.

About a year ago I was playing with a play tent and tunnel with my twins and a stream of clear fluid fell out of my left nostril as I bent over. I thought well that’s bloody weird, and then didn’t think much more about it to be honest.

About a month ago, the same thing happened while bending over tidying up. This time I tried to wipe it away when it happened but it felt like a fair amount. It was just clear fluid, slightly thicker than water, not like snot or mucus at all. I then had a nasty chemical taste in my mouth for the rest of the day. It happened a few more times that day in smaller quantities and then stopped. I felt a bit nauseous but otherwise fine. I thought maybe it was a sinus issue, then forgot all about it as it stopped.

It’s just happened again, while unloading the dishwasher - this time it happened so quickly that it just dripped out in big drips on the open dishwasher door. There were about four or five large drips in quick succession. Again it didn’t feel like mucus when I wiped my nose, the consistency is different.

So I googled it and found that very rarely such symptoms can be caused by a spinal fluid leak. One thing that stood out to me is that you can have it for years and patients are often misdiagnosed with ME or fibromyalgia - I’m diagnosed with both but the symptoms don’t necessarily seem to fit. Also it’s always the same nostril only which is another possible indicator.

It seems odd that there are long spells where it doesn’t happen. And I don’t have a terrible headache so I think it can’t possibly be that. I haven’t had any head injuries etc, just a spinal for c section 3.5 years ago but that was quite disastrous (7 attempts to get it in). I can’t see how a spinal could cause a leak in your head though.

Even if it is spinal fluid, there’s no imminent emergency - it seems it goes undetected for years, it can lead to infections but I have no sign of one.

I would feel like an absolute pillock saying to a doctor I think I might be leaking CSF out of my nose - I mean, that sounds crazy. And I wouldn’t necessarily be able to produce a sample to test on demand.

Has anyone had anything like this? I keep thinking there must be a rational explanation that isn’t this, but I can’t find anything - surely if it was allergies or sinus issues I’d have other symptoms and it wouldn’t just be one side of my nose?

This was about an hour ago and there’s been none since. Last time it happened if I waited a couple of hours and then leaned forward, I’d get a few more drops so maybe I should see if it happens again and try to catch a sample if it does? I have a urine sample pot in the cupboard.

There are new corona cases in our county so healthcare providers are completely overwhelmed and obviously I would rather not take up an emergency appointment when it’s not an emergency. Right now I’m not immediately concerned because I feel okay. But obviously if that’s what it is I need to get checked out and possibly treated to prevent an infection happening.

I can’t tell if I’ve fallen victim to Dr Google or if I should be concerned. Have I gone completely mad? (Very possible!)

OP posts:
Zippy1510 · 05/10/2020 21:26

The protective membranes (meninges) that encase the cerebral spinal fluid surround your spinal column and your brain. So they are connected if there’s a leak.

TheDogsMother · 05/10/2020 21:34

This sounds like post nasal drip. Your nose membranes going into overdrive due to inflammation or irritation. If you have had sinus problems in the past it's a good chance this is what you have

Greybeardy · 05/10/2020 21:59

@Mehripoop if you google ‘RCOA headache after an epidural’ you’ll find a patient info leaflet that may be useful (I don’t know how you post a link on here). An untreated csf leak can go on for weeks, but usually presents sooner than you’ve described. Probably the best thing is to see your GP and if they think your symptoms/examination fit then they’ll be able to discuss it with the anaesthetics department and take it from there. Hope that helps.

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Mehripoop · 06/10/2020 07:37

@pinklillie that’s exactly what they feel like. It’s like there’s pressure in my ears and behind my eyes. I also keep shivering!

@TheDogsMother tbh I had a traumatic birth in lockdown and I cried LOADS for about 3 months straight. That could have blocked my ears but it feels so different to a normal sinus infection

@Greybeardy my doctors just label me as post natal depression and leave all ailments under that category sadly

GreatBigBeautifulTommorow · 06/10/2020 09:21

@SinkGirl did you see a GP?

I had this, one nostril only. I’d bend over and sticky fluid would pour out randomly.
Couldn’t make it happen.
Turns out was due to chronic sinusitis, I had FESS and never happened since Smile

pinklillie · 06/10/2020 10:44

@Mehripoop if it is that condition it is a build up of pressure within the brain causing the headaches, eye pain and issues with your ears. If you are getting no joy at the GP you can get your eyes checked as they will be able to pick up any issues from the photos they do of the back of your eyes. I have this condition and I was told repeatedly it was a migraine. Luckily the Opticians managed to find out the root cause and I've been having treatment now.

Mehripoop · 06/10/2020 12:37

@pinklillie that’s good. The gps are useless! What’s the treatment and is it helping if you don’t mind me asking?

pinklillie · 06/10/2020 14:15

@Mehripoop it can vary from person to person. There are medications which are diuretics which can help to reduce CSF and also medications to help with the pain too. If they suspect you do have it you will need a lumbar puncture to see how high the pressure is and they can also remove some spinal fluid too which helps to reduce the pressure. I have had a few of these done. There is a really good website that details a lot of information I'll link it below for you and also FB groups too which are helpful. I am pregnant so my treatment options are fairly limited as I can't tolerate the medication. I have just had an Occipital Nerve Block (an injection in to my head) which has helped with the pain although it can't reduce the pressure so I still have vision issues. When baby arrives I'll be taking the diuretics and pain relief medication. I hope you manage to get to the bottom of it and start to feel better soon.

www.iih.org.uk/index.php?option=com_content&view=article&id=24

Lozz22 · 06/10/2020 14:38

I think you'd know if it was although I'm not sure if a spinal from 3.5 years ago would be leaking now. I had a lumbar puncture to check for a bleed on my brain and mine happened within a few hours. The post dural headache is one the most excruciating pains I have ever experienced. My 4 miscarriages were a walk in the park compared to that pain. Don't recall fluid leaking out my nose though although then again apart from when I was vomiting my head was never forward because the pain was too intense.

Lozz22 · 06/10/2020 14:46

@Nets888 the headache for me was the worst headache I have ever had in my life and I have had 2 massive brain injuries. Even just having the hospital bed on a slight incline was enough to have me screaming in agony. Sitting up for more than a few minutes had me violently throwing up so every trip to the toilet meant I had to sit with a sick bowl on my knee. I ended up massively poorly after mine and ended up losing consciousness due to severe dehydration. Did pick up quite quick once they'd pumped me full of fluids and anti sickness and morphine was my best friend until they stopped it because I was puking again and they blamed it on that. Morphine meant I was actually able to sit up pain free. It took me around 8 weeks in total to get back to how I was before I was rushed into hospital with a suspected stroke

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