Trigeminal Neuralgia

Everyday living
1

Hi all

Husband has SP and more recently suffering from Trigeminal Neuralgia. He started with Carbamazapine, then because of the side effects started Oxymazapine. However neither are now effective and he is at hits wits end and has had constant head pain for 5 days. He has had frequent headaches in the past and used to take Anadin extra which seemed to help, but not at the minute. He thinks his current head pain is caused by the neuralgia which is currently very active.

The consultant at the local pain clinic (who he saw some time ago) said he could take the Anadin extra as it would not cause headaches, which can happen if you take too many of certain painkillers on a regular basis. This is not what a consultant at the London Neuro hospital said, but there you are.

A message is out for the MS nurse to phone but thought I would see what anyone else thought.

So question: Advice on managing on Trigeminal Neuralgia?

Thanks in advance.

2

there are options of an injection through the cheek, radiation and surgery for when painkillers have been tried and not relieved the pain.

you really should discuss it with your doctor and/or neuro.

​good luck xx

3

Thanks for the response. Have no great faith in neuro locally. Now waiting for a call back from GP to look at dosage ie balance side effects with control of the pain.

regards

4

I am a long time TN sufferer. When medication was no longer effective I had the needle in the cheek that Pigpen mentioned. I was referred to a neuro surgeon by my neuro but your GP could do this too. There are a range of surgical interventions including a gamma knife in some areas. I found that I needed to be quite assertive to get the help that I needed. Although Drs took me seriously I don’t think they realised how desperate I was, until I told them!

I found this website very informative - http://www.tna.org.uk The form is especially helpful.

Jane

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5

Thanks for the link, will look further at a surgical options. It was the idea that our neurologist could perform a surgical procedure was a major deterrent but a neuro surgeon is something different.

Regards

6

i had needle treatment in september, excellent no pain since easy treatment,hope it lasts

7

Good to hear a positive result. Have spoken to GP this morning, very reluctant, says he could end up worse than before. Difficult to know what to do.

Regards

8

Definitely worth looking at the Trigeminal Neuralgia Association site and talking to a neuro surgeon. Also worth remembering that GPs are generalists and that you can become more expert that them on a particular area by reading the right stuff and talking to the right people. Worry if the neuro surgeon says your husband might end up worse - don’t worry just because your GP has said it.

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9

I’ve been having the needle in the cheek about once a year, for the last 20 or so years, it’s called, in Cambridge anyway, a Radio Frequency Lesion, well it was when I first had it, the name may have changed since. It’s not a cure because it wears off but, for me anyway it works for about a year and I was told that it does not work for everybody.

David Holmes

10

I couldn’t agree more with sewingchick - a GPs assessment of possible surgical outcomes is not something that I would be guided by. When I saw the neuro surgeon he was very frank about the fact that a worst case scenario of the needle treatment could be a permanently numb face. Well guess what - the left side of my face is pretty numb but you can’t tell from looking and its a million% better than that bloody pain.

if you consult with a surgeon you can weigh up the pros and cons, you don’t have to go ahead if you don’t want to. It’s pretty hard to imagine how you could be worse off than having TN. Most procedures come with the “it might not work” caveat but I don’t think any will potentially make the situation more painful. Read up on the TNA website - knowledge is power.

Its about 6 years since I had mine done and I still take a low dose of carbamazepine - but I am pain free.

11

Thanks for all the responses. GP has prescribed Naproxen 250mg 1 - 2, twice a day. Not sure if they are doing any good at the moment, but really will look into the surgical options.

Thanks again everyone.