What do you have to do to get a diagnosis?

1

Hi

Just found this support group. I have been suffering severe facial pain for two years. It started on the left side and after a dozen visits to the dentists including fillings and crowns I was referred to an Oral surgeon. I was diagnosed with A typical facial pain and given Nortryptilline which was not effective and swithched to Amtryptilline by my GP which reduced the pain.

Two months after starting Amtryptilline I started to get pain on the right side which was very similar to dental abcess pain after several more visits to the dentist I had a back molar extracted on my request. The pain relented for about 4 weeks then returned it is now worse than ever. I have since taken Carbamazepine and am now on Gabapentin and awaiting an appointment at my local pain clinic. I have also been having accupuncture treatment but am not sure how effective it is sometimes it eases the pain sometimes it is worse.

The Oral surgeon discharged me in July 2012 and dismissed the pain on the right side and diagnosed a dental abcess which it obviously was not. The pain never occurs simultaneously and has been on the right side 95% of the time for the past 3 months and is always worse than on the left side of my face. Worryingly I am also starting to get pain in the back molars on the lower right and am not sure if this is a dental issue or this is spreading to the lower nerve branch.

I am desperate to get a diagnosis so I can consider possible treatments I have asked my GP twice to see a neurologist but they seem reluctant to refer me? I am currently off work and have no idea when I will be able to return. Stress , cold weather , sudden loud noises can be a trigger and I have changed my eating habits to avoid foods that require heavy chewing. I also have high blood pressure and have noticed on the rare occassions I forget my medication the pain returns quite quickly.

It is such a relief to find this support group as trying to explain the pain to people is very difficult and I was begining to think I was mad.

Rob

2

Hi Rob,



I had the same. Was diagnosed in 2002 fortunately after only a short run around between doctor and dentist.



Because its quite rare, GP’s tend not to have much experience of the condition, same as A+E departments … Sad but true.



It’s really important that you get a referral to a Consultant Neurologist as they do know the score. From the time you get to see him, the relief you can get from his prescribed medication, will be immediate. It also will open the door for referral to a surgeon who can discuss any options with you.



It’s a very individual complaint and not every cap fits all but to be speaking to people that actually understand TN and the pain, it’s half the battle and this alone makes you feel a bit better.



Push the GP and don’t take no crap. I know when you feel so horrid it’s hard to fight but do it. It will be worth it in the long run.



Good Luck



Yvonne

3

Rob there are others on here with much more knowledge of TN then me, but a big hug, your not going mad xxx

PS you will get a bigger response on the main message board as there are not many of us Brits on here!

4

Hi Rob.

Welcome to the site. I am fairly new myself but have got great support from everyone. Hope you get some relief soon

ANN

5

Hi Ann

Thanks for your support , today the pain is quite mild so far so fingers crossed.

Rob



anan said:

Hi Rob.

Welcome to the site. I am fairly new myself but have got great support from everyone. Hope you get some relief soon

ANN

6

Hi Yvonne

Thanks for your support I have been through every medication my GP can prescribe and am hoping to get something new when I eventually get into the pain clinic.

Your reply did make me smile not to take any crap from my GP it echoed what my wife has been saying for months. I am going to the GP tomorrow so will try and get a referal to a neurologist.

Rob


VonniePE said:

Hi Rob,

I had the same. Was diagnosed in 2002 fortunately after only a short run around between doctor and dentist.

Because its quite rare, GP's tend not to have much experience of the condition, same as A+E departments ..... Sad but true.

It's really important that you get a referral to a Consultant Neurologist as they do know the score. From the time you get to see him, the relief you can get from his prescribed medication, will be immediate. It also will open the door for referral to a surgeon who can discuss any options with you.

It's a very individual complaint and not every cap fits all but to be speaking to people that actually understand TN and the pain, it's half the battle and this alone makes you feel a bit better.

Push the GP and don't take no crap. I know when you feel so horrid it's hard to fight but do it. It will be worth it in the long run.

Good Luck

Yvonne
7



elstep said:

Rob there are others on here with much more knowledge of TN then me, but a big hug, your not going mad xxx

PS you will get a bigger response on the main message board as there are not many of us Brits on here!

8

Hi

Thanks for your support I am off to the doctors tomorrow to try and get a referal to a neurologist and to take no crap as advised by Yvonne.

Rob

Rob said:



elstep said:

Rob there are others on here with much more knowledge of TN then me, but a big hug, your not going mad xxx

PS you will get a bigger response on the main message board as there are not many of us Brits on here!

9

Hope you get your referal, it seems my gp although he states I have TN wants me to see a psychologist first ???

Push for your referal

10

Hi !!!
I am new to this site! I cannot tell you how good it is to hear people who are in my position
Your story sounds similar to mine to and fro from dentists electing to have teeth out ourselves,
I have been on medication for 3 months I am on carmazipine
I started on one tab 3 times a day then as pain got worse I gradually moved up to 2tab 3 times a day and now I am on 4 tab 4 times a day plus antitrytiline to sleep ( excuse spelling)
I am eager to find out if you have debated having surgery I am willing to do any thing to get this pain to go!!!
Air con in the car loud bangs and bending up and down can effect my pain .
I am getting married in dec and would really like to be off tablets by then which doc seems to think could happen but I’m not so sure

Emma

11

Emma it is possible that the meds will get the pain under control. Hope it all settles in time for your wedding. xx

12

Hi Rob,

Your story is so similar to mine, I had many dental visits and dental procedures that I'm sure was not needed. In the end I begged and pleaded with my dentist to extract the teeth that were hurting (rear molars), I know it sounds a bit hasty but I could not bare the pain any longer.

I would see my dentist on a frequent basis, then different emergency dentists over the months and they all would say the same thing, that they could not find any problem and that my teeth were all healthy. :(

It was my GP which diagnosed me with Trigeminal Neuralgia and treated me with Amitriptyline, then he moved me up to I think what was Carbamazepine (Tegretol). The Tegretol I could not handle the side-effects so I went back on the Amitriptyline which was manageable, but after the first 6 months the drug really had no effect.

My Dentist said its TN pain and also said I suffer from Hyper Sensitivity, so eating, drinking, tooth brushing, talking, walking etc could start the pain. Over a course of 5 years I had several tooth extractions where I had to sign an agreement that I agree to my Dentist extracting a healthy tooth as my Dentist professional opinion was that the tooth was healthy. With each extraction the pain would go after 2/3 weeks but then would come back again located to the next molar in line, at one point I did have 4-6 months with no pain after an extraction and I thought I was cured, but the pain just came back again and has stayed.

I too suffer the pain both sides, never at the same time but I get the constant pain on one side and can have electric shocks on the other-side at same time. My pain started on the left-side at first and then 1 year later it moved over to the right-side which was far worst, I dont understand why the pain is worst when its on the right-side, I pray and thank god when the pain is on the left-side, I am so thankful that its not the right.

Do you have the morning routine of waking up pain free for the first 10-20 minutes and then the pain hits, I worship those minutes and think this is what NORMAL is.

Its now been 7 years for me living with TN type 2, these last 6 months have been quite manageable since my last tooth extraction. Living your life around TN pain you get to learn what to do and what not to do and avoid certain situations just so you cope. I must be strong and stubborn like my father as at times I cant ever imagine I would get this far, having my wife and children around me makes me strong to fight this awful disease.

I find here in the UK there is not enough knowledge regarding TN pain, both my Neurologist and Maxi-facial clinic said STRESS is the cause.............. Hah! the TN pain is whats causing the stress I reply with. :(

The NHS just dishes out drugs to make you go away which I find the side-effects are to much, so I feel we are just left to suffer in silence.

Types of Trigeminal Neuralgia pain must be hereditary, I have also learnt that my Nan, Auntie and Uncle on my Mothers side suffer from Cluster Headaches.

Rob, you are not on your own, there are many on here that offer their help and support. You only have to log-on and speak with people who can understand what you are going through.

Good luck and best wishes.

Wes

13

Hi Wes ,

It's a mirror image, virtually everything on your message matches my story.

I need to update you on the latest I visited my local pain clinic in June and I have been diagnosed with A typical or Idiopathic facial pain on both sides. The pain consultant said my pain is different to TN and the only options are continued medication.

I am currently taking Gabapentin and have a treatment plan to move on to Duloxetine then as a last resort Oxycontin which is a morphine based product. I went to my GP about a month ago when I had a spike in activity and he advised me to reduce the Gabapentin to 1200 mg a day and start taking 25mg of Amtryptilline which I was on 18 months ago

Since going on to this combination I have not been pain free but the length of attacks has reduced. As an example I could have deep throbbing and aching on my right side for several days with intermittent spikes which were really bad. I now have spikes of take your breath away pain but not the constant aching and throbbing and I can cope with this better.

I too have been to the maxi facial clinic , numerous emergency dentist visits , 3 extractions , signing to extract a healthy tooth etc. When I go on holiday I look up local surgeries on google before setting off in case I need treatment which is absolutely crazy but I cannot help it.

I work with the public and due to the nature of my job I am involved with confrontational situations and am quite often verbally abused and threatened all of this leads to more stress and more pain. I enjoy my job as it is not always this way and I am not going to let this beat me.

I don't think you would be able to claim DLA for this condition but you could try. Fortunately my employer is quite sympathetic and having an Occupational Health unit is very helpful and they have confirmed I am covered under the Equalities Act which means I can request reasonable adjustments to my job role taking into account my condition. It may be something you want to look into with your employer.

I cannot agree more with your comment about your family, without the support of my wife and my son I think I would have gone mad. It has not been easy for them as I can be very distant and irritable during a severe attack , when at it's worst I try to focus on all the positives in my life to get me through.

Fingers crossed things stay manageable for you which is where I am presently.

Best wishes

Rob



Wes said:

Hi Rob,

Your story is so similar to mine, I had many dental visits and dental procedures that I'm sure was not needed. In the end I begged and pleaded with my dentist to extract the teeth that were hurting (rear molars), I know it sounds a bit hasty but I could not bare the pain any longer.

I would see my dentist on a frequent basis, then different emergency dentists over the months and they all would say the same thing, that they could not find any problem and that my teeth were all healthy. :(

It was my GP which diagnosed me with Trigeminal Neuralgia and treated me with Amitriptyline, then he moved me up to I think what was Carbamazepine (Tegretol). The Tegretol I could not handle the side-effects so I went back on the Amitriptyline which was manageable, but after the first 6 months the drug really had no effect.

My Dentist said its TN pain and also said I suffer from Hyper Sensitivity, so eating, drinking, tooth brushing, talking, walking etc could start the pain. Over a course of 5 years I had several tooth extractions where I had to sign an agreement that I agree to my Dentist extracting a healthy tooth as my Dentist professional opinion was that the tooth was healthy. With each extraction the pain would go after 2/3 weeks but then would come back again located to the next molar in line, at one point I did have 4-6 months with no pain after an extraction and I thought I was cured, but the pain just came back again and has stayed.

I too suffer the pain both sides, never at the same time but I get the constant pain on one side and can have electric shocks on the other-side at same time. My pain started on the left-side at first and then 1 year later it moved over to the right-side which was far worst, I dont understand why the pain is worst when its on the right-side, I pray and thank god when the pain is on the left-side, I am so thankful that its not the right.

Do you have the morning routine of waking up pain free for the first 10-20 minutes and then the pain hits, I worship those minutes and think this is what NORMAL is.

Its now been 7 years for me living with TN type 2, these last 6 months have been quite manageable since my last tooth extraction. Living your life around TN pain you get to learn what to do and what not to do and avoid certain situations just so you cope. I must be strong and stubborn like my father as at times I cant ever imagine I would get this far, having my wife and children around me makes me strong to fight this awful disease.

I find here in the UK there is not enough knowledge regarding TN pain, both my Neurologist and Maxi-facial clinic said STRESS is the cause.............. Hah! the TN pain is whats causing the stress I reply with. :(

The NHS just dishes out drugs to make you go away which I find the side-effects are to much, so I feel we are just left to suffer in silence.

Types of Trigeminal Neuralgia pain must be hereditary, I have also learnt that my Nan, Auntie and Uncle on my Mothers side suffer from Cluster Headaches.

Rob, you are not on your own, there are many on here that offer their help and support. You only have to log-on and speak with people who can understand what you are going through.

Good luck and best wishes.

Wes

14

Hi Folks,

I've been around the block already! I'm due for my fourth follow-up appointment at the Neurosurgeon, so don't take the crap, referred to so eloquently before. I didn't, and I'm in less pain, but not relieved yet.

I have Geniculate Neuralgia, the Ice Pick in the ear condition. Pain is my partner! I'm on Tegretol and Pregabalin, but also wear Opiate patches weekly ( Butrans Transdermal Patch). These are scheduled drugs. Now, when I get breakthrough pain, we dial 999, and my missus gives them my papers from the previous call-out. They give me Entonox gas, and whoopppeee. . . The pain is gone. I mean GONE. That's until I come off the high from the gas and air. But then the pain levels are down to what I live with every day, and the high that I'm in all the time from the cocktail I take every day.

I can't believe the quantity of Tegretol I read above?? Please read the paper that comes in the meds box; It's vital that you don't overdose on the meds. In my opinion and what has worked for me, is a variation of meds. That's why I'm also on Pregabalin as well as the opiate patches. I can't concentrate enough to drive, but my pain level is down to appreciable 3 or 4 out of 10.

I've read that Geniculate Neuralgia is so rare in the UK, that I am one of 0.0004% who have this condition. Read up on this and other websites, and control your break-through pain by avoiding the triggers, if you know them. After 4 years, I've given up looking for mine... We have to help ourselves, it's the only way.

I hope to have shed some light around.

Saint Paul