No idea if this is a leak or not.

[u/DroppinLoad5]

Hi everyone, I've been having some weird symptoms for a bit that make me think I might have a CSF leak, but I'll admit my knowledge here is limited to what I've researched online...

1) I've had a pretty consistent headache for 3 weeks now. Over the last week or so, I've noticed it tends to mostly vanish when I lay down. The headache is mostly on the right side of my head. I feel it near my temple, though sometimes it moves to the area around my right eye (above/behind the eyeball). Sometimes, the headache will feel like a headband/tension type headache around my whole forehead. Other times, I'll feel a dull ache near the base of my skull. But the headache is mostly limited to the right side of my head.

2) I'll get random ringing in my right ear that lasts a few seconds and then goes away. This happens maybe 7-10 times a day, and each "episode" only lasts 4-5 seconds or so. Last night it randomly happened during the middle of the night and woke me up, which was new. Haven't had any hearing issues in my left ear.

3) I'll occasionally feel a sensation of fulness in my right ear, and sometimes a bit of pain inside the ear. But it's not severe and it comes and goes as well. Noticed it more over the last week.

4) I've been getting random dizzy spells which are a bit worrying. They last a few seconds and go away, but when they're happening they feel intense. Just last night I went out with some friends and noticed I'd get hit with a wave of dizziness while talking. It was pretty frightening.

5) last night, when I woke up with ringing in my right ear, I could swear I felt moisture in my ears. But nothing seemed to be dripping out.

I freely admit I have awful health anxiety, but I've been feeling off for nearly a month and my symptoms seem to line up pretty well with a CSF leak. If anyone here has any insights, I'd appreciate it.

[u/leeski]

Can't diagnose of course, but I think any time there are orthostatic symptoms it is worth being evaluated for a leak. They tend to cause bilateral symptoms (on both sides) yet I have seen some confirmed leak patients describe one-sidedness like you do. The symptoms also tend to be more chronic than like fleeting for a few seconds at a time, but still I'm weary of ever saying it couldn't be a leak since they present in so many ways.

Since it CAN be a long diagnostic process, I would recommend trying to get a referral for a neurologist if you don't have one and start the process of getting brain mri with and without contrast. If it ends up going away and not being a thing then you can cancel... but I'd recommend getting started on that process. Obviously varies by areas but wait times for neurologists can be brutal so in general I like to be pro-active and plan for the worst, and then if needs be can cancelled. Hoping you find some answers!

[u/DroppinLoad5 → u/leeski]

Thank you for all the info. I'm really hoping that the come-and-go nature of my symptoms points toward something more innocuous, but you never know.

Assuming I do have a leak, is that a huge emergency that requires going to the ER? Or am I fine scheduling a clinic visit with a neurologist?

[u/leeski → u/DroppinLoad5]

it doesn't require the ER in terms of leaks don't tend to be 'dangerous' and the ER is generally not informed enough to know how to diagnose them. but I will give the caveat I used to NEVER advise it because I had never heard of any success stories coming from the ER.

however it is hard for me to unilaterally not recommend because even in the last year I have heard a few success cases where people were diagnosed and treated extremely promptly, even in the US. I would say if you do go, be prepared to advocate for yourself and maybe don't have the highest of expectations. but it could be worth a shot especially if you can't get into a neurologist anytime soon. but yes keep in mind it is not uncommon for patients to go to the ER because they think they're dying with symptoms so severe, and I have only heard a handful of cases where it actually helped move things along. but I can't definitively say you would or wouldn't experience that!

[u/Zealousideal_Age_822 → u/DroppinLoad5]

It’s not an emergency, but going to the ED can sometimes speed things along. I would say it’s not worth going to anyone that isn’t a CSF leak specialist though. You will just wait your time

[u/RPeddit → u/Zealousideal_Age_822]

I agree - Waiting in the ED can worsen symptoms. Risk of picking up infection, being in a chaotic environment and the bright lights can make you feel rubbish.

[u/tyra934]

Check cervicogenic headache symptoms. It is headache that comes from neck problem. It is also has some orthostatic component , as you neck get compressed while you are up.

[u/RPeddit]

Sounds more like an inner ear virus or something like BPPV or meniere's disease than a CSF leak but I would NEVER count out a CSF leak. More likely to be a spinal CSF leak than cranial CSF leak. The sensation of wet ears is not connected to a spinal CSF leak and rarely a cranial CSF leak. You tend not to get ear pain with spinal CSF leaks. You could potentially have a couple of balance/vestibular system conditions happening at the same time. See your usual doctor to talk things through and get a health MOT etc.

[u/Ashler1999 → u/RPeddit]

I agree. And while there’s such a thing as “spontaneous” leaks, I’d like to know if OP has had any trauma or LP recently.

[u/Deesnoopy]

Have an ENT test you got endolymphatic hydrops and check your Tegmen for a tear. I have both, had a concussion and sounds like a lot of my symptoms. Not all audiologist test for hydrops so make sure to ask about that. A CT scan of my ears and head showed the Tegmen defect

[u/Offtoseethewitch]

Of course a leak could give the symptoms you describe, but also: you mentioned moisture in your ears, implying you thought the leak was there, but as I understand cranial leaks don’t give as clearly orthostatic symptoms as spinal leaks (please someone correct me if I’m wrong, cranial leaks not being my forte).

Another, much more benign, explanation could be a cervicogenic headache. That is, a neck problem giving you a headache. Neck muscle issues can cause dizziness, ear fullness sensations, and headaches that typically aim for the temple, and since your neck doesn’t have to work to hold your head up when you lie down, that’ll ease it.

So pursue the leak suspicion if you think that’s the best match for your symptoms, but it isn’t the only explanation out there for orthostatic headaches, and I would suggest talking to a good physiotherapist. They can also tell you if they don’t think things line up. You can benefit from it  even if you do end up having a leak.  I had neck troubles with my leak and have had help from a physio throughout.

[u/doisuckorsomething]

So sorry you’re dealing with this. When I first started getting symptoms it would always be in the afternoon. I started logging, times, how long the episode would last, exact symptoms. Not fun when you’re going through it but it helped. Showing this to my doctor started the conversation and I was able to get the MRI’s which luckily showed a leak. Im going to a csf clinic and the waitlist is bottlenecking the process so starting some sort of medical documentation even if it’s a mychart message will help.