In the summer I wrote about having an MRI after finding out there was something wrong with my eyes at my last eye test in March. It’s taken quite a while but I got my MRI results back last week and thankfully they came back all clear. There’s nothing to indicate that I have Intracranial Hypertension and potentially the bulging optic nerve may have been something I was born with particularly as my images looked similar between eye tests. So what is wrong me with? We still don’t know. The next step is to have an ultrasound on my eye which sounds pretty uncomfortable but I’ve had ultrasound scans before. This will hopefully determine a condition the opthamologist said but that just doesn’t sit right with me particularly as my vision now does have some light sensitivity and my headaches have become a chronic pain condition resulting in chronic migraines. The chronic headaches are something that have gotten persistently worse over the years, particularly after stopping hormonal contraception and having my son.
I didn’t really put myself into the ‘chronic pain’ thing because it feels selfish. It feels like by me talking about pain I am invalidating other peoples lived experiences of living with real life altering pain on a daily basis. But the truth is the level of pain and persistency of headaches does stop me from getting on with life. Over the last few months since having my MRI I have been trying to keep track of my pain levels a bit more to make me stay in check with my body. I can not remember a day when my pain level was 0. Most days it is manageable and around a two or a three (out of ten on my own pain scale) and then during a particularly bad flare up reaches a 7 or an 8 around three times a month. A 10, thankfully, has only happened once in the last few months were I’ve had a migraine and extreme ovulation pain which completely stopped me doing anything and left me feeling sick, unable to eat much and in a state of brain fog for about ten days afterwards. As a result I am learning my cycle of headaches much better and they are absolutely in sync with my menstrual cycle which does make me think its hormone related and if my ultrasound scan comes back as normal too I will be heading to the GP to talk about it too.
I don’t know why I am trying to invalidate my own pain – pain is pain and it’s not ‘normal’ to live with it every single day. There are absolutely liftestyle changes I want to make to help reduce my pain and make things easier but I do not think this will be a cure-all. I know migraines are a side effect of having had epidurals so that is something that can’t be ruled out. Another recent conversation I had made me think that it is potentially cortisol related too. As I have mentioned before I am awaiting an ADHD assessment and speaking with other women that have had late referrals for ADHD they have admitted to frequent and persistent migraines prior to starting medication. Whilst again I am not expecting this to be the cause it does give me some hope that seeking help for the pain, the daily struggles of my neurodivergent brain and binge eating disorder problems I may have some pain free days in the future.
The absolute best news though is of course that my MRI was normal and there was nothing to suggest a brain tumor or anything else terrifying which has of course been running through my mind since I had the scan. One thing that did make me think it was ‘fine’ when I got my appointment letter to discuss the results was that it came from the eye clinic rather than a nerurologist and I think if there had been something wrong I would have heard back much sooner than November. Anyway, I will keep you updated on my search for a pain free existence amongst eye problems.
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