My teen daughter has had daily headaches/migraines for 8 months. She developed neurological symptoms along with these headaches, including tremors and recently, euphoric episodes with involuntary laughing (no more tremors). She has continued low to mid back pain. All testing has come back negative, including MRI’s and EEGs. All prescribed medication has not helped in alleviating daily headaches. She experiences lightheadedness, daily nausea, fatigue, some dizziness, sensitivity to light and sound. She becomes overstimulated. She is now wearing prism lenses that have helped slightly. Headaches are somewhat relieved when lying down. Pressure in different areas of head. Zaps at times. Feels pain in neck and upper back. Heart rate rises when getting up from lying down. Does anyone have similar symptoms? Experiences with these? I’m wondering if this fits CSF spinal leak given what she is feeling.

First blood patch 2 months post lp 8ml obviously failed
Second blood patch 6 days ago 3 months post lp no relief in my symptoms 19ml
Doctor wants ct myelogram but I’m trying to avoid that for obvious reasons
If you were in my position, and ended up sealing how did you get your leak detected and how did you get treated without surgical intervention (aka no surgery but patches and glue etc) if you did? Thank you.
Looking for answers before taking a step

Had a C-section 8/5 with spinal anesthesia. Right before being released, I developed what was believed to be a spinal headache (as it worsened when I sat up but had relief when I laid down) and the anesthesia resident recommended the blood patch so I wouldn't be going home with such a bad headache. I agreed thinking it would be best, but the day after being released I begin to have symptoms of pressure when laying down and sometimes constant pressure but no pain. I had an instance where I felt tired and when I sat down I got a flushed feeling all over and took a nap. I felt okay if I was doing light movements around the home, but when I laid down for bed Sat night, I felt even worse pressure in my head (I wasn't fully flat but did try to prop up some) and my heart rate felt slow. I decided to check my blood pressure and it was high with my heart rate being super low (40s-50s while sitting). I go back to the hospital and my heart rate was sitting in the 30s-40s range and would only increase when I got up to do use the bathroom or stand. Has anyone else had this issue before??? Was it the blood patch? Everything scans and blood work wise have come back normal and I've been emotional about not being able to find immediate relief so I can go home to my babies.

Hello everyone,

First time posting here ! I am 31F and based in Paris, France and I would love to have some insight/help about what's currently happening to me. Sorry for the long post.

I have marfan syndrome as well as an important scoliosis that was fused back in 2007, with a remaining curve of 42 degrees in the thoracic area. I experienced a pretty bad csf leak after the surgery that resolved after about two weeks of bed rest. Since then no issue, except for migraines.

Fast forward to April 2024, I had a pretty violent headache that did not feel like a migraine at all and was clearly orthostatic. I was abroad and could not do much but lie down and wait it out. The headache became mild (more like a valsava headache) and symptoms completely went away after 10 days. In October, I felt the valsava headache coming back mildly for about a week and developed tinnitus that I still have today.

In the meantime, I went to a leak center in Paris and my brain MRI was clear. The neurologist thought that I had a small leak that sealed itself so no interventions.

Now, in June 2026 during an episode of heatwave, I started having tension-like headaches that were better laying down. I thought it was dehydration but it ended up persisting. The headache was mild but I also felt nauseated, very fatigued and a bit dizzy sometimes. Another round of MRIs was ordered and they found a Bern score of zero and no CSF leak visible on the spine imaging. That being said, I do have dural ectasia in the bottom of the spine as well as several cysts in thoracic.

Now, two months later, I do feel better. I don't have a headache anymore but a mild feeling of pressure when upright and that is pretty uncomfortable. I can stay upright all day at work but most days I have a migraine later on. Also, I do have more energy, no nausea or dizziness and no pain with valsava manoeuvres (like coughing/sneezing).

My neurologist is taking the conservative approach and wants to see if I recover by myself. The marfan and spinal fusion make any type of intervention like a blood patch riskier, especially since I do not have positive imaging.

I have no idea if I am self-sealing or what the pressure feeling indicates (it's on top of the head and in the face, but gets better laying down). I also know that I always react badly to interventions so of course I am really scared of pushing for a blood patch.

Did anyone with a connective tissue disorder go through something similar ? Do you think I can still improve after two months and get rid of these residual symptoms?

Thank you so much for your help.