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ATYPICAL ODONTALGIA

Posted , 13 users are following.

tamiko_84091
tamiko_84091

Hi.

About three months ago I started to get tooth ache after visiting my dentist I eventually ended up having 2 root canels and an extraction even though he was reluctant as my teeth looked healthy he couldn't understand why I was in pain and thought it must be due to my fillings being old so decide to do root canel treatment. Nothing helped the pain and everytime I thought it was going it would flare back up. A few days ago I ended up in A&E in floods of tears but they refused to help and told me to go back to my GP and asked to be referred for a facial scan.

I went back to my GP where they told me the dentist has to make the referral. How ridiculous!! however he prescribed me Tegretol. When I got home I started to do some research and realised that this was prescribed for TN and after three days of taking it i was adamant that I do not have the symptoms of TN. I have a constant aching feeling on the upper left side where my tooth was sometimes it feels tingling but mostly throbbing and aching it never goes away and it is not a stabbing pain as TN sufferers describe.

I went back to the GP today after diagnosing myself and asked for amitriptyline although I'm reluctant to take medication I absolutely can't bare this throbbing anymore. I feel very alone and totally unsupported by my GP and A and E doctors.

I'd love to hear from anyone else who has similar situation to myself I have never heard of this before and it's a scary place to be as no one seems to understand. This whole journey has been a nightmare. I will start the medication tonight and I pray it works as I have a holiday booked in 4wks time.

Would love to hear from you!!

2 likes, 24 replies

24 Replies

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  • akil41128
    akil41128 tamiko_84091

    Posted

    You need to see a good neurologist. Your neurologist will increase your Tegra told those. Also you have to go to the maximum dose of Tegretol before trying amitriptyline this should really be a good start and this will take care of your pain for about a year why are you probably would consider seeing a neurosurgeon for more options I would I would do the neurosurgeon sooner than later so you can get this taken care off because the pain will return The pain will return again in about 1 to 1 1/2 years so you want to make sure you see in neuro surgeon in the meanwhile explore other options before the pain comes back on Tegretol good luck.
    • tamiko_84091
      tamiko_84091 akil41128

      Posted

      Hi. I'm even more confused now as I didn't feel that I had TN I am now on Amitriptyline. The problem is I'm going away in 4wks time amd have been told you can't go in the sun on tegretol.

      I have been referred to a neurologist but everything takes so long and I'm desperate. Has anyone taken any over the counter pain killers that help?

  • joanne49021
    joanne49021 tamiko_84091

    Posted

    I'm so sorry your not getting results. The only thing I can add to your post is how my TN started. It started as sensitive teeth and tooth aches. I, too, went to dentist. HVing been with him for 20+ yrs. he knew something was wrong but could not figure it out. After a year or more the pain started in electric shocks. I was diagnosed quickly and put on carbamazepine. Holy Toledo....it took weeks before pain eased up but I was a walking zombie. Went to see neurologist and he changed me to gabapentin. Weeks later, it kicked in and I had no problems taking it.My point to this whole long post is that mine started as teeth problems. I sincerely hope you can see a neurologist. It may not be TN but you do need help. Keep us informed.

  • linda49402
    linda49402 tamiko_84091

    Posted

    Hi there,I was diagnoded with TN two days ago and like you I felt alone and desperate.  I have been prescribed Tegretol and while I am reluctant to take this medication, it is better than living with the pain.  I had seen my dentist on Monday and he could see nothing on my dental xrays that should be causing me pain, I elected to have an old filling replaced and I think that is what triggered this severe attack.  I have already started acupuncture and taking turmeric tablets, I am determined to get relief.  Try to stay strong and remember, you are not alone.
  • sally90
    sally90 tamiko_84091

    Posted

    Hi, I started with tooth ache 8 years ago, on the third desparate visit to the dentist he could find nothing but said he had a cranial osteopath there would I like to see him.  He talked to me for a few minuites and said you have trigeminal neuralgia.  It took about 4 years before I had the electric shock pains but I have now have tooth ache, burning, electric pains in upper and lower jaw inside my mouth and my cheek.  It moves around.  I have tried lots of different drugs and the one I find helps is oxcarbazepine, for me it is better than tegretol with less side effects.

    Please do not give-up on your holiday, this condition comes and goes it is really awful and I feel desparately sorry for anyone who has it but try to relax get in touch with the TN Association and try to see a neurologist asap.  It is very frightening and very few people understand it.

    Wishing you very good luckand thinking of you.  Keep posting news.

    Sally

    • tamiko_84091
      tamiko_84091 sally90

      Posted

      Thank you Sally. I really dnt know what to do I've been referred for max fax scan (dnt know if I'm spelling that right) but it seems a long way off. How.do I get to speak to a neirologist quickly? I've taken myself off tegretol as it said that u can't go in the sun on it and I am now on Amitriptyline but I have virtually diagnosed myself and no idea if this will work but it's a name that keeps coming up. I'm debating Wether to go to a different a and e tomorrow.to try and get advise quickly from a nueralgia specialist nothing seems to be progressing quick enough.

      I'm praying this doesn't turn into TN that's even more scary hearing your story. Have you been able to find any over the counter pain killers that work?

      Thank you for emailing

    • sally90
      sally90 tamiko_84091

      Posted

      Hi Tamjko, no over the counter drug seem to work, you might try accupuncture.  I think you have to push your GP to get an appointment its the only way.  I saw Professor Zakrzewska, she is one of the worlds leading experts on facial pain specalising in TN.  She is in London at UCL.  She is a doctor and a dentist.  I have just looked her up and it seems she is running trials on a new drug for TN.  Her suggestion for me (this was several years ago) was to try mindfulness.  I was doubtful about this but have recently started it for MS (which I also have!!) and think it might work.  I am also sure that weather plays a part, low atmospheric pressure makes it worse, blue sky, sunshine and a mild climate makes it better, heavy cloud, rain, wind and cold makes it worse.

      Try to relax when it comes on, I know it is so frightening but getting tense does not help.  Do try the TN assosiation they will send you leaflets about it and I find it easier to show it to family and friends rather than try to explain it.

      I pushed my doctor to refer me to Prof. Zac, he said I wouldn't get an appointment but I did and it was worth it.  She explained it so well and I felt better understanding.

      Good luck keep strong.

      Sally

    • tamiko_84091
      tamiko_84091 sally90

      Posted

      Hi sally. I think my main problem is that I havnt been diagnosed yet. I was given tegretol by my gp after a 2 minute consultation with me sobbing like a baby. But when I came home I researched it and saw that tegretol is prescribed for TN. I dnt relate to TN synptoms I went on the TN association website and read about AO which sounds more like me. I have constant tingling throbbing in My gum and cheek it never goes away it's there constantly. I read that anti depressants work as they interfere with the messages being sent to the brain. So I've basically diagnosed myself. As i went back and told my gp what to prescribe. I'm desperate to speak to a neurologist as I may be totally on the wrong medication. I'm going away in under 4 wks and desperate for professional advice. I can't wait 2 months for a facial scan so debating Wether to go back to a and e tomorrow. I can't believe that no one is helping me

  • tamiko_84091
    tamiko_84091

    Posted

    Hi There,

    Well I just wanted to give everyone an update as there seems to be some very frightening stories on here and it has been a whole new world to me to read how much pain some people are in. My story started as I wrote it above. I have now been on Amitriptyline for about 3 weeks, I can honestly say I am pain free. I have the odd day where I can feel the side of my face aching and a very light throbbing however generally I am pain free. It was honestly one of the most scary experiences as no one seems to be able to diagnose anything quick enough when you are in that amount of pain.

    I have still not been given a diagnosis as I am still waiting for my MRI scan but in the mean time I am so greatful that this medication is working. I am taking 20mg per day and although there seems to be lots of forums discussing weight gain on this medication I have not experienced weight gain. In fact I was already dieting as I am going on holiday soon and I have continued to lose a couple of lb each week whilst taking Amitriptyline. I am aware that different medication works for different people but I just wanted to let people know that this has worked for me. I originally went onto the TN association website where they discribe the many various Neuralgia symptoms and bascially diagnosed myself and then researched the various mediations that can be used for that diagnosis.

    I know how desperate I was at the time so all I can say is please dont give up research research research because it seems they do not diagnose these symptons quick enough. Amitriptyline worked in around 6 days for me.

     

    • dezzi20667
      dezzi20667 tamiko_84091

      Posted

      Hi Tamiko

      I'm so glad I read to the end of your post as I was shouting out "AO not TN" as others were suggesting it was!

      I had facial pain five years ago after a failed implant and bone graft procedure and amitriptyline  worked although made me very sleepy.  The dental procedure had caused ATP (atypical facial pain) and I was pretty suicidal for a whole wire the shootings and stabbing all over my face.

      Then in June my tooth broke off at the gum line (was a bridge because had had the tooth removed for the failed implant)

      Over the last months as a result the tooth/teeth pain has become excruciating (9/10) at times and keeps moving from one tooth to another. My dentist says it's neuropathic and my endotologist says yes but I may need a root canal. It's so hard not to think it's pathological. I actually feel like so close to just pulling the tooth out. So ... I am on Lyrica but it's not helping so on Monday I'm going to go back to the amitriptyline but have to wean slowly off the Lyrica at the same time. Well done for self diagnosing -saves a fortune plus much time and if ami has worked then it IS AO and good job you didn't take carbomazapine (although they say to keep out of the sun with ami too!) 

      I'm praying it will do the trick for me as at the moment it feels like someone is performing a root canal on the tooth without an anaesthetic! What were your pains like? Did your gums burn too? It seems I can't drink caffeine as it exacerbates it.

      Please keep us updated. The pain is the most scary thing ever as not only is it so intense with the burning and stabbing but it's unpredictability turns one into a nervous wreck. 

      Good luck my friend x 

    • tamiko_84091
      tamiko_84091 dezzi20667

      Posted

      Hi.

      I really feel for you this thing is just awful. After joining this forum I have realised I am one of the lucky ones as mine is mostly under control. I take 30mg of amitriptyline daily and mostly the pain is under control. I do feel it most days but mildly and still feel a slight throbbing. I was referred to a specialist clinic in central London but they have basically agreed with me that it is neuropathic pain and if the medication is helping there's not much else they could do. Mine is bearable now although it worries me that I may be on medication for life. It does make me drowsy in the evenings but I take it just before bed and I'm usually ok in the mornings. Recently I have had a slight tooth ache on the opposite side of my mouth. I visited my dentist last week and he can't see anything wrong with my teeth. Im now worried this is starting again. The hospital explained that my nerve could be damaged so I'm trying to convince myself it couldn't happen on the opposite side. I dnt know if I'm just paranoid now. At its worse I had a real deep throbbing.. pins and needles all over the side of my face but I didn't have the shocks.

      I really hope yours gets sorted soon. It's a nightmare to live with.

      Keep in touch

  • dezzi20667
    dezzi20667 tamiko_84091

    Posted

    Hi Tamiko

    Thank you for your reply and I'm so glad your still is under control and try not to worry too much about the other side it's probably just a flare.

    I actually had my first bout in 2012 but there was no pain in the teeth. It was after failed attempt at an implant. 

    I had a bridge as a result of having the tooth missing and sadly the tooth holding the bridge snapped off in June 2017. Then started the face pain all over again. This time the pain then went into the back tooth as well as the broken tooth (broken at the gum line) 

    I had partial denture and not sure if this contributed but since Jan 2018 the burning in both teeth and the gums has been pretty unbearable. I had started on Lyrica so my neurologist said increase the dose and see if that worked but it's doing nothing so I am going to have to go back to the amitriptyline which did work in 2012.  If I add it in with the Lyrica I will be a walking zombie so am going to have to come off the Lyrica with the depression which goes with the tapering off.

    A couple of days the burning was so bad that I almost walked into a dentist in a Spain and told him to pull it out but then after 12 hours it stopped. I am visiting the dentist yet again today to check it doesn't need a root canal but it seems unlikely if the pain in that tooth stared when the other one broke and he's sure it's neuropathic. There are injections into the mouth one can have apparently and I'm very interested in the use of capsaicin which mo one seems to be able to explain how it's used as it's supposed to be topical (external) -does one use the same stuff but on the tooth?

    Anyway each day I pray it will go and try and be optimistic. Yesterday it was crawling in my cheek. I wake up every morning with my stomach churning and the pain starting all over again. 

    Maybe the return to the amitriptyline will do the trick.... 

    Let me know how you get on x

  • dezzi20667
    dezzi20667 tamiko_84091

    Posted

    I went five years ago and found Professor Zak very brusque

    She prescribed antidepressant (which I couldn't take because of my migraines)  and I had a year of various cbt courses which didn't really help.

    I'm being referred back now as the burning in the teeth is new and debilitating.

    Adding in the ami tonight. 

    Will report back! 

    How are you? 

    • tamiko_84091
      tamiko_84091 dezzi20667

      Posted

      Hi.

      I'm ok at the moment but I can't lower my dose every time I try the throbbing comes back. I still have days where I feel it and it occasionally wakes me up at night. But the amitriptyline definatly makes it bearable.

      It's very scary tho knowing it can come back at any time

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