Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Atypical facial pain/neuralgia I'm in agony can anybody give me success stories please?

52 replies

mumface · 29/08/2012 20:15

I'm in my 3rd month on agonising facial/tooth pain now and I'm starting to loose the will to live. I have been diagnosed with atypical facial pain by the Maxillofacial unit at the hospital. I feel a constant burning throbbing pain in my upper right teeth and gums. It's there from the minute I wake up till I go to sleep. Some days I am in agony and beg for the pain to stop. These days, like today are getting more frequent.
I have had 3 teeth removed in the hope of finding the pain to no avail, all x rays are clear. Have tried a few drugs nothing helps, Baclofen, Pregabalin and Carbamazepine. Can anyone give me any success stories or advice. I have tried hot compress, cold works a little but I need to know I can get through this it's so hard looking after 3 children as a single mum with this problem.

OP posts:
mumface · 06/09/2012 13:24

I think having a breakfast that doesn't require chewing might be what's helping me iyswhm not that porridge is a painkiller.

OP posts:
BreadAndJamForFrances · 07/09/2012 18:41

mumface I would also suggest pain clinic.....I have had two c-sections, the second one didn't heal so a huge hernia developed. This was repaired, but also didn't heal so I had to have a major repair done. Four operations on the same site has left me with nerve damage and awful pains. After 8 years and lots of pain/scans/examinations/arguing my case with unsympathetic doctors, I finally got sent to the pain clinic who believed me that was actually in pain.

I was prescribed Verstatis pain patches as well as Lyrica tablets, both for nerve pain. I have been using the patches for 8 days now and already notice a difference (in surface pain, not so much with the deeper pain but that may be due to muscle complications with the operation Hmm ), the full effect should take 2-4 weeks to build up. I'm not so keen on taking tablets, so wanted to see the full effect of the patches first.

You are probably thinking none of this would apply to your pain, but the patches are usually prescribed for shingles and nerve pain....which can be on the face. You have to leave the patch on for twelve hours at a time, with twelve hours break.....so maybe you could use them over night???

Verstatis Patches

katy999 · 30/09/2012 11:32

Hello there. I am in same situation, 3rd month of constant pain, whole day. I did laser hair removal on my upper lip, after that, same day, pain started over teeth (number 1) spread to nose and beside teeth spread to troat. I visited numeruos of dentist and finally they made diagnosis of atipical facial pain...Next week i will get some drugs from my doctor...I have 29 years. Mumface are u getting better with your drugs? Does anywhone know if Atypical facial pain ever stop or we have to deal with it whole life? Regards Katy

MedusaIsHavingABadHairDay · 30/09/2012 23:40

I had atypical Trigeminal Neuralgia.. utter hell. I was almost suicidal with pain, and lost two teeth in the process and the dentist (and me) felt it HAD to be teeth. It wasn't.
My saviour came in the form of my GP who had just been to a conference on nerve pain disorders, realised it was TN and put me on tegretol. Unfortunately that made me sick, but she switched me to pregabalin (lyrica) and it worked. On MASSIVE doses at first, but gradually as the pain was controlled we brought the dose down and switched to Gabapentin (as it's cheaper)

After about 4 months of sheer pain it finally stopped. I was on 3600 mg Shock at first. Now.. two years later I am still on a small dose 200mg a day and will probably stay on it forever as when I try to stop I get 'warning pain' again.

It CAN be helped..but it takes trial and error to get the right meds. Nerve pain isn't helped by traditional painkillers.. codeine etc doesn't work. When I finally saw the nerve specialist he was impressed that my GP had diagnosed correctly and got me on the right meds. Ask about Lyrica or gabapentin. I also tried amitriptilyne but it didn't work for me.

I still get pain now and then..cold wind on my face is a big trigger but then I just up the gabapentin and it subsides.

It CAN get better x

Lynnwo · 29/10/2012 21:19

Have been on pregabalin now for two weeks 300 mg per day but not having much effect. Can anyone advise how long takes to kick in or if they are on a higher dose for atypical face pain? Don't know whether to stick with it or not.

Jamilah555 · 19/05/2013 00:28

Hi, I am new here, this is my first post. I just got here at first by chance, I have been searching on all TN related issues. I hope mum face is reading this, since your post attracted me first, I could understand what you were going through. I hope you are better now.

Nevertheless I really just wanted to tell you what helped me, that in three weeks I am getting acceptable relief enough to go back to work. I was also convinced it was my tooth or teeth on my left side of the face where it hurts most. I got all that tested. Tegretol and other meds didn't work. I was desperate, pain unindurable. I read somewhere about acupuncture. I live near Dubai. I decided to go to the nearest acupuncturist, a qualified Chinese doctor. After the 5th session on all the nerve spots of the left side of my face I felt a marked change in pain. The sharpness was reducing with each session. But at the same time I was taking vitamin B12, B1, B6 and the whole complex. Fish Oil 1000mg. Magnesium citrate. Multivitamins. Ginseng. I am also using garlic oil capsules.

I stopped tegretol after one week, I didn't like its effect on me, lack of clarity and no relief in pain. My doc told me it takes a while to kick in, but during a brief stop of tegretol before my refill, and I was getting better with acupuncture, I preferred to stop tegretol, my doc may not be happy with me, but there you are, the idea is to stop the pain, and heal the nerves with the vitamins. And I was feeling better without the tegretol. So I followed what was working for me.

I hope you are feeling better anyway. In my case the acupuncture was instrumental in giving me relief and the vitamins B12, 1 and the rest were supporting the healing. In three weeks after I started all that, I just feel mild sensations on my face, but on a scale of 1 to 10, maybe around 3 is there, wearing off gradually. I can sleep. I hope this helps. I am on my second 5 day sessions of acupuncture. I will stop to watch after that.

saoirser · 06/02/2015 19:00

Anyone that thinks aspirin will help trigeminal neuralgia really knows nothing about it.

noddyholder · 07/02/2015 15:32

Did you really join just to say that? Hmm

Fancysocks621 · 15/05/2016 03:29

What dosage worked for you?

CharleyDavidson · 18/05/2016 18:28

Zombie thread, resurrected.

Millionairerow · 20/05/2016 14:48

I had this for 6 months and it went away eventually. I used paracetamol and aspirin. Dr offered me amytriptyline but I refused. My friend had it at the same time and she had her wisdoms taken out and it went. I hope you find relief soon. The other thing I wondered if it was shingles but never got that checked

Starrr123 · 15/01/2022 21:28

How is everyone now ? Im having a lot of pain. Wondering if anything helped xxx

Deedoo · 25/09/2023 08:19

@Starrr123 so aM I confirmed TMJ

Deedoo · 25/09/2023 08:21

@mumface did yours end

Mumface1 · 25/09/2023 11:10

Hi yes, this happened many years ago now. The pain eventually went and has not relapsed in about 10 years now.

Deedoo · 25/09/2023 12:47

@mumface what helped xx

Mumface1 · 25/09/2023 16:58

I followed a very healthy diet, cutting out gluten, sugar and artificial sweeteners and I had electro acupuncture and I slowly improved until it was completed cured.

Deedoo · 25/09/2023 20:00

@mumface would you mind pm me the details of electro acupuncture xx

Nikola888 · 06/10/2023 05:18

Please let me know how do you feel now because I have same problem exactly

Deedoo · 06/10/2023 06:48

@Nikola888 what symptoms do you have

Nikola888 · 06/10/2023 07:05

First time I have pain 4 years ago on down molar tooth,I did rooth canal , but nothing changed… after that I did extractions and I felt way better… couple of months after that I felt same pain on another tooth, and I did again rooth canal, pain was still here so Dentis did extraction again. Couple of months after second extraction I felt pain in another healty tooth… I have been changed more then 10 dentist and they told me tooth is perfectly fine… usually I feel pain at night time after 9 pm, pain is sometimes very strong sometimes not… I have periods of 15 , 20 days without pain, but pain always comes back…painkillers doesn’t help at all, I just sit and wait pain to stop… no body understand my problem and I rly feel hopeless… sometimes I wanna take every teeth out …

Deedoo · 06/10/2023 07:38

@Mumface1 are you on medication

Deedoo · 06/10/2023 07:39

@Nikola888 thats the problem remove one tooth and issues start 😩 happened to me I had 3 teeth removed caus I was told they are causing issue and pain just moves around

Millionairerow · 24/10/2023 13:09

Hi I had first bout in 2016 and disappeared after 6 months. I had pain again after death of my mother in Jan 2022. Went to drs and dentists as X-ray didn’t show anything wrong with my tooth. Dr went between Bell’s palsy, trigeminal neuralgia and infected salivary gland. This time I did take the amitriptyline which brought pain under control along with antibiotics for blocked salivary gland. Fast forward 18 months later, my pain started breaking through the amitriptyline and I could barely open my mouth again. Went to dentist (as GP wouldn’t see me which was charming seeing as I hadn’t been for over a year! Talk about never wanting to bother GP again!!!). They did an X-ray and showed I did have infection in the root, tooth whisked out and now no pain. Off the amitriptyline and happy that I am as it made my memory shocking. Hope you all get resolution

Deedoo · 25/10/2023 07:24

@Millionairerow was it a root canal tooth

Swipe left for the next trending thread