Trimengial Neuralgia
 

I have never had any problems till I went for a tooth cleaning after that burning, pain in my tooth.My dentist filled the tooth as the filling had come loose. Told him about the burning but he didn't listen. After that told I needed root canal which made the burning and pain worse. The dentist related it to a tooth problem and pulled the tooth which was a front one, put a flipper in which had to be removed two days later as the pain was intense. I finally found a pain management doctor who diagnosed trimengial neuralgia. He put me on triliptical which has helped somewhat but I still have flare ups at time, sometimes I don't know what sets it off, but the cold and brushing my teeth makes it worse. The tooth next to the tooth that was pulled burns also. The gums on the left side top and bottom burn periodically, and my lips and tongue burn. I have never been in this much pain in my life. Sometimes I ask God to take me. Some days I feel good and think there is hope and other days it starts up again. I pray every day for relief. The Doctor I am seeing is kind and compassionate. I had a brain scan and they did not find a tumor. I am at my wits end hoping for total relief. Three months ago I was fine and now I can't do the activities I use to. Have to eat soft foods and broths and shakes. Haven't been able to eat in the front as it is impossible. I am glad I found a forum with people that are going through the same thing.

Makenzie,
Posted on your Introductions message, so glad you found your way here.
Take it as a positive that your scan was clear, we all have so few plusses that to hear about one for another member is a boost to us all.
I AM sorry to hear your TN is affecting your ability to eat, and especially your mood. My TN covers the whole of the left side of my head and face, doesn't affect my eating but makes me drool at inopportune moments.
Things like this, the constant pain, will lead to Depression and you are clearly having problems there. Have you spoken to your GP about this? It is a serious matter which makes everything else worse. I know you turn to God, but you can also find support here. The places for this are, Sanctuary for Spiritual Support and Depression Forums.
They are not a substitute for professional care, but the members are going through the same things and understand.

Dave.

Sorry you are going through this. Many of us start off in the dental chair. Be careful with dental procedures. TN is a great faker. I have tooth and gum pain too. Everyday--some better than others. I am glad to hear that you are responding to medication. I have bilateral ATN. I also get break through pain and flair ups on a regular basis.
I'm sorry that it is affecting eating. This pain is dead miserable. It helps to have other people to talk to. Ask anything.

Thank you both. I did speak to my pain management doctor and he gave me a pill to take at night. Nortripiline along with the triliptical. It has helped the depression. Friday was a good day, Saturday was pure hell. Just when I thought I could'nt take any more pain, it stopped on it's own. It is as if this disorder has a mind of it's own. Because the problem is in my front gums and tooth, I can not chew or even go there as the littlest touch starts it up. It is hard having a front tooth missing, as I can not have anything put there as it aggravates the tooth next to it which aggravates the nerve. I try my best to make sure I have nourishing broths and shakes, soft foods are okay. I have noticed a little drool at times. This disorder makes you not want to go out in public especially if one has tooth missing in the front, it is embarrassing I want to ask you how do you get a teeth cleaning. Do you tell the hygienist to stay away from the area with the nerve problem. I am so afraid the hygienist will make it worse. Any help you can give me will be much appreciated. I notice it gets worse at times when I brush my teeth. Is there ant toothpaste that doesn't bother the area. This is all so new to me, never heard of this condition till I was told of it by the pain management doctor. Thought I was crazy till I found him.

Tricyclic anti-depressants, such as Nortriptyline, can help with the actual pain as well the depression. All of these meds take time to build up in your system and you have to increase slowly so hang in there. Hopefully they will bring you some relief. And TN does have a mind of its own. I can be in agony one day and pain free the next. For me it comes more in isolated attacks that can last a day, a week or a month. Use that pain free time to relax and refocus. Stress and anxiety exasperate TN so take care of yourself and be aware of that.
Find a dentist that understands and is compassionate. My dentist always saves my worst area for last so that if pain starts we are finished. Sometimes we skip that area all together. And I have cancelled many appointments last minute because I was in pain that day. He always does full xrays so we can address any problems quickly. Some people use baby toothbrushes for brushing or skip some days and use mouthwash. For some people the peppermint is a trigger so you need to find a different toothpaste.Having physical touch of the area being a trigger is difficult. Obviously our oral health is imperatively important but it is easier said then done sometimes. As you move through this you will become more aware of what triggers your pain and hopefully this will enable you to have less pain. Common triggers are physical touch of certain areas, wind, cold, barometric pressure, stress, anxiety and lack of sleep.
Unfortunately it takes some people years to be diagnosed because many Drs don't know of this condition. You are very lucky if you have a Dr that knows, understands your pain and wants to help you. Some people keep a diary of daily pain, locations and anything that could be a trigger. It can help you and your Dr. immensely to have this.
Keep asking questions and learn as much as you can.

Makenzie,
I agree with Justjane about the dental work - and then some - I am ashamed to admit I visit the Dentist for emergency work only, the pain is just too bad for cleaning and routine work. I get by with loads of mouthwash and gum, and little-and-often brushing when I can. I wear a beard by choice but can only trim it (electric trimmers) every 3 months or so and having someone touch my head to cut my hair happens every few years.
I understand how you thought you were crazy at the start of this, mine began with painful pins and needles numbness(like your arm waking up when you've slept on it wrong) in my nose, spreading up to my forehead. Try telling that to your GP. Thankfully, my GP is excellent and referred me to a Neurologist. By the time the appt came round the numbness had spread all over the left side of my face and head so dx with an MRI confirming the arterial knot was easy.
I have numbness all the time, and different things which cause extreme pain like you. As time goes by you have to modify your life to accommodate this horrible condition without letting it run or ruin it. I take no meds specifically for TN as I have severe Neurological Hypersensitivity, neck and back injuries and Depression etc so I have Lidocaine infusions, take Ketamine, Oral Morphine, Tramadol and Mirtazapine. The anaesthetics combined with the opiates are very good at dulling down neurological pain, even for me reduction is 40% on the best days.
Keep on top of your PM team with regard to finding a level of medication that will allow you to eat properly on 'normal' days, modifying your diet so radically is no way to have to live. Above all else, stay positive. TN may be grating, depressing Hell but we are still here and we have good days, and - who knows - the next change in meds might bring you almost total relief.

Dave.

Thank you. I am scared to go have a Cleaning, IT IS DUE IN MARCH. i HAVE BEEN USING A CHILD'S TOOTHPASTE WITH A FLAVOR OF STRAWBERRY NO MINT. YESTERDAY WAS GOOD TODAY IS BAD. Sorry my keys got stuck. I would like to know how long does it take for triliptal and nortripiline to start working? Sometimes it does and sometimes it doesn't. The doctor started out with one and has worked the medicine up. Today was horrible and still is. I flossed there and when I washed my face the tooth and gums started burning. I took a half of pain pill, and it hasn't helped at all. Just when I think every thing is better it starts up again. Does it ever get under control at all? Thankyou all for helping me. I suffered for three months and would rock back and forth crying not understanding what was happening to me. I wish I had known it wasn't the tooth. I never would have had it pulled. I don't know if I will be able to have a fake tooth put there. It is frustrating at times. I am so sorry you are all going through so much.

There Is Hope…
 

I am so sorry this is affecting you so badly at the moment, but that is the nature of this hateful condition. As Justjane stated, your meds will take a little while to kick in properly - perhaps a few weeks - then there is the time it takes to modify doses (while you are getting relief). You HAVE to hang in there and avoid things that may trigger severe attacks, things that are natural like flossing.
It is clear that your 'break through' pain meds are not enough for the level of attacks you are having. You need to have this adjusted to suit or Depression is a real concern.
Despite all this, all the pain, all the meds, there is hope. When you are left with a chronically painful condition like TN your mind in all it's Glory learns to cope with the pain better and things seem to become dulled most of the time. I'm not saying it's going to go away or become easy - but I hope for your sake that it does - it can seem that way.
Look after your mental health at all times. Come on here to question or vent, or just to seek some support.
Sorry if I've rambled a bit, was taken to a family event today with no meds - excessive pain - followed by everything at once.

Dave.

Thank you English Dave and Bless you both. I have been on the higher dose for two weeks.

I also have a question, does any one have bad days and good days on the triliptical> Is it suppose to work all the time or does it not help at times. I have gone 1 and 1/2 days pain free and then whamo it will start up.

Yes with TN I have good days and bad days. The pain could be in my left eye for five days and then on my right side tongue for one. I can have excruciating pain one day and ZERO pain the next. For me the pain comes on in "attacks" or "flair ups" with good days in between. I never know where or how badly it will strike.

The worst is the burning, my tongue burns and my lips then the tooth starts throbbing. Then the pain will stop and I think oh maybe the medicine will work, then the next day it will start up. Yesterday I washed my face and touched the area where the problem was and was in pain all day. Then all of a sudden it stopped, today has not been to bad. I am grateful that there are people who understand. This is so new, I need to ask so many questions sometimes I feel like a moron, as I am trying to understand and make sense of it all. Thank you again.

Whatever drugs you are on the pain and numbness can overwhelm their effect and cause an attack, I'm afraid. With the doses of the meds I'm on I shouldn't feel anything ever, but the numbness is a nagging irritant, and going out in a breeze under about 45℉ or having to take my heart GTN spray guarantees the pain to sear through my face.
As to your next post, never put yourself down for asking questions, it is how you learn the truth from fellow sufferers.
Always make the most of your good periods and avoid triggers, bad days will come and go.

Dave.

It can be frustrating at times. I read that here in the US there are not that many sufferers and so not many alternatives to help, as not a lot of studies has been done on this condition, because there are many more like us but they do not know what the problem is and where to go for help. I was lucky in that I went to another dentist who said it was a nerve problem and then sent me to the pain management Doctor otherwise I would have suffered much longer than I did. It has made me humble as I know there are people who are in the same position as me, and some are far worse. I wish I could cast a magic spell and stop all the pain for all the ones who have this horrible condition. Much appreciate EnglishDave.

Before I joined this Forum I assumed almost everyone with TN had a condition like mine in the brain physically affecting the nerve. I had no idea the root cause (pun: if we don't laugh, we cry) for so many was dental issues.
That's what I enjoy about being here - along with the connections with other members - learning how you all come to be here, and trying in some small way to help.
I hope everyone is having a flare-free day.

Dave.

So far no pain. I have noticed when I wake up no pain then between the hours after I take my second dose of medicine at noon, I start experiencing the symptoms at full speed. They start to slow down around 4pm. I wish I knews why at that time it is so bad.

This "schedule" of pain is very common amongst us. I am exactly the same as you. Sleep seems to "reset" things thank goodness so I try to get as much as I can when I am not feeling well. I do not know the reasoning for pain being at its worse in the late afternoon/supper time either. I have had this for two years and that is one thing that has stayed the same.

Could be something in your body's natural Circadian Rhythm, triggering extra sensitivity at that particular time of day. If you go to sleep again after your meds at noon does the pain follow the same 'flare-up' or is it reset? If it is the former it could well be sensitivity in your Rhythm, if the latter it's likely to be an outside stimulus.
Knowing which may not help physically, but can go some way to answering 'Why now?'

Dave.

I take my meds 6am 12 noon and then 6pm. Nothing too bad in the morning but afternoon it starts, and then stops around 4 pm. But today the burning and pain started after I took my meds at 6am. I can't win at all.

It is as if the TN has a mind of it's own, constantly hiding and tricking me. I sometimes want to scream until I can't stop but the neighbors would freak. The only time I have relief is at night when I sleep and when I wake up ion the morning. That's about it. If I could have two days straight without any discomfort I would be happy.

That's the nature of the Beast we have to live with. If you cannot work out what is triggering attacks around the same time every day (with exception) how about pushing your meds back by an hour for a week. Change up anything else you can think may be contributing to the attacks, eating, teeth cleaning, etc…
Don't let it overwhelm your mind, do you have anything that helps you maintain a calm state?

Dave.

I have trigeminal nerve injury from a dental procedure. It has nothing to do with classic trigeminal neuralgia. It is imperative that you seek a second dental opinion by an expert on your condition!

In other words change the schedule to 7am 1pm and 7pm to see if that works better? I will try that. Flossing starts the flare up sometime I brush and nothing happens and then it starts. I will try that. Thank you.

I have seen three and they all say the same thing. I had this after a tooth cleaning and then a root canal and a tooth pulled which didn't need pulling. I finally found someone who diagnosed it. I think it is also from a dental procedure. What are you doing or taking for it.

Hi Cleo,
What do you call 'Classic TN' there?

Dave

Since I am new this, having been diagnosed only a month ago. I would also like to know what is Classic TN is. Thank you English Dave. I wonder myself if the body gets use to the schedule and sometimes it is best to change it a bit to see if there is a difference, Your knowledge is much appreciated, as is just jane.

Classic TN as advertised by the TNA
Classic Trigeminal Neuralgia, type 1, (TN1): (also known as tic douloureux) facial pain of spontaneous onset with greater than 50% limited to the duration of an episode of pain (temporary pain). TN is often caused by loss of or damage to the nerve’s protective coating, (myelin). The most widely accepted view is that myelin damage results from irritation of the nerve, usually a blood vessel that causes the nerve to be compressed.

Is that caused by a disease or just aging? Can you get a form of TN from a dental treatment? Thank you. Can you be pain free one day and all of a sudden have these problems?

Thanks for that Cleo, I read their Site - and also the English TNA Site, amongst others.
Over hear everything is lumped under one umbrella heading - Neuropathic Facial Pain (Perhaps this would be a better Forum title?) - which includes pain from TN, Diabetic Neuropathy, MS, etc… But what's in a name - or cause - on this Forum when the excruciating pain is the same and you are looking for support from fellow sufferers?
I, myself, have a knot of arteries wrapped around my left trigeminal nerve before the branching, causing constant parasthesia (painful pins and needles) on the left side of my head and face - especially forehead and nose - (Neuropathic Facial Pain).
Classic TN attacks happen when the arterial knot tightens, or moves - cold weather, stress, touch and especially my GTN heart spray which dilates blood vessels. Then the pain is ramped up to a burning electrocution. Like everything else, I get it in Spades.
As an aside, the TNA statement that TN is probably the most painful of human conditions is a wild one. Having the misfortune to suffer Cluster Headaches aka Suicide Headaches - which last for up to 2 hours and make me want to smash my head against a wall, or reach into my skull and rip my brain out - as well I can categorically state TN is second place. (Ladies, please don't mention childbirth)

Dave

I can't mention childbirth, as I have never had a child, but what you are having to deal with every day is terrible. I will send good thoughts your way.

I truly appreciate that, but I notice your mood is 'sick'. Has changing routine helped at all? Give things a few days to settle - and your meds will still be building up in your bloodstream.
Try to stay strong, it may be a long-term/life-long condition for most of us, but with the right meds your body and mind can learn to better tolerate the pain. Believe me, Neuropathic Facial Pain - whatever the cause - is a debilitating condition which can ease, then come back with a vengeance (except for rare cases like mine where the condition is Chronic, as are my Cluster Headaches - I must have been Ghengis Khan or Attilla the Hun in a past life). You have to be mentally prepared for this, I'm afraid.
I hope your flare-ups are soon under control and this episode becomes a nasty memory, just make sure you do not slip into the trap of Depression which is so hard to climb out of. There is support of all kinds across the Forums, not just here. Why not pop over to The Lighter Side and see if my Celebratory joke can put a gentle smile on your face.

Dave.

You did make me smile. I didn't change the meds around and there is a change. Thank you so much.

The type I have is caused by a dental procedure in 2001. Mine is dysesthesia in the tongue which began instantly as burning electrocuting numbness along with my teeth feeling like a vice grip had been placed on my lower jaw. I had oral nerve surgery in 2002 that did help over the course of several years with some of the tongue issues. I agree with Dave its all neuropathic pain but you really need to be treated for the specific neuropathic pain conditions by certain doctors who deal with those specific nerve problems.

Ah, there's the difference! Over here I have seen the same Neurology Dept. (never the same Neurologist) for TN, Neuropathic Facial Pain/Parasthesia, Neurological Hypersensitivity, Cluster Headaches, Brain MRI results, and am going to the same Dept. regarding my latest MRI, Brain Lesion (cause), Spinal Cord Compression, Arachnoid Cyst…

Dave.

What is oral nerve surgery? I don't have any neuropaths here, neurologists and neuro surgeons yes but no neuropaths.

In my case oral nerve surgery was A micro neurosurgery in the oral cavity performed in an attempt to relieve trigeminal nerve disorder caused by dental procedure that resulted in trauma to the nerve. My main doctor was a oral & maxillofacial jaw surgeon. The reason I responded here to this discussion was because I noticed the mention of dental work and nerve pain.

Cleo,
You don't have to justify your input, everyone is welcome that is the beauty of this Forum. In your case you brought new, first-hand experience to the discussion - hopefully leading Makenzie to new, improved treatment and less pain.
I cannot imagine having tongue and jaw problems that you had/have. The TN hurts (obviously), but my main eating/mouth problems come from the parasthesia where my lips, cheek and tongue are pins and needles numb. This brings on a fair amount of drooling, slopped drinks(I tend to drink out of bottles to reduce this, plus I shake a lot) and bitten cheek and tongue when I eat.
When there is something neurologically wrong with your tongue it feels, well, Wrong! More so than other body parts I think. Does it also affect your speech as it does mine?
I wish you continued improvement.

Dave.

I have never heard of the surgery, This is done by an oral surgeon who is also maxillofacial jaw surgeon?

I have never heard of the surgery, This is done by an oral surgeon who is also maxillofacial jaw surgeon or another doctor?? Did it help?

Yes I had 3 oral surgeon opinions. Only one did total face/jaw reconstruction ect.. Your dentist, endo, perio, or oral surgeon should follow up with your condition until it resolves. Pain management is for drugging the pain when it becomes chronic.