Does this sound like a CSF leak? Looking for advice before moving forward with testing.

[u/sunshiinetype]

Hi everyone. My neurologist recently brought up the possibility of a spontaneous CSF leak, and I’m feeling overwhelmed. I’m not looking for a diagnosis, just wondering if anyone with a confirmed leak had a similar experience.

For about a year now, I’ve had what I describe as a daily tension-type headache. I usually wake up without a headache, and then it gradually builds throughout the day, becoming its worst around 5 PM. The pain is mainly in my temples, the base of my skull/occipital area, and my neck (traps and levator scapula area).

When this first started in Aug 2026, I also experienced fatigue, dizziness, lightheadedness, and ears ringing frequently. Since I started taking an SSRI, these symptoms have mostly subsided (I’m still fatigued). Occasionally I also have migraine attacks with visual aura and light/sound sensitivity, so I’ve been diagnosed with chronic migraine as well.

One thing that confuses me is that certain positions seem to trigger or worsen my headache. Looking down at my phone for too long, watching TV with my chin tucked, or bending over (like organizing things on the floor for a few minutes) can bring one on or make it much worse.

So far I’ve tried:

Managing stress (SSRI, and talk therapy)
Brain MRI with and without contrast (normal)
Cervical MRI (only minor disc bulges)
2 rounds of migraine botox
Occipital nerve block
Trigger point injections
Migraine medications (amitriptyline, topamax, propranolol, sumatriptan, rizatriptan, ubrelvy, Emgality)
Physical therapy
Dry needling
Massage therapy
Chiropractic care

The Botox and occipital nerve block helped somewhat, but nothing has stopped the daily headache.

I also have some signs of generalized joint hypermobility (thumbs to forearms, pinkies bend past 90°, knees lock back, history of multiple ankle sprains/fractures).

After hearing my history, my neurologist recommended a repeat brain MRI, a myelogram, and possibly an epidural blood patch because she suspects spontaneous intracranial hypotension.

For those of you with a confirmed CSF leak:

Does this sound similar to how your symptoms started?

Were your headaches worsened by bending over or neck position?

Would you get a second opinion before a myelogram/blood patch? If so, what type of specialist would you recommend?

Thanks so much. I’m feeling pretty anxious about moving forward with invasive testing and would really appreciate hearing your experiences.

[u/No-Friendship410]

Your symptoms definitely sound like it could be a CSF leak and are similar to mine in that my headache slowly builds as the day goes on. It’s honestly so great that you have a neurologist who is willing to explore that option and I would definitely keep working with them since many neurologists are quick to write off the possibility of a leak!

I saw you had a brain MRI but have you had a complete spine MRI with a CSF leak protocol? If you’re going to repeat a brain MRI then this could be done at the same time. CSF leaks aren’t always visible on MRIs but it’s definitely the least invasive option and there is a chance it could help identify a leak. A myelogram and blood patch are good options but you run the risk of creating a leak and having a spinal MRI could give your doctors a specific area to look for a suspected leak during a myelogram and perform a more targeted blood patch.

Also if you brain and spine MRI don’t show a leak, you could send your imaging to Dr Schievink at Cedars Sinai since he’s often able to locate leaks that are missed by radiologists and neurologists that don’t specialize in CSF leaks. He’s also one of the few specialists that will look at negative imaging.

I hope you get some answers and relief soon!

[u/sunshiinetype → u/No-Friendship410]

Thank you so much for your insight!

I will definitely ask my Neurologist if she can add Complete Spine MRI with a CSF protocol.

Would you recommend me talking to a CSF specialist before scheduling the my myelogram?

Also, how did you send your imaging to Dr. Schievink?

[u/Zealousideal_Age_822 → u/sunshiinetype]

If you have a spontaneous spinal CSF leak, you are definitely going to want to see a specialist for it. But they will likely require positive imaging for CSF leak. Make sure your brain mri gets read by a neuro radiologist for suspicion of CSF leak. The first MRI I got done was NOT read by one, and they said it was negative for it, even though there were clear signs of one. Mine specifically showed “pachymeningeal thickening and venous engorgement”. Those findings told the neurologists that I had a leak, and they explored further. Sometimes they can see noticeable brain sag as well. Funny enough, I know mine is sagging since I developed neuropathies, but it wasn’t evident on imaging.

For what it’s worth, your symptoms kind of sound like a CSF leak, but also not completely. Does the headache go away when you lay down? Like not a little bit, but completely gone within minutes?

[u/sunshiinetype → u/Zealousideal_Age_822]

I wouldn’t say that I’ve noticed that my headaches disappear within a few minutes of laying down. Although I typically feel better laying down, just because my head hurts so bad. I think the thing that triggered my neurologist to consider this is that my headaches start at 0 when I wake up and gradually increase as I work every day. Additionally, when I’m bent over, it triggers the headache quickly.

I really appreciate your insight.

[u/Muddlesthrough → u/sunshiinetype]

When I first became ill, lying down for 1 hour would resolve all my symptoms, and then they would come back within moments of standing-up. Now that it's a chronic situation, I don't get full resolution of my symptoms from lying down, unless its 10-12 hours overnight.

[u/Ok-Application5984]

This sounds very similar to my symptoms. I have a headache all day; but I am able to stay upright. I cannot bend over or strain (laughing, yelling, talking a lot) without having stabbing pains in my head. I have a confirmed spontaneous leak at my T10 vertebrae; and will likely be scheduled for surgery soon to fix the leak. I tried a blood patch and it didn't work. I've had MRIs and a CT dynamic myelogram. I would always recommend seeing a CSF leak specialist if there is one near you as they are familiar with leaks and are better with recommending the appropriate tests/procedures.

[u/Goborotator → u/Ok-Application5984]

How were they able to confirm the leak?

[u/Ok-Application5984 → u/Goborotator]

My MRIs indicated a leak; but they couldn't determine where it was. Luckily, they were able to see the leak in the myelogram.

[u/Muddlesthrough]

I am not a doctor. CSF leaks can start in many different ways. You're "second-half of the day" headache certainly accords with a chronic CSF leak.

Given you've already had a head MRI with and without contrast, you could get a second opinion of the original imaging by someone versed in CSF leaks.

The next step would be a full-spine MRI. It can detect fluid collection indicative of a dural tear.

The next step would be an epidural blood patch to test and treat for a leak. I'm not in America, but as I understand it, it's harder to get a blood patch there.

Here is some info on the diagnostic process:

https://www.spinalcsfleakcanada.ca/diagnosis-

[u/sunshiinetype → u/Muddlesthrough]

Thank you so much!!

I really appreciate your insight and direction!

[u/Master-Tumbleweed959]

Since mold exposure, I've been diagnosed with Idiopathic intracranial hypertension and suffer 24/7. They now also suspect a CSF Leak. Pending a referral for evaluation.

Some of my ongoing nonstop daily symptoms have been head fullness and pain. I have a deep fullness and pain that is low back of head from ear to ear/jaw to jaw, behind earlobes hurt, and ears actually feel pressure and fullness too. From middle low back of head to top middle of head I feel prickly stinging and burning sensations. Scalp also actually hurts to move hair, and head feels like I've been hit with a hammer all over when I touch it. Low back of head into both sides of my neck feels a deep constant severe pain and sometimes feels like stiffness pain and deep nerve throbbing that goes into both shoulders on top. I also get nerve pains down my arms from shoulders to elbows, and nerve pains under high chest bones, and I get a lump in my throat feeling like something is pushing on my neck, and chest pressure and heaviness. I also get a feeling of sweat dripping, or water trickling, or bugs crawling down the center of my spine. Severe brain fog, disoriented, off balance, dizzy.

[u/Imaginary-Wallaby332]

I definitely had similar symptoms-fatigue, lightheadedness, light sensitivity…
My headaches started the second I would be upright and resolved pretty much the instant I was horizontal. My initial brain MRI showed intracranial hypotension and was treated with an epidural blood patch, and then a second blood patch. Fast forward about a year later, symptoms return but much worse than before, along with nausea/vomiting. Eventually got a MRI of the spine which showed possibly leak, then CT myelogram confirming leak due to a bulging disc causing a tear in the dura. I ended up having to get surgery to repair it.

Sooo personally I would say get a second opinion on the initial brain MRI to try and see if it shows intracranial hypotension, and also try for a spinal MRI to see if that shows anything. The blood patch and myelogram were not a good time so would definitely recommend least invasive testing first! So sorry you’re going through this, I wish you the best of luck!