What Sort of Face Pain is this?

I suffered a Classic Attack of TN 7 months ago, brought on I believe by trauma to the face which effected my nerve and then triggered through my sensitive tooth.

TN stopped after medication and I reduced slowly and stopped taking it.

I have been left with a tingling/aching tooth and face ache which comes and goes through out the day, temple, cheek, eye, around the ear and jaw is all effected but only an ache not a pain. Different areas at different times and sometimes none at all.

I dont need pain relief for this, but I want to know what it is?

Is it post trauma from the nerve?

Is it a sign that the TN is slowly coming back?

Is it A typical TN?

Is it Neuropathic Pain?

I did try using the face pain tab but had no success.

If you had discrete trauma to the face, then many neurologist would call the symptoms you describe "symptomatic trigeminal neuropathy" . The tingling and aching throughout our face seems to have elements in common with a symptom commonly called "parasthesia". It can be thought of as a sort of lingering consequence of the original trauma, due to nerve damage. As far as I know, nobody can tell you at this stage whether these symptoms will develop further or recede over time. TN and ATN in the early stages are tricky that way, and sometimes display remissions of months or even years before coming back at you again.

If the ache develops further to a level that becomes seriously bothering, then I'd suggest that you gain referral to a neurologist for complete workup and a pain management plan.

Go in Peace and Power

Red Lawhern, Ph.D.,

Resident Research Analyst, LwTN

Thanks Red. I will let you know how I get on

Red is there a test to tell in there is something pressing on the nerve? Thanks

Richard A. “Red” Lawhern said:

If you had discrete trauma to the face, then many neurologist would call the symptoms you describe “symptomatic trigeminal neuropathy” . The tingling and aching throughout our face seems to have elements in common with a symptom commonly called “parasthesia”. It can be thought of as a sort of lingering consequence of the original trauma, due to nerve damage. As far as I know, nobody can tell you at this stage whether these symptoms will develop further or recede over time. TN and ATN in the early stages are tricky that way, and sometimes display remissions of months or even years before coming back at you again.

If the ache develops further to a level that becomes seriously bothering, then I’d suggest that you gain referral to a neurologist for complete workup and a pain management plan.

Go in Peace and Power

Red Lawhern, Ph.D.,

Resident Research Analyst, LwTN

Sorry if

elstep said:

Thanks Red. I will let you know how I get on

Dean: 0.66 mm thin-slice FIESTA MRI with and without contrast agent and with post-procedure 3-D processing is the gold standard for facial pain patients. However, be advised that seeing vascular loops impinging on the nerve is not by itself conclusive evidence of TN, though it will support a diagnosis arrived at from your pain presentation and a thorough medical history.

Regards, Red

dean643 said:

Red is there a test to tell in there is something pressing on the nerve? Thanks


Thank you so much red… Dean

Richard A. “Red” Lawhern said:

Dean: 0.66 mm thin-slice FIESTA MRI with and without contrast agent and with post-procedure 3-D processing is the gold standard for facial pain patients. However, be advised that seeing vascular loops impinging on the nerve is not by itself conclusive evidence of TN, though it will support a diagnosis arrived at from your pain presentation and a thorough medical history.

Regards, Red

dean643 said:

Red is there a test to tell in there is something pressing on the nerve? Thanks


Red is it possible that the trauma I received to the nerve could now result in a vascular loop now impinging on it? I think I did read somewhere that a whiplash injury could cause this to happen, although mine was not a whiplash injury,the facial trauma did cause trauma to the nerve as I felt the shock to the nerve at the time.

If my trauma has resulted in a vascular loop impinging on the nerve, would this change anything? would the sensations I am feeling in my face still be likely to be thought of as trigeminal neuropathy resulting from my injury by most neurologists?

Also does anyone know how common it is to obtain a Gold Standard MRI on the NHS in the UK? after one attack of TN? Do you have to wait for the pain to become chronic before it is agreed?

Red, sorry the above should have read rather then is it possible, because I guess anything is possible, but how likely or common is it that a discrete injury would cause a vascular loop to occur?

Elstep, TN emerges after whiplash injury often enough for such injuries to be recognized by a lot of neurologists and neurosurgeons as one of the causes of the disorder. Generally speaking, vascular loops occur in many more people than those who present with severe pain. The theory or speculation is that a whiplash injury may bring the loops tighter on the nerve due to extension and twisting of the spinal column.

Regardless of source, if you have volleys of sharp stabs of electric shock pain, most neurosurgeons will tell you that your odds of a successful MVD outcome are higher than if your pain is more of the character of constant burning, boring, aching pain that doesn't let up. And in both cases, the surgeons have less resistance to using the procedure if a vascular loop or loops are obvious in MRI imagery.

The FIESTA MRI procedure is available in the UK (not called "Gold Standard" as a title). But I think we need Jackie and other UK patients to weigh in concerning the willingness of the NHS physicians to direct that the procedure be used. Even in the US, not all MRI centers are set up to do it. And access to precision MRI services of all sorts is notoriously untimely in many areas of the UK.

I'll ask Jackie to look in on the discussion...

Regards and best,

Red

Red is lyrica a good choice for ATn? I was on tegetol for a week made me sick, should I have gave it a chance and stuck it out would I have felt better? Im also taking pamelor at nite with the lyrica, the pain is dull but always there… Thanks you red

Richard A. “Red” Lawhern said:

Dean: 0.66 mm thin-slice FIESTA MRI with and without contrast agent and with post-procedure 3-D processing is the gold standard for facial pain patients. However, be advised that seeing vascular loops impinging on the nerve is not by itself conclusive evidence of TN, though it will support a diagnosis arrived at from your pain presentation and a thorough medical history.

Regards, Red

dean643 said:

Red is there a test to tell in there is something pressing on the nerve? Thanks


Dean, Lyrica helps some ATN patients, but it's not usually considered the primary drug of choice. It's used more often in Fibromyalgia.

If you were a family member of mine, I'd advise you to try Tegretol at a gradually increasing dose for at least 4-8 weeks. Many patients acclimate to the drug. And for those whom it doesn't help, the second line of approach is often the tricyclic antidepressant meds like Amitriptyline and Nortriptyline (plus 8-10 others). In both cases, you should be monitored for depression and for blood changes (the latter, every 30-60 days as you titrate up on dose). There is an FDA notice in circulation warning physicians that all of the anti-convulsant drugs are associated with an increased risk of clinical depression and suicidal thinking. It's a manageable risk, but not trivial.

Regards, Red

Thank you red. I’m gonna talk with my doc on thursday, I guess I’m gonna need to weed off the lyrica first right? And I want to have that test you told me about to see if there is something pressing on my nerve… If it shows something, I’m gonna have the mvd, I’ve never took Meds before this, it’s making me feel sick and beat most of the time, I was always in the gym for the past 20 years, don’t know what to do? Thanks you very much for you’re help… Dean

Richard A. “Red” Lawhern said:

Dean, Lyrica helps some ATN patients, but it’s not usually considered the primary drug of choice. It’s used more often in Fibromyalgia.

If you were a family member of mine, I’d advise you to try Tegretol at a gradually increasing dose for at least 4-8 weeks. Many patients acclimate to the drug. And for those whom it doesn’t help, the second line of approach is often the tricyclic antidepressant meds like Amitriptyline and Nortriptyline (plus 8-10 others). In both cases, you should be monitored for depression and for blood changes (the latter, every 30-60 days as you titrate up on dose). There is an FDA notice in circulation warning physicians that all of the anti-convulsant drugs are associated with an increased risk of clinical depression and suicidal thinking. It’s a manageable risk, but not trivial.

Regards, Red

Your neurologist will naturally advise you and prescribe for you. When you talk with yours, please remember that although I am technically trained and have talked with thousands of face pain patients over the past 16 years, I am not a medical doctor. I must defer to the opinions and experience of those who are. Be aware also that MVD is a very expensive procedure. You'll need good medical insurance,and your company may fight with you over the $100K average expense.

Considering exercise, avenues to explore may include walking, Yoga and Tai Chi. Patient ability to endure running or other impact exercise is very individual and variable. This is also worth talking to your doc about.

I wish you well,

Red

Red went to the gym had a nice workout, felt fine when I was there no pain but a few hours later pain was up there a bit, was that caused by my workout? I mean if the gym was the cause wouldn’t I have had pain while I was working out? Thanks

Richard A. “Red” Lawhern said:

Your neurologist will naturally advise you and prescribe for you. When you talk with yours, please remember that although I am technically trained and have talked with thousands of face pain patients over the past 16 years, I am not a medical doctor. I must defer to the opinions and experience of those who are. Be aware also that MVD is a very expensive procedure. You’ll need good medical insurance,and your company may fight with you over the $100K average expense.

Considering exercise, avenues to explore may include walking, Yoga and Tai Chi. Patient ability to endure running or other impact exercise is very individual and variable. This is also worth talking to your doc about.

I wish you well,

Red

Dean

With regards to Amitriptyline, I found it useful when I was unable to get to sleep because of face pain when laying on my side at night in bed. It eased the pain a lot, also at the time glasses hurt my face and again it helped with that, I took 20 gms each night. After 6 weeks I noticed i was dropping off to sleep without taking it so slowly came off it. My dull face ache is back but not at bad as it was so I am keeping of it for now, but know it is there if I need it.

Red

After 5 weeks of Carbagen and coming down to a low dose of it without any side effects, I began to have night fevers.

My Mattress was completely soaked and I would have to change beds. I also had headaches and no energy, and when going to the toilet felt like the top of my head was coming off, and had to put my hands on my scalp because of the sensation I was having. Lots of mouth ulcers. After a short walk I had to sit down and put my head in my hands. I did not think it had anything to do with the Carbagen and went to my doctor. I also began to have sever neck ache and the back of my head ached. I lost a stone in weight.

He took a blood test and found I had a sed/esr rate of 70/90 which means very high levels of inflammation. The most common reason for this is Temporal Arteritis. This is what he diagnosed me with and I began taking 50mgs of the steroid Predistone for this.

I finished my course of Carbagen a week later and continued with the steroids. I confused the doctors because I did not immanently feel better with the steroids. I started to feel dizzy and unsteady in the mornings although this did stop after a few weeks.

Because I then began to have the dull face ache I have now, they thought it was the TA coming back so I was having to increase my steroids each time, but because my blood tests were good, they decided it was nerve pain I was feeling.

This then put doubt onto my diagnoses of TA as I had never had a biopsy done. Doctors have no choice now, but to continue with my TA treatment and I am now down to 20mgs of Predistone. My blood tests continue to be clear. I took Amitriptyline for my nerve pain but have now stopped as I am managing to sleep without it.

My question to you Red, is have you heard of nerve damage causing night fevers, headaches, loss of weight, and very high sed/esr five weeks after the nerve damage occurred? Or does it sound like TA to you?

20mgs of steroids is all I am now taking I am on a reduction plan for this.


Elstep/Red, thanks for asking me to have a look at this. I have had some private correspondence with Elstep (you were not aware of course Red) and already told her that I do not know what sort of MRI I had. It was lying down in the donut and a small cage like appliance over my face. It took nearly 55 minutes. I don’t know if that helps you identify what type it was or not Red. I have had it analysed twice, latterly by a renown expert in this field as no vessel was seen on the nerve. I do have vessels nearby on both sides and they concluded that it MAY be that when I am very stressed or in a situation that increases my
blood pressure it swells and aggravates the trig nerve.
If I have to see my GP in the near future I may ask him but it is not on the cards, sorry. I have a very good
relationship with him and don’t want to tick him off by asking for help for a third party!! All the best, Jackie



Richard A. “Red” Lawhern said:

Elstep, TN emerges after whiplash injury often enough for such injuries to be recognized by a lot of neurologists and neurosurgeons as one of the causes of the disorder. Generally speaking, vascular loops occur in many more people than those who present with severe pain. The theory or speculation is that a whiplash injury may bring the loops tighter on the nerve due to extension and twisting of the spinal column.

Regardless of source, if you have volleys of sharp stabs of electric shock pain, most neurosurgeons will tell you that your odds of a successful MVD outcome are higher than if your pain is more of the character of constant burning, boring, aching pain that doesn’t let up. And in both cases, the surgeons have less resistance to using the procedure if a vascular loop or loops are obvious in MRI imagery.

The FIESTA MRI procedure is available in the UK (not called “Gold Standard” as a title). But I think we need Jackie and other UK patients to weigh in concerning the willingness of the NHS physicians to direct that the procedure be used. Even in the US, not all MRI centers are set up to do it. And access to precision MRI services of all sorts is notoriously untimely in many areas of the UK.

I’ll ask Jackie to look in on the discussion…

Regards and best,

Red

Jackie, can you provide any insight on how long it may take a face pain patient in the UK to gain access to an MRI evaluation?

Regards, Red

It was more timely for me Red as it was only a couple of years after my Breast Cancer. They were worried it could all be caused by a secondary. Luckily it was not. I waited about 5 weeks. As I was diagnosed in ER I was passed to Max Fax and they ordered it. They did tell me it was standard for them to arrange it but would put a rush on mine. I only know Brits on site with TN so I cannot comment on all occasions. maybe anyone reading can chip in and help out.
My best, Jackie