Jump to content
The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
Scully

Trigeminal Neuralgia or plain old toothache ?

25 posts in this topic Last Reply

Recommended Posts

Sleepy
Scully

Hello All,

 

Since being back from holiday I've been having the most excruciating jaw pain.

 

The pain, on the right side of my face runs from my ear, a across to my lower lip, back along my jawline, to my ear, and someway down my neck.

 

It's quite the most uncomfortable and difficult pain to try to cope with.

 

BUT, it could of course be plain old toothache or a tooth access. I'm into my fifth day if this, but unlike previous tooth abscess I've had, this pain, at times, vanishes altogether........it's bliss when it does of course. Bit it comes right back again. I yawned a little while ago, and off it went again.

 

Anyways, I've gathered all my bravery and I'm to report ( with my knees knocking in fear ) at my dentist office tomorrow morning at 0900 hours.to try to figure it out.

 

I do think my furthest back tooth is a little dodgy ( technical term) so it may be that, but I'm not sure the pain associated with that would travel, much less vanish completely for a time?

 

Tomorrow will tell Hopefully

 

Scully

x


Edited by Scully

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
Crappy
Marina

It might well be TN and sounds a bit like mine. Not all dentists are as au fait with TN as they should be. If they suggest pulling a tooth for no valid reason (ie, no fracture or evidence of nerve problem or whatever), don't let them till you get it checked out thoroughly - there have been a number of MSers who had teeth pulled, being totally convinced it was a tooth problem, only to find the pain continued.

 

I've had various genuine teeth problems, including nerve problems and abcesses of various types, and nothing felt like what you describe.

 

As you tend to know your way round the forum really well :flowerface: I'm going to assume you've seen the links on this page on TN: http://ms-people.com/forum/topic/1980-trigeminal-neuralgia/ ?

 

From within the first site linked there, I have what my neuro called "Atypical" TN, as described here: http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html#atn. It's not quite the same as yours but it spreads from my eye to my ear to my jaw to down along my neck and sometimes to the top of my shoulder. I tend to refer to it as feeling as if I've been in a world championship boxing match. The pain, whereas not what I'd call sharp, is usually quite unbearable; my eye feels as if it's been gauged out, my cheek as if it's been beaten to hell, and so on. I often can't bear even being on the phone or having people speak in anything but a whisper as my ear can't handle the sound. When I first ever had it, I thought it was some kind of awful sinus problem but which spread all over that side of my face. I don't get pain on my lower lip though, nor in a tooth.

 

My attacks last about 2-5 days. But I now have Tegretol for it which helps keep it at bay.

  • Like 1

Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Share on other sites
angeltess

Hi Scully, as you know I don't post much now, but still check in now and then to see how you are all doing. I hope you get the pain under control and get some good advice at the dentist this morning (just realized you'll be there as I write).

 

It does sound like TN. As you know, I was told by the Neuro that I don't have MS on the same day she told me she's certain that I do have TN. My dentist also believes it to be TN, since x-rays showed no sign of decay or nerve damage.

 

The pain you describe sounds like what I experienced too. It never kept me awake, and was fine when I first woke in the morning, then after about 5 minutes the pain would start. It would spread from my ear to my jaw and neck and even my eye felt achy. It lasted over 2 weeks and got pretty severe, then one morning I woke and it was completely gone!! It's not been back since and that was last April. It was my second attack, each a year apart, and on each side of my face. I'm hoping it stays away this time, though the Neuro did advise amitryptiline if it re-occurs, as she said it helped with the symptoms, but didn't have the nasty side effects of some other meds specially for TN.

 

Anyway, just wanted to share my experience of it and good luck for today!

 

Jan. xxxxxxx

  • Like 1

Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

Share this post


Link to post
Share on other sites
derby42

Hi Scully, i dont know about tn but just wanted to wish you all the best for your appt. Sorry you feel so crap with it x.

  • Like 2

derby x

Share this post


Link to post
Share on other sites
Sleepy
Scully

Thanks guys, your input is very useful.

 

Rocked up at the dentist this morning. She had a poke around. I mentioned the possibility of TN. S

She then declared that I had some swelling on the right side of my face, she put her hands in either side of my jaw joints and asked me to open and close. Took an x-ray.

 

It her opinion TN isn't associated with swelling, the teeth looked ok on x-ray, but she said my right jaw joint was inflamed and X-ray showed some swelling of the jaw, which I've always know was a little mis-aligned anyways.

 

Upshot was she thinks I have an infection in the jaw itself. So have been given 7 days of penicillin to take.

 

I was relieved of 61 quid, And assured that it should vanish within a few days, but warned to finish the course of penicillin as per.

 

I hope her diagnosis is correct and this pain will dissipate soon.

 

Scully

x


Edited by Scully
  • Like 1

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
Crappy
Marina

Ah, that might well be it! Especially as your pain didn't seem to affect your eye in the same way as TN affects mine and Jan's.

 

Much as I hate it for you to have any pain, I kind of hope it is just the jaw and that the penicillin will take care of it as I'd hate for you to join our TN club! :hearts_circle:

 

Now, if only I could persuade some doc that the pain in the other side of my face is an infection and not neuropathic pain as the cranio-maxicillary (sp?) specialist who pulled my tooth as a minor op 18 months ago (cos of an obvious and visible abcess that 3 dentists all missed and which a ton of antibiotics didn't help) seems to insist it is neuropathic pain, despite an MRI showing something there and despite my telling him THREE times that neuropathic pain does not cause fetid smells in my nose and that my neuro said it wasn't neuropathic pain either! And I've now had this ever since.... When I tried to ask new GP about it, all he could say was that I needed to see a dentist or cranio-maxicillary specialist without referring me to one - which is sending me round in circles since it was my dentist who referred me to the cranio-maxicillary specialist. I despair... :bashhead:


Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Share on other sites
Sleepy
Scully

Well, I've finished the hefty course of penicillin.

 

Unfortunately the jaw pain, ear ache and general right sided facial pain is still there ! The only thing the penicillin has achieved is to give me a rather nasty legacy of 'thrush'

 

Pain runs from the temple, to my ear, the corner of my mouth, as before.

 

Am due back at the dentist on Monday morning, and the GP on Friday.......I will not allow the dentist to pull the tooth unless she is absolutely convinced that there is a problem with it. Also I seem to have developed a resistance to the lidocaine anaethetic they use. It didn't work last time I needed dental work, and the same local anaethetic ( lidocaine ) didn't work when I had a breast cyst removed earlier in the year.

 

I'm either going to have to be incredibly brave.........or, they will have to use something else. Am living on Baclofen and gabapentin like they are smarties right now

 

Scully

x

 

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
Christina

Sounds really horrible Scully! I really wonder if this isn't an MS symptom, especially as the penicillin hasn't worked!

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

Share this post


Link to post
Share on other sites
Crappy
Marina

Oh Scully, sounds awful! I'm sorry it didn't fix things for you! How awful too about the lidocaine... I'd be running out the door so fast, if it were me and they didn't offer me some other kind of anaesthetic!

 

Whilst your dentist is right that TN doesn't cause swelling (that I know of), I wonder if it's possible that you had both TN and an inflammation in the jaw? Have you got an MS nurse or neuro you might be able to ask?

 

When I first had the TN, before I was DX'd, my pain specialist said to try Baclofen together with an NSAID of the Celebrex type (mostly those of the type they discontinued a few years ago!). It didn't really work much, but might take the edge off? That's if you can get your GP to prescribe that type of NSAID for you...


Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Share on other sites
Great Dane

So sorry to hear that you are having such a miserable time, Scully. I shall keep my fingers crossed that you will get is sorted out as soon as possible and get some relief from the awful discomfort you are suffering.

 

Great Dane x

Share this post


Link to post
Share on other sites
Sleepy
Scully

Bugger, Bugger, and bugger !!!

 

Update. Been to see my regular dentist this morning. She bashed my teeth with a metal thing. Upper and lower on the right side.

 

This wasn't easy as I found it hard to open my mouth fully, due to the facial pain stabbing me in th face.

She declared that there is nothing wrong with the teeth on that side, and that I could either.

A) be sent up to the Maxillo Facial Unit at the local hosptil, today.

Or

B) see my GP this morning. And this morning it must be.

 

Have just seen the GP who, after some poking and prodding has confirmed that I have Trigeminal Neuragia.......hence all the swearing at the top of this message.

He has doubled my gabapentin dosage as it shoud deal with this excruciating pain and is writing to my Neurologist to be seen as this is a major new symptom for me.

 

So folks. On this huge dose of gabapentin, I shall be either sleeping a lot, or completely ga-ga for a while........but, it has to be better than this horrid, excruciating pain.......GP said that TN is often referred to as the 'suicide disease'.........hhhhhmmmmmm! I see his thinking there

 

Scully

x


Edited by Scully

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
Crappy
Marina

Oh dear, Scully, I so empathise with and feel for you!!! And so sorry to hear it is the dreaded TN after all...

 

If the Gabapentin doesn't help, ask for Tegretol 200mg Prolonged Release (one a day at night). This is an epilepsy drug which is also used specifically for TN. My neuro originally prescribed it for me for my TN. Taken daily, it should help keep the TN at bay, or at the very least lessen it and how long the attacks last for. I can't take Gabapentin cos of side effects but found the Tegretol to be the only other thing to help.

 

Hope your attack finally goes away and that you find something that helps! :hearts:

  • Like 1

Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Share on other sites
tdkstratus

Hi Scully

 

I'm still getting over the same type of thing but instead of the pain I have numbness down the whole right side of my face and half my mouth. I was given Gabapentin but have had it increased recently to 300mg, 3 times a day. Luckily it is starting to subside so hopefully it'll help to cure the pain. Like yourself, mine started at a tooth being a bit tender. I just thought it was my wisdom tooth trying to come through again so didn't really think much of it. When I asked my dentist about it there was nothing wrong with the tooth. And then the numbness started.

 

Hopefully it'll pass quickly.

  • Like 1

Terri

 

Ohana - Where nobody gets left behind or forgotten

Share this post


Link to post
Share on other sites
Christina

I'm so sorry to hear you've got TN Scully. It sounds awfully painful and I really hope the increased gaba soon gets on top of it for you. Hugs xx


Not waiting for the storm to pass, but learning to dance in the rain ....

Share this post


Link to post
Share on other sites
Sleepy
Scully

I have to say that this pain from Trigeminal Neuralgia IS rhe most severe and painful things I have ever experienced.

 

I am taking Huge amounts of Gabapentin and Baclofen, a few Amitriptyline for good measure, which is dulling the painful attacks, but when they wear off................how can I describe the worst pain I've ever known?

 

I woke this morning, and of course the meds had worn off a bit.....took a drink or water, and this agonising pain began over the right side of my face. A red hot poker being driven into my face near my ear, which sent electrocuting shock waves to my eye, nose, inside my cheek, and through my teeth and jaw....

 

Not much reduces me to tears.........but this definitely does....I may write a blog about TN, when I'm feeling better

 

Scully

x

 

 

 

 

 

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
Christina

I'm amazed and full of admiration you're still managing to write such full and supportive replies, given your pain levels right now Scully. It sounds very horrible and I'm not surprised it makes you cry, I know I would be.

 

Chris x

  • Like 1

Not waiting for the storm to pass, but learning to dance in the rain ....

Share this post


Link to post
Share on other sites
angeltess

Sorry to hear it is TN after all Scully. Whilst I know everyone's experiences must be different, if it's any consolation, I had the tremendous stabbing pains for around 3 weeks, then woke one morning and it was completely gone. Now and then when I'm really tired or stressed I get the tell-tale twinges in my jaw and a slight ear pain, but luckily they haven't hung around so far.

 

Co-incidentally, I was at the dentist yesterday for a check up, and he remarked that all my teeth were absolutely fine and he was very pleased that he didn't pull a good tooth last time I was there with the facial pains. I concurred with that sentiment!!

 

I hope your pain vanishes as quickly as mine did and stays away, as it's pretty debilitating.

 

Take care, Jan. xxxx


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

Share this post


Link to post
Share on other sites
Sleepy
Scully

Thank you for your helpful and positive responses.

 

It's a cruel condition. This cold weather, I've discovered, makes it worse, I stepped outside yesterday and the rush of cold, icy air on my gave kicked it off big time.

 

Am now up to 1200 gabapentin a day, and it does seem to be helping. Am sleeping a lot though ! I have found that I'm sleeping well at night, but as soon as I wake and get up, the TN kicks off again in a big way. Maybe that's just the overnight meds wearing off.

 

I am pretty useless all day. Simply managing to do the minimum of chores, getting bathed and dressed etc. it sure is THE most debilitating symptom I've ever had thus far.

 

Have tried to call the MS Nurse to discuss, but she as yet, hasn't answered my call.

 

Thank you for your support guys, much appreciated.

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
angeltess

Hi Scully, so sorry it's so bad for you right now. Hope today proves better!

 

As for sleeping well at night - I don't think it's purely down to the medication. The pain never kept me awake at night, unlike the pain of toothache for example. I did mention this to the Neuro, and she said that was normally the case with TN. She didn't know the reasoning behind it, but it's 'normal' to sleep OK and for it to start on waking.

 

I really hope it buggers off soon for you. xxxx

  • Like 1

Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

Share this post


Link to post
Share on other sites
Crappy
Marina

I can confirm what Jan says, the TN doesn't keep me awake either. When I wake, I sheepishly open my eyes and say to myself, "Is it still there?" and then it either is or isn't.

 

Hope your MS nurse calls you back very soon.

 

:hugs2:

  • Like 1

Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Share on other sites
moomin

Hi Scully,

 

I haven't posted anything on here for ages although I do still read the posts often. I am still diagnosed with clinically isolated syndrome at the moment. I just wanted to say that I can understand how you are feeling as I have similar facial pain which mainly affects the left side of my forehead and eye. I have a deffinate trigger point just above my left eyebrow which when touched sends a sharp pain shooting through my eye. Cold wind is awful too.

 

Anyway I won't blab on too much about me just wanted to say I hope you feel better soon.

 

Moomin. Xx

  • Like 1

Share this post


Link to post
Share on other sites
Sleepy
Scully

Thank you once again everyone. Your responses are a great help.

 

The MS nurse has just been out. She called on the off chance I was a home. I felt quite humbled that she is out driving in this snow, visiting me at home.

 

Anyways, although I'm taking 1200 Gabapentin a day, she's suggested I go to 1800, and take one every 3 hours to try and get the pain under control a bit.

 

GULP! I am like the walking dead on 1200. So I may be sleeping a lot this weekend, apologies if I go quite for a while.

 

She has spoken to my GP and she is also going to email the Neurologist to get me shifted up the list as he's pretty booked up apparently.

 

Onwards !

 

Scully

X

PS, in order to cheer myself up a bit. I've ordered the new 4th generation iPad ! Oooohhh I can't wait. My lovely partner Clive will inherit my old one. Think he's almost as excited as I am !


Edited by Scully
  • Like 1

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
tdkstratus

You'll love the new iPad. My partner got me one as a joint xmas/birthday present. :thumbsup: Haven't stopped using it since Xmas day. Hopefully the pain has subsided a bit. That's me now on full dose of 300mg and I still have some numbness in my face at the cheek/jaw/mouth area. Tongue is still numb so I have burnt my mouth a few times.

 

You never know. You might get addicted to your iPad like I did and forget about the pain for a little while. Enjoy the iPad.


Terri

 

Ohana - Where nobody gets left behind or forgotten

Share this post


Link to post
Share on other sites
Sleepy
Scully

Thanks Terri.

 

New iPad is awesomely brilliant. I used to use my old one all the time, but this one really is something else !

 

The TN, dare I say it, is now under control, mind you I'm now up to 1800 Gabapentin per day ! Side effects have worn off a bit mercifully.

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
Share on other sites
tedhutchinson

If you are not already taking 400mg magnesium daily it may be a good idea to do so 100mg magnesium chelate with each meal and before bedtime.

 

Mg deficiency in the rat and/or mouse results in increased skeletal substance P, which in turn stimulates production of cytokines. the proinflammatory cytokines increase the inflammation and pain levels Magnesium is also required to activate the Vitamin D hormone Calcitriol. If you are magnesium deficient (and most adults consume only 50% of current magnesium RDA) then it's almost certain you are not benefiting from keeping your Vitamin D3 25(OH)D level at 125nmol/l or 50ng/ml or above. More on Vitamin D and Pain here

 

It made a huge difference to may pain sensitivity threshold increasing my 25(OH)D from 40ng/ml 100nmol/l to keep it AT or ABOVE 125nmol/l = 5Ong/ml It doesn't seem a big deal but there is a difference between being aware of constant chronic pain and being able to ignore it.

I'm afraid I'm a wimp when it comes to pain so toughing it out isn't an option for me.

Life's too short.

 

How to Alleviate Pain Caused by Trigeminal Neuralgia


Edited by tedhutchinson

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Similar Topics

    • Trigeminal Neuralgia​​​​​​​

      The following article appeared in the RSS Newsfeed:-   Trigeminal Neuralgia   Anything new, @Marina & @Shirl ?  

      in General Discussion about MS

    • Trigeminal neuralgia or toothache?

      Hi, there was a thread about this a while ago but no posts recently so I've started another. I had an attack of TN about a year ago which happily only lasted a few weeks.I'd never felt pain like it so my sympathies to those of you who have it more severely/permanently. I had toothache all weekend which I thought was another TN attack, til my brother said the exact symptoms sounded like what he experiences when he has a tooth abscess. I dismissed it at first but by Monday I was coming round to the idea as the main source of pain seems to be a single tooth. So I went to the dentist who prodded my tooth with that metal hook thing they use and took 2 x-rays. She said though that there was no abscess showing on the x-ray, no decay and no gum disease. What I'd be grateful to know though from other TN sufferers is whether anyone else has had similar symptoms. The attack I had last year was much more generalised and more painful but as that's been my only attack (I know how lucky I am) I thought I'd ask. Thanks.

      in General Discussion about MS

    • Trigeminal neuralgia.

      I had been taking amitriptyline for neuralgia on my face and head for over 10 years, but I stopped taking it a couple of months ago as it was causing heart palpitation I thought I would be ok, but the excruciating face pain started up again so I have started Pregabalin . I can normally only cope with the lowest possible dose of any medication, so I'm wondering if anyone has experience of Pregabalin, and what dose has given relief. I started on just 25mg, and the pain is subsiding already. I was able to control the pain before with just 10mg of amitriptyline. The pain goes up through my jaw, into my ear and up to the top of my head. If anyone has experienced this, you will know how unbearable the pain is. This was the first MS symptom I had many years ago, long before diagnoses, and it still plagues me to this day. I have SPMS now. Many thanks to anyone who shares their experience of this with me.

      in General Discussion about MS

    • Occipital neuralgia

      Hi all, Just wondering if anyone has any experience of this, and if they do, anything that helped it? (Particularly things a pregnant person can use!)   I've had this pain for about 6weeks and hadn't thought it was MS related, was getting to end of my tether and decided to go to GP , but had a quick google first, only to quickly discover my symptoms fit occipital neuralgia to a tee.   It's incredibly painful, and is becoming increasingly debilitating as when it comes on (as it does daily) I can't concentrate or read, or do anything of any value, and as it keeps happening badly when I'm in classes, it is becoming a real issue.   Just bending to get something out the fridge causes intense pain and black spots in my eyes, it's really starting to get to me.   I also had two days this week where my tongue and lips where numb/pins and needles, plus my walking and bladder have been playing up, so am now suspecting a small relapse. I don't want to ring the MS nurse though because if they get a whiff of MS activity they will whack my pregnancy up to high risk, meaning I won't be allowed to use the birth centre. Obviously if I feel my ability to give birth will be affected I'd say something, but at the moment I don't feel that way, so don't want to involve medical people.   Any ideas, at all, would be greatly appreciated!            

      in General Discussion about MS

    • Saw a new Neurologist following Trigeminal Neuralgia

      Morning everybody,   As some of you know, I used to be under the care of Queens Square in London, where I was first diagnosed. Unfortunately, of late, I found the train, tube, cab trip to London all too much so, it was decided, that as there was nothing they could do for me anyway. I would be referred to a local unit if a new symptom or major deterioration develop.   Well, Trigeminal Neuralhia developed just after Christmas ( all info on another post). So I was referred to a local unit.   Saw a very nice chap, who apologised and announced that he would have to start all over again, which I'd sort of expected anyways. So, much to his glee, I took along copy MRI scans, and all the copy letters from London, he was ever so pleased. Nevertheless, he wanted, understandably, to do all his own assessments, which I'd expected anyway.   Anyways, the usual poking, prodding, pin sticking, stand up, sit down, push, pull.....you all know the drill by now.   He said very little about the TN really, only to start dropping the Gabapentin and see if the TN comes back again, if it does, then increase the dosages once again.   He couldn't read the scan on his PC so he asked if he could hang on to it for a week, and he would be able to review it with other neurologists and radiologists very soon. He ordered the usual battery of blood tests, I was slightly worried that one of the tests said ' ALS' but I'm sure London ruled that beast out before.   On my way out I asked the nurse if I should have a follow up appointment? She said ' oh the Dr. will send for you when he has all the results' So that was that really.   My MS Nurse and Neuro-physio have always said that I should be under the care of a neurologist, despite myself and my GP feeling that it wasn't ever going to be very beneficial, but the TN sort of forced the issue .   So that's me, back on the Neurologist lists !   Scully x

      in General Discussion about MS

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
×