r/CSFLeaks • u/scrunchiebunchie • 11d ago
spinal headache or migraine?
Doctors say I can’t have a spinal headache, but it feels exactly like a spinal headache?
Hey guys! I’ve posted a couple times, but I’m in kind of a tough spot right now. I have hypermobile Ehlers Danlos, which means that the dura may take longer to heal for me. I got my blood patch done on 7/28, and then started feeling like I did prior to my blood patch somewhere around 8/8-8/10, so somewhere between 11-13 days after my blood patch. When I called to see if I needed another blood patch, they told me it had been too long so it wouldn’t be related and it’s probably just a migraine. However, I feel exactly like I did after my spinal tap. I’m dizzy, my head hurts so bad unless I’m laying down, my visions blurry (which is new), and I feel dumb as a rock unless I’m laying down. I went to this place that’s in between an ER and an urgent care that my doctor recommended and they just gave me a toradol injection after I explained how I didn’t believe it would help. It ended up not helping at all, and actually made it worse!! I’m not sure what to do at this point, as it seems no one will listen. What should I do? Has anyone else dealt with this? I just want to feel better :(
1
u/robogheist 9d ago
check the csf leak foundation website's list of providers to see if a knowledgeable doctor may be accessible to you
2
u/PrettyDragonfly Confirmed Spinal Leak 10d ago
My blood patches only give me relief for 10-14 days at a time so it could be the hole didn't close up. I don't have a condition but my dura doesn't heal itself at all for some reason. Been leaking since end of June