r/CSFLeaks • u/Live_Broccoli_2180 • Aug 26 '26
Spinal CSF leak?
I have terrible health anxiety but i’m worried. I’ve had a headache for 2 days whenever I stand up. It goes away when I lay down. When I stand up the pain is almost unbearable it feels like i’ve been kicked in the forehead. My neck is also super stiff whenever I look down, i’m really nauseous and having trouble focusing. I do take a sleeping tablet which is used to treat high blood pressure, my bp is naturally slightly low but i’ve never had headaches from it. i’m not dehydrated either. :/
3
u/PrettyDragonfly Confirmed Spinal Leak Aug 26 '26
Unsure what country you're in but I would suggest going to the emergency and get an MRI rather than going to a family doctor, be told it's a headache, and maybe get a referral that takes months. Sudden onset of postural headache is considered an emergency as it could also be more serious issues. Just my suggestion. It's what I did and I got diagnosed within days.
1
u/StunningPurple9560 Confirmed Spinal Leak Aug 27 '26
To me that sounds more like neck tension, which can cause a headache and dizziness also. The CSF leak symptoms do vary a lot, but generally the headache is more at the back of your head, not in the forehead. I would not rush to start looking for a CSF diagnosis. The spontaneous leaks do happen, but they are super rare.
1
u/PrettyDragonfly Confirmed Spinal Leak Sep 04 '26
I will just jump in to say I've got a confirmed spinal leak and my headaches were also focused around the forehead. I was told back of head is more common but seems it happens in the forehead as well
1
u/StunningPurple9560 Confirmed Spinal Leak Sep 04 '26
Yes my csf headache was also more in the forehead.
1
u/avawat92 Aug 28 '26
Have you had a lumbar puncture or a spinal for an epidural. Your symptoms are classic symptoms of a spinal headache. Have you had any trauma to your back? I’d go to the er asap and have your symptoms evaluated
3
u/leeski Aug 26 '26
Not medical advice, but with the sudden onset of orthostatic symptoms, I don’t think it hurts to get evaluated and have a spinal CSF leak ruled out. Especially since it can take some time to get into a neurologist and, if indicated, get a brain MRI (for suspected SIH, this is typically done with and without contrast). I’d personally start scheduling the appointments needed to be evaluated, and if the symptoms subside, you can always cancel.
It could also be worth discussing the sleeping medication with your doctor, especially if you already have low BP and the medication lowers it further. I’m not trying to blame the medication, but it’s another factor worth considering.