I’m feeling rather disappointed in myself. I’ve been enticed back in to trying to find a reason why I always have a headache.
It started with my EDS getting worse, so I did some research which brought up the fact that EDS can apparently cause headaches such as NDPH. And then I posted on the NDPH group on Facebook about my EDS getting worse and someone replied with that I should get checked out for a cerebrospinal fluid leak (CSF leak) as there are links between EDS CSF leaks and headaches. So I did some more research which led me to join a CSF leak group to get some info. The people on the group were lovely and really helpful, they said that my story sounds a lot like some of theirs and they all have CSF leaks, and they thought I should get checked out for one. One of them even see’s the same neuro and neurosurgeon I do, and that I should ring up my neuro’s nurse and bring it up with them. So the next day I rang up, my neuro’s nurse was really lovely but she doesn’t believe I have a CSF leak but said to write it all down in an email and she would speak to my neuro about it next week. I haven’t done this yet as I’m not entirely sure whether I want to pursue down this avenue which will no doubt be a dead end.
I feel disappointed in myself that I have been enticed into trying to find a reason why I have a headache instead of just accepting the fact that I always have a headache for no reason. I feel disappointed in myself that my acceptance of my situation wasn’t strong enough to withstand the temptation of thinking there could possibly be a reason for the pain in my head.
My EDS is getting worse, I’ve got two of the main joints that are causing me issues strapped up in kinesio tape and supports in the hope that this will help enough for me to continue with taekwondo. But nearly all of my joints have started causing me pain. I’ve made an appointment with the professor that diagnosed me with EDS back in 2011. He is apparently the main guy in the country for EDS, so I have an appointment with him on the 10th of June up in London.
Fortunately the pain in my joints is pretty mild at the minute, and it’s not much compared to the severe pain in my head, but EDS is progressive and degenerative meaning it’s highly likely to get worse; and that I am terrified of.
This all comes at a really bad time; well actually there is never a good time for pain. But it comes at a time where I was starting to feel emotionally better, where I was starting to get my life back on track after the pain derailed it. And now I’ve been hit with more pain on top of my headache, and I’m feeling pretty miserable about it.