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Original poster

CSF leak, I'm petrified

54 replies

emilylouisex1 · 09/10/2023 07:09

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.

OP posts:
MindatWork · 09/10/2023 11:01

Posting in solidarity OP - I had something similar a couple of months ago and Dr Google convinced me it was a CSF leak 😫

In reality they're very rare (this thread won't necessarily be indicative of how rare they are as 'CSF' in the title will likely make people who have had one post a reply, so it's skewing the data if you see what I mean).

I was referred for an urgent MRI as my headaches flared really badly when I bent down or coughed, which can indicate increased pressure. If your headaches aren't positional and are the same whether you're sitting, lying or standing, then its extremely unlikely to be a CSF leak.

My MRI came back clean as a whistle and the headaches stopped eventually. Mine were likely stress related too.

Hope you feel better soon!

Original poster
emilylouisex1 · 09/10/2023 11:08

MindatWork · 09/10/2023 11:01

Posting in solidarity OP - I had something similar a couple of months ago and Dr Google convinced me it was a CSF leak 😫

In reality they're very rare (this thread won't necessarily be indicative of how rare they are as 'CSF' in the title will likely make people who have had one post a reply, so it's skewing the data if you see what I mean).

I was referred for an urgent MRI as my headaches flared really badly when I bent down or coughed, which can indicate increased pressure. If your headaches aren't positional and are the same whether you're sitting, lying or standing, then its extremely unlikely to be a CSF leak.

My MRI came back clean as a whistle and the headaches stopped eventually. Mine were likely stress related too.

Hope you feel better soon!

Thank you so much for this! I did actually have a head scan December 2022 that doctors wanted to check for something unrelated to headaches, it was normal thankfully. Yes I don't notice a difference laying down and sitting up, also noticing my neck is cracking a lot when moving so maybe I am very tense aswell? Glad to hear yours was ok though!! It's super scary

OP posts:
DaisysChains · 09/10/2023 11:14

If you can get a dentist appointment they should be able to see from your teeth if you are grinding them & organise a mouthguard if you are. That was my experience anyway.

Currently using a lavender oil to massage neck/shoulders before bed in an attempt to relieve stiffness from stress too which I think is helping.

both of the above assuming nothing else is going on, but easy to try in any event.

MindatWork · 09/10/2023 11:17

No problem, glad it helped!

Are you able to see an Osteopath near you at all? My DH suffers from chronic migraines and tension headaches (he is on proper medication for them). After an awful 3-day migraine that wouldn't shift, he found an osteopath near us who specialises in headaches; he gave DH a good going over and worked out loads of tension from his shoulders, neck and jaw and it's really helped.

Somuchgoo · 09/10/2023 11:17

This makes me want to cry 😢

My toddler had about 15 CSF leaks (externally leaking) in the month after major brain surgery. A lot of them she'd get very agitated and uncomfortable, but I was told she probably wouldn't have been in pain, maybe just a slight headache, so she wasn't given any pain relief. The accounts here from adults with it are quite sobering.

I hope your headache resolves soon whatever it turns out to be.

Original poster
emilylouisex1 · 09/10/2023 11:35

MindatWork · 09/10/2023 11:17

No problem, glad it helped!

Are you able to see an Osteopath near you at all? My DH suffers from chronic migraines and tension headaches (he is on proper medication for them). After an awful 3-day migraine that wouldn't shift, he found an osteopath near us who specialises in headaches; he gave DH a good going over and worked out loads of tension from his shoulders, neck and jaw and it's really helped.

I will look into it!

OP posts:
Original poster
emilylouisex1 · 09/10/2023 11:36

Somuchgoo · 09/10/2023 11:17

This makes me want to cry 😢

My toddler had about 15 CSF leaks (externally leaking) in the month after major brain surgery. A lot of them she'd get very agitated and uncomfortable, but I was told she probably wouldn't have been in pain, maybe just a slight headache, so she wasn't given any pain relief. The accounts here from adults with it are quite sobering.

I hope your headache resolves soon whatever it turns out to be.

I'm sorry to hear this 😔

OP posts:
Noeggsontoast · 09/10/2023 11:44

@emilylouisex1 I am on day 40 of a similar headache (no prior history of headaches) only relief is via morphine and it's a headache unlike anything I've experienced before.

I've had bloods and a CT scan and eye scans - all normal. I see a consultant neurologist this week and will be having an MRI.

My symptoms include ear ache and blocked ear, eye and neck pain, drooping eyelid and mouth, weakness in right arm, and auditory hallucinations. Starts every day within 10-15 mins of being out of bed and always starts from base of skull.

I would say to keep off google, it can be so many many things and many of which are not serious. My GP thinks that it could be nerve related, hence referral to neurologist.

I hope you get some respite and some answers soon and try not to worry too much. I know, it's easier said than done.

Original poster
emilylouisex1 · 09/10/2023 12:23

Noeggsontoast · 09/10/2023 11:44

@emilylouisex1 I am on day 40 of a similar headache (no prior history of headaches) only relief is via morphine and it's a headache unlike anything I've experienced before.

I've had bloods and a CT scan and eye scans - all normal. I see a consultant neurologist this week and will be having an MRI.

My symptoms include ear ache and blocked ear, eye and neck pain, drooping eyelid and mouth, weakness in right arm, and auditory hallucinations. Starts every day within 10-15 mins of being out of bed and always starts from base of skull.

I would say to keep off google, it can be so many many things and many of which are not serious. My GP thinks that it could be nerve related, hence referral to neurologist.

I hope you get some respite and some answers soon and try not to worry too much. I know, it's easier said than done.

Oh that does sound awful! I do hope you get the answers you need! I will push with GP if it does ease by the end of the week I think, will try a bit of yoga maybe lol just to try and ease the stress and things, hopefully it does go :(

OP posts:
Noeggsontoast · 09/10/2023 12:37

@emilylouisex1 definitely go back if no better, be persistent. I will say my GP has been good and advocated for me with the hospital. Take care and fingers crossed I for you

herringboneparquet · 09/10/2023 14:11

Noeggsontoast · 09/10/2023 11:44

@emilylouisex1 I am on day 40 of a similar headache (no prior history of headaches) only relief is via morphine and it's a headache unlike anything I've experienced before.

I've had bloods and a CT scan and eye scans - all normal. I see a consultant neurologist this week and will be having an MRI.

My symptoms include ear ache and blocked ear, eye and neck pain, drooping eyelid and mouth, weakness in right arm, and auditory hallucinations. Starts every day within 10-15 mins of being out of bed and always starts from base of skull.

I would say to keep off google, it can be so many many things and many of which are not serious. My GP thinks that it could be nerve related, hence referral to neurologist.

I hope you get some respite and some answers soon and try not to worry too much. I know, it's easier said than done.

This sounds very like a woman had on the TV show Doctor in the House. I think it was cluster headaches. Nothing was helping the poor woman and she was doubled over and crying in pain. I think they looked at lifestyle changes and they got a lot better.
Maybe have a Google and see if it's available to watch.

Littlegoth · 09/10/2023 16:28

@herringboneparquet steady on, we’ve not ruled out Lupus yet! 😆

@Somuchgoo Sending you a hug, hopefully this is long in the past for her. Her doctors sound like absolute dickheads, telling you that! You can only go by what your doctors tell you xx

@emilylouisex1 caffeine eases a spinal headache as it increases pressure. I drank so much coffee!

Original poster
emilylouisex1 · 09/10/2023 17:09

Littlegoth · 09/10/2023 16:28

@herringboneparquet steady on, we’ve not ruled out Lupus yet! 😆

@Somuchgoo Sending you a hug, hopefully this is long in the past for her. Her doctors sound like absolute dickheads, telling you that! You can only go by what your doctors tell you xx

@emilylouisex1 caffeine eases a spinal headache as it increases pressure. I drank so much coffee!

Edited

Thank you, I am a coffee lover so il keep that in mind. When I went to an out of hours gp on the weekend they did change the anti biotic but advised me to go a&e aswell for my own safety, so I think I'm going to take the anti biotics, doc at a&e did say he didn't think it was sinusitis, personally I don't either but hey! It's worth a go, I do have the awful facial pain along with the all over headache so maybe it could be? Who knows, I don't have a cold though so 🤷🏻‍♀️ hope it works but I'm in a lot of pain so what harm can it really do right? At least il know it's not an infection if it doesn't work

OP posts:
Limpba · 09/10/2023 17:15

i’ve had a CSF leak, it was like someone pneumatically drilling down through my crown and out of my eyes. i couldn’t stand light or any sound. had to lay flat for 5 days drinking high caffeine which can relieve but didn’t cure me, then a blood patch which sorted it on day 7. sadly left with scarring in pituitary and the newly named AVP-D.

Limpba · 09/10/2023 17:21

Readingundertheoaktree · 09/10/2023 09:01

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.

Absolutely not my experience! I woke with s CSF leak and it was constant agony from opening my eyes on the morning and all day long like someone ice picking my brain.
So perhaps you’re an expert in your relatives leak, but you’re definitely not an expert on symptoms of my CSF leak!

Original poster
emilylouisex1 · 09/10/2023 17:25

Limpba · 09/10/2023 17:15

i’ve had a CSF leak, it was like someone pneumatically drilling down through my crown and out of my eyes. i couldn’t stand light or any sound. had to lay flat for 5 days drinking high caffeine which can relieve but didn’t cure me, then a blood patch which sorted it on day 7. sadly left with scarring in pituitary and the newly named AVP-D.

Gosh that does sound awful, I wouldn't say mine is that painful, I have an awful pain tolerance as it is but I can't stand light and sounds although irritating, are not hurting me anymore than my head already is - the headache and eye pain is awful though

OP posts:
toomanyhobbies · 09/10/2023 17:42

@Somuchgoo I had a CSF leak through my nose. Mine was spontaneous and I didn’t have any pain with it at all. It probably started while I was pregnant and didn’t get sorted will he was 5. So I hope it was the same for your toddler.

My nose would drip water all the time I had a tissue constantly in my hand and it was worse if I bent down etc was very embarrassed about it.

About 5 years prior to getting the leak I did get referred by my optician to the hospital as I had the nerve at the back of
my eye was swollen. Around this time I did also get periods of bad headaches that would just throb and not really helped by painkillers. I now strongly believe that this was the start of my CFS issues and intercrainal high pressure.

OP it may also be worth getting your eyes checked as they may spot something.

SparkyBlue · 09/10/2023 18:11

Limpba · 09/10/2023 17:15

i’ve had a CSF leak, it was like someone pneumatically drilling down through my crown and out of my eyes. i couldn’t stand light or any sound. had to lay flat for 5 days drinking high caffeine which can relieve but didn’t cure me, then a blood patch which sorted it on day 7. sadly left with scarring in pituitary and the newly named AVP-D.

That's very interesting as I'm currently waiting to see an endocrinologist due to pituitary issues but I've also had a blood patch done due to csf leak. I never ever put a link between the two

Original poster
emilylouisex1 · 09/10/2023 18:40

toomanyhobbies · 09/10/2023 17:42

@Somuchgoo I had a CSF leak through my nose. Mine was spontaneous and I didn’t have any pain with it at all. It probably started while I was pregnant and didn’t get sorted will he was 5. So I hope it was the same for your toddler.

My nose would drip water all the time I had a tissue constantly in my hand and it was worse if I bent down etc was very embarrassed about it.

About 5 years prior to getting the leak I did get referred by my optician to the hospital as I had the nerve at the back of
my eye was swollen. Around this time I did also get periods of bad headaches that would just throb and not really helped by painkillers. I now strongly believe that this was the start of my CFS issues and intercrainal high pressure.

OP it may also be worth getting your eyes checked as they may spot something.

Well I was due an eye test so I got one done last month! Ironically this started a week later but all was normal there!

OP posts:
Rockschooldropout · 09/10/2023 18:50

I noted you said your neck was cracking .. have you got any muscular skeletal issues ?
is your neck tender at the back ?
The reason I ask is because Occipital neuralgia will cause an absolute banger of a headache in the back of the head with refered pain around the eyes etc .. it’s basically a trapped nerve in the scalp and speaking from experience it’s not nice ..
I suffer debilitating migraines but get this occasionally if I’ve slept awkwardly or strained my neck .. I can literally feel the pounding in the head .. mine started happening after a whiplash injury in 2016

Limpba · 09/10/2023 19:19

SparkyBlue · 09/10/2023 18:11

That's very interesting as I'm currently waiting to see an endocrinologist due to pituitary issues but I've also had a blood patch done due to csf leak. I never ever put a link between the two

Show quote history

theres a definitive link, pm me if you want to chat 👍

herringboneparquet · 09/10/2023 19:51

Littlegoth · 09/10/2023 16:28

@herringboneparquet steady on, we’ve not ruled out Lupus yet! 😆

@Somuchgoo Sending you a hug, hopefully this is long in the past for her. Her doctors sound like absolute dickheads, telling you that! You can only go by what your doctors tell you xx

@emilylouisex1 caffeine eases a spinal headache as it increases pressure. I drank so much coffee!

Edited

Sorry not sure where lupus came from?!

Littlegoth · 09/10/2023 20:18

@herringboneparquet sorry, it was a House pop culture reference. I may have been overzealous on the coffee today.

herringboneparquet · 09/10/2023 21:21

Littlegoth · 09/10/2023 20:18

@herringboneparquet sorry, it was a House pop culture reference. I may have been overzealous on the coffee today.

Edited

Sorry still confused 😆

Oh maybe you thought I meant the show House?!

I was talking about Doctor In The House with Dr Rangan Chatterjee.

Littlegoth · 09/10/2023 21:32

@SparkyBlue@Limpba I mentioned they found a tumour on my pituitary as part of their investigations - what I didn’t mention is that I had several follow up MRIs to monitor it (as well as follow ups for the CSF leak). I was discharged from neurology for the csf leak in October 2015 as my recovery was ‘as good as it was going to get’, and my next MRI in December actually showed the pituitary tumour had unexpectedly vanished so I was then discharged from endocrinology too. I hadn’t considered a link, not any more than in passing anyway, but now I’m wondering! No blood patch for me though.

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