CSF leak, I'm petrified

[emilylouisex1]

Hi all, I've been experiencing horrific headaches for a few weeks now, only relieved by strong painkiller at the moment, will admit I have been under a bit of stress, but the headache is all over my head, specifically at the back mostly, pain comes into my ears and eyes aswell, doctors initially thought sinus but because I don't have a cold and I feel generally fine in myself they said probably not, did prescribe anti biotics anyway which made me throw up, so called pharmacy who said stop. Called 111 to get them changed as per pharmacy instructions and they refused and scare mongered me, basically demanded me to go a&e even offered an ambulance. I was so terrified and this led me down a health anxiety spiral.
I did go a&e who didn't do tests, said my vitals are normal and I'm not sensitive to light, they shined a light in my eye which my brain didn't react to so said it's nothing serious, they did say they didn't actually know the cause but their job is to rule out emergencies, also told me about a CSF leak (which has led me down this awful spiral) they said it's about a 1% chance for a woman of my age (29) but would need a CT scan to check (if I remember correctly) so now I'm just constantly researching, I wake up with this headache, I go to sleep with it, it's so painful. Not sure why it's all in my ears and eyes aswell, never experienced anything like it! Can stress genuinely cause headaches like this? I didn't think I was under THAT much stress but maybe.... I'm just really worrying about what this is, headaches are not normal for me, Well never was, also! They said not migraine, they said migraines also cause sensitivity to light and I also want to add, they didn't change the anti biotic, a&e don't believe it's an infection either so no anti biotics at the moment.

Nothing is ever 100% but I am sure that the doctor at A&E will have carefully considered whether or not this is likely to be CSF leak and ruled it out accordingly. If they considered it to be a real risk then they would have sent you for an MRI.

It sounds a bit like a tension headache. These can be caused by stress, but also poor sleeping posture, too much caffeine or even taking too many painkillers.

It could also be a sinus thing without a cold - I used to get these a lot.

I'm sorry you're in so much pain.
I think the doctors in A & E would have kept you in hospital if they'd suspected a leak of CSF so it won't be that.

Stay off Google and go back to your GP.
Yes, tension and anxiety can cause a lot of pain.
Have you tried inhalations?

Thank you for responding, it's so strange as I've never had anything like this, as I'm typing this now I have a sharp intermittent pain on the left side of my head feels very very sharp 😢 I'm tired of this.

Thank you! I haven't tried inhalations, I do find menthol helps (I've been using 4head aswell, trying not to take too much medication) and it does take the edge off I just admit, but none the less it still comes back 😭

It would be unusual to wake with a headache if it's a CSF leak. Generally the pain is much better/non existent first thing and worsens as the day progresses. (I've a family member who had a spontaneous CSF leak so sadly we've all become 'experts').

If the headaches continue it's definitely worth going back to the GP. Hope you feel better soon.

I'm currently in hospital with a CSF leak. A CT scan will not show one, only MRI with dye.
Is the headache coming on as you stand up? If it's not a postural headache, it won't be a CSF leak and they are rare.
I only got diagnosed by a private neurologist as the drs at my gp practice and the hospital kept fobbing me off.

I mean it did start getting worse throughout the day and feeling fine in morning, but now it's just constant :(

It's there when I'm laying down, when I'm sat up, when I'm doing anything basically, I haven't noticed a particular trigger

I had a CSF leak and just woke up with it. It was horrific. CSF leak wasn’t on anyone’s mind as I literally just woke up with it.

spent 2 months being given various antibiotics as the GP treated me for ear infections, labyrinthitis, and a bunch of other things I didn’t have. I was in agony.

I ended up going back to my GP and refusing to leave until they did something, at which point a student doctor shone a light in my eye, said he thought I was having a brain haemorrhage, and sent me to hospital.

I was in for a week, having test after test, CT scans, MRIs. After the MRI a doctor came in and announced I had a tumour on my pituitary but it wasn’t the cause of the headache, so at that point I turned to Dr Google. When the neurologist came the next morning I told him I thought it was a CSF leak. He basically said he would be the judge of that, went away and came back half an hour later to agree with me. His opinion was that I’d nipped the meninges near my brain stem causing a leak. Couldn’t have a blood patch as they’d missed the opportunity to locate exactly where the tear was.

Took 8 months before I could stand up without being in pain, and more like 5 years before I felt normal. It’s 9 years ago now and I still very occasionally feel the effects of what we called ‘the bubble’ - I’ve been advised this is probably due to scarring in the area. I had spinal only for both c sections and wouldn’t even consider a vaginal birth as the risk of another leak if I had an epidural is too high.

I’m sorry to see others here with similar stories, it’s the worst pain I’ve ever had, and I say that off the back of 2 c sections, a burst appendix, and having the surface of my eye removed (it grew back but was as painful as it sounds).

I think, whatever it is, you should be going back to your GP.

Yes, if you have to then go and sit there until they order some diagnostics.

If your stressed could you be grinding or clenching your teeth especially while you are sleeping? I had awful headaches for ages and this is what turned out to be the cause. I was given a splint for a few months which was later replaced with a mouth guard and i no longer have the headaches. Just thought I would throw this in the mix as something to consider.

I was only in a&e yesterday, the a&e doc said if it doesn't go within 5 days with naproxen then go back to your gp for further investigations. I do hope it's nothing serious 😢

Sorry to hear your experience😢 hope you are all ok now?

Could stress be causing you to grind/grit your teeth at night? That can give you bad neck/ear/head pain every morning. Sometimes it is a vicious circle. The more stressed we feel, the more we suffer.

Thanks. Yes I’m fully recovered, although if I have a severe cold or cough I usually get a spinal headache then - again most likely due to scarring. I won’t plan in any extreme sports or skiing etc though 😂.

Possibly! I mean I'm not aware of it, but maybe? I've had all kinds of symptoms with stress but headaches has never been one of them, the joys!

Glad to hear it! Must have been awful for you

Did just lay down for a bit because of the pain (noted what a comment said about postural) doesn't fade or ease when laid down either, can literally feel my head throbbing 😢 I think this may all be due to stress tbh (I hope it is) I'm going through a stressful period in my life right now

I hope it clears up soon - it sounds horrible.

Thank you! I hope it does too, so strange aswell as it's not the norm for me, it's all in my face aswell. I'm gonna give it a few more days with the naproxen and if it doesn't go il head back to my GP, I don't want to be a hypochondriac and I am going through stress so rationally it's probably that right?

If it doesn't ease when lying down then the likelihood of it being a CSF leak/low pressure headache is minimal.
Go back to your gp and ask for a scan. Likelihood is it's stress or a virus but always best to check.
I hope you feel better soon xx

I have always been a bit of a worrier over my health. My go to test is to see if it disappears after a glass of wine or two! If it does I know it is probably stress/muscle pain/nothing serious. Probably not recommended but it helps me.

My dd, when was 12, had a headache that lasted days that the doctor just was not a migraine or a tumour. An acupuncturist cured her. It seems the cause was hormonal

I'm not much of a drinker at all, but I guess I could try, cold drinks help too, just had an ice coffee from costa and it's so soothing