Do I really have TN? (Full story + cliff notes)
 

I'm not really good at telling stories. Never have been.

I have been diagnosed with TN by my GP.


Before the time this started I have NEVER had any issues. The beginning of this story is the beginning of my pain.

In late October I began to feel pressure in a couple of my bottom right teeth. Pressure. Not pain. This persisted 3-4 days and went away.

The following week it came back as pain. This pain jumped from my bottom right teeth to my top right teeth.

- Saw Dentist. Was given cipro. No effect.
- Saw Doctor. Agreed with dentist.

That weekend I experienced the worst pain of my life. You know what this is like. No need to tell you. Pain jumped from bottom right to top right. It was terrible. Hospital could not help.

That following Monday I saw my dentist again who said "Hmm... this may be TN." I was given a prescription (persists today) to Demerol. She gave me 5 shots in the mouth.

I saw my doctor who agreed that this was likely TN.

I did an MRI to rule out MS. I do not have MS and my MRI is normal.


For a few days after seeing my dentist+doctor I had the "feeling" inside my tooth. This has gone away. Full X-Ray showed nothing wrong with teeth.


The only persisting pain, that I ever have, comes from the tooth to the right of my "vampire tooth." I can wiggle this tooth at any time, night or day and it gives me electric shocks.

Demerol, Hydrocodone and Percocet do not fully relieve the pain but obviously I "feel better."


I am currently on 600mg (200x3) of tegretol and 50mg of Demerol as needed.


Like I said, the only pain I have ever had since this has happened is from this one tooth.


Do I REALLY have TN?



Cliffs:

- Pressure started in tooth. Went away. Came back as AWFUL pain.
- Saw Dentist+GP, diagnosed as TN. Full X-Ray done on teeth and they are perfect.
- Tegreol may relieve the pain, but I am unsure until I come off it in January.



My concern is YES, I did have TN-esque symptoms two months ago, but since then the only pain I get is from one tooth. The pain comes when it is cold or random.



Thanks for reading and replying. Like I say, I'm no good at telling stories. If you need clarification on anything I can provide.

Yes!
 

Hi there... I was diagnosed with TN/ATN by my dentist, who then referred me to my GP.

I too had tooth problems, and then after numerous tests and exams, they determined it wasn't a tooth problem.

I've been on Tegretol. However, I couldn't handle the side effects while having to work 40hrs/week. It wasn't working well wiht my body.

Now, i'm on Topomax and Vicodin for pain. Not working either. I'm due to see my neurologist on Jan 7, so we'll probably end up changing my medications then.

I know it's really hard to tell if u have TN or not because they're not the "electric shock" "zapps" like from regular TN. My symptoms are intermittent (on and off) pressure like pain, goes from my upper left teeth and bottom left teeth. sometimes all the way to my jaw and cheekbones.

But i've asked numerous times as well, if my symptoms are in fact TN/ATN. Everyone has different types of pain, symptoms and TN or ATN. I think yours and mine are the same. So please, feel free to send me a message or keep posting if you have questions.

Tegretol is the primary medication which could gradually increase. It's good to have pain meds too. My only problem is, my attacks come so quickly, there's no time for the medications to react. So sometimes, i'd rather take the pain than take the meds, because by the time it starts to take effect, the pain is gone...I wish there were something that instantly relieves pain.

By the way, my pain lasts from approximately 15minutes - 30 minutes. Typically, it's been happening every night, 4 times a day sometimes, in the past 2 years, it has come and go - with gaps of 2 months, or as little as 2 days...

Jenna

Thank you for responding Jenna. My name is Kenton.

Yes, it seems we may have similar symptoms. Something odd about mine is "it's always there."

I can wiggle the one tooth that I get typical pain from at any time of the day and get a shock or two. If I'm drinking a cold drink sometimes I get pain from this tooth. What scares me is when I randomly get sensations from other teeth because it reminds me of my flare up weekend.

I've had this tooth area X-ray'd 3 times so I absolutely know without a shadow of a doubt this is not dental.


What do you think about this? Thank you as always for a response

125 views and 1 response?

Please people. Please.

hello Random :)

it's the Holidays and many of our members are away or doing things with family

The views that you see do not only count members, but also unregistered guests who are just reading the forums, as well as search engine "bots" indexing posts.

Hi Kenton... It seems like you have TN. There was a period in 2006 where my pain was constant as well, feeling like a real toothache for a few weeks. Nowadays, i just get my attacks.

I typically get attacks if i eat something hot on the side of my face/teeth - left side.. the attack feels like ... pain crawling up from my jaw to my teeth. but when the attack happens, i can't open my jaw, talk, move, all my teeth in my left side are equally affected - upper and lower, sometimes goes to my sinus. For some reason, i get it every night too. which freaks me out. I never want night-time to come because of this...

I went to sooooo many tests 3 different xrays as well. 1 in 2006, 2 in 2009. saw a dentist and saw an endodontist who almost did my "repeat" root canal. But then he figured out its not a tooth problem. he did nerve and tooth blocks on me too.

The medications take a while to work in your system at least a month. I'm just going on a month and i've tried 2 diff meds - like i said. So this is just the beginning, but be glad, you're finally on the right track. And never let anyone pull any of your teeth without being sure, i've heard too many horror stories...

jenna

Thank you Jenna. Talking to people like you prevents me from exercising the "nickname" for our condition.

I am seeing my GP on the 15th and he will refer me at that time to a neurologist but I am told it may be months before I see one.

It just seems strange that I do not exhibit typical TN symptoms:

- Wind on face = trigger
- Touching face = trigger (nothing I do physically to my face makes it better or worse -- only touching the tooth)
- Random shocks/volts to the face


I do not experience any of that anymore. Like I described in the previous story, my TN started out as a terrible weekend of my teeth feeling like they were compressing and were about to shatter.

My dentist did 5 shots and numbed it for then.

Ever since then basically the only real pain I have is when I touch/wiggle this tooth. When I don't either I feel 9/10 great or I feel slight pressure in the tooth.

I feel like some of the other 'sensations' I get from other teeth may be mental as I never truly get a big shock in any other teeth.

I truly feel like perhaps I am one of the "lucky" TN sufferers, if I do have TN. Most of the time, if I am distracted, I don't think about my TN. But like you, I AM VERY PARANOID ABOUT NIGHT COMING. I need my sleep like you and everyone else here.


I am 25, slightly overweight and married. My wife and I are wanting to have children and.... this is scary.

I live in rural Arkansas (though, in the largest city in the state -- it is still very rural!) and few around here know of this conditon.

Not to mention the only hospital in the state with a GK (only 10 minutes away!) no longer has a GK surgeon (how lucky of me... ::rolls eyes::)

If there's any more details you would like that would help you determine more about my condition please ask away.

Random glad you found us but sorry about the pain your having. It sounds like T.N. to me also.
How do you sleep at night? do you lie flat or..like me sleep in a happy recline chair?
I think the position of head changes the blood flow and may be reason for issues at night trying to sleep. I can not lay on one side of my face or have anything pressing on it...
The best thing to do is see a neuro ...I see you mentioned it may be a bit of time before that happens so I am hoping it happens sooner then planned. Do NOT have any teeth work done unless it is shown to be a necessity. Also take the meds your doctor gives you and let your body adjust and the meds to get into your system . Many of us T.N. folks have to switch and combine meds before we find what works best for us. Everyone is different.
You think it odd you dont show or present Typical symptoms of T.N. yet to me your story / info sounds like many other T.N. people I have been in contact with over the years .


I hope all of US keep you from ever....
exercising the "nickname" for our condition.
If I can help you please dont hesitate in posting or sending me a message by clicking on my name here.
Low pain and good sleeping. . .

Oh have you tried a heating pad on that area sometimes warming the area helps calm the nerve down. maybe try sleeping with head in more of up right position.

Keep us posted on how you are doing and let us know when you get apt with neruo doc.
PEACE
BMW

Hi BMW,

I have not changed my sleeping patterns. I still sleep as likely any of us did before this happened.

I can see how a heating pad would help though. Cold is a trigger for sensations and slight pain either from drinks or weather so I crave heat when I am cold.

I am seeing my GP again for a liver check (tegretol) on 1/15 and I will get the referral then to the neuro.

When I say my situation doesn't sound normal what I mean is I don't have constant burning, searing, OMG WTF kinda pain. What I have 80% of the day is "man what am I feeling in my mouth?". It's not pain but it's like a slight pressure and if I take my thumb and index finger and wiggle the tooth beside the vampire tooth I get what some may call pain.

Whatever this is... it's sure annoying.

As far as teeth work. No one is touching them. I've had a FULL x-ray done and the dentist was dumbfounded (obviously!).

I am lucky though that both my dentist and GP diagnosed this quickly.

I apologize for talk about the "nickname" -- I was depressed about losing my insurance about 3 or 4 months before this happened. I'm the kind of person who NEVER gets sick. I got "sick" once in all of 2009 (Not counting TN)


I just... fear inadequate health care from the United States. I fear my TN becoming worse.

I'm 25, married about a year. Finished college about 10 months before this happened. This is just a punch to the face....no pun intended.

Thank you for your reply BMW.

Random Yes that dose seem like a slap in face just getting done with college and losing insurance then this issue decides to sneek its way into your life. But it is very very good that the Dentist and GP are up front and referring you to a neuro who can dx.
You may be in the early stages of T.N. .It is true that it gets worse but it is also true that many of us with t.n. have remission and are able to enjoy life with out the pain monster gnawing constantly. remission for months, years even. Most find medication or a combo works the best to control T.N. pain. Others find surgery the best option. sometimes it works and for others it has made the issue worse then before surgery. Dont rush into anything without being informed and knowlegeable on things.

Dose your tooth hurt if your tongue rubs against it or rubs the gum area around the tooth?
I think it might be a good idea to write down like you have here in your posts write your symptoms and what you notice
or think is the cause. I do this and it flares and makes pain worse . . . for all your doctors to have in file and for you too .
Have you read the stickies at the top of this page, lots of good info. The book Striking Back is a very very good book to read it is put out by the T.N.A.
Keep posting and let us know how you are doing. Your not alone . We are right here with you.
Wishing very much that things improve insurrance wise and pain wise also.
PEACE
BMW

I can't comment on the TN...

But oral demerol is not a good choice for chronic pain. It is toxic over time and can cause seizures!

Most doctors don't use it anymore orally, or for chronic issues.
It is reserved for acute temporary pain, or post surgical pain.

I have had 2 teeth over the past 20 yrs that started dying and causing horrible face pain. Neither showed up on Xrays as being abnormal. I had root canals in both finally which corrected the problem. The first one was the back upper molar, and I suffered for about 4 yrs with that one. The recent one was the first upper bicuspid on the right, which was giving me sinus pain.

The first one I consulted 1) my reg dentist, 2) oral surgeon -when my jaw locked up, 3) TMJ specialist dentist, and finally the endodontist my dentist referred me to was unsure, but did finally root canal it and it fixed it finally...took 6mos to calm down the pain tho.

You should never rule out a tooth. That is my motto now!

You and I both know this is a pre-existing now and there's really no hope for me insurance-wise except getting on a group plan through my wife. No word on this, yet, either. I don't mean to be so cold towards my situation but hey -- better than denial.

I have already begun to explore moving to other countries to have MVD or GK at a reduced (American cash) price.

When I push against this tooth with my tongue barely anything happens. I eat normally, I chew normally, I distribute food in my mouth normally. I do try, however, to get cold drinks on the left side of my mouth initially before letting it rush to the right side of my mouth. In the week following my initial flareup cold liquid was an EXTREME trigger.

I quit taking the Demerol about a week ago. I've got a random supply of hydrocodone and hydromorphone for pain. I NEVER use these during the day (why?) and I don't use these EVERY night. Some nights? Yes. Every night? No.

I think this is TN however, I just don't want to admit it. I have random face numbness in what I believe is the 5th. So... :(


But really: BMW, mrsD: I'm not really as cold and upset as I sound. I just haven't gotten the answers I need yet (neuro), I have no insurance ($$$$$$), the company I worked for for 9 years is shutting down at the end of January after 19 years.

The good in my life: I'm young. I have few other health issues. I have an amazing and wonderful wife and I love my cat.

I wanted to post a picture of my cat and my wife but sadly... I need 5 more posts :]

About the Demerol and the teeth:

I've (taken myself) off the Demerol and had some fairly bad W/D symptoms. After 7 weeks of regular usage I image it would be difficult to quit using it and it was. I will mention to my doctor on the 15th my difficulties with it -- however -- I need something for the pain.

I've seen two dentists and had 3 X-rays on the area. I've had 1 complete X-ray of the entire mouth.

What are your suggestions from here? THANK YOU

Hi Random. Where I live they are bad at anything to do with TN all they do is hand out Tegratol and say start low work up. I have been suffering for years on and off every time pain is different. Last year had it for 6 moths & its still going almost constant now. I dare not take Tegratol as I am disabled and have bad nerve problems and have been told drugs do more damage long term soam stuck. I am thinking of you your wife & ***** cat. Huggs for you all xxxxx Jackie. :grouphug::grouphug:

It is really hard to say when teeth are in the picture.

I never had pain in my teeth that were dying... I could eat, chew, and there was no swelling. All my issues were in the face and sinuses. The first molar was draining into my maxillary sinus on the left side. It caused alot of jaw--mandibular aching and spasms. My recent one had no pain either, and until it cracked off I had no clue that my nose bleeds and cheek pain were tooth
oriented. The dentist didn't waffle with this one! I was waking up every night with a pounding heart and anxiety... but no specific pain. Once that tooth was reamed out, I have returned to normal sleep patterns!

I will comment on the Cipro however. This drug causes Peripheral Neuropathies, and we discuss it often on our PN board.
You can read more about it if Google it, there are many people on the net complaining about it.
And some doctors will be up front about it too:
http://www.medicationsense.com/artic...cs_052205.html
and
http://en.wikipedia.org/wiki/Ciprofloxacin
scroll down to Adverse reactions.

When I had my first root canal, I had to take Doxycycline before and after. That worked pretty well. I have not seen dentists use Cipro often. I think that is odd.

(I couldn't quote you b/c my lack of posts and your links. I need 3 more posts to post images/links)


I didn't really take the Cipro. When she showed me the X-Rays of my gums and they weren't inflamed I didn't really take it.

By "I didn't really take it", I mean.. I may've taken up to 3 before I KNEW it wasn't working. I am not too worried this was caused by Cipro as it was around before I ever took it but thank you for the information. The Cipro was given after she Rx'd some weaker anti-biotics. I took those as directed for several days before I realized something was wrong.

During the weekend of hell in October it just felt like the tooth was trying to compress itsself from the inside.

Like, you can take your hands and put them on opposite sides of a basketball. Using both hands push towards the center of the basketball.

Imagine the tooth was the basketball and imagine the tooth walls were trying to cave in. That's the best way to explain how the pain was.

I haven't experienced that since that weekend, but you can imagine I am now very paranoid, depressed and fearful that this will happen again. My quality of life has vastly decreased since the 'diagnosis' of TN.