trigeminal neuralgia

[Bonkerz]

Does anyone suffer with this?

I have b12 deficiency and started with nerve pain in hands and legs a few years ago.

About 6 weeks ago I started getting a crippling pain in my right side of my face. It's horrendous and makes me vomit the pain is so bad. An attack can last hours.
After a week of attacks and feeling like my face is constantly bruised I went docs who did emergency bloods to check for clots.
After they put me on some medication for nerve pain.

I did consider it was toothache but this didn't account for the pain being in my temple.

After another attack Tuesday night the doctor has given me carbamazepine and diagnosed trigeminal neuralgia.

I can feel another attack coming on and have taken some codeine and paracetamol and put an ice pack on my right temple but I don't know what else to do.

Hi,
I’m wondering if I have this? Was awake all last night with pain all over left side of face - took co-codamol 30/500 and ibuprofen but it didn’t do anything! I felt sick it was so painful too.
I did have root canal treatment before lockdown and think I clench my teeth so was thinking I might have cracked one, but it’s the whole of my head that hurts.The only relief I got was to press the sides of my temple, it seemed to relieve the pressure - do you find this? I’m really scared 😕

The pain is worse than childbirth. Toothache would be a pleasure I think.
The doctor said the jaw and teeth pain is referred pain from the nerves.
I used a heat pack Friday night which helped and held it on the top of my head. My pain starts just above the temple. See picture with yellow marks.

I'm going to record the pain and attacks to confirm with doctor when he rings to do check up in 3 weeks.

One thing i did notice was as the pain started the roof of my mouth became bumpy like it had been burnt.
I need to figure out my triggers. I did have 2 extra coffees Friday which apparently can cause an attack. So can bananas apparently.

Sending hugest sympathies to you, & anyone cursed with this horrific affliction.

My DH was diagnosed in 2004 IIRC. He had a MVD operation in 2008 as medication was becoming less effective. Thankfully for us it cured him 100% but my god what an awful time he had 😢

I really hope you can find some relief long term, definitely explore the MVD option if you can xxx

I truely believe this is a side effect from not having my pernicious anemia and b12 define your treated effectively. I have nerve damage in my hands and get which also cause pain but nothing like when my face kicks off.

I have this and recently have had a ganglion nerve block which has been a life saver. How much tegratol / carbamazepine are you on daily

Starting on 200mg for 2 weeks then up to 400mg. Then the doctor said to play with dose depending on symptoms but max 400mg and min 200mg

I've had it for over 5 years now. I didn't get on with the carbamazepine as the side effects when I raised the dose were awful. I'm happier on gabapentin and it does a good job of managing 95% of the pain with fewer side effects.

Yes it's a dreadful disorder. I am lucky that I get few attacks as I have specific triggers.

There is a good UK support group here

www.facebook.com/groups/558857264148050/

Thankyou just joined.

I need to learn my triggers I guess.

Hi I always up it to 400 after a couple of days but that’s on my doctor advice, maybe ring see if you can do the same.

Currently sat with a heat pack on my head. Been singing too loud and triggered. Taken meds too so hope it doesn't escalate. Currently a 4.

Be careful of the wind when you are out it can trigger it, as can the cold. Another trigger for me is an electric toothbrush.

Tuesday night was triggered because I combed my hair with a fine tooth comb.
Friday all I can think is I had extra coffee (usually have 2 a day but had friends visit so had 6!)
Today I've been belting out greatest showman songs 🤭

Just had 2 codeine as well as the paracetamol and heat pack. Pain a 6 now. Will it just carrying on getting worse regardless? Once it reaches 8 I can't even stand.

My mum had this and said the pain is horrendous. Hers was caused by a vein pressing against a nerve at the back of her head (visible on MRI) and fixed by surgery.

You probably need to up the carbamazpine really OP, may need to speak to the GP (email if it's difficult to talk with the pain, that was always a trigger to me).

Are you taking the carbamazepine regularly? It needs to build up to an effective level in your bloodstream, it's not an instant-acting painkiller (unfortunately!) and as you've probably noticed, over-the-counter painkillers don't really touch it.

Hope you find something to help very soon.

You can stop the paracetamol and codiene. It really does absolutely nothing for nerve pain - one diagnostic for TN is whether normal pain killers do anything at all, as these don't. Also, carbamazepine is heavy on the liver, so try not to add too many other meds in to the mix, especially paracetamol.

Have you had proper advice on how to raise your dose until you get relief and what dose you should be aiming for?

I was diagnosed by a gp (or rather a gp agreed with my friend's diagnosis as she had the same) but I was also referred to a neurologist who was great for giving me knowledgeable advice re meds. I had to keep a pain diary which raising my dose.

Unfortunately, the side effects kicked in at 300mg so I had to switch medication at that point.

You should have an mri and a lumbar puncture to do that.

I did. It ruled out MS or other auto immypune issues and tumours or lesions, and did find where the nerve was being impinged upon by an artery. Just the throbbing of the artery is enough to damage the coating of the nerve and inflame it. One of my triggers is exercise as increased heart rate means more rubbing on the nerve and I always get an icy, sore face when exercising.

I do have pernicious anemia. It's not treated correctly because I only get one b12 jab every 8 weeks. I do self inject at home but the last 6 months have had to reduce the amount due to supply issues.
I already have nerve damage in my hands so I guess I'm assuming this is caused by damaged nerves due to the b12 issue.
I'm on 200mg carb at minute and told to increase to 400mg a day after 14 days.
I'm keeping a pain diary. Had 4 attacks this last week. Pain score was 9 last Tuesday. Started carb on Thursday. Attack today about a 6.
I was on neurotryptaline for 5 weeks and it helped initially but then the attacks got worse.

cks.nice.org.uk/topics/trigeminal-neuralgia/

Usual dose is 2 or 3 lots of 200mg daily. But some people have to take a lot more to get pain relief. The key is to raise the dose slowly to avoid side effects. Mine only kicked in when I raised my dose from 2 x 100mg to 2 x 200mg and I still had most of my pain.

I couldn't walk in a straight line or stay awake and I had a huge twitch that stopped me being able to type/text/write, so I had to come off it.

After suffering what I could only describe as 100 x childbirth pain in a few years back , I was told it was likely i had TN. I ended up admitted
To hospital as I took so much pain relief I inflamed my oesophagus which was initially treated as a heart attack! On being discharged , I ate for the first time in days, one of my back teeth literally crumbled and the pain went. Apparently I had a hairline crack in a tooth that didn’t show up on an X-ray.

So whilst I am glad for myself I have every sympathy with anyone afflicted with TN.

Spoke to doctor again today. Increased to 2x 200mg a day. Been in pain for over 30 hours now. I'm so tired.

That's not good, op. My gp made me have a 48 hour gap between stopping the carbamazepine and starting the gabapentin and it was the longest 48 hours of my life as I had a constant attack for well over 24 hours after the first drug left my system!

It does take time to raise the dose, hope you get some pain relief soon!