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.
I am sorry that you are going through all of this. No one should be in this much pain. A few thoughts..
1. Have you seen a Neuro-ophthalmology? They are Specialist that look at brain based issues.
2. Have you seen a Migraine Specialist, they are MD's who only see people with migraines
3. Have you had an IV with a combination of anti-Nausea medication, anti- inflammatories and migraine drugs? This has really helped me. But I have been able to manage at home with supplements and injections of Imitrix.
If these are really migraines it is very hard to stop it when it is full blown. But here is some advice: never skip a protein filled meal, always drink lots of water. Make sure you are sleep on a regular schedule, peppermint tea ( hot) helps a lot, ice or heat on neck if you feel pain and hot showers help.
If they are serious about the migraine diagnosis then start supplements asap.
I have really learned a lot from the Podcast " heads up .
Hope these help.
Thank you for your reply Onthemove1971. I have had none of the above, apart from seeing to eye specialists and 2 GP’s. I have had another referral to neurology at a different hospital now, however again - this could take 6 months to a year.
Thank you for your suggestions, I shall definitely incorporate them into my daily routine, thank you again.
The Podcast- "Heads Up" is recorded by 2 female Migraine Specialists, I highly recommend you start there. The have amazing shows with special guess. I can say this is the single best thing I have done..I am also waiting on a sleep study to rule out sleep concerns.
I hope you can get out of this cycle and learn how to prevent them in the future.
Best to you!