Recently "diagnosed" - help!

General General TN & GPN (Old Site)
1

Notice the quotes in the title... I'm not convinced I have TN yet. Although the pain I've been experiencing seems to fit pretty closely to what TN dishes out.

A little background on me... I also have Ankylosing Spondylitis (AS). (which is... "a long-term disease that involves inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. These joints become swollen and inflamed. Over time, the affected spinal bones join together.")

My TN pain started right after Christmas this year. Of course when doctors and dentists are in short supply. I started taking Advil right away... which I always have around because of my AS. After a couple of days, I attempted to go to a walk-in clinic but the wait was WAY too long. I phoned my dentist's emergency number and all he could do was prescribe some Tylenol 3's over the phone to a pharmacy. He also thought it could be the first bout of a cold sore - which I've never had before, so he prescribed me anti-virals as well. The pain was so bad for the next two days, I was alternating between Advil and Tylenol 3's every 2 hours. On Dec 30th, I went to the emergency because the pain was so bad. The emergency doctor "diagnosed" me with TN and put me on carbamazepine. Basically just by me describing the pain.

So now I was taking that, plus the Advil and the T3's because the carbamazepine wasn't kicking in right away. HAPPY NEW YEAR! >:( I was able to get in to see my dentist 3 days later. They took an Xray to rule out dental issues... They told me to continue on with the carbamazepine and call them in a couple of days if the pain was still there. Well yeah. It's still there. I called them back and they're convinced that it's TN and basically told me to continue on the carbamazepine. (100mg - 2 times a day). There's no point in me coming in to see them again, they said. I'll admit, the pain is getting better, but I still have to take Advil a couple of times a day to assist with the pain management. I made an appointment with my GP, but that's not until the 17th! (a little under 2 weeks away).

So that's where I'm at now.

I just don't know what to do...

Should I get a second opinion from another dentist?

Should I try to get in to see my doctor sooner? (which is near impossible)

I keep seeing that MRI's are the real way to diagnose this... should I go back to emergency and get them to do that... (although I'm guessing there's a wait)

This is the most pain I've ever been in. And I'm one of those self proclaimed "tough guys"... I've broken bones and even donated bone marrow and I think this is worse.

One other question... my gums are red and sore. And my bottom lip is a bit swollen... hard to explain, but it's not puffy... more like the little salivary glands or lymph nodes (or whatever) in my lip are inflammed... they feel kind of bead like. Has anyone else experienced this??

Thank you in advance for any help!!!!

Jeff

2

You should be prepared to read and study and learn. Your GP will probably send you to a neurologist -- they will do MRI to rule out MS or brain tumor -- MOST MRI do NOT show TN --

If you have TN2/atypical - more burning constant pain in mouth neurontin is a good start

If you have lightning zaps come and go - that is type I = responds better to trileptal

If you have any immediate questions about side effects call pharmacist - underutilized

Get the Book "Striking Back" by Dr. Ken Casey.... TN does not go away... it only goes into remission ALSO read the face pain info tab above

If you ever consider an operation called MVD - it is better to do before ANY other invasive proceedure - and always pick a neurosurgeon who has MANY tn patients.

Narcotics sometimes take the edge off pain - mostly not

You can ask for Lidocaine prescription face patches/ face cream or for inside mouth pain Lidocaine mouthwash.

Don't try to "man up" let people know what you are going thru - the more you read, the better you can explain --- we are only 12 in 100,000!!!

That is why you need to know all you can know about this! If your meds make you too ditzy to research - have somebody do it for you - knowledge is power here!

Keep Posting !!!

3

...just went to get a second opinon from a different dentist. He's 99% sure I need a root canal and it's not TN...

NOW WHAT?!? Do I go ahead with the root canal and hope that's all it is??? My dentist and another dentist in his office says it's not the tooth...

ugh.

I guess if I go through with the root canal at least I can rule that out if it doesn't help me!!

4

Hi,
Welcome to the site. I’m sorry your having such a rough time with pain. This going to be quick sorry. One before you get a root canal done see the face pain info area. There is info on getting dental work done. Also there are a lot of people who have unnecessary dental work done because they thought the pain was caused by a tooth ach. It takes time for the medications to work. These meds need to build up in your body and then you have to taper up to the correct dosage for you. I’m betting if your starting to get some relief from carbamazepine there is a good chance you may have tn. Try to see your doctor sooner. MRI are used to rule out MS or tumors. Diagnosis is usually based on patients descriptions and location of pain. Your doctor may also do some blood work to rule out anything else. Hope that helps a little and it is nice to meet you.

5

Beware of the root canal!! if its infected and you can clearly see that then maybe thats your problem they kept telling me i needed root canals the more work i got done in my mouth cause the dentist were idiots the worse my pain got! another thing if you get a mri make sure it a feista or a tesla they are more likely to show compressions my first mri showed nothing my 3t showed compressions on both sides.

6

After being on tegratol for a year my pain kept getting worse. My MRI didn’t show anything and the dentist said I was fine and it wasn’t teeth. My neurologist kept upping my upping my dose of tegritol but it still wouldn’t let up. So I went to my brother in law who is a oral surgeon and begged him to figure it out. He found a sore way up high in my gum line and took a biopsy but it came out inconclusive. He then referred me to an Indodontist specialist. He tested my teeth and also took extensive exe rays and nothing showed up. So he decided to scedual a root canal appointment and since I was in so much pain I agreed. My appointment lasted 5 hours and they ended up doing 2 root canals and treated a large abcess that couldn’t be seen in the exrays. He said both teeth were really bad and infected and that is could take up to two years to totally heal. Over the next 3 months I was weaned off my meds and now a year latter I am mostly pain free and is still improving with time. It has been a long 2 years since Iit all started. My advice is to keep searching for the root of the problem. If they can’t find any obvious reason with a detailed MRI keep searching. If you get your root canals done go to an endodontist specialist not just your dentist. Mine told me that he has seen other cases like mine that were diagnosed as TN that after dental surgery their symptoms also went away. I had sighns of atypical that started out on one side of my face and over time crossed over to the other side of my face. I also at times has symptoms of type sudden shocking pain. My root canals were both on the same side of my face along with the abcess. But it affected the nerves on both sides. I wish you the best in your journey to find your answers and hope they will turn out positive…good luck…let us all know what you find out…Kathy

7

Hi, Jeff...I really hope you get some answers soon! I ended up in an ER back in August for the worst pain I have ever experienced in my life lasting 3 days straight. Having babies was so much easier! ER said it was an abscessed tooth, put me on an antibiotic, gave me some vicodins, and sent me on my way. A week later I had the tooth pulled (I had already had a root canal on this tooth 3 years before. I still experienced pain. 2 more rounds of antibiotics did nothing. Then about 2 months ago horrible pain again that lasted for 2 days straight. My GP told me to see my dentist...my dentist said it wasn't my teeth and to see my GP. Finally, I was able to convince my GP (after lots of crying) to let me see a neurologist (actually, his nurse helped me). Now I am on Lyrica and so far seems to be helping. Best of luck to you Jeff!!

8

Hello Jeff and welcome to the group. Go and read my profile so you can see my story of what happened to me. I thought it was dental, but it was TN. I am sorry the meds aren't working right away for you. I noticed a difference by the next morning, but I was lucky. I was on 100mg twice a day for about a week, then upped to 100 in morning and 200 at night, then upped to 200mg twice a day. I have had to increase my meds twice because they stopped working. I am currently on 400mg 3 times a day (they tried to do 600mg twice a day, but I couldn't function like that, so I split the dose). It finally started working after about 14 days. I have an appointment with a neuro on the 16th. MRI's do not usually show compressions. They are done to rule out MS or tumors. TN is usually diagnosed by symptoms and trying the carbamazepine. Best of luck to you! Let us know how things go.

9

So the endodontist says with 100% confidence that I need a root canal. I filled her in on the entire episode I went through, and she did mention that it could be both TN and a tooth issue, but first things first is to fix the "dead dead" tooth... She mentioned it's odd that I was in that much pain and that it radiated as far as it did... into my lips and tongue. I've got an appointment to get it fixed on Wednesday and an appointment with my GP next Wednesday... I'll be able to discuss with him whether to proceed with an MRI, etc...

Hoping it's just the tooth issue though.

10

I agree with Cleo. I also took antibiotics for three weeks after because of the abcess and all the swelling after the root canals. Don’t be surprised if you get more swelling in you face after your root canal. Make sure you report it if you do and ask for the antibiotics if they aren’t offered to you. I wish you the best…Kathy

11

I had them pull 2 of my teeth before i found out its TN

JazzyJeff said:

...just went to get a second opinon from a different dentist. He's 99% sure I need a root canal and it's not TN...

NOW WHAT?!? Do I go ahead with the root canal and hope that's all it is??? My dentist and another dentist in his office says it's not the tooth...

ugh.

I guess if I go through with the root canal at least I can rule that out if it doesn't help me!!

12

Sorry your going through such pain. I hope your dr helps soon. My TN affects my tounge and lips rather than my jaw. my Mri didnt show any compression and I am hoping for for a referal to neurologist when I go to gp next week.

13

Proceed with caution!!! It is common for TN patients to have dental procedures that they don’t need. A dentist should not go forward with a root canal, etc unless he is CERTAIN and you should probably get a second opinion as well. Please see a neurologist if you haven’t already. And ditto to KC’s post. I’m so sorry you are experiencing this pain. I went through and am going through something similar and it has been profoundly difficult.

14

Thank you for the info Kc Dancer! I am brand new to this disease too. I was just diagnosed last Thursday. I was SO lucky. After 3 days of pain, I went to my GP who immediately thought it was TN or Cluster headaches and referred me to a neurologist right away who easily diagnosed TN just based on my symptoms - classic electric shocks, unimaginable pain on just my left side. I have my MRI and MRA tomorrow. I am on 450mg/day of Trileptal, split in 3 doses. The side effects were bad the first two days - nausea, dizziness and a little vision jumping but that's gone now and I just feel very tired. The pain is not 100% gone but it is mostly gone most of the time. It seems to be getting a little better each day but it's only been 4 days. I'm learning all that I can. I am not a fan or drugs at all so I am heavily researching MVD but do have to wait 6 months before insurance would cover it anyways and I'm really putting the "cart before the horse" not even having my MRA yet. Thanks for the great info!! I really love this support group. It has helped me tremendously in my early days of this horrible disease.


Kc Dancer Kc said:

You should be prepared to read and study and learn. Your GP will probably send you to a neurologist -- they will do MRI to rule out MS or brain tumor -- MOST MRI do NOT show TN --

If you have TN2/atypical - more burning constant pain in mouth neurontin is a good start

If you have lightning zaps come and go - that is type I = responds better to trileptal

If you have any immediate questions about side effects call pharmacist - underutilized

Get the Book "Striking Back" by Dr. Ken Casey.... TN does not go away... it only goes into remission ALSO read the face pain info tab above

If you ever consider an operation called MVD - it is better to do before ANY other invasive proceedure - and always pick a neurosurgeon who has MANY tn patients.

Narcotics sometimes take the edge off pain - mostly not

You can ask for Lidocaine prescription face patches/ face cream or for inside mouth pain Lidocaine mouthwash.

Don't try to "man up" let people know what you are going thru - the more you read, the better you can explain --- we are only 12 in 100,000!!!

That is why you need to know all you can know about this! If your meds make you too ditzy to research - have somebody do it for you - knowledge is power here!

Keep Posting !!!

15

If the carbamazepine isn't doing the trick perhaps you need to up the dose. I am on 200 mg ER twice a day with a 100 mg chew tab "booster" at around 3 p.m. Unfortunately the MRI's are not (to my understanding) the only way to diagnose. The best is the questions that they ask as well as your answers. At onset did it feel like little dwarfs were in your gums having at it with axes? (nice explanation huh?)

Good luck Jeff on your journey. My gums were red and sore but I needed a root canal as well. The tooth pain was the first thing to surface over a year ago and I was diagnosed in August.

Chris