Can Atypical Trigeminal Neuralgia just go away one day? Having panic attacks.

[Bellablonde]

The doc and dentist think this is what I have and I'm petrified. I can't stop being in pain and I can't stop thinking that this is going to be the rest of my life.

This all started simply with a filling that fell out in Feb this year, got replaced too deep and I had to have my 2nd molar out. Then the pain was so bad in the molar next to it months after that extraction I had my 1st molar out too in July. They couldn't find a reason for why my tooth was in pain... and nobody mentioned it could be nerves then. I was pain free for one month before a new burning pain set in September where my first molar used to be. It's progressed to burning all down my tongue as well now. It never stops.

I feel like I'm going mad. I can't have this for the rest of my life. I'm 32 and don't want this to be my forever. I keep reading that it will be life long and I start panicing near sobbing. I keep thinking 'if only id dont root canal that first time maybe this wouldnt have happened' which makes me more depressed.

If anyone has had this before and it stopped please let me know. I could stand it for 6 months, a year even two years if I thought there was hope it would stop one day.

My doc has tried me on amitriptoline which didnt work. On lyrica 50-75mg a day now and it's doing nothing.

I was meant to be looking at implants so I can have my molar function back... but now it looks like I'll never get implants either. Not if it makes it worse.

 

[Judythecat]

Hi, I was diagnosed with atypical facial pain and burning mouth syndrome earlier this year. It is miserable, and I'd had about a million dental appointments/treatments before it was finally diagnosed. I'm too scared to take the medication, but knowing that there is nothing wrong with my actual teeth does help me manage it. I've been taking high doses of Alphalipoic Acid which does help a bit.

 

[LittleLynnie]

I had "normal" trigeminal neuralgia, and the drug tegretol worked for me. It was a truly unbearable three months before it was first diagnosed though, and then the first dentist who prescribed it, declared it ineffective the following week because nothing had improved. Apparently though, it's a drug that takes time to build up in your system, and once my GP prescribed it for me again, and I had been taking it for a couple of weeks, it did its job properly. I was pain-free for two years, and then the neuralgia went away. I could always tell that it was still there though, because I'd get little, muffled stabs occasionally. After the two years though, I was never plagued by it again. It's been 35 years since that time and I am so very grateful that it wasn't a permanent situation for me. I hope that this post helps.

 

[Gordon]

The first choice drug for neuralgia is Tegretol (Carbamazepine) is there a reason why you're not taking it?

As LittleLynnie says above, Tegretol needs to be monitored and the dosage managed carefully, but it is very effective. Basically it needs to be started on a low dose then gradually increased till the symptoms are gone and then gradually tapered off again. It does have some unpleasant side effects in higher dosages unfortunately.

Do you have a trigger point where the pain starts from? This is very common in neuralgia, so sometimes you can avoid the trigger to control things a little bit.

You mention that there's a burning feeling, have you been tested for anaemia? The docs need to be looking at your systemic Folic Acid and B12 levels. One thing that you can do that may help slightly is to bump up the amount of folate in your diet, lots of legume vegetables like broccoli and cauliflower, as well as eating Special K cereal which has a lot of folic acid in it for some strange reason!

Hope this helps, please don't get too depressed, most neuralgias are short term things, it's unusual to have one go on for long.

 

[LittleLynnie]

To Gordon,

I'm in Canada and saw a neurologist about 2 years ago, before having all of my top teeth extracted. I wanted to make sure that if I had another bout of trigeminal neuralgia I wouldn't have to wait for the Tegretol to take effect , but he wouldn't prescribe it. He said that most doctors avoid that drug now because of its side effects, and he prescribed me Gabapentin prophylactically instead. I had also heard from another MD, that Tegretol is no longer something that doctors over here tend to prescribe. If I had actually had another bout of neuralgia and the Gabapentin didn't help, I would have insisted on a prescription for Tegretol though.

To BellaBlonde,

In case you were wondering about the side effects, you can look them up online. What I experienced was severe nausea 24/7, at a high dose, so we titrated it down again. I found a happy medium where I was still mildy nauseated all the time, and the "twinges" of neuralgia would come through, but only in a muted way that didn't bother me. Since the amitriptoline didn't help you, perhaps you can get someone to put you on Tegretol.

 

[Judythecat]

I was offered also Amitryptline, Gordon - no alternative was mentioned. (This was at Max Fac in the UK, Scotland.)

 

[letsconnect]

Interesting - according to the NHS website, "carbamazepine (i.e. Tegretol) is currently the only medication licensed to treat trigeminal neuralgia in the UK" (https://www.nhs.uk/conditions/trigeminal-neuralgia/treatment/ ). Is the atypical variety treated differently then?

 

[Judythecat]

Interesting - according to the NHS website, "carbamazepine (i.e. Tegretol) is currently the only medication licensed to treat trigeminal neuralgia in the UK" (https://www.nhs.uk/conditions/trigeminal-neuralgia/treatment/ ). Is the atypical variety treated differently then?

My diagnosis is both atypical facial pain, and burning mouth syndrome, so about as far from typical as possible - trust me to be super-complicated!

 

[Gordon]

Well Judy, you don't have trigeminal neuralgia so why would you be offered Tegretol? You certainly don't take it prophylactically either.

 

[Judythecat]

Well Judy, you don't have trigeminal neuralgia so why would you be offered Tegretol? You certainly don't take it prophylactically either.

Apologies, I am clearly getting muddled. The consultant and my dentist both told me atypical facial pain was a type of neuralgia. The expiation I was given was that my nerves were sending out wrong signals, causing pain which has no dental cause. Is there a way for me to delete my posts? I really didn’t mean to confuse the issue, I have just misunderstood the terminology.

 

[letsconnect]

Don't worry, the experts are just as bewildered, apparently (according to Wikipedia, "The subject of atypical trigeminal neuralgia is considered problematic even among experts."). It's very confusing because some websites mention atypical trigeminal neuralgia and atypical facial pain/neuralgia in the same breath, while others make a distinction. And some websites say that the same medications that are used to treat trigeminal neuralgia (including Tegretol) can be used to treat atypical trigeminal neuralgia (but that they tend to be not as effective).

So it's no wonder we're confused ! I don't think it's a misunderstanding on your behalf!

 

[Judythecat]

Don't worry, the experts are just as bewildered, apparently (according to Wikipedia, "The subject of atypical trigeminal neuralgia is considered problematic even among experts."). It's very confusing because some websites mention atypical trigeminal neuralgia and atypical facial pain/neuralgia in the same breath, while others make a distinction. And some websites say that the same medications that are used to treat trigeminal neuralgia (including Tegretol) can be used to treat atypical trigeminal neuralgia (but that they tend to be not as effective).

So it's no wonder we're confused ! I don't think it's a misunderstanding on your behalf!

Thank you for your kind message. I felt truly awful thinking I had misled people and confused the issue.

 

[LittleLynnie]

I don't think that you did that at all. Sometimes, the written word can be misinterpreted online.

 

[Gordon]

Apologies, I am clearly getting muddled. The consultant and my dentist both told me atypical facial pain was a type of neuralgia. The expiation I was given was that my nerves were sending out wrong signals, causing pain which has no dental cause. Is there a way for me to delete my posts? I really didn’t mean to confuse the issue, I have just misunderstood the terminology.

No, sorry, I was trying to be humorous (hence the smiley face) and clearly failed.

"Neuralgia" is an extremely vague term, which basically means "pain from a nerve", what we were talking about was Trigeminal Neuralgia, which is a much more clearly defined syndrome.

 

[Bellablonde]

Thankyou so much Gordon. Im sitting in a specialists office now and only just got the courage to read these replies.
Just being able to post on this forum and tell someone about it actually helped my anxiety but I was too afraid Id come back and read worse news.
Thankyou for the tip re medication. The Lyrica does nothing. I will tell the specialist today.
Is B12 and B vitamins worth taking too?
Going out to buy cauliflower after this too haha.
Ty so, so much. Nearly in tears in this waiting room haha.

 

[Bellablonde]

I had "normal" trigeminal neuralgia, and the drug tegretol worked for me. It was a truly unbearable three months before it was first diagnosed though, and then the first dentist who prescribed it, declared it ineffective the following week because nothing had improved. Apparently though, it's a drug that takes time to build up in your system, and once my GP prescribed it for me again, and I had been taking it for a couple of weeks, it did its job properly. I was pain-free for two years, and then the neuralgia went away. I could always tell that it was still there though, because I'd get little, muffled stabs occasionally. After the two years though, I was never plagued by it again. It's been 35 years since that time and I am so very grateful that it wasn't a permanent situation for me. I hope that this post helps.

Thanks for sharing your story Little. Gives me hope this won't be forever and one day I might be ble to go for implants when it settles down fingers crossed

 

[Bellablonde]

I changed dentists and they told me re getting a bloodwork so got that done for iron and b12 was all normal. Just got a script for tegretol from specualiat- he was like how has nobody put you on this yet? Hope it works!

 

[Kns]

Let us know if the tegretol works for you! Take care!

 

[LittleLynnie]

Yes, and remember that it can take a full two weeks to take effect. Good luck. I hope that this does the trick for you.

 

[Gordon]

The tegretol needs to have the dose monitored and adjusted, just taking it like a normal drug with a tablet a day won't necessarily work. The best thing is to start with 1, then 2 as close to 12 hours apart as possible and then 3 and so forth. It's not a "prescribe and forget" drug!