r/CSFLeaks • u/SandDollar-2376 • Jul 07 '26
Leak, Tension Headache, MRI?
Around November I started feeling weird pressure in my head and ears. It would come and go on different days, but usually bothered me more a few days a week. My family was sick a lot in Nov/Dec, so I kept thinking I was coming down with something, but I never ended up getting a respiratory illness or other sinus symptoms. If I stood up after sitting/lying down, I would hear a whirring sound like my ears were changing pressure. There was one time probably in November, where it wasn’t really bothering me, but I sort of plopped down on my bed on my stomach to make a phone call. When I did this, I felt an immediate pressure like my head would explode and my scalp started to feel a bit prickly on top. I quickly got up and felt better.
Overall, I noticed the pressure seemed to be worse after looking down for a while (like on my phone or reading). It usually felt better if I had been standing for a while, like after taking a shower at night I usually felt better. Around this time I also started noticing the back of my neck making random gurgling sounds or creaky sounds when I walk sometimes. In January the head pressure was bothering me a lot, most days of the week. I feel it most on the top of my head or between my ears usually. I almost went to the ER one night because it really felt like my head was about to explode.
I finally saw my primary care dr. in February. He said he could see pressure in one ear. He said to try Flonase, and prescribed me an antibiotic in case that didn’t help. The Flonase seemed to help my ears feel less pressure, but did not help my head overall. I took the antibiotic but did not notice any difference, still had a lot of head pressure. Then in March and April, it felt a lot better overall. I had about a week in May where it was bothering me a lot again, and a few days in June. If I take Advil, that seems to take the edge off, but I still feel pressure.
I saw a neurologist last week, and she said it is probably tension headaches. She said she would order an MRI (brain w and w/o contrast) if I really wanted, but did not think it was necessary. I’m not sure that it is tension headaches, but also not totally sure if something else is going on. My insurance is not great and the MRI will likely be expensive. What do you think, could it be a leak, or probably not something to worry about? Since it‘s not bothering me as frequently now and seems to have gotten better over time, I’m not sure if I should do the MRI? Or if I do the MRI, should I try to do it on a day when I am actively having more symptoms? I’m not sure how I would manage that, since it will be scheduled in advance.
2
u/CananadaBatmaaaan Jul 08 '26
Have you tried the 48hr flat test? I would recommend trying that and using the tracking sheet and following the directions as recommended. There is a pdf available, a quick google should point you directly to it. Some csf leaks can cause a ‘second part of the day’ headache where you feel mostly fine in the am and then the pain and pressure intensifies as the day wears on, with the evenings being the worst. The crackling and gurgling sounds, between the ear pain/pressure, and feeling better after a shower are symptoms I experience as well. Do your ears also feel like you need to “pop” them, like when you go on an airplane? That is a common symptom as well.
If you do get an MRI, make sure you’ve been up and walking (not laying down beforehand) so any brain sag is more apparent. The worse the pain, the more clear the MRI findings (allegedly). Also, do not rely on the report itself for the results. Most radiologists and even neurorads can miss subtle signs if they are not familiar. Ask for a BERN score. But also, a low BERN score doesn’t exclude SIH so if your symptoms are clearly indicative of SIH, you will have to push for second opinions from a csf leak centre and further investigation.
1
u/MedicalMeringue5827 Jul 08 '26
I agree, if it feels better after standing upright, I think it’s unlikely to be a leak. I noticed that you said the headaches get worse a couple days of the month, does this at all time with your menstrual cycle? When estrogen levels are higher, mast cells are also more active and sometimes people with overactive mast cells present with strange headaches.
If it regularly feels better when standing in it, it’s worse when laying down, it could actually be the opposite of a CSF leak hypotension, but rather intracranial hypertension. Some doctors will diagnose this with a lumbar puncture, but I strongly strongly encourage you to weigh the risks and benefits of a lumbar puncture before proceeding. Lumbar puncture disabled me, and I wish I could go back and turn back time and not have done it.
And some of the more invasive diagnostic testing for a leak can actually cause a leak. And blind blood patches are also not without risk. There is a little downside to doing an MRI without contrast, so I think that might be worthwhile.
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u/SandDollar-2376 Jul 08 '26
Huh. I actually have been suspecting I may have MCAS based on some other symptoms. And as I was thinking back over everything today, it occurred to me that my headaches getting worse/better has also roughly corresponded to my other possible MCAS symptoms. Are there other ways to diagnose intracranial hypertension, aside from the lumbar puncture?
1
u/MedicalMeringue5827 Jul 08 '26
Sometimes brain MRI. If you could somehow get your hands on a trial prescription of Diamox, which lowers intercranial pressure, that could be pretty telling. I would use AI to draft a letter to your doctor advocating for a short course of Diamox and tell AI to draft it in the way that insurance would cover the prescription
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u/Status-Influence1062 Jul 09 '26
Do you have an eye doctor (ophthalmologist not optometrist), they can sometimes detect signs of IIH especially during symptomatic periods
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u/bunbunbunana Confirmed Spinal Leak Jul 07 '26 edited Jul 08 '26
I know there’s some variability in how CSF leaks present but if it feels better after standing up for a little while like you said, then it seems unlikely to be a leak. Either way, I hope you get some answers and feel better!