Possible AN with eye pain

[Loonywoman]

Hi all. I have been diagnosed with a possible AN or Schwannoma after an MRI in November 23. I am due a second scan in April to see if a very small "lesion" spotted on the first scan has grown. Although I occasionally suffer from tinnitus and definitely have balance issues my main symptom is severe pain around my left eye. I went to my GP suffering from chronic fatigue in July 2022. The eye pain began sporadically in November 2022 Nobody connected the two symptoms then or since. I went initially to my optician and spent months tinkering with my prescription. Finally in September 23 with the pain now 24/7 I was referred to an ophthalmologist who said my eyes are perfectly healthy and I must have trigeminal neuralgia. But he did refer me to a neurologist and for an MRI just in case. During the wait for an MRI various anti epilepsy drugs which are effective for trigeminal neuralgia had no effect. I was now taking up to 10 paracetamol daily as they actually worked. I got anxious waiting for the MRI so paid to go private. The ophthalmologist who referred me was sent the results phoned me two days before Christmas to say there was a small "anomaly" near my left eye but it was nothing to worry about. It was 8 weeks later that I saw a neurologist who hadn't even viewed the images. Another two weeks for the multi disciplinary team to view the image and suspect a possible schwannoma. So they suggested a raft of painkillers to experiment with, and an array of blood tests, the results of which I am waiting for and a repeat MRI. At the moment I am on Pregabalin which does seem to be helping but not without some unpleasant side effects. And waiting for the end of April to see if my small anomaly has grown.

My main question is, has anybody else diagnosed with AN suffered from severe eye pain? I mean severe enough to wake me from sleep and seriously contemplate getting somebody to chop off my head.

[Reddington__]

Hello Loonywoman , I can't say I have had eye pain but I can sympathise with you in that my tinnitus has gotten so loud and screaming that I would allow someone to chop of my ear or my head right now ! So you do have people on here who absolutely get what you mean . I'm sorry I couldn't be more help . I am also relatively new to brain tumour/ AN . X

[Loonywoman in reply to Reddington__]

Thank you Reddington. It is early days for me. Still waiting for test results to confirm AN.

[SunFairy]

Hello Loonywoman

Sorry to hear you are in so much pain. I have suffered with twitchy and dry eye so it can be sore, I have had times when I've had a shooting pain in my eye but honestly nothing like you describe. My eyes were checked last summer and are healthy. I tend to suffer a lot of headaches/migraine though.

I'm not sure that severe pain in the eye is a classic symptom if an AN, which could be why no one has associated it before now.

There are plenty of people here who understand what you are going through, it is a good place for support. Also you could try the BANA as they are the official organisation and have loads of information.

I hope you get the right treatment to help you and wish you all the best with your next MRI in April.

Sunfairy 🌼

[Loonywoman in reply to SunFairy]

Thank you for your sympathy and advice. I agree, eye pain is not a known symptom of AN. I suspect the term AN was used to keep my quiet while further investigations are undertaken!

[SunFairy in reply to Loonywoman]

Bless you. Loonywoman, Well hopefully someone will get to the cause of your problems when they have completed their tests.

I wish you all the best.

Sunfairy 🌼

[Nikzstew]

Hi Loonywoman, I can completely emphasise with you. I too have eye pain and was sent to opthalmology. I don't have it 24/7 which it sounds like you do, but I have been on amitriptyline and gabapentin for a quite a while for trigeminal pain which I think keeps me predominantly pain free. I notice my pain does return towards the end of the day or if I'm tired. I have learnt to pace myself and pencil in lots of rest after a busy day. Frustrating I know but it has helped. Good luck on your journey.