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Trigeminal neuralgia support thread - other neuro-pain also welcome!

(27 Posts)

MNHQ have commented on this thread.

BrienneofQarth Sat 04-Jul-15 16:51:03

Suggested on the 'most painful experiences' thread, this is for all sufferers of the suicide disease to come and share your woes! Hideous bastard pain that it is.

How old is everyone who suffers? I'm 32, when diagnosed a couple of years ago I read it was uncommon in women under 50 and wondered how true this was? The doctors have never mentioned this to me.

ChuffinAda Sat 04-Jul-15 16:55:04


I'm 32 aswell. I've had migraines for over 20 years but they've migrated down my face and recently had a TN diagnosis. As I said in the other thread I get neuro pain in all 4 limbs too.

What medication, if any, is everyone on?

OneLittleLady Sat 04-Jul-15 16:56:24

I'm 32. I've had complex regional pain syndrome since I was 14. they call this the suicide disease too. it's now in most of my body, i can't walk without crutches, i have muscle spasms so bad they cause me to lose control of my bladder and despite the mind boggling amount of pain killers etc i'm on, they barely scrape the sides and every single minute of every single day is nothing but pain pain and more pain. getting dressed is impossible a lot fo the time, i can't wear nice shoes as my feet swell so much, can't walk in heels, can't do buttons and zips on clothes a lot fo the time. can't even stand up to shower, i have to have a stool. can't have a bath because i can't get in and out of one by myself. the slightest breeze on my skin is ultra painful. basically it hurts non stop and i will always be this way as there's no cure and no funding for research into one as it's an uncommon condition to have so no one knows what it is, even a lot of the doctors i have seen over the years have never heard of it

BeyondTheWall Sat 04-Jul-15 17:08:20

Ah, hello smile i'm 29 and have a long list of other problems including eds and autoimmune arthritis

My TN was diagnosed last year after two months of constant chop-your-head-off pain. Its now...bearable...ish, with 3600mg gabapentin on top of all my other meds

BeyondTheWall Sun 05-Jul-15 12:53:11

I also get pain in my ears. I'd attributed it to the Tn and not thought twice about it as i've realised it tends to come at the same times (its not an ear problem, ears have been checked a few weeks ago). But dr google says its a separate type of neuralgia that affects the ears. Anyone else get this?

CMOTDibbler Sun 05-Jul-15 13:32:17

I have CRPS. I was 'lucky' in that it was diagnosed by my physio about 6 weeks after the initial injury that started it, and she had done a lot of studying about CRPS in a previous job so I got a lot of input.
However, 5 years on, its still hellish.

OneLittleLady Sun 05-Jul-15 13:34:31

CMOT you are not alone. it is 'lucky' for want of a better word, the earlier you get treatment the better or so i'm told. How did you end up with it? i got mine from my wrist being broken when i was assaulted when I was 14

CMOTDibbler Sun 05-Jul-15 13:40:32

I fell off a horse, smashed all the small bones in my wrist, dislocated the wrist tearing all the ligaments off, pushed my radius through my elbow, breaking the radial head, and tearing a nerve. I also had compartment syndrome after the third lot of surgery to try and reassemble it, which is when the real pain started.

The intervention def stopped it spreading, and taught me to ward off new spread. I was also lucky that the hand surgeon I got referred to eventually had amazing hand therapists who made me pressure garments to get the swelling down, which I've been able to use since to stop it recurring.

I'm 47 and have had TN for 5 years now. I lost two back teeth in the process as my dentist (and me) at first thought it must be dental..thankfully saw a GP who recognised what it was..she'd just returned from a conference on nerve pain! I started on carbamazapine but it made me sick, switched to Gabapentin and have been on it ever since.. literally a life saver for me.

I've been able to drop the dose from the brain numbing but magnificent 3600 but still have to take a lower dose permanently..and up it if I get any warning shocks. I am very lucky in that mine is ..for now.. well controlled. Cold wind is a problem and any cold type virus seems to wake it up, but day to day I am functional again. It's a bitch.

YellowBucket Sun 05-Jul-15 14:08:25

I've had TN for about 11 years (I was 25). I insisted on a lot of unnecessary dental work before seeing a different dentist who realised immediately that it was TN.
At times I have just stood and smashed my head against the wall to distract from the pain. The worst bout was during a winter trip to Paris. Absolutely horrendous.
I also have MS, diagnosed 17 years ago.

BeyondTheWall Sun 05-Jul-15 14:21:33

I'm on the 3600, if i drop so much as one tablet i get an attack sad
Have one right now, also seem to be coming down with a cold. Hadnt connected them!

CMOT, that accident sounds horrific! shock

MyLittleFinger Sun 05-Jul-15 14:24:00

BeyondTheWall I have the ear pain type as well, originally it was on one side of my face but migrated to my ear. If my ear is touched (please don't kiss me when you come round visitors) it will immediately start hurting especially where my ear is attached to my head. I can't wear earrings as my ear lobes swell and the pain is horrendous. Nortriptyline taken at night will see it off... until the next time.

Wind is the enemy...I am always wearing a wool hat and when opening the fridge door I turn my ear away from the cold.

tumbletumble Sun 05-Jul-15 16:27:39

My mum had it for years, then 12 years ago she had brain surgery to treat it (hers was caused by a vein pressing on a nerve in her head) and has been completely pain free ever since. She was 61 when she had the op.

TealFanClub Sun 05-Jul-15 16:29:50

Should this be in health?

IonaMumsnet (MNHQ) Sun 05-Jul-15 16:53:22

Afternoon, all. We're going to move this over to Health in just a moment.

stareatthetvscreen Sun 05-Jul-15 17:05:23

argh weird to see this pop up in active

i am suffering this afternoon with a painful toothache type pain - comes in waves also side of face and ear.have to walk/stomp about with the pain.3 x co codomal down and no difference

i have ME so i guess TN is possible

WhenMarnieWasThere Sun 05-Jul-15 22:10:06

Hello all.
I was 40 when I was diagnosed. I also thought it was dental at first and had a tooth removed. The dentist was bemused when the pain continued and would have done more work but after I walked out of the dentists completely numb from the anaesthetic for having a filling redone (just in case that was the cause) but still in agony, I took myself to the doctors instead and asked if it was TN. They agreed.

I was on carbamazepine but it made me sick, I couldn't stay awake or walk in a straight line. If I took a dose in the middle of the day then I struggled to stay awake. I was swapped to gabapentin. I still have side effects I would rather not have, but they are bearable. And I don't have anymore proper attacks of pain any more on 1800mg a day, just aches and pains like toothache. I get the earache too. I could raise my dose but risk worsening the side effects so I stay as I am.

ItsMeMario Mon 06-Jul-15 20:09:11

Another TNer checking in.

I started suffering at 35. Mine, however, was very easy to diagnose as it is in the V1 branch and my pain is above my eye so no unnecessary dental work for me thankfully. I react very badly to the drugs DD calls them my zombie drugs and have yet to find one that works.

Luckily, and i apologise in advance for what I am about to say, i have been in remission for a year now and its bloody wonderful.

<slinks away from thread>

ItsMeMario Mon 06-Jul-15 20:13:37

<slinks back on>

As for it being uncommon, my neurologist disagrees with that. He said it is not uncommon as there are lots of people going undiagnosed for years.

So what so you think the chances are of two people who are really good friends both having TN? I will let Marnie answer that one. grin

WhenMarnieWasThere Tue 07-Jul-15 00:02:06

In the words of our neurologist....

OneLittleLady Tue 07-Jul-15 00:29:15

CMOT that sounds like a very nasty accident. Unfortunately, I wasn't able to ward off the spread so i've now got the CRPS throughout most of my body, I can't walk without crutches and it's likely i'll end up in a wheelchair. Mine wasn't diagnosed til about 18 months after the break by which time it was just about management rather than any prevention. Like i said, mine came from an assault, my wrist was badly broken, all my ligaments tore and were 'sprung' so I was in cast for over 18 weeks as the break wouldn't heal as my ligaments wouldn't hold my bones in place. it's the most horrific thing I've ever felt. I take pregablin, oxycodone tablets, oxynorm liquid, morphine, paracetamol, baclofen, diazepam and have steroid injections plus acupuncture for it

CMOTDibbler Tue 07-Jul-15 22:31:30

Acupuncture is amazing isn't it - it gave me pain relief when even morphine wasn't touching it. I've had several lots in my good arm as I get an overuse thing which results in nerve pain too, but acupuncture turns that off really well.

I was in an external fixator for two weeks, then 10 weeks in plaster, then in splints till I had my wrist fused a year later (I couldn't move it, but it wasn't solid), then 4 months in casts for that. And then some more when I had elbow surgery to try and get some rotation. Which I didn't.

So I have a useless, painful arm, but obv they can't amputate as the risk is too high for intractable phantom limb pain.

Have you tried the inpatient programme at Bath?

Fizrim Tue 07-Jul-15 22:35:14

I have TN, but have been symptom-free since having an MVD in 2004.

WhenMarnieWasThere Wed 08-Jul-15 17:33:48

I've been referred to a neurosurgeon and have had the cause of my TN pinpointed to the artery pressing on the nerve. But after seeing me they told me I'm not suitable for surgery because the medication provides some degree of pain relief.

I'd love to be completely pain free. And medication free as the side-effects that I have are extremely annoying.

BeyondTheWall Wed 08-Jul-15 17:47:53

My gp said there was not much point referring me to neuro atm as i get it both sides and surgery rarely works anyway.

Been mid-attack for about a week now. Its only a mild one as my meds do help, but its still there sad

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