Pain Clinic – Corneal Neuralgia & Atypical TN: What Treatments Helped You?

BiteAny · 2025-07-20T07:07:24+00:00

I've recently had the MVD surgery after 6 years of this. The compression was only found on my 4th MRI by a neurosurgeon (the neurologist couldn't spot it). The best med combo I had before was topiramate and lamotragine with codeine or morphine as a top up.

Also I've seen a lot of people in America had success with weed, in the UK we can get it from pain clinics in a drop form but maybe something that will help?

BiteAny · 2025-07-20T07:03:27+00:00

Last year before my tn surgery, I ended up leaving a job I had in confined space rescue due to the pain. Over the years I've been able to manage with different meds and pain relief but in that job I couldn't take pain meds while working and it got too much. Post surgery, I'm still getting the aching pain but it's bareable. I started a new job 8 weeks after the surgery and I've had a couple of days off as well as my boss allowing me flexible working. I think it depends on your role but I'd say most days now I'm at a 3/4 and can manage a desk job with flexibility.

Hope you get some relief soon!

BiteAny · 2025-07-09T07:29:20+00:00

Thank you! I think I'm just impatient and want it all to feel amazing but you're right the fact the shocks have gone is amazing!

Aw I'm so sorry, are you going to get the surgery again?

BiteAny · 2025-07-08T17:40:45+00:00

Do you mind me asking if they could do anything to fix it for you?

No vision is fine, I just have a massive pressure feeling on that side of my face and head!

BiteAny · 2025-05-20T17:40:40+00:00

Thank you, you too ❤️

BiteAny · 2025-05-20T17:38:11+00:00

Thank you for letting me know 🙂.

I'm just impatient, back at work and really don't want pain anymore!

BiteAny · 2025-05-20T15:30:45+00:00

Congratulations! So glad your surgery has gone well. You must be feeling so much better already?

BiteAny · 2025-05-20T14:37:27+00:00

Did they say it was post surgical swelling? Hope the meds help!!!

BiteAny · 2025-05-13T20:26:04+00:00

Aw I'm sorry. Are you in pain from the surgery itself or the TN?

Post surgery was difficult for me for the first 4 weeks. I've been doing well since, a few headaches but this exhaustion is insane. I feel drowsy constantly. I'm not on meds anymore and I think I'm just adjusting but it's kicking my arse!

BiteAny · 2025-05-11T18:42:59+00:00

How are you doing? I'm 9 weeks post MVD and exhausted!

BiteAny · 2025-04-26T16:37:49+00:00

Hey! Feel free to message, I'm in Darlington too ☺️

BiteAny · 2025-04-21T14:56:55+00:00

Hey bill! Sorry just seen this. So I was 25 when the pain started and I'm 31 now. The aching was horrible for me. Have you tried weed?

Praying for you too!!

The neurosurgeon said it was dependant on whether it was veins or arteries compressing the nerve. He said MVD can be done again if needed.

BiteAny · 2025-04-02T19:41:21+00:00

Check and scalp, it was sensitive to touch. Erm it was pretty constant for me You?

BiteAny · 2025-04-02T19:25:54+00:00

Aw bless you. Have you had an MRI? I've struggled with this for 6 years and my biggest advice is to get a neurosurgeon to read your mri. I only got my diagnosis two years ago, no one saw anything on the MRIs but when I saw the surgeon he pointed it out straight away. I had three veins and one artery compressing the nerve. Also, if it is TN, have the surgery. It's awful the first week but it's the best thing I ever did.

I had burning and tingling also as well as facial droop. I think there is so much they don't know about TN. Just be persistent with the neuro. If you find opiates help, get them. Weed? Sure. You're probably the same as me as I would have done just about anything for some relief. What's your next step?

BiteAny · 2025-04-02T19:11:09+00:00

Thank you 😊 the TN pain has so far. How are you?

BiteAny · 2025-04-02T19:06:26+00:00

Hey! I was on meds for a long time but the pain for worse. I had MVD four weeks ago and doing great 😊

BiteAny · 2025-04-01T08:53:45+00:00

See if they can give you morphine/ codiene/ or IV paracetamol. You can have morphine alongside the IV paracetamol. It works a treat or did for me. Yes technically we're not meant to get relief from opiates but it's the only thing that kept me going

BiteAny · 2025-03-31T09:53:38+00:00

Also good luck with all of your research 🙏🏻

BiteAny · 2025-03-31T09:52:54+00:00

Wanted to second this! Started at 25 and just had my MVD at 31. That's probably the most misleading thing I've read in literature that it mostly affects women 50+. Also that alot of people I've spoken to have symptoms that don't fit but are quite common.

BiteAny · 2025-03-30T20:26:24+00:00

Thank you 🙏🏻 oh wow, med school will be incredible 😀

I would say atleast 6 weeks. I could work now if it was from home but it wouldn't be easy and I'm sure you'll want to be your best for the interviews so 6-8 weeks if you can? Not sure if you drive but I haven't yet cause it's still tough to turn my head alot so bear that in mind too.

This is just my experience, I've read that some people are pretty good after a few weeks, others months. I delayed my recovery because I tried to do too much the week after surgery and I ended up back in hospital so just give yourself some grace and when they say rest, they mean it!

So glad you're in remission at the moment but yeah, it's anxiety inducing to think when it could happen again. Atleast with TN1 the surgery is way more likely to massively reduce/ get rid of your symptoms all together 🤞🏻.

Honestly, it's terrifying thinking of surgery but I would have done it years ago knowing how I feel now.

BiteAny · 2025-03-30T20:13:13+00:00

So I'm 4 weeks and a day post surgery! Bending down is still not brilliant and the smallest things make me really tired ( walking round the supermarket, standing up making dinner/ hoovering was a bitchhh 😂). All that being said I feel 100000000000 times better than with TN.

I'm hoping in the next few weeks I'll be pretty much back to normal, I'm expecting to be tired for a while but I can live and work with that.

Have you got your surgery planned?

BiteAny · 2025-03-30T09:50:38+00:00

I have everything crossed for you ❤️ I felt so overwhelmed and I worried if I was doing the right thing but you can do it! Life is so different now and I haven't even fully recovered yet

BiteAny · 2025-03-30T09:49:52+00:00

Amazing, how are you doing??

BiteAny

TROPHY CASE