Every day pain

Hi everyone, my name is Bill and I’m new to this site. I have lived with TN for about five years, and have found, like a lot of you, that over time it worsens. I was placed on Gabapentin, which worked for a while, but is all but useless now. I have had a nerve block, which lasted for about two weeks, and a nerve ablation which lasted for about two months. I was referred to the University of Minnesota and had an MRI, the results of which were later posted online and is gobbledygook to me. I have sent copies to a doctor friend in the UK to get them translated into layman’s terms. Why that wasn’t done by the neurologist at the time is beyond me. The neurosurgeon advised that I get a MVD done. I declined since I didn’t think it would help me. Here’s why (and please tell me if you think I’m wrong)…
This all started during a visit to the dentist. She was new, just a young girl, who had recently bought the practice, I was there for a routine filling. She injected me with Novocain and the pain that shot up my face was indescribable. She looked pretty shocked when I cried out. She injected me a second time with the same result. By this time I had tears in my eyes and was in shock. From then on the pain in my face was unbearable during bouts, but was intermittent for the first 12 months or so. Since I would go into remission for a while, I thought it would eventually heal and the pain would vanish. That turned out to be a forlorn hope. One day it returned after a pain free period, and never went away, that’s when the doc put me on Gabapentin. That worked for about 18 months after which it became ineffective. The pain, when I get it, (far too often these days) originates every time from the entry point of the dentist’s needle, which leads me to believe the nerve is damaged at that location, so what good would a MVD be? Having read some of your posts and comments, I’m even more reticent to get the procedure.
I have read a lot of your stories and I’m shocked to find that some of you are so young! You really have my sympathy. I feel for you all. I was in my late 50’s when this happened to me, so I at least had most of my life without the pain. But of course, this condition is awful at any age.
One of the things I have found difficult with this TN is the distress I see in my wife’s face whenever I have a bad attack. She feels, and indeed is, powerless to do anything about it. I try to hide it from her as much as I can, but that’s not always possible. When I can’t hide it, the pain in her eyes only serve to increase my own. These days the slightest thing seems to trigger an attack, from brushing my teeth, to chewing or even speaking. I dread these times. Every day I’m in pain.
It is my sincere hope that this site will help in my journey to deal with this debilitating condition. I really do feel for you all. I’m thankful that a lot of you have found relief in some way or another, let’s together hope that there will be some medical breakthrough for the rest of us.

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Let me start by saying I’m fundamentally against surgical procedures for TN/ATN.

  1. MVD only works if you have a clear nerve compression to be corrected, it doesn’t sound like you have this

  2. If it works, MVD seems to average 5 years – seems like a very short period of time based on the fact it’s fundamentally brain surgery; although up to 90% of people have no pain immediately there’s actually a occurrence of pain within a year for 50% of the people and that percentage simply continues to go up (google will give you tons of stats on this)

  3. If it doesn’t work MVD can make everything worse (and who wants to risk that?)

What happened to you is fairly rare but not unheard of, it sounds like the dentist did the injection incorrectly, although that usually happens in more extensive dental work then a routine filling. You may want to look for a dentist that specializes in facial pain and have a consultation. If she didn’t do the injection wrong odds are you were predisposed to TN/ATN and the injection triggered it.

In terms of medication, you haven’t even touched the surface of medication options! Gabapentin isn’t even the front line medication for this condition, not sure why that was the first thing you were given. You’re going to want to explore your options:

oxcarbazepine (Trileptal), lamotrigine (Lamictal) and phenytoin (Dilantin, Phenytek). Other drugs, including clonazepam (Klonopin) lyrica, and gabapentin… Muscle-relaxing agents such as baclofen (Gablofen, Lioresal) may be used alone or in combination with carbamazepine. There’s also the lidocaine patch.

Often, meds work best in combination, it may take more then one to bring the pain to heel.

It seems to me you need to get under the care of neurologist who works with people with this condition. This is a rare condition so your GP is automatically out of his or her depth. And, in my experience, surgeons just want to to surgery, they don’t manage conditions on a daily basis. Since there is no cure for this you need is daily management of the symptoms and you’ll get that from a neurologist.

Make sense?

Have you tried massage to the head/shoulder/neck? I based on your general story I’m not sure that will help but it’s noninvasive so it’s worth trying.

Thank you for your reply. You certainly are very knowledgeable on the subject and I will pursue the options you have laid out for me. You are right about my GP being out of his depth. I will try to find a neurosurgeon who deals with this. Although he is a competent doctor, as you have rightly said, this is a rare condition.
Thank you Azurelle.

Hello there !
My name is Marcela
I had mandibular surgery back in December
4 months ago.
3 weeks after the surgery I developed very severe trigeminal neuralgia.
I am still in pain, even after heavy medication, nerve blocks and acupuncture.
I had a brain MRI which showed inconclusive finding with a vessel touching the trigeminal nerve. Therefore I was seen by neurosurgeon which said get a MVD, I said no because my mandibule surgery had nothing to do with the Brain so I was very scared.
Fast forward 4 months later my pain is still present but better controlled with daily medications: Lyrica, Trileptal and Pyroxicam.
I pray this pain does not rule the rest of my life
I am awaiting Botox injection to my face for pain control. Anyone with experience with Botox treatments?

Thanks for reading
Marcela

Hi Marcela, I have toyed with the idea of Botox injections but I have decided, after some consideration, to pursue other means of controlling the pain, such as different medication. So far I have only tried Gabapentin, I understand there is much more out there. My challenge now is to find a decent neurologist to help with that.
I’m so sorry to hear of your trouble, unless you suffer with this, it’s impossible to understand. I suffer with the pain every day, so I know what you are going through. I hope that the Botox will help you with your pain.

Bill

Thanks Bill

Exactly what you say, “ unless you live with the pain” no one will understand.

Thanks for your words of encouragement

By the way I found much improvement with oxcarbazepine and lyrica instead of gabapentin which I tried for about 6 weeks

Marcela

I have just spoken with someone from the local pain management center and I have an appointment next week. I’ll suggest that. Thank you!

Bill

Hi Bill, I’m going to play devil’s advocate here, not for the sake of it but because I think it is too easy (and too heartbreaking) to fall in love with what appears to be a logical idea. My TN onset was the same as yours; I was in my late 50s and it was very sudden. However, the onset of mine came with sugar! My teeth were a little sensitive, nothing unusual in that. But one day, eating in McDonald’s I had ketchup, something I never normally ate, and I got this electric shock feeling in my tooth. I immediately thought, ‘Oh no, I’ve got a cavity’. But after that, all was well for a few days, until one day I came home from a long walk and my partner made up a bowl of fruit for us. As he was doing it he gave me the mango peel to eat the fruit off it and I got a really severe shock in my front teeth. After that TN was with me with a vengeance; shocks all day, every day, for everything.

The point I’m making is this, sugar triggered my TN, but it didn’t cause it, and that’s a very important distinction. I think it’s more likely you were ‘fated’ to get TN, as we all seems to be, genetically, and the injection, going straight into a nerve as it were, simply brought the little bugger on.

I’ve read up on dental injections damaging nerves, and it is bound to happen occasionally, but when you think about it, it’s just a very thin needle. Your body would be able to heal it very easily and quickly, which is generally what it does. If it didn’t, people would never heal from surgery (much worse and deeper cutting) or from accidents and knife attacks. They’d all have nerve damage and they don’t.

I know I had tremendous trouble in knowing whether it was a tooth problem or TN, and docs and dentists weren’t much help. I had to do it by a process of elimination, and learning the oddities of TN, which differentiated it from toothache. If you were only getting nerve pain with pressure on the tooth that might indicate a damage issue, but you seem to be getting pain like the rest of us (yawning, talking etc) so it’s much more likely it’s TN.

I’m just telling you all this because you can make yourself miserable obsessing over it being a damage issue, when it just isn’t. The dentistry was much more likely a trigger than a cause (and you were exactly the right age too.) Better to accept it’s crazy old TN and come to terms with it than waste your life chasing wild geese! Good luck. X

Bill, kind of agree with wwtet.

I think, though I’m sure it happens, dentistry gets a bad press when it comes to TN.

The straw that broke the camel’s back, I reckon is common with TN and dentistry.
The person who bends to pick up his newspaper and his back goes- he was already wobbling on the edge of the cliff.

Dentistry/ back washes at the hair dressers, all potentially affect the neck and underlying problems come to light. Come at me with a needle, I’m going to tense, and if you have say Osteoarthritis of the neck for example which connects to the trigeminal nerve, you may well fall off the cliff. Dentistry by it’s nature can cause damage but the above maybe worth investigating.

Hi guys, it wasn’t my intention to imply that I totally blamed the dentist, though I didn’t tell the whole story of what happened that day. There was certainly incompetence and a certain amount of malpractice. I have not taken any legal advice and don’t intend to. I also think it possible that this event triggered what was something waiting to happen, a predisposition, if you like. I have considered this, and I’m not obsessing over it. It’s just that I don’t want an invasive procedure done if it’s not going to work, because I think my TN has nothing to do with the wearing away of the outer coating of the trigeminal nerve due to the constant pulse of an artery. As I said in my previous post, the pain I get always originates where the needle was inserted. That’s what gives me pause. My logic tells me there is damage of some kind in that area. Of course it’s TN, but this is specific to damage through dental work. All I want now is some way, other than surgery, to manage the awful pain I get on a daily basis. I think the doctors I have seen have been too quick in abandoning the medication option.
I wish you all the very best wishes in combating what is obviously a distressing condition. Thanks for taking the time to post.
Bill

I understand you thinking with concerns about MVD due to your experience. A lot of folk on this site have mentioned dentistry/ TN in the past, at some point there was some kind of survey. I would wish you’d explore what sparky and ellen are talking about. Might sound silly if your convinced it was the injection rather than the procedure, but TN is miserable, so worth a shot?

Hi Bill
First, there is always hope. You mentioned about the young people getting TN. I agree, this seems too hard to comprehend, but I’ve found these youngsters seem to have a positive outlook that older suffers often lack. Have hope, Bill. After 30 years my pain has become more bearable and liveable.
Re your MVD quandry, I reccomend contacting Dr. Ken Casey. I’ll try to fond his email and send it in another post.

Bill
Dr Casey’s email is dadirish

Dr. Casey: ■■■■
He did one of my MVD’s and he is a font of info. Good luck.

Thank you Gilbert, but I think you left out some of the email address.

To send personal info for anyone such as phone numbers or email addresses you’ll want to use the private message feature.

Click on the name of the person you want to send to and you should get an option to send a private message.

azurelle (site moderator and ATN person)

Hi Bill,
Got my first shock early teens, currently pain free at 38, no drugs, no surgery. You can check out my other posts, but in a nutshell, after years of personal experience research, I believe TN is caused by a viral infection getting into the core of the nervous system. Healing it involves stengthening the immune system.
I recommend three things:

  1. Try Upper cervical chiropractic…getting alignment in the neck can relieve pressure on the nerves, instantly making them less sensitive, and boost the immune system. Try at least three different ones, and give them four weeks each before giving up.
  2. Go on an intensive immune boosting therapy with some component that impacts the hormonal system. I’ve posted the regimen I used elsewhere.
  3. Reduce stress, consider reading The Mind Body Prescription by Dr John Sarno.

Blessings,

George

Thank you George, I certainly will.
Bill

Hi Bill,

I have had this condition for several years now. I am on Gabapentin and Ox… So far so good. But I pray every day that this pain never comes back. It is the most debilitating condition ever and I too pray that they find a cure for all of us. Good luck and keep on going. Sherelle

I’ll say amen to that Sherelle!