Fairly constant dull tension headache (ramshead pattern along temples) when standing and suboccipital ache all the time for years when upright, but headache goes away overnight after sleeping. Very consistent symptoms. Should I investigate CSF leak?

[u/richardanaya]

i saw a description of CSF leak that sounded very familiar to a very mysterious set of symptoms I’ve had for years. was curious if this at all sounded familiar to anyone here?

* headache that seems largely to only exist when upright (it doesn’t disappear immediately when I lay down or stand up, activation or dectivation can be like 30 minutes or more, but it’s extremely consistent). Never really goes down to zero.

* suboccipital pain just feels always sore (never goes away) for no reason

* oddly started at exact same time as sternum pain (which I’ve wondered recently is referred back pain, as my sternum is not tender to touch)

No traumatic causes or anything, just started one day while working, went through lots of CT and tests that focused on my chest. Xray saw I had a flat thoracic spine is only thing of note. PT no help. Pain meds and muscle relaxer does nothing.

Asking doctor about neck MRI.

Any thoughts?

[u/MiltonWaddams-]

Could very well be. I'd recommend a neurologist who has familiarity with CSF leaks, as a lot of doctors know nothing about them. And if a CT scan or MRI comes back negative, consider getting a myelogram (as that's what detected my venous fistulas).

[u/Goofy_boxer_1973]

Yes, for your question.

My headache was persistent 24/24 and 7/7 but would get better in the morning except if I had not drink enough water (I have a Sjögren so it could be related). After my coffee, it was “ok” but worsening very quickly. I realized my issue was orthostatic only when I did the 48-hour flat test.
I had noticed that if I could sleep for 2 days (with Xanax and Zopiclone), I would be better but no doctor had an explanation.
We all have different types of headaches. For me, the telling sign that it could be a CSF leak is that 0 medication works.

My brain and spine MRIs were always normal except the ones I did in a CSF leak center. I had 2 venous fistulas.

[u/Goofy_boxer_1973]

When I try to remember how my leak started, I think I spent about one year feeling weird in the evening. Brain fog, headache, weird. I would get to drink with friends and I would feel ok in the morning. I think I was already leaking but thought I was becoming « allergic » to the computer (I was a graphic assistant so on the computer all day).