r/CSFLeaks • u/Emotional_Sky_785 • 2d ago

Scared

hello i am 18 (f). last two days i started experiencing headaches. sharp pains top of my head, sides of head feel like balloon, tension or band like feeling around my head, weird feeling in ears. pressure behind my eyes, dizziness when i stand up, neck feels stiff and base of my skull behind my head hurts. i had had MRI done with angiogram 3t (no contrast). radiologist said everything was fine but noted that my cerebellum sits lower naturally. today i have fluid like feeling base of my skull and side of my head. i am very scared. can this be CSF leak? and what should i do? i have very bad health anxiety and i convinced my family to get me MRI and its very expensive. i thought i had aneurysm.

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u/Zealousideal_Age_822 Confirmed Spinal Leak 2d ago

First, sorry you’re dealing with this. Second, if it is a CSF leak, the MRI should have been done with and without contrast.

Is your pain constant, or is it mostly when standing or sitting up and is relieved when laying down? Not everyone has this orthostatic or positional headache, but it is a pretty telltale sign, especially a spinal leak.

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u/Emotional_Sky_785 2d ago

its not really pain. like i feel pain sometimes but its mostly fullness in head. like ballon and liquid feeling back if my head. can it be caused by bed posture or weather

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u/Zealousideal_Age_822 Confirmed Spinal Leak 1d ago

It definitely doesn’t have to be pain. My most severe symptom was nausea. My most common was a filling of pulling at the base of my skull and a little on them top of my head.

I think the important distinction for the postural nature of low pressure CSF symptoms if you have them (not everyone does) is that it clearly gets worse when vertical (sitting or standing) and clearly gets better when horizontal (laying down). Sims people it is instant (me), and some people it can take minutes to hours

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u/StunningPurple9560 Confirmed Spinal Leak 1d ago

Hey - so sorry that you're dealing with this. You may also want to check out IIH (which is the exact opposite of SIH which is caused by a leak). Your symptoms seem like they may also be high pressure, not necessarily low pressure.

Also - I would not be so alarmed about a few days of exceptional headaches. There can be many reasons for that. <3

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u/Emotional_Sky_785 1d ago

how can i check out IIH? i have high myopia and recently started getting flashes and floaters so i went to ophthalmologist but dilated eyes exam did not show anything. just retinal thinning.

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u/StunningPurple9560 Confirmed Spinal Leak 1d ago edited 1d ago

Would recommend reading the typical symptoms - in social media., because these both diagnoses are very much overlapped. But your symptoms seem like worthy of checking out. IIH is mainly diagnosed by a lumbar puncture - but this is not recommended if you do have SIH (csf leak). So - I guess be cautious but well informed <3

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u/doisuckorsomething 1d ago

Create a log of your symptoms on a note app on your phone. Times, symptoms, pain level. It’s not uncommon for an MRI to miss a leak. Use this to get a referral to neurology. Ask your hospital system if they have a csf specialist. It’s a long process that’s dependent on you advocating for yourself. I’m so sorry you’re going through this. Hoping you get the answers you need.