Hi all, I’ll attempt to keep this brief and straight to the point. I’m a 23 year old female. Roughly 3 months ago I woke up with a chronic headache, and it hasn’t ever gone away. It is every single day, and doesn’t end - every second, minute, hour - 24/7. My right eye has blurred slightly, there is colour desaturation in my left eye, I get flashes of light (it goes black) countless times a day, alongside nausea, dizziness, eye floaters, and occasional forgetfulness.
Additionally I have never-ending tinnitus with a whooshing motion when I move my head. No pain medication touches it. It can range in intensity and can be in different parts of my head, but always both sides. It typically sits at a 7 on a 1-10 scale. I had my eyes checked, and had swelling of the optic nerve and ocular hypertension. I was sent to an eye specialist, who then referred me through rapid access to the best eye specialist in Kent. At this point, I have had the words Papilledema & Intracranial Hypertension and even a silent stroke thrown at me. After countless eye tests & exams, it shows that there is only minimal swelling of the optic nerve, suggesting there shouldn’t/isn’t any pressure surrounding my brain. No bloods, MRI, lumbar puncture or CT scan have yet been performed. I have now been referred to neurology.
I was sent to A&E by my first eye specialist due to how debilitating the headaches and eye pain had become. But due to a slight increase in temperature (and 3 negative covid tests) I was told nothing could be done until they tested me for covid, and then put me onto a covid ward (I have severe asthma & my mum is on chemotherapy) - the last place I’d ever want to be, so decided to self discharge and not be seen.
It’s been a tiresome battle trying to get to the bottom of this, and I feel so incredibly defeated and dismissed. I’m at a complete loss as to what I can do. A neurology referral can take up to a year due to COVID, and I cannot get this pain under control. I have to keep all the blinds closed, as bright light hurts. This constant pain has stripped me of my personality, I spend so much time in bed because doing the simplest task just hurts.
I have been prescribed amitriptyline as a baseline treatment for the meantime, but this hasn’t changed a thing.
Any suggestions would be so greatly appreciated. Thank you all.