Hi My name is Westley and I'm from the UK, age 40 married with two daughters.
I've been a sufferer of Neuralgia type 2 for what must be 5 years, since early 2008. I get the constant ache all day everyday, some days I am pain free which I treasure these days so so much but usually the pain starts in the mornings and stays with me all day until I go to bed at night.
I have had several tooth extractions due to the chronic pain, with every extraction has bought pain relief for a short time. I get the pain both sides but never at the same time, eating, drinking and brushing my teeth starts the pain off.
The pain started on the left side and then moved over to the right. The pain seems to lock itself in on the left side at first for about 1 year and then moved over to the right side and has stayed there for 3 whole years (pain is far worst on the right side).
I did have 1 whole year pain free which was last year, this was after the last extraction. But now the pain has come back again, this time where it originally started (back on the left side). The pain is like a living hell, I cant even imagine how I have copped for these past 5 years.
When the pain powers up at its worst, the pain is always located to a tooth, around my eye and to the front of my forehead. My Dentist has been very understanding but she really does not want to extract anymore of my teeth, I have lost so many of my rear molars which has reduced the pain slightly, but still I cannot believe I am still suffering after all this time.
What sort of disease is this, the pain is unbearable. I have had a CT scan which they found nothing wrong, I have also seen a Neurologist which I thought was a waste of time as the Doctor put the pain down to stress.
I am adamant that the pain is Dental related.
I do not know where to turn next.
You poor thing.
My first point is that u need to be assertive with your doctor and challenge her, in whatever it takes, that the pain is real and is not just symptoms of stress. It must be treated properly.
Talk to PALS who are first point of complaints about doctors. Once your doctor takes u seriously, half the battle is won. U then need to ask your doctor to refer u to pain clinic urgently, who will decide on treatment.
Hi amol, thank you for the information.
I have booked an appointment with my GP for Thursday, so we will see what he has to say.
While I was speaking with my Dentist last week, my Dentist explained that the pain maybe TN but was also looking along the lines of tooth sensitivity, I think she mentioned the word Pulpitis. Is that something you have heard of before as she was stating the tooth sensitivity maybe causing the constant Neuralgic pain.
My Dentist said if she does a root canal on this tooth, even though there is no cavity, she said it should stop the pain. If the tooth is suffering from irreversible Pulpitis, then this would explain all the tooth sensitivity and neuralgic pain........... she seems to think I have very sensitive teeth.................
Do I need to ask my Dentist or GP to refer me to a Endodontic specialist, would they be able to diagnosed Pulpitis ?
Kind Regards.
Wes
amol said:
You poor thing.
My first point is that u need to be assertive with your doctor and challenge her, in whatever it takes, that the pain is real and is not just symptoms of stress. It must be treated properly.
Talk to PALS who are first point of complaints about doctors. Once your doctor takes u seriously, half the battle is won. U then need to ask your doctor to refer u to pain clinic urgently, who will decide on treatment.
Hi Wes,
It is important to get accurate diagnosis. Referral to any specialist is good. I have notheardofpulpits. Umustpersevere with yourgp,even if itmeansthatuhaveto go and see your doctor everyday. Makethemunderstand that ur in pain.
Nina
Dallas said:
Hi amol, thank you for the information.
I have booked an appointment with my GP for Thursday, so we will see what he has to say.
While I was speaking with my Dentist last week, my Dentist explained that the pain maybe TN but was also looking along the lines of tooth sensitivity, I think she mentioned the word Pulpitis. Is that something you have heard of before as she was stating the tooth sensitivity maybe causing the constant Neuralgic pain.
My Dentist said if she does a root canal on this tooth, even though there is no cavity, she said it should stop the pain. If the tooth is suffering from irreversible Pulpitis, then this would explain all the tooth sensitivity and neuralgic pain........... she seems to think I have very sensitive teeth.................
Do I need to ask my Dentist or GP to refer me to a Endodontic specialist, would they be able to diagnosed Pulpitis ?
Kind Regards.
Wes
amol said:You poor thing.
My first point is that u need to be assertive with your doctor and challenge her, in whatever it takes, that the pain is real and is not just symptoms of stress. It must be treated properly.
Talk to PALS who are first point of complaints about doctors. Once your doctor takes u seriously, half the battle is won. U then need to ask your doctor to refer u to pain clinic urgently, who will decide on treatment.
I've done a search and it seems to make sense, see what you think, can anyone relate to this.....
amol said:
Hi Wes,
It is important to get accurate diagnosis. Referral to any specialist is good. I have notheardofpulpits. Umustpersevere with yourgp,even if itmeansthatuhaveto go and see your doctor everyday. Makethemunderstand that ur in pain.
Nina
Dallas said:Hi amol, thank you for the information.
I have booked an appointment with my GP for Thursday, so we will see what he has to say.
While I was speaking with my Dentist last week, my Dentist explained that the pain maybe TN but was also looking along the lines of tooth sensitivity, I think she mentioned the word Pulpitis. Is that something you have heard of before as she was stating the tooth sensitivity maybe causing the constant Neuralgic pain.
My Dentist said if she does a root canal on this tooth, even though there is no cavity, she said it should stop the pain. If the tooth is suffering from irreversible Pulpitis, then this would explain all the tooth sensitivity and neuralgic pain........... she seems to think I have very sensitive teeth.................
Do I need to ask my Dentist or GP to refer me to a Endodontic specialist, would they be able to diagnosed Pulpitis ?
Kind Regards.
Wes
amol said:You poor thing.
My first point is that u need to be assertive with your doctor and challenge her, in whatever it takes, that the pain is real and is not just symptoms of stress. It must be treated properly.
Talk to PALS who are first point of complaints about doctors. Once your doctor takes u seriously, half the battle is won. U then need to ask your doctor to refer u to pain clinic urgently, who will decide on treatment.
Thank you guys for all your support, it is very much appreciated.
I saw my GP today which was a total waste of time, I also booked in at my Dentist as an emergency as the pain was unbearable this afternoon.
My GP has put me on Amitriptyline again and also Co-amoxiclav which is a antibiotic, he has said I may have an underlying infection................ lol, bloody long 5 year infection. I ask my GP could he send me to a Neurologist again or to the Maxi-Facial clinic, he said its not really worth doing as my last results came back ok, this was 2011. He just told be to see how the Amitriptyline and antibiotic work.......
I went to see my Dentist today as the pain is getting unbearable, another examination to be told my teeth are healthy. But the cold test reveals I have two teeth which are Hypersensitive, anything cold, sweet foods start of the neuralgic pain which then last for days. My understanding is that normally people only suffer short sharp pain with tooth sensitivity which soon subsides after the cold substance is taken away (such as ice-cream)..... so why does my pain last for bloody days, months and years........? I'm so going crazy...... :(
My Dentist prescribed me 4 tubes of Duraphat Toothpaste and said if the pain doesn't go or if it gets worst lol, to come back and they will refer me to the Maxi-Facial clinic again (Yippee!), told me doesn't really want to take another tooth out incase the TN pain moves to the next tooth like it has been doing................. I replied with no tooth no pain, the Neuralgic pain is alot weaker when the tooth isn't there, can I have all my teeth out please ? .............. need to keep them he says. :(
So I am still in pain, I've been given the same drugs that I had 2 years ago, they took the edge of things for about 3 months and then the pain just got worst again..................... and I don't like how the Amitriptyline makes me feel.
The UK NHS doesn't work, they would be better off giving me a gun to shoot myself. I know that sounds awful but thats how this TN makes you feel......................... :( ................ I'm so sorry to moan, please forgive me.
Omg! I was on amitriptiline, it did not do any good for me. U must insist to see pain clinic and a neurologist.
My GP just said that the Neurologist results from last time came back nothing wrong, he said they would only prescribe me either Amitriptyline or Tegratol...................... he said I would be better going back to my Dentist...... lol
I went back to my Dentist 2 hours after leaving my GP this morning, what a waste of time, nobody wants to do anything ................... why! why! why ?
You poor thing. I can relate to you. Here in uK we have something called PALS who we can ask to intervene if we are not happy with our GP. It does not have to be aggressive. It can be very civilised. You must talk to them and insist on seeing a different neurologist. What your previous neurologist said is that you do not have a brain tumour, TU that does not mean that you have something else. You need to know accurate and proper diagnosis. Ask them to confirm diagnosis. You also go and cry to your GP and insist that you are referred to a pain clinic.
Pain clinic can help you with concoction of medication and injections at points if you need them.
Thank you amol, I think I will contact the PALS service and make a complaint regarding my GP, I mean its been 5 years my GP has known I suffer this awful pain and little has been done.
This means more stress and Anxiety I suppose, this makes the TN worst for me................I try and avoid stress, but its impossible, its a vicious circle
Tell PALS that you want to get better. U r in pain. Tell them u do not think complaints are stressful for u but no-one seems to listen about your pain.
Whats upsetting about all this, I have lost several teeth where really I shouldn't of needed to. Mostly my thought as I would beg my Dentist to extract another tooth, however having lost so many teeth the TN is slightly less painful because the teeth aren't there to hurt.
What also puzzles me is when I saw the Neurologist in 2009, all he got me to do was to move my arms and legs (simple little exercises)............... he wasn't interested in my head-pain. All he told me was its stress, avoid stress and not to have anymore teeth out. He did not prescribe me any medication, just said keep taking the Amitriptyline that my GP had prescribed.
It was the Maxi-Facial Clinic referral my Dentist refereed me to that carried out the CT scan, nothing was found and all I was told was to avoid stress and not to have anymore teeth out.
The Duty of Care has been nonexistent......