Trigeminal Neuralgia

[Mimine]

Hello,

I hope it is ok to post on this hub. I was diagnosed with Trigeminal Neuralgia today and put on 100mg of carbamazepine (Tegretol) which the GP wants to increase gradually. Apart from the horrendous pain, I am worried about carrying on with my job. I am a teaching assistant in a primary school and talking and smiling (2 of many triggers) is what I do all day. I took today and tomorrow off and will try and go back the day after tomorrow. I simply don't know how I am going to cope with the pain when I go back to work.

Any advice please? Thank you. x

[Jacjai]

Hi I feel your pain.

My partner was diagnosed with it in March.

He has suffered, especially not knowing at the time what's was causing the dreading pain.

He used to scream with pain literally banging his head on the wall.

Watching a grown man crying was dreadful 😢

He was put on tegretol staring at 100mg.

From March until today he's taking 1000mg a day, I think this is the magic number.

If he misses a dose during the day he'll know about it.

It's going to take time until you'll find the right dosage for yourself unfortunately.

I have fibro and to be honest I would rather live with this rather than Trigeminal Neuralgia, it's the worst kind of pain.

Hope you'll find your comfortable dose and make your life a little bit easier 🤞unfortunately there is nothing much you can take for it's.

[Mimine in reply to Jacjai]

Thank you so much for your reply. My GP wants to talk to me again next week with the view of increasing the dosage. It seems to be a little better today but that’s because I’m not talking very much as I am at home! 🤦‍♀️

[Jacjai in reply to Mimine]

It's difficult if that the only way for now for the pain to be managed. Hopefully when you're able to up the dosage it would be a lot better to manage.

Nerve pain is very hard to treat, not a lot dr can do, hopefully tegretol will be a good match for you, good luck x

[Sweetchild1988]

hi there I have to admit I had never heard of this before so I looked it up…. Omg what an awful thing to suffer with , I think as in most cases of severe pain you have to do what’s best for you to try and ease the pain, we all suffer with pain on differing levels and we are not all the same, we all have to try and use a coping mechanism and what works for us individually !! Only you know if you can cope with working, maybe try going part-time or doing less days, I hope you can find a way to cope with this, but do take things a bit slower and don’t feel guilty that your in pain others around you may not understand but hopefully you have good friends and family to support you, take care

[Mimine in reply to Sweetchild1988]

Thank you so much for your kind words. I’ll try and return to work tomorrow and see how I go. I know that I need to look after myself before I can look after others!

[deejames]

If it is any comfort ( just a crumb) my TN gradually disappeared after 18 months of pain. It was helped by the medication so just wait for it to work. I found meditation and breathing exercises helped me cope when it was particularly painful.

[Mimine in reply to deejames]

Thank you for your reply. Fortunately, I practise meditation on a daily basis and I’ve found that it’s helped a little with the pain.

[Yassytina FMA UK Volunteer]

Hello. I hope with the gradually increase it will take some pain away for you, it’s a lovely job my daughter has done this , very rewarding but I bet your tired as well as the pain at the end of the day. She loved it has got fibro and a few other health issues going on , sometimes she has had too have time out by having a couple days off .i feel for you as I do my daughter she did a degree from home ,2 little boys and worked 3 days as a TA so I know 1st hand how much you girls suffer, let us know how you get along xx

[Mimine in reply to Yassytina]

Thank you for your kind words. It is a rewarding job but very demanding in terms of physical and mental energy. Schools are noisy places so not sure how I’ll cope…

Well done to your daughter for her achievements!

[Summertimeshine]

oh I feel your pain, when I had my first bout of TN I seriously didn’t know what to do with myself… such excruciating pain!

I was put on Tegratol but unfortunately I had a reaction (nasty itchy skin rash - Maculopapular Rash) then I was put on Oxcarbazepine but the same reaction happened again! Finally put on Gabapentin which I’ve had before for my fibromyalgia but it wasn’t successful, but after a while of taking them for my TN it has gone pretty quiet, I still get pain every now and then in my teeth, jaw and the side of my head but obviously this is far more manageable than full blown TN

I hope that the medication works for you soon🤞🏻In the meanwhile… from my own experience - stay still as much as you can, talk as little as possible, no chewing, try not to touch your face too much and if you’re brushing your teeth be really gentle or just use a good mouthwash for the time being. I spent a lot of time shut away in my bedroom, which had to be of a cool temperature and dark!

Sending healing hugs 🤗

[Mimine in reply to Summertimeshine]

Thank you so much for your message. I’m off work today and, thinking I was feeling better, did a bit of cooking and a few lightweight jobs round the house. Bad move… The pain came back and moved to the temple and top of the head. I’m now lying down and it has settled a little. Not easy….