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Trigeminal neuralgia

(14 Posts)
BStP Thu 07-Feb-19 10:52:08

Does anyone suffer from trigeminal neuralgia? My gp has disgnosed it after I have been suffering awful jaw pains for 3 weeks that have reduced me to tears and my dentist confirmed it was not my teeth. Silly things can set the awful pain off such as a duvet just touching my chin or drinking a cup of coffee. It is v unpleasant and I am hoping the diagnosis is wrong and it may just go away as quickly as it came as I do not want to live on the prescribed anti convulsant tablets that seem to be the only thing to help with nerve pain.
I would like an MRI to confirm diagnosis and wondering if other sufferers had had one done, what dose of medication they are on and if it can go as quickly as it came!

sodapop Thu 07-Feb-19 11:54:30

Yes I had this some years ago when I was still working. I was prescribed the same medication but it made me feel so ill I came off it. Fortunately for me the pain disappeared as suddenly as it started and I have not had any further problems. I hope its the same for you BstP

Izabella Thu 07-Feb-19 12:05:23

Ouch! Not nice. Have you tried a hotwater bottle (in a towel) pressed to the area? sometimes helps.

Thorntrees Thu 07-Feb-19 12:26:28

I have permanent nerve pain down my face due to the trigmeninal(sp) nerve being severed during a surgical procedure to repair a break in the bone under my eye caused by a fall almost 12 years ago.. I can sympathise with the discomfort you are in and as you say only anti convulsants are considered any use for this type of pain. Not wanting to be on medication permanently I have to some extent learnt to live with it. Things I have found which help are not eating or drinking anything very hot or very cold or too spicy, chewing slowly, covering my face with a scarf when out in the cold and the best comfort is my wheat bag warmed in the microwave and pressed against my face. I do hope the problem clears up for you, nerve pain is very hard to cope with and ordinary painkillers don’t do any good.

Fennel Thu 07-Feb-19 12:53:17

I once knew someone who had this very painful disease. He had an operation which helped.
"Microvascular decompression (MVD) is an operation that can help relieve trigeminal neuralgia pain without intentionally damaging the trigeminal nerve. ... It provides the longest lasting relief, with some studies suggesting pain only recurs in about 30% of cases within 10 to 20 years of surgery."
There's always a risk with sugery.
ask your GP about it.

Telly Thu 07-Feb-19 13:37:33

I have sent you a PM. There is a TN Facebook Group which is a good place to post questions. There is also a TN Association, with a helpline. Sadly there are no quick fixes and an op is not first resort. MVD is an invasive procdure. Equally there are several different surgical procedures. Meds often have side effects and it is a question of trial and error. It can and does go away in time but as usual, everyone will have a different experience. I would do some research and see if there is a consultant with TN knowledge in your area and ask for a referral. Alternatively you could ask to see a neurologist. It is a debilitating condition but there is help available. Best wishes

MadeInYorkshire Thu 07-Feb-19 20:43:45

I have Sjogrens Syndrome which has in the last year completely ruined my mouth - 55 years with a few fillings, and the last 18 months has been hell - only have a couple of molars left and now my fronts are literally crumbling! It is an auto-immune disease which is attacking my moisture producing glands and it is vile .... anyway at one point I was getting horrendous pain across my face from my jaw into my ear, it was terribly painful and I feared that it was TN brought about by trauma as the dentists were having an awful job getting rid of the teeth despite my bone decreasing, and the nasty gum disease I have been left with despite taking fluoride supplements, oral probiotics, false saliva etc .... it has fortunately now gone, but I was taking Gabapentin for a while ... another one would be low dose Amitryptiline and other Tricyclic Anti-depressants such as Imipramine - they all have side effects unfortunately but generally there would be one that suited you better.

TN is also known as the Suicide Disease because of the dreadful pain it causes, so I do hope yours goes away very soon ....

cupcake1 Fri 08-Feb-19 10:27:36

I was diagnosed 10 years ago and I feel your pain! It is a frightening experience and so very painful. I had an MRI scan which confirmed the diagnosis and given an anti fitting drug called tegretol. I started taking 3 a day but now take 1 before bed time and apart from the beginning when it used to make me feel drowsy I have had no other side effects at all. I have tried stopping them but after a week the pain starts to creep back in so I will continue taking the 1 at night no doubt for the rest of my life. Rather that than that dreadful debilitating pain. I wish you well and send flowers

CassieJ Fri 08-Feb-19 11:29:19

I have also had this, and it is incredibly painful, so you have my sympathy.
I was prescribed painkillers [ can't remember which ones now ], which helped slightly. The pain eventually went, and luckily I haven't had a repeat of this.

I hope it works out the same for you.

tiffaney Fri 15-Feb-19 20:17:21

HiBStP, l'm so sorry to read that you have this painful condition. I recently had an appointment at my local Dental Hospital Oral Medicine dept as l have persistent orofacial pain and burning mouth. Although they ruled out Trigeminal neuralgia l had been on Tegratol (Carbamazepine) which is an anticonvulsant drug for a few weeks. When l mentioned that it was having no effect on my pain l was told it can take up to 4 months to work. So don't give up on them. Also l found the Dental Hospital far more informative and sympathetic than ENT. I hope you get some pain relief soon. My pain is bad enough and also has me in tears some days. Good luck x

sroge Fri 15-Feb-19 21:46:51

Yes I have it too! Most awful frightening pain I've ever experienced. Worse than labour! I take three Tegretol a day and it seems to be under control. I really hope you get some relief from this terrible condition.

travelsafar Sat 16-Feb-19 08:15:41

My sympathies to you all who suffer from this dreadful condition.I know how painful nerve issues can be. When i had sciatica it too reduced me to tears on several occasions.
Please god that you find some relief at some point. flowers

Floradora9 Sat 16-Feb-19 17:56:13

I had the same after a botched operation to remove wisdom teeth. I found gabapantin ( think that is right it is used for fits ) made me so tired. I remember climbing the stairs and thinking what a hard day I must have had then realised it was 10 am . It has never gone away but is a lot better after having to give up work as speaking made it so much worse. I still take amatriptylene which gives me a decent night's sleep . you have my sympathy .

Patsytaylor Thu 09-Jan-20 17:15:03

Yes. I've had this awful disease for over 2 years. Gabapentin didn't help and now on pregabalin. Pain now increasing so I'm on waiting list for MVD.
I don't know why this has happened to me. Just came out of the blue. I had a polyp operation earlier in the year but was assured this hadn't contributed to the onset of TN. Seems a bit coincidental to me though.