Trigeminal neuralgia is a bastard and should die in a painful manner

[BeyondCBA]

Having a massive attack, just want somewhere to whinge about it really, but any advice is appreciated.

First started 18m ago. It has swapped sides now and is a million times worse. None of my meds are touching it, on my third alternate prescription from the gp (gabapentin>tegretol>pregablin). My eyes have gone 'funny', my optician said i had double vision at my last appt (this time last year) but again, during this attack (started back in nov) they are so much worse, i struggle to read anything as the words are all jumbly. Plus it almost seems like my vision in one eye is greyer than the other when they are both open, though this goes when i close the okay eye. When i am having an attack, i often cannot open my eye on that side.

It is sore all of the time, and i'm having full on attacks then that last well over the two mins i have been told they should. I have no idea how often they come (will try to keep track perhaps) but its been so bad i have spent the last four days in bed, and spent a good chunk of time before xmas there too. Dr said last time i saw her that if it continues she will refer to neuro at my next appt. So as it is still continuing (though fingers always crossed i will actually be better before i can get there) i'm planning to see the optician first so i can have a quantifiable number of 'worseness' for that to go in and give to her.

Btw, i have seen my dentist, my teeth are fine. I do have a long list of other crap wrong with me though 😕

[BeyondCBA]

Got up at nine, on my third zap of the day

[tactum]

Just popping in with lots of sympathy - I don't have this but my sister does - its an absolute bastard of the highest order and there isn't a place in hell bad enough for it to reside.

Hope it eases soon. Sorry, no practical use, just didn't want you to be ignored.

I am thinking of you

[BeyondCBA]

Thanks tactum :)

Dont worry though, im not posting for sympathy so dont mind if noone responds. I just realised that it was difficult to speak to the doctor about it without a proper record as my memory (and knwoing what is relevant!) can be a bit crap

[MatildaTheCat]

Beyond sorry I have no experience but adding sympathy as I do have a chronic pain condition. According to The Nice Guidelines your GP should really have already referred you to a specialist so do push for this. Do you live in an area of the country with specialist neuro teams for this condition?

Apologies if you know all this already but it seems a long time for you to have waited. I do hope you feel better very soon.

[BeyondCBA]

Thanks matilda. I have so much wrong with me, i hate going in yet again and telling my (good generally) gp how to do her job, but i know she isnt handling this right. But then; anxiety, so i ignore my gut feeling a lot.
I am already under rheum, gynae, cardiology and physio, i asked for each, i hate to ask for more.

I'm a bit crap at explaining pain, probably due to aspergers (i went around gp to get recent aspergers diagnosis and think she is a bit about it). I dont think i get across just how bad it is.

I read a paper recently on tn, said that anyone with affected eyesight, bilateral pain or pain lasting longer than 2 mins should have a neuro referral asap. And i have all three. I've also seen elsewhere that these are indicative of ms, and i'm terrified of ms, so my fear of that probably isnt helping either.

I dont think there is a specialist neuro team here, but there might be one in cardiff? (Will have a look)

[BeyondCBA]

My newest px was given over the phone - my dh rang for phone consult as i was crying in pain yet again. She rang back and asked to speak to me. Then asked about it and, though i could answer her direct questions, i clammed up. I dont talk on the phone unless an absolute emergency, i cant.

[CharleyDavidson]

TN is the pits. It's just shit. I've never been in so much pain. I'm on so much medication it makes me twitch (really!) and I still have pain daily. Luckily for me, the gabapentin keeps the pain at a bearable level most of the time. It sucks that the meds don't work for you Beyond.

[BeyondCBA]

Charley, thats exactly how i was before, it was infrequent and bearable - i have no idea why all of a sudden it stopped working :(

[BeyondCBA]

Fewer zaps today but the underlying burn is still constant. When its 'bearable' (ha - in comparison to how it was!) like this, i feel like a fraud making a big deal out of nothing :(

[CharleyDavidson]

It's not a big deal over nothing!

I live in fear (really) of the day that the gabapentin stops working. I've been warned that it might and lots of evidence points to that being a possibility.


I see my neuro at the local hospital. I jumped the queue though. I knew who I would be referred to and looked to see if they worked privately. Then I asked the gp to write me a referral for the private appt. They did, no prob. I was able to see him within days and he gave me good advice about my TN and the meds. He wasn't happy that I hadn't persevered with the carbamazepine, but it was making me too ill to function, so I had to stop. I had a lumbar puncture, an MRI/MRA and an appt with a neuro surgeon. Because the meds work for me (for now) they won't operate. Fine, as it's a dangerous op.

NICE guidelines def now say neuro/pain clinic referral if the meds don't manage your symptoms. I'd persevere. THey might be able to prescribe something that will help. What have you tried so far?

My friend can't take carbamazepine/gabapentin because of side effects. She was recommended lamotrigine by her neuro surgeon.

[BeyondCBA]

Been to have my eyes tested, was hoping they'd be able to 'quantify' the problems with my vision. No such luck, my vision is perfect when tested. I guess its cause i struggle when focussing with two eyes, and they only test everything one eye at a time? So it looks like the problem is nerve or brain related or it looks like i'm being a drama queen

Charley, i tried gabapentin first, it worked for 18months. End of nov it stopped working, mid dec i saw the gp and changed to carbamezapine (tegrtol). Made no differnce so after spending three days crying in pain dh rang gp and she changed to pregablin.

Only had two big attacks today (timed one and it lasted 15mins from when i started timing), but constqnt burn is still there. Left eye is still grey and foggy and words are all jumbly.

[CharleyDavidson]

Your description of the visual problems made me wonder if it could be optic neuritis, but I don't think it could be if they tested you and you were ok. That causes problems in vision and can be an indication of MS, which can also cause lesions that produce TN pain.

I hate the long attacks, mine always were. Lots of TN info said that they were fleeting lighting shocks. My pains came like labour pains, building and building, but with the shocks on top. It's nearly 2 years since I was diagnosed and I still have pain every day despite being told by one GP that 'you won't have this for long'.

Pregablin is a 'sister' drug to gabapentin, so it could be that it won't work for you if the gabapentin didn't. Have they thought about prescribing something like amitriptiline instead?

[StillMedusa]

God you have my sympathies. I'm a pretty prosaic person generally but TN made me actually consider suicide because I couldn't imagine going on with the pain.

How much Pregabalin are you on? I had to be on a HUGE dose to dampen it down (and later once under control, switched to gabapentin at max dose...I'm still on it now, 5 years later)

Mine was like labour pains too.. a slow burn rising to a peak , with the odd 'fuck!!!!' shock. These days it is under control mostly, but a cold wind has me in terror of setting it off.

Tegretol just made me feel very sick so didn't help at all. On pregabalin I was spaced out to hell but on a mega dose it did stop the worst pain.

Really hope you get some relief soon!

[BeyondCBA]

Charley, im already on a different tricyclic AD for depression, so ami is out. And its working for the depression, so i dont really want to play with it and see if something else helps the TN and then lose the AD effect! Yep mine are like labour too, with the slow burn building and then zaps on top (i feel zaps is inaccurate as it sounds like a fast shock, when its more like someone is digging an electrified harpoon in my jaw!!). I had a look at optic neuritis and it does seem to really closely match my symptoms! But then surely it would have been seen, as you say...

Medusa, My pregabalin dose atm is 375mg, my gp said to increase gradually til it works, as i have done with the other drugs too. My shocks have decreased since the awfulness of the beginning of the week, but tbh i think its just waning again (like it did over xmas) rathr than going, as the burn hasnt changed at all.

I'm not spaced out at all. I often wonder if they're giving me all manner of placebo drugs!!

[CharleyDavidson]

I think you have to have a special test (invoked potential) to show if it's optic neuritis. Worth phoning whoever tested your eyes to ask if they would have noticed it? I don't know.

[BeyondCBA]

Ah i see. They def didnt do that test, he looked at my eyes, checked my reading of the chart and then tested my peripheral vision. I had a quick google, seems it can be seen on eye exam, but only once it is severe enough.

[marsybum]

I had tgn for about 6 months 3 years ago. Had neuro referral, mri, no cause found.. carbamazepine seemed to help and as say after about 6 months it went as mysteriously as it came.... until 2 weeks ago in the intervening time I've also developed rheumatoid arthritis so currently contemplating going to the vet to get put down...
I need to keep working so we can afford to live! !

You have my sympathy it's not called the suicide disease for nothing

[BeyondBootcampsAgain]

Hi both :) (OP, in case it wasnt obvious!)
Just the one big attack today, and i might be imagining it, but i think the constant burn has turned down a notch too!

[Millionairerow]

Ouch. I think I had this for about 6 months. Constant pain in right side of face. Took ages to go. My tooth nerves did show v close to facial so dentist said I'd need to go to hospital if I ever needed tooth extraction in case of facial paralysis. It just eventually went away. Op hope yours goes v soon.

[CharleyDavidson]

TN can relapse. I was told by one doctor that I wouldn't have it for long and it did get my hopes up. However, it was 2 years ago that I was diagnosed now and I have had pain every day even with the medication.
I'm jealous of those in remission. :) Lucky sods.

[BeyondBootcampsAgain]

Urgh charley, that is really crap :(

Tooth is still sore if i bite on it, but burning is definitely turned down now. Not gonna hold my breath though. Vision is still fucked.

[CharleyDavidson]

This is me today...

[BeyondBootcampsAgain]

I'm back. Today i have a swollen cheek/eye and paralysis on one side of my mouth. Gp thinks it is probably just my tn still (i have a neuro referral now, just waiting for it...) but just n case she has referred me over to the TIA unit. I have an appt with them in the morning.

I am now utterly convinced that it is MS :( but i feel paranoid bringing it up