Suicide pain

[porkchopsandwiches]

My DH has had Trigeminal neuralgia for 14 weeks now, and has had enough.
We have been to the DR and hospital, and tried Carbamazepine, but had bad
side effects from them.

We are going back to the hospital next week for a MRI scan.DH broke down yesterday and said 'He can't take the pain anymore'.

Can anyone help us?

i've had TN, and i understand what he means

the pain is relentless, it doesn't go away, you get used to it

it's probably the worst physical pain i've ever had

i had 3 months on amitryptaline - side effects were terrible (couldn't get up for at least an hour after waking, constant tiredness, sickness) but they really did help

how long did he take the carbamazepine for?

Really sorry to read this. See a herbalist - very high dose Hypericum will be helpful. You can also buy Hypericum oil at health food shops which can applied topically. Good luck to you both.

He needs to see a gp again. My DH had TGN thankfully very shortly as it was utterly horrendous.
He was given diazepam.

My mum has had TGN - she's as tough as nuts, had three kids without any pain relief and I'd never seen her cry before she got that condition.

Fortunately it resolved quite quickly, but the only thing that helped her pain was amitriptyline, an antidepressant often prescribed at low doses in cases of nerve / muscular pain.

Your poor DH, I hope he's better soon. Have they pinpointed what is causing it?

Did he see a pain specialist at the hospital. If not, get his GP to refer him to TE pain team.

He was on carbamazepine for 1 month, but he had nausea and dizziness.
we just waiting now to see what else they try him on.

Thank you for your help and support.

He been on amitriptyline too, and he nearly went though a red light on that.

we have no idea what causing it, untill he has the MRI scan.

Here's some links to earlier threads ,may be some advice there ?

www.mumsnet.com/Talk/general_health/1199128-Anyone-know-anything-about-trigeminal-neuralgia/AllOnOnePage

www.mumsnet.com/Talk/general_health/a1471781-Trigeminal-Neuralgia

and this
I was prescribed amitryptilene which didn't touch the pain at all. Eventually, a locum GP reckoned I did have trigeminal neuralgia (my regular GP was convinced it was sinus pain despite having been sent for sinus x-rays) and I was prescibed tegretol, an anti-seizure drug. BINGO! That night I was pain free for the first time in many days and actually managed to sleep for the first time in 3 days or so because the pain had been that bad.

Many sympathies.

i think it's generally accepted that the side effects, although dangerous in some situations (ie driving and operating machinery), are part of the treatment

they are temporary whereas if left, the TN will carry on.

hope you find some answers with the MRI, it's a terrible condition to have to live with.

Haven;t had TN but had a dental abscess which pressed on my trigeminal nerve earlier this year and was originally misdiagnosed as TN because the abscess wasn't showing up on x-rays. Which is backwards - most TN sufferers think they have dental problems first and only get the neuralgia diagnosed later. In my case we knew I was allergic to carbamazepine/Tegretol because I have epilepsy too so couldn't try that and amitryptiline is not safe for people with epilepsy so I was very lucky that the abscess finally got dramatically worse and very obvious and we finally figured what was causing the pain.

I'm sure after 14 weeks you have thoroughly exhausted the dental angle but just thought I'd mention this.

Bloody hell the pain was horrific. I'm a bit sceptical about high/low pain threshold stuff but I rarely complain of pain and certainly didn't need pain relief during childbirth so this was a first for me. I do feel for your DH.

He doesn't need the internet he needs a neurologist. There are loads of other anti-epilepsy drugs which may work if carbamazepine/Tegretol hasn't helped. I think there are even some minor surgery interventions than can block the nerve and give relief which sounds drastic to an outsider but I'm sure seems trivial to your DH. He does not need to despair if the first line medication has not helped yet.