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

[SinkGirl]

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!)

I test CSF as part of my job, but the only times I've seen CSF leak from a nose has been after something pretty major has gone wrong - think car crashes, head injuries or surgery around that area.

It's probably sinus fluid.

I get that every now and then. Normally when I’m drying my hair upside down ( curly hair!).
I’m sure its fluid from my sinuses, never thought otherwise. Go to the GP if you’re concerned.
I’m sure if it was CSF you would have some other symptoms.

If you had spinal fluid falling out of your nose like that, it’s likely that you’d also feel like you’d been walloped in the head with a baseball bat whenever you stood or sat up (from horrible personal experience!).

Bet get it checked out at GP either way x

@SinkGirl hi op I developed a csf (cerable spinal fluid) leak out of my right nostril, I hadn’t had any head injury nor did I have any other symptoms.
It came on after a cold and for about 9 months I just put it down to cold/allergies etc. I could tip my head towards without a clear liquid dripping from nose, I constantly had tissues in my hand.

In June I came down with meningitis again and from here found out it was a csf leak.

I have had surgery to fix a hole in my Sphenoid sinus. It was a spontaneous leakso it is definatly possible to have without a head injury.

Have you had a tooth taken out in the last year

@toomanyhobbies I second it can happen without injury - I just woke up like that x

Urine strips.

Those who have had csf leak, can you tell me how does the headache feel like? When it says the headache is worse when standing up, does it means it's only painful at that moment or it continues to be painful when walking around, or even just being upright? And how painful is the headache?

@Littlegoth, hope you don't mind describing a bit more regarding how painful is the headache and any other symptoms?

I had a csf leak for around six months. Mine didn’t come out of my nose, but I joined a Facebook group of other sufferers and there were quite a few who had it coming from their nose.

Nets888 the headache for me was extremely painful. I couldn’t stand or even sit up some days. I remember crawling on the floor to run a bath for my kids and drinking with a straw so I didn’t have to lift my head from the pillow. I also suffered tinnitus, memory loss and dizziness. It was the worst six months of my life. I had a brain scan and my brain had slipped back in my skull as there was so little fluid holding it up. For years after I recovered I would get high pressure in my head and worry about blowing a new hole in the membrane. It’s been about 7 years now and so far I’ve had no repeats.

I also believe it puts you more at risk of meningitis as it’s easier for infections to get through? Definitely something to get checked out.

I've had similar but it was from my stomach - kind of like reflux but out of my nose!
Uncomfortable feeling like when you laugh while drinking and it comes out of your nose. When you vomit it tastes "chemical" (acidic).

I think it is more likely to be stomach acid than spinal fluid.

I had a "spinal headache" following an epidural

I can only describe it as the most crashing, splitting, vicelike pain I have ever had. Worse than childbirth. Worse than anything.

The only thing that made it anywhere near tolerable was morphine given by suppository and lying flat on my back for 24 hours.

You would know about it if you had one of those due to a csf leak

I've had this for years, OP, and exactly in the way you describe! I actually caught some in my hands the other day to show DH and he was beyond repulsed/concerned I may have a CSF leak..... do you find it takes a while to build up again after a leak?

Watching with interest!!

@Nets888 like your brain is burning white hot and going to explode. It’s the worst pain I have ever had and I thought I was dying. When I didn’t die, I wished I would. It didn’t help that it took months for anyone to figure out what was wrong. The pain was constant and relentless. I’m honestly cold sweating just looking back on it.

My anaesthetist has semi talked me into an epidural for my upcoming c section as a GA is potentially dangerous for me. I am more scared of the potential for spinal headache than I am of anything else. They’ve promised me the most experienced team member and immediate fix should I have one again and I’m still able to change my mind and have GA on the day.

@StarcourtMall yes exactly. Just horrific.

@Littlegoth how did you get it diagnosed? I gave birth 4 months ago and have the worse headaches ever

@sinkgirl did you ever get this sorted? I see someone else has already mentioned EDS and with you saying you'd been diagnosed with fibro but weren't sure about the diagnosis it made me think of EDS as well. Not all EDS is connected to hypermobility though I don't really know anything about the other types.

DD has EDS and they think she has a chiari malformation which EDS people can get and thats to do with the brain being pushed out of place and has CSF involvement, not sure if that includes leakage?

@Mehripoop about 2 or 3 months after it started I went to the docs and refused to leave until they did something as it clearly wasn’t an ear infection or any of the other things they decided it could be. 30 minutes later I was being admitted to hospital. I spent 5 days there getting several MRI, CT etc. I actually googled my symptoms after a scary unrelated condition was picked up, suggested it to the neurologist who was doubtful. He did go back over my scans though with spinal fluid leak in mind and found some evidence for it. They hadn’t considered it before as I didn’t have any risk factors (injury, epidural etc) and because of the length of time elapsed I couldn’t have the blood patch as they couldn’t exactly pinpoint the leak.

Did you have an epidural or spinal? Epidurals are more likely to cause a puncture but spinal still can do. If you are still under the maternity team I would give them a call - even if you aren’t you can call them, the anaesthetists are the people you want to speak with as they are just better at spotting and dealing with them (anaesthetists I have spoken with take it more seriously than gps or other doctors as they understand how bloody painful they are!)

@littlegoth I had an epidural but I was fine for about 3 weeks and that’s when these weird headaches started. Almost feels like there is extra pressure in my head and ears. How did you get rid of it? I almost feel like it’s too late to correct it now sadly...sigh

@Littlegoth Epidurals are more likely to cause a puncture but spinal still can do ...

A spinal is supposed to cause a puncture (that’s the difference between a spinal and an epidural). An epidural, if it does cause a puncture, is more likely to cause a headache (because it makes a bigger hole through which CSF can leak than a spinal).
(From an anaesthetist)

@greybeardy what are the chances that these headaches continue for many months after

There's a test you can do at home with a paper bag, csf fluid leaves a halo iirc. Csf leaks cause a headache that is worse when upright.

I guess ring the gp and at the very least mention it over the phone. The fact it can happen means it’s a possibility. If the gp wants to look into it further they can ask you to collect a sample to drop off.

@Greybeardy explaining it much better than I can!

@Mehripoop what do your headaches feel like?

There is a condition called Idiopathic Intercranial Hypertension which causes excessive CSF to be produced in the brain. This can cause severe headaches, vision problems and thumping in the ears with your heartbeat (Pulsatile Tinnitus)