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

(37 Posts)
mumface Wed 29-Aug-12 20:15:22

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.

Tuttutitlookslikerain Wed 29-Aug-12 20:22:26

Have you been referred to a Pain Clinic? If not, then I would request that if I were you. I have chronic pain, not facial, and the pain doctors have been a Godsend. They have more knowledge different painkillers and other drugs that can kill pain.

In my youth I worked in the Maxillofacial dept and saw quite a few people with facial pain. They seemed to be in quite a bad way, but usually the surgeons managed to come up with a treatment plan that helped them.

I am sorry you are suffering. I hope someone who will be more help will be along soon.xx

nankypeevy Wed 29-Aug-12 20:26:09

pain clinic.

sounds bloody awful. hope you get sorted soon.

mumface Wed 29-Aug-12 20:54:12

I am awaiting an appointment with the pain team, taking Diclofenac and codeine atm.

mignonette Wed 29-Aug-12 20:57:57

Tuttu's advice regarding a referral to the local pain clinic is sound. My local clinic treated my trigeminal neuralgia successfully. They have access to treatments and coping strategies that are safe in pregnancy; mine was developed and managed by an anaesthetist with access to all manner of health professionals including PAM's.

Thank goodness for my clinic, because trigeminal neuralgia was like being hit in the face with an ice pick.....Repeatedly.

mumface Wed 29-Aug-12 22:36:18

Mignonette- What are PAM's ?

mignonette Thu 30-Aug-12 13:38:15

PAMs = Professionals Allied to Medicine. Includes Physio's, Speech and Occupational Therapists, Radiographers, Audiologists. Pain Clinics are Multi-Disciplinary.

OhBurger Thu 30-Aug-12 16:42:55

I was treated with amitriptaline (sp?) It worked for me thank goodness. Stopped taking it a while back and apart from the odd niggle and some tingling in the area I am in remission. A referral to the pain clinic in your area is a good idea, coping with the pain was nearly impossible for me. I spent long periods wired to the moon on painkillers till I started on the meds.

noddyholder Thu 30-Aug-12 16:44:13

Have you tried max dose soluble aspirin for a few days?

mignonette Thu 30-Aug-12 16:58:35

Ask your specialist about low dose Amitriptyline. I didn't recommend this in earlier post because I mis read it and thought you said you are pregnant.

mumface Sat 01-Sep-12 11:06:43

Thanks, after a night in hospital I am now on Amytriptaline. Got my fingers crossed, they said I have to wait for it to start working, it's hard not to be a nervous wreck in the mean time. It's great to hear from people who have got through this.

dottyaboutstripes Sat 01-Sep-12 17:45:29

I was diagnosed with trigeminal neuralgia eventually after a couple of years of pain. You have my sympathy because it's hellish. Amytriptilene didn't work for me, I also had a couple of other drugs which didn't work, but was them prescribed tegretol and it was incredible. Relief at last!

OhBurger Sat 01-Sep-12 19:24:08

Glad to hear you are trying something else, I really hope you get some relief. It's an horrendous condition to have sad I know there is some pretty drastic surgery available too but I think it's only used as a last hope as it involves deep brain surgery x

woahwoah Tue 04-Sep-12 09:31:18

Hi, I've had this for the last two years or so. It's miserable, the pain at the start was awful, but amitriptyline is my friend!
I found it helped a bit within the first week or two, then after a month or so the pain suddenly eased. I think it has to build up in your bloodstream or something. Since then, I have a constant background tingling or smarting pain, which has spread and moved a bit, but is not so much painful as annoying.
I have found that if I cut back on the amitriptyline the pain comes backsad so for the time being I'm stuck on it. The side effects seemed to wear off after about three months and only reappear if I have to up the dose during a flare up.
I'm hoping it might go away one day, does anyone know how long it lasts?

slartybartfast Tue 04-Sep-12 09:32:49

is it stressed induced op?
my tmj pain was.
i had exercises.

mumface Wed 05-Sep-12 08:53:12

Thank you for your helpful replies. Woahwoah that's great the Amitriptyline is helping you I've only been on it 5 days and hoping it will really help me to, as I am slipping into depression as it's hard to live in pain all day as you will know. I'm not sure how long it lasts I think if you find the right medication it can disappear altogether and you can slowly come off the drugs. I really hope so as it's ruining my desire to have another baby one day, but the drugs are not safe sad
I think mine might have been stress induced but I have had an op on the other side of my face after the pain started for another problem (perforated sinus after tooth extraction) and I also clench my teeth but cannot wear my mouth guard as I'm in so much pain.

EdMcDunnough Wed 05-Sep-12 09:01:05

This is going to sound stupid and you might want to thump me, but are you absolutely certain it isn't tooth related?

I had some pretty bad pain a year or two ago and eventually after a few months it was actually a tooth that was causing it.

I am sure that you have ruled this out though, sorry for mentioning it.

Pain wise what worked for me was Naproxen.

EdMcDunnough Wed 05-Sep-12 09:02:29

Sorry by tooth related I mean an undiagnosed infection in a root or somesuch.

nodecentnickname Wed 05-Sep-12 16:10:16

Tegretol? Tried this drug? Worked for my husband.

Hope you find some relief.

MikeLitorisRings Wed 05-Sep-12 16:15:04

I use amitriptyline (up to 25mg a night) and naproxene. But that is for TMJ.

I have been given conflicting advice on whether or not I should be on it long term though.

woahwoah Wed 05-Sep-12 16:41:18

Mumface, I hope you do get some relief soon. I know how frustrating and scary it can be. If the amitriptyline isn't working after a few weeks, it might be worth trying a related drug like nortriptyline.

I've been assured that just about everyone with this finds a drug eventually that gives good relief, though sometimes not total relief.

Try and get a referral to pain management - the waiting list can be long so it's worth getting on the list pronto.

I think there is a stress connection, but it's not just about stress. When I'm stressed I have more pain, but I don't think stress caused the original pain, if you see what I mean. For me it started with a root canal, sadly.

If you want to find out more and 'meet' some people who really understand about face pain, try this link

or PM me, if you like.

mumface Wed 05-Sep-12 18:23:26

I have tried Tegretol, no improvement on it. I was utterly convinced it was a tooth, I begged my dentist to remove teeth to relieve the pain to the point where I had 3 teeth out shock and still in pain. I have been advised by the maxillofacial Dr not to have anymore out as it could make it worse, but I still have thoughts of running to the dentist as the pain seems to move to the next tooth as soon as one is removed.
I took a letter from the hospital to my GP this week to refer me to the pain team, but he wants to give me another week on the Amitriptyline and Lyrica. Mine gets worse with stress also.

Lucygettingmarried Wed 05-Sep-12 23:33:20

Do the diclofenac and codeine work?

Have they tried Tramadol?

I'm sorry you are in so much pain.

Showtime Thu 06-Sep-12 00:14:49

Agree Pain clinics can be marvellous.
Been mis-diagnosed with trigeminal neuralgia years ago, drifting in morphia haze until parents called in own GP who diagnosed tooth problem, soon sorted by dentist.
Just in case yours might be tooth-related, have you tried oil of cloves on cottonwool and/or a toothpaste for sensitive teeth? Best recent painkiller (spray, gel or roll-on) to try on face is Biofreeze, about £10 from pharmacist.

mumface Thu 06-Sep-12 09:01:44

Codeine and Diclofenac don't touch it, even on Morphine in hospital I still felt it. I have been using sensitive toothpaste for many years. I have also tried clove oil on the teeth.
I have come up with a new theory today. When I had a couple of teeth out a few months ago my main bite spot on that side rested on one corner of a tooth (no tooth beside it) the spot above is the main painful spot. I am thinking maybe this is causing compression on a nerve in the cheek above. Even if eat on other side this corner still bites. That point on my face is not used to this degree of pressure. Maybe it is pressing on a nerve.
I have noticed since I have been having porridge the morning I have been relatively pain free till and hour or so after dinner. Going to try a soft/ liquid no chewing diet for a few days, soup, jacket potato etc and see if there's an improvement. I have some partial dentures being made, so in a week or so the bite will be corrected if I can wear them.

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