Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Original poster

Any Trigeminal neuralgia sufferers out there?

78 replies

TheWalkingTalkingRed · 05/04/2020 12:05

Sorry, I know I should have posted in General Health but thought they'd be more traffic on here!
Newly diagnosed and had never really heard of this until recently, I can honestly say I've never known a pain like it. I've suffered with acute sinusitis for years, and also saw a dentist regularly with tooth pain that turned out, well not to be tooth pain! Until finally seeing. GP recently who diagnosed me with this condition.

At its worst I would have done anything to take the pain away, and even now on meds that's I've just started, I'm in constant state of anxiety over another attack.
I've been online and it's got some scary stories on there...

Is their anyone else whose living with this condition? You have my sympathy for a start!

OP posts:
OuterMongolia · 05/04/2020 12:08

My mum had it. Hers was caused by a vein pressing against a nerve and was cured by a brain operation.

She said it's the worst pain in the world, so sympathy OP.

Original poster
TheWalkingTalkingRed · 05/04/2020 12:18

Thank you OuterMongolia glad your Mum got to the bottom of what was causing it and is ok now.

It really is, mine felt like a mixture of contractions, a tooth abscess and a really nasty sinus pain! Wine helped but sadly none of that on these meds. SadWine

OP posts:
Wishforsnow · 05/04/2020 12:24

My mum has it too, it was caused by a nerve pressing against something in her brain. She had an op and no attacks in over a year. It is the worst pain so sympathies for you. Her meds keep it completely under control though. She used to collapse on the floor in pain and couldn't touch her face. I'll ask her what meds she's on as she occasionally has wine now. There are websites for it which give good advice on things to take to help.

Interested in this thread?

Then you might like threads about this subject:

General health
Malotkins · 05/04/2020 13:09

I have it. I had my first attack over 10 years ago. It lasted one and off for three weeks. It floored me, literally. I managed to get a diagnosis really quickly before I resorted to having my teeth removed thinking it was tooth problems. After that initial flare up, I was more or less fine. I'd have attacks but nothing like the first. It would come and go for a few weeks and then nothing for maybe 5 or 6 months.

It started to get really really bad again in the autumn and I saw a private doctor through my health insurance. He put me on the one medication specifically for TN but I had a bad reaction. I'm now on an anti epilepsy drug and it's been OK. The odd twinge. Not sure how long I can stay on it for though. The attacks in the autumn were horrific, the pain started lasting for longer and I was/am in fear of it.

It truly is one of the most painful conditions. I wouldn't wish it on my worst enemy.

Please do message me if you would like to chat.

nothingcanhurtmewithmyeyesshut · 05/04/2020 13:17

People call it the suicide disease. I can see why too, it's awful. The amount of unnecessary dental work I've had done...

It isnt constant though, an episode can end as quickly as it began. It will always pass is what I tell myself. My personal record is 3 weeks. Diclofenac helps for some reason, not sure why. Nothing else seems to touch it.

Original poster
TheWalkingTalkingRed · 05/04/2020 14:02

Wishforsnow oh you're poor Mum as well? I'd like to press for a scan to find out exactly what's causing it eventually, but obviously now isn't the right time. Just will be grateful to ease the pain! Or at least make it manageable.

Oh yes please. A worldwide pandemic, homeschooling, lockdown and this...god I'll miss a wine!

OP posts:
Original poster
TheWalkingTalkingRed · 05/04/2020 14:07

malotkins I hear you with the teeth! There is still a part of me that would be off to the dentist ( if I could see one) to say come on just rip them out, as they literally feel like they're having electric shocks!
I'm on an anti epilepsy one too carbempazine?
I feel like I'm living in constant fear of another attack. I was threatening all sorts last night to my poor DH including telling him to get his pliers out! Thanks so much for replying hope you manage to keep free from any flares up for a while Flowers

OP posts:
YippeeKayakOtherBuckets · 05/04/2020 14:10

A friend of mine has this, she had some sort of mesh put in her brain and is now pain free. It’s so debilitating.

Has your GP suggested any surgery options?

InTheShadowOfTheMushroomCloud · 05/04/2020 14:11

My daughter has it. Found out it was caused probably by her thyroid !? As since she had that irradiated for Graves her TGN has improved. She has also been found to have sjorgens and lupus.
Get your thyroid checked and get checked for autoimmune diseases

Snorkelface · 05/04/2020 14:12

My mum has it too. It's flared up a couple of times since the initial few weeks of it but then died down and she hasn't had any problems for a few years. She still worries about it though. She also went down the dental path first before they worked out something else was going on.

QuimJongUn · 05/04/2020 15:44

I was diagnosed three years ago, by which point I'd had several teeth extracted by various dentists after years of pain. The attack I had which led to my diagnosis was so bad I went to A&E because I thought there was something seriously wrong - I kept losing consciousness the pain was so intense. They suggested TN after x rays found nothing wrong and it was later confirmed. I started on Tegretol immediately and it helped so much. I'm currently in remission but I know it never goes away for good and I'm always waiting for the next attack.

Best wishes OP Flowers

Original poster
TheWalkingTalkingRed · 05/04/2020 16:16

Thanks all for the replies. Sorry to hear so many suffering with this. GP I saw wasn't my regular GP, so will definitely ask about if and what can be done about it. It's unlike anything I've ever experienced before.
,Flowers for all those suffering.

OP posts:
WitchQueenofDarkness · 05/04/2020 16:58

I have had it for 30 years.

Fortunately the attacks only last an hour for me and are infrequent. I can go months between flare ups and then have a couple a month before it settles again.

I am not on any treatment for it as it is so infrequent but every time I get an attack I'm always worried that this is the time it doesn't go away.

nothingcanhurtmewithmyeyesshut · 05/04/2020 17:45

Having teeth out doesn't help. I still get toothache in a tooth that isnt there anymore. If you can, load up on strong ibuprofen. Some of the pain is from muscles that are tight and in spasm from the expectation of more pain. It helps them relax a little.

Original poster
TheWalkingTalkingRed · 05/04/2020 18:44

Thanks so much all. Is it normal for an attack to last a couple of days? Yesterday was terrible, today less so. keep reading so much stuff from attacks lasting a few seconds , ro a few hours...even weeks? Mine is every few hours or so like a burning sensation in my cheek to electric shock feeling in my teeth.... definitely no where near as bad as yesterday much more manageable but I guess that could be the meds helping? I am very tense when the pain comes I find in clenching my entire face willing it to go away which won't help I guess.

I'm STILL despite GPs telling me otherwise question if it's dental....it's something I can't shake I guess.

I

OP posts:
nothingcanhurtmewithmyeyesshut · 05/04/2020 18:47

My record is 3 weeks nearly. It can be nearly constant with less than 20 minutes between waves. Industrial quantities of ibuprofen will help but otherwise you just have to apply heat and try not to tense up. Massage helps if you can find someone experienced in dealing with it.

Toomboom · 05/04/2020 19:02

I had this about 5 years ago and the pain is terrific! It can last for days. I had one week of constant pain everyday, I had to take a week off work.
My lasted about 3 weeks on major pain killers from GP.
I did go to the dentist as I also thought it was my teeth, was xrayed and checked and teeth were fine.

I read up quite a lot on it and often dentists will remove teeth as they think that will reduce the pain--- it won't, the pain will still be there. So unless your teeth are rotten don't get them removed.

The pain will go eventually, but it takes time. I have been lucky and have only had the one episode of neuralgia, but I wouldn't wish it on anyone. Wishing you well that it goes soon.

ginjenny · 05/04/2020 19:02

I have it too, mine is caused by a small meningioma pressing on the trigeminal nerve, I’m on carbamazepine also. The electrical zapping was unbearable but is now controlled by the tablets.

There is a really helpful Facebook group- Trigeminal Neuralgia (TN) UK, makes you feel not so quite alone with this awful condition!

SparklingGin · 05/04/2020 19:10

I am on the same medication as ginjennny in Ireland known as tegratol it’s the only medication that ever helped me

GoodMorningSunshine · 05/04/2020 19:19

There is light!!

I suffered 3 attacks, each lasting in total 2-3wks but obviously the first handful of hours was the worst. Horrendous pain and nothing like I’d ever experienced before, childbirth was a breeze compared with.

Touch wood-I haven’t had any attacks for a few years now so have slowly over the last 6mths weaned completely off my medication. I’m now on nothing. I do live in fear of it coming back but didn’t want to take meds when I didn’t need them.

4 years ago I did have unrelated surgery for an ear condition, and there has been evidence to suggest these two may be linked? Who knows but goodness, that pain was unreal. My husband was so frightened by how I was, I completely know why it’s referred to as the suicide disease.

Original poster
TheWalkingTalkingRed · 05/04/2020 19:24

Thanks so much everyone it's good to hear from people in RL that have experienced this. Although I wish you weren't or haven't obviously!
The reason I always go to dental is because of the pain in the teeth and in the cheek.
It's only been two days and I have never experienced pain like it so am in awe of you that have had flare ups of weeks or more.
I'll join that Facebook group thankyou again all

OP posts:
FthisS · 05/04/2020 19:48

I have it, first came on 7 years back after the birth of my youngest child (and only csection). Was the worst pain of my life, like contractions of the face. I've given birth 3 times with zero pain relief and had a ruptured retained placenta which I had removed in the delivery room with no pain relief but that was a walk in the park in comparison.

Roselilly36 · 05/04/2020 20:06

Awful pain, I have had it in past, I have MS. MRI didn’t show a new brain lesion, but sometimes they can be small to show. I also have TMJ & numbness in my face on occasions.

ChicCroissant · 05/04/2020 20:13

I have TN, although I've been symptom-free for years now after a successful MVD (the mesh/teflon padding round the nerve near the brain stem).

The carbamazepine is often the first med that they try, and it's not an instant-acting painkiller - it takes time to build up to an effective level so make sure you take the meds every day. You may be starting on a low dose and building up, set reminders if necessary but do remember to take them. If you are suffering side effects, they may lessen a bit as you get used to the meds.

What dose are you on at the moment OP?

DrMadelineMaxwell · 05/04/2020 20:44

I have it. I did have a tooth removed when the dentist thought it was that, then they refilled the next one when the pain didn't go away. Then, when I was numb from the anaesthetic yet still in agony as I walked out of the dentists, I decided for myself that it wasn't my teeth.
I was put on carbamazepine, but couldn't take it due to the side effects it gave me.

Now, for the last 6 years, I've been on gabapentin. I was off work for 3 months as the dose was slowly adjusted up to give me pain relief. I couldn't teach when I was having random pain attacks multiple times a day. My dd's who were about 10 and 7 at the time, got used to talking to me when I had my head buried in a cushion trying to ride out a pain attack. Whoever described it as contractions in the face, that's how I described it at the time.

The gaba gives me good pain relief, with only some bad days and no severe attacks any more, and with few side effects, thankfully.