So since my EDS pain has started to become a bit of a bother, I’ve been doing a lot of research on EDS. Several websites I have found and one bloggers post talk about the link between EDS and headaches/NDPH, how EDS can cause headache conditions like NDPH because of cervical spine instability, laxity in the cervical ligaments and stretchy blood vessels. I never knew this before no doctor has ever told me that possibly the reason I have NDPH is because of my EDS. My neurologist has never mentioned it, neither has my POTS professor or the rheumatologist I saw that diagnosed me with EDS a few years ago. I was going round thinking I just had completely unrelated conditions because nobody ever told me otherwise. And this makes me angry that nobody has ever put two and two together or that they know and have just never bothered telling me.
This gets me thinking that because EDS is genetic and if that is what’s causing my NDPH, is that why no medications or treatments have ever helped me, because the problem causing my headache is genetic?! So taking this theory further does that mean I will have NDPH forever because what’s causing it is genetic and therefore the root cause of the problem can’t be fixed?!
I was doing pretty well with acceptance until I found out this information and now I’m petrified I will definitely be in pain for the rest of my life and I’m not too sure how to cope. I always had a bit of hope that one day maybe my headache would go as quickly as it came, but this new information has just diminished that hope. I always thought that possibly finding the cause of my headache would make me feel better but it’s just made me feel worse and I’m feeling very miserable right now.
I’m going to get a referral to a rheumatologist from my GP as soon as I can get an appointment with her, but I probably won’t be able to get an appointment this week and next week I’m going away for two weeks to stay with friends whilst my mum is in Dubai, and they live quite far away from where my doctors is. So if I don’t manage to get an appointment this week I will have to wait another two weeks to see her about getting a referral sorted.
I just want some answers, is my EDS going to get worse? Is my EDS causing my NDPH? If it is will I have NDPH for the rest of my life?