Forum

Trigeminal Nurelgia

Hi

Firstly have not been on here for about 12 months so hello all

As I am sure there are many others of you that along side MS, suffer with this awful TN, I am really struggling at the moment. I am currently taking carbamazepine which I cannot increase to more than 4 tablets per day because if I do then my white blood cells drop really low, but 4 tablets a day do not work effectively, the doctors have no idea what else to do as these apparently are the best tablets for this condition! As sufferers know the pain is unbearable.

How do others cope? I am really really at my whits end and fed up with crying all the time with the pain.

Have any of you had the operation or the injection for this, if so how was it

Many thanks to you all

Linda xx

Hi Linda,

Sorry I can’t help with details of the op or injection, but I’d love to know too. I’m currently in pain with this TN as well. My GP wouldn’t prescribe carbamazepine as I’m taking pregalbin. So I take a shedload more pregabalin (within the acceptable range of course), along with co-dydramol and ibuprofen. Sitting/sleeping with a hot water bottle gives me some relief too. I took it into work and luckily have a desk job and understanding colleagues so that I could use it there. I would ideally be off, but am only 2 weeks back after being off for 7 weeks with double vision. Don’t want to push my luck, so feel like I need to be in. The pain is chronic though and I really do empathise.

Good luck with it,

Cathy

x

Hi Linda,

Firstly – my sypathies, only TN sufferers really know how dreadful the bloody pain is.

I took carbamazepine, amytriptelene and gabapentine (all at the same time) Unfortunately the pain remained and I was a zombie. My neuro referred me to neuro surgery and I had the procedure where they put a needle in your cheek and freeze the nerve (I don’t know if that is what you meant by injection) The area round the left side of my mouth and nose is numb. It feels like a visit to the dentist. The pain has gone from screaming agony to irritating. I was able to reduce my cocktail of drugs but I still take carbamezepine. I take 600mg of tegretol retard twice daily. The slow release Tegretol is much better as it causes less mobility impairment.

Although the op was not 100% successful and this numb mouth is awful I’m glad that I did it because I can put up with mild pain whereas agony is just life shattering.

Jane

Hi,

I feel for you. TN is absolutely horrible. I take carbamazepine 200 mg twice a day and that keeps it at bay whilst I’m not going through an acute attack. But when a full on attack occurs it doesn’t help. Then I use a cream made from capsicum which is brilliant. You rub it on 3 to 4 times a day over the affected area. At first it does burn and sting a little and it does take a couple of days to start working but one it kicks in it really does help.

My neuro put me on to it and although I am in Australia I am sure it is available in the UK or something similar would be. It is available over-the-counter, you don’t need a prescription.

http://www.zostrix.com.au/upload/images/Zostrix%20HP%20CMI.pdf

It has been an absolute lifesaver for me.

B

Linda, So understand what you are feeling at the moment as mine started about 3 weeks ago. Actually thought my face was collapsing at one point, and if it stopped the pain wouldn’t of cared … My Gp and nurse didn’t want to put me on any more tablets as the amitriptyline does work just makes me a zombie… I’m seriously looking at acupuncture this week as I have been reading this can help? I’m meant to be back at work on Tuesday , but really unsure if this will happen as I have been struggling to watch TV , let alone anything else. But I am also defo going to look up the capsicum cream . I am willing to try anything at this point… Hope yours calms down very soon xAnnax

Hi Linda

I also very rarely post on here due largely to TN which leaves me with little energy to do much more than get through the day. Carbamazepine works for me but makes me feel sooo ill that I only take my max doseof 3 100mg tabs in a day if I have to. My neuro also has nothing else to give me. I take baclofen, pregab, plus amtripteline every day and Carbamazepine to slightly dull the pain. My GP suggested that I break my Carbemazepine tabs in half and space them out throughout the day as sometimes a very slight change makes a difference. I now take my half tab together with a baclofen 6 times a day when the TN is very bad, and decrease the doses when it improves. Oddly, this works better for me. I sometimes feel l’m spinning plates trying to get the balance of meds right!

All the best and hope you get the pain under control by whatever method works for you. MS is so stange and we all seem to react differently to the same meds…

Denise

Thanks all for your replies how lovely to talk to people who actually know what this pain is like, people have no idea how bad it is when you try to describe it.

I have an appointment in july with a headache neuro so maybe he might be able to help better than the GP (fingers crossed)
and I will certainly be giving capsicum cream a go, to be honest if someone told me that if I was to chop off my right arm and the pain would go then I would!

Thanks again for your support

Linda xx