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Help / Advice

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chrisd1888
chrisd1888

I am hoping someone can relate to my pain and maybe point me in the right direction. I've had severe problems with my mouth since September last year. I originally had pain on my lower front tooth and there was an abcess. My dentist removed the tooth to kill the infection. A week later i had suddenly had burst of what can only be described as lightning like pain, between my right hand side top and lower teeth. It caused me to drop cutlery when they connected or even shout out, the pain was really bad. I went back to the dentist and she reopened the socket to see if the infection was still there, subsequently there was nothing, she was satisfied it was clean. I assured her i was in considerable pain and as she was unsure she referred me to a Dentist who specialises in facial pain. This dentist suggested this was stones which could easily be removed. I used my Private health care and they carried out an MRI, no stones where present and naturally i was disappointed. The Doctor then suggested it is TN. I was prescribed carbamazepine and after a month i had to go to my own GP as i was suffering from migraines on top of the constant pain in my mouth. I am now taking 14 Neurontin capsules a day along with various other painkillers. I have just had a wisdom tooth removed and this has had no bearing on my pain.  The pain is under my bottom right hand side, it is there all the time. It is like i have lead in my gum, a heavy burning weight and it feels like it wants to burst out. Occassionally the worst pain comes back, it starts at my top teeth and then bursts through. This pain is horrendous. I am pretty much at the end of my tether. I feel like people think i am making it up as theres nothing clear. I keep quiet but surely there is something that can be done? Does anyone think this is TN? Any suggestions what i can do? I am generally a healthy 40 year old man. I dont want to be wasting time going to dentists/doctors etc. I have a constant pain 24 hours a day and just want a clear diagnosis and help. Sorry for the rant im just hoping someone can relate to this. thanks    

0 likes, 5 replies

5 Replies

  • Baudwalker
    Baudwalker chrisd1888

    Posted

    Hi Chris

    I am not one to offer any form of diagnosis in a forum like this or ever for that matter.

    However, I can suggest that first you research TN for yourself and get a better understanding of it. There are no accurate examples of a 'normal' type as the problem manifests itself in so many different ways even the medicos have probelms with it.

    Get to know the issues concerned, then off to your GP and quiz him/her of his/her knowledge of the complaint. I had to lead my GP by the nose for the first few visits but he took the time to investigate it and upskill himself.

    Once it has been determined you (and your Dr) can start treating it.

    So far I have been referred tyo three different specialists, had 6 MRI scans, even more CT scans, as well as others. Been to Neurologists and ENT specialists and they have decided I need a PET scan now because all of the others cannot give an accurate result.

    The road to resolving this is long and frustrating so be prepared.

    It took me four different medication combinations before we got control of the pain. Offering what I am taking may have no bearing on what You should be taking. Mine changes weekly so I have to adjust the medications anyway.

    Good luck and as long as You know it an be controlled but you need the medicos to handle that part and not a generat forum.

    DRIVE YOUR GP and don't take what doesn't work as an answer.

    • chrisd1888
      chrisd1888 Baudwalker

      Posted

      Thanks for the advice i have a docs appointment tomorrow and ive found a specialist here in Glasgow so im going to push for a referral to see him. All the best.

       

  • heather30609
    heather30609 chrisd1888

    Posted

    I'm so sorry chrisd - your description of the pain takes me back to the first bout I had - I could only describe it as a firework going off in my face - the start was a tooth but then it flared all over the left side of my face - sooo painful.  Luckily I was on holiday in Turkey at the time and saw a dentist who realised quite quickly that it wasn't my teeth but most likely tn - so I saw my dentist when I got home who did the same diagnosis process, and referred me back to GP who was also very helpful.  They did refer me for a scan but we've managed to control it with medication (the GPs here seem to have a good protocol agreed with neurologists).  If it can't be settled in a couple of weeks, I suggest you ask for a referral to a neurologist who specialises in this kind of pain - they can assess what it is and then find the best management.  Good luck!
    • joanna66862
      joanna66862 chrisd1888

      Posted

      Hi - I started like you with toothache last April, then it started jumping between teeth, I realised (and admitted to myself) a few months after that it was more than simple toothache when I emptied my bag at work one day (in front of my employer who's a nurse) to fiind I had just about every painkiller available over the counter in there and I was takiing nearly all of them daily and still the pain was there!  a dentist confirmed it wasn't my teeth, the doctor the same day diagnosed TN, and today the Maxillofacial surgeon confirmed the mri as showing the offending blood vessel!  Now referred to a neurosurgeon. I also reacted to Carbamepazine, after 3 weeks it had affected my liver, now I'm also on Gabapentin 1500mg a day but shocks and toothache like pain coming through again so he said I can go up to 2700mg a day if needed.  There are some very knowledgable doctors out there, but my advice would be stop having more teeth taken out and ask to be referred to a Maxillofacial Surgeon as they are dentists who also hold degrees in medicine so have knowledge of both.  It's an extremely painful condition but until you reach the right dosage of your meds the pain will not go away no matter how many teeth you have pulled out or how strong your pain relief.  Good Luck, 
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