Any dentists? Please help me!

[Peanut Gallery]

My condolences OP! - nagging pain is not good at all.

I really hope you find a solution, sorry, unable to help any more than offer an ibruprofen..

Also spare a thought for the guy who had a really sore hand (or was it foot?) the docs said there was nothing wrong, he used an axe and removed said appendage, and yup, it still hurt..

[rickh]

Good morning Matt, I have just read your thread and would say as with a few of the others that you have trigeminal neuralgia, I know exactly how this must make you feel and how it can ruin your life because my mum has it.

Please don't hesitate to get in touch via DM as I have a suggestion and a treatment that mum has done and would love to help you get your life back. Finding this professor and his treatment has changed her life and now although she still takes some of the medicines you named they are tiny dosages but still daily, He is based in Reading and an absolute legend!!

[cringle]

Hi OP, sorry to hear you're still suffering with this issue. Out of interest, have you had any CT scans of the jaws/teeth at any stage?

[cringle]

Hi OP, sorry to hear you're still suffering with this issue. Out of interest, have you had any CT scans of the jaws/teeth at any stage?

[mattknight1984]

rickh said:

Good morning Matt, I have just read your thread and would say as with a few of the others that you have trigeminal neuralgia, I know exactly how this must make you feel and how it can ruin your life because my mum has it.

Please don't hesitate to get in touch via DM as I have a suggestion and a treatment that mum has done and would love to help you get your life back. Finding this professor and his treatment has changed her life and now although she still takes some of the medicines you named they are tiny dosages but still daily, He is based in Reading and an absolute legend!!

Rickh, thanks very much for taking the time to reply. I'll try anything, thanks for your offer I'll DM you now.

[mattknight1984]

cringle said:

Hi OP, sorry to hear you're still suffering with this issue. Out of interest, have you had any CT scans of the jaws/teeth at any stage?

Late last year I had a full head MRI scan, no CT though. Didn't show anything untoward.

[MSBravo]

Hi Matt.

I have read PH for many years, and remember reading this thread a few months ago.

I'm a 4th year medical student and was just doing some lectures on trigeminal autonomic cephalalgias (such as cluster headaches) and remember reading this thread, and the almost unebarable agony you mentioned.

Anyway, there was a line from my lecturer which struck a chord, and I feel duty bound to sign up and & paste it in here:

"People will scream in pain with TACs, bang their heads against walls, tear their hair out etc. The demonstrations of pain can be so melodramatic when they are there and can go away so quickly that nurses often think that the patient is putting it on. The pain is real so you need to treat it seriously. The pain can be in the cheek or jaw and patients are often treated for sinusitis, trigeminal neuralgia and toothache before coming to neurology."

I have no idea if you have been seen by a neurologist, but like I said, thought I would post this here in the hope that you can find some relief for what sounds like a truly horrific experience. (See a headache and facial pain specialist.)

All the best.
Peter.

[mattknight1984]

MSBravo said:

Hi Matt.

I have read PH for many years, and remember reading this thread a few months ago.

I'm a 4th year medical student and was just doing some lectures on trigeminal autonomic cephalalgias (such as cluster headaches) and remember reading this thread, and the almost unebarable agony you mentioned.

Anyway, there was a line from my lecturer which struck a chord, and I feel duty bound to sign up and & paste it in here:

"People will scream in pain with TACs, bang their heads against walls, tear their hair out etc. The demonstrations of pain can be so melodramatic when they are there and can go away so quickly that nurses often think that the patient is putting it on. The pain is real so you need to treat it seriously. The pain can be in the cheek or jaw and patients are often treated for sinusitis, trigeminal neuralgia and toothache before coming to neurology."

I have no idea if you have been seen by a neurologist, but like I said, thought I would post this here in the hope that you can find some relief for what sounds like a truly horrific experience. (See a headache and facial pain specialist.)

All the best.
Peter.

Peter, thanks so much for remembering my post - not only that but signing up just to comment on it. There are still nice people out there . Sounds mad, but I've had more help from people Ive never met than my own GP/multiple dentists and hospital referrals.

I am still suffering with this, although do appear to have periods of less pain occasionally. Still can't identify a trigger and this can make work etc difficult at times. I'm grateful to have a supportive wife and 2 young children, on days when I really struggle to cope I just think of them and the fact they need me around.

I will investigate a headache and facial pain specialist. Is there any reason why this wouldn't have been suggested by my GP? Aside from the scans, the only other hospital referral has been to a consultant specialising in pain and anaesthesia. These appointments have very much concentrated on living with the pain, attending pain management classes etc.

Thanks again, Matt.

[MSBravo]

mattknight1984 said:

Peter, thanks so much for remembering my post - not only that but signing up just to comment on it. There are still nice people out there . Sounds mad, but I've had more help from people Ive never met than my own GP/multiple dentists and hospital referrals.

I am still suffering with this, although do appear to have periods of less pain occasionally. Still can't identify a trigger and this can make work etc difficult at times. I'm grateful to have a supportive wife and 2 young children, on days when I really struggle to cope I just think of them and the fact they need me around.

I will investigate a headache and facial pain specialist. Is there any reason why this wouldn't have been suggested by my GP? Aside from the scans, the only other hospital referral has been to a consultant specialising in pain and anaesthesia. These appointments have very much concentrated on living with the pain, attending pain management classes etc.

Thanks again, Matt.

Hi Matt.

Not a problem at all, just hope you can see someone who can get to the bottom of it.

It is likely because your GP has never seen complex facial pain before, which is not to their discredit - it is very rare. To put it in to context, here is a photo of the facial nerves - quite a lot of room for stuff to go wrong!



But absolutely - do get referred to a consultant neurologist at a regional centre, who deals with facial pain and headaches as their primary job. Hopefully you can get to the bottom of this once and for all. I'm at a tertiary hospital (QE in Birmingham) which is huge, and has all of the super-referrals (i.e. regional and national referrals) for every speciality. If you want my consultant's name, do PM me and I can send it over.

Let me know if you need further advice & keep us updated how you get on!

Best,
Peter

[popeyewhite]

Trigeminal Neuralgia and Glossopharyngeal Neuralgia both can cause intense face pain. My GN is treated with Gabapentin. A decent GP should be capable of diagnosis.