Hi I'm new here,

General General TN & GPN (Old Site)
1

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.

2

http://www.livingwithtn.org/forum/topics/any-one-ever-had-surgery-o...

a couple of us replied to you on another's thread that you were on! just click above link after you read below.

You need a neurologist that has TN patients!! CAT scan / Most MRIs do not show it --- it's the symptoms that prove the disease -- are you on any meds??

Another great start besides the resources we gave in the other thread link --- our "bible" here is the book "Striking Back" by Dr. Ken Casey-- He did my surgery because the med side effects sucked my life out of me! As many do here.

There is another web site the facial pain association - either on here or there there is a video where dr. casey talks about your type face pain --- he has worked in TN field since 1970s!

The more you read, learn, ask -- the faster you can get to feeling better in many cases..... we are a rare bird and the right Dr. is the key to a different life.

Keep Posting!

3

Hi Dallas,
Welcome to the group and sorry you need to be here.

KC dancer is right, you need to find the ‘right’ neurologist because it can make such a difference to the treatment options.
I changed neuro’s this year after getting a recommendation from someone on this site and it has really helped.

I also found the book ‘striking back’ invaluable in helping me to understand TN.

Best wishes in finding relief from the pain.

Hugs
Trish

4

Thanks KC Dancer & Trish, thank you for your support. I have booked an appointment with my GP for this Thursday. I've not seen my GP not since the pain went away just over 1 year ago. Lets just hope he will refer me to a good specialist so I can gets some answers, I'm afraid my GP will just say try the Amitriptyline drug again, I really do not like taking strong medications as the side effects seem to be worst than the original complaint. I just try and put up with the pain, don't ask me how I do as I don't even know myself, I just pray for the pain free days to come and enjoy life I have with my family.

5

I would suggest you get a new GP! Can you switch? Do you need a referral for a neurologist?

Did you look at the MVD link mimi gave you and look at the UK groups?

It really can get better - you should not HAVE to put up with the pain!

6

Hi yes thank you, The MVD all looks quite frightening.

My GP did mention that surgery would be the last resort, he didn't want to take that root just yet, neither did I really. He explained that the surgery does not always work and sometimes can make matters worst....... is this true ?

Are they groups here in the UK, when I do a Google search it brings me here to this site and another group which is in America. :)

7

Dallas, have you ever been prescribed and or had a positive response to anti convulscents ? If so then it is likely TN, please remember I am not medically trained, this is just on observation.

8

There is, but it is not free like this group.

Dallas said:

Hi yes thank you, The MVD all looks quite frightening.

My GP did mention that surgery would be the last resort, he didn't want to take that root just yet, neither did I really. He explained that the surgery does not always work and sometimes can make matters worst....... is this true ?

Are they groups here in the UK, when I do a Google search it brings me here to this site and another group which is in America. :)

9

Hi Jackie, no I don't think I have, my GP just said its Neuralgia and gave me a nerve drug called Amitriptyline.

I did use the drug for about 3 months, it did help slightly but not enough as the pain was still bad at times. I decided to stop the drug as the side effects were awful.

My GP tried me on another drug (sorry I cant member what is was called), but the drug was so unbearable, I couldn't even stand-up as my head was so bad..... :(

Jackie said:

Dallas, have you ever been prescribed and or had a positive response to anti convulscents ? If so then it is likely TN, please remember I am not medically trained, this is just on observation.

10

Turn to another doctor--one who has experience with TN patients. You need a particular kind of MRI for the doctors to see if there is any pressure on the trigeminal nerve. It is not unusual for there to be no obvious pressure. It also seems very difficult to find a physician you like. We have all been through the lengthy process of finding someone, waiting for an appointment and discovering you are still dealing with a robot.

I was certain my pain was dental related. Now I know better. When I began taking neurotin, I couldn't believe how I felt. It took a while to adjust, but for the first time in years, my teeth didn't ache and throb.

Read more and learn more about neuropathic facial pain on this site and on the FPA site and listen to your dentist.

I hope you find some answers sooner, if not now. :-)

Marymo

11

hello..and i am really sorry about your condition.but i am not really sure of TN shifting sides.

12

I have it on both sides but never at the same time.

It started on the left side and lasted about one year and then one day I felt the pain drain from the left and it moved over to the right, within seconds the pain shifted and stayed on the right side for 3 whole years.

Can this happen with TN ?

shreeraj said:

hello..and i am really sorry about your condition.but i am not really sure of TN shifting sides.

13

sounds like u have ATN I have pain on both sides too one is worth then the other i have had 5 teeth extracted I also have it I know its horrible are you on any meds?

14

http://www.livingwithtn.org/group/unitedkingdommembers

There is the link to join up on here with UK members for doctors, etc...!

When I had MVD by long time specialist -- he said that MVD is in Most Cases like this:

Scale of 1-10

A 1 out of 10 for cranial surgery = MVD

A 10 scale of cranial surgery = brain tumor, complicated growths in the brain, bleeding of the brain, etc.

Some of the statistics are really good in our favor. But you won't know what it would do for you unless you visit a TN neurosurgeon. Or start with an understanding neurologist---

your dentists is not your best hope now. Please be glad that they stopped pulling teeth, some will keep on for the money! If I had a dollar for every posting here of people who have had 4+ teeth pulled for no reason - I could retire! The best you could ask from them is to prescribe some lidocaine mouthwash to numb your mouth nerve endings while you look for a specialist.

I don't take this lightly and it took almost a year for me to research and come to terms with MVD -- Having a baby was worse that that for me !! LOL

TN is progressive - IF you are a candidate for MVD, the new stats are best to do it within the first 3-7 years.

Coming here and even sharing and learning is a great start! Learning about your disorder can get you relief faster!

15

Hi, I was on Amitriptyline 2 years ago but I stopped it as I did not like the side effects. My GP did try me on something else which again made me like a zombie, I cant remember what it was called.

I just put up with the pain now, I've had it for 5 years and I think I must be getting used to it. I know that doesn't sound correct but the pain just seems to be a part of me, its like my body has accepted it.

But still I cant keep putting up with this pain, its beginning to get me down. I fight it as much as I can and I look forward to the pain free days. I get some days with no pain but it soon comes back either with brushing my teeth or eating.

What is ATN ?

Thank you for your help,

Wes :)



jstagrl29 said:

sounds like u have ATN I have pain on both sides too one is worth then the other i have had 5 teeth extracted I also have it I know its horrible are you on any meds?

16

Thank you for the help Kc Dancer, I just wish I could believe its not my teeth.

......... but! if I could have all my teeth extracted tomorrow, I think I would............. :(

Kc Dancer Kc said:

http://www.livingwithtn.org/group/unitedkingdommembers

There is the link to join up on here with UK members for doctors, etc...!

When I had MVD by long time specialist -- he said that MVD is in Most Cases like this:

Scale of 1-10

A 1 out of 10 for cranial surgery = MVD

A 10 scale of cranial surgery = brain tumor, complicated growths in the brain, bleeding of the brain, etc.

Some of the statistics are really good in our favor. But you won't know what it would do for you unless you visit a TN neurosurgeon. Or start with an understanding neurologist---

your dentists is not your best hope now. Please be glad that they stopped pulling teeth, some will keep on for the money! If I had a dollar for every posting here of people who have had 4+ teeth pulled for no reason - I could retire! The best you could ask from them is to prescribe some lidocaine mouthwash to numb your mouth nerve endings while you look for a specialist.

I don't take this lightly and it took almost a year for me to research and come to terms with MVD -- Having a baby was worse that that for me !! LOL

TN is progressive - IF you are a candidate for MVD, the new stats are best to do it within the first 3-7 years.

Coming here and even sharing and learning is a great start! Learning about your disorder can get you relief faster!

17

UPDATE! I have just read about ATN, Thank you jstagr29, sounds exactly the same as what I am suffering from.

Symptoms of ATN may overlap those of a dental problem called "atypical odontalgia" [literal meaning "unusual tooth pain"], with aching, burning, or stabs of pain localized to one or more teeth and adjacent jaw. The pain may seem to shift from one tooth to the next, after root canals or extractions. In desperate efforts to alleviate pain, some patients undergo multiple (but unneeded) root canals or extractions, even in the absence of suggestive X-ray evidence of dental abscess.

Dallas said:

Hi, I was on Amitriptyline 2 years ago but I stopped it as I did not like the side effects. My GP did try me on something else which again made me like a zombie, I cant remember what it was called.

I just put up with the pain now, I've had it for 5 years and I think I must be getting used to it. I know that doesn't sound correct but the pain just seems to be a part of me, its like my body has accepted it.

But still I cant keep putting up with this pain, its beginning to get me down. I fight it as much as I can and I look forward to the pain free days. I get some days with no pain but it soon comes back either with brushing my teeth or eating.

What is ATN ?

Thank you for your help,

Wes :)



jstagrl29 said:

sounds like u have ATN I have pain on both sides too one is worth then the other i have had 5 teeth extracted I also have it I know its horrible are you on any meds?

18

TN can definitely be on both sides.