Hi I am so frustrated with whats going on with me. It started after I went to dentist for cleaning. The dentist broke a tooth and I had tooth removed due to thoughts of it causing the facial nerve pain. I had no relief after that. I have attacks of excruciating pain on left side including upper lip, front upper teeth, and nose. It hurts to touch upper lip and can not kiss anyone. It is difficult to wash face, eat, drink, or brush teeth. This has been going on for 3 months. I have been to several dentists and my PCP. At my last visit they said it was a sinus infection (after a CT scan) and prescribed antibiotics and amitriptyline for nerve pain. I have no other symptoms of a sinus infection. I am done with antibiotics and it seems my attacks are getting more frequent and pain is tremendous. Others think I am crazy because a majority of the time I am fine. I am having about 20 small attacks like stabbing and electric jolts and usually one big attack like a cramp in that area that brings tears to my eyes. They only last for a few seconds to a minute, but I am so anxious and depressed just waiting for another one to occur. I am 35 years old and have never been though something like this. I have been trying not to tense my mouth and deep breathing when it happens. This seems to help some. I am going back to the doctor soon. A doctor friend thinks I may have TN but thought I was too young to have it. He suggested Topamax. I have been taking lyrica 50 mg 3 times a day right now. I don't think it has helped but only been on for 2 days. I have read alot about TN and it helps to read forums to know that others have this. Just wanted to introduce myself. Im open to any suggestions and learning about medications that has worked for others.

OK,,,,I'm not an MD so take this as is,,,but that sounds like classic cause (dental) and classic TN.

Don't believe the age factor,, you can look on this forum and see lots of people in their early 20's with it....to hell with your PCP get a referral to a Neurologist...Now.

Lyrica might help but in my limited experience it's not the best drug to start with. Tegretol is. The side effects can be difficult at first but first, it's usually the best drug to help diagnose if it is TN and second after a few months the side effects can diminish as your body gets used to it...
Lyrica is usually a second or "mix" drug. If you've been taking a drug for some time and it's been working but now you get to a point where it's not doing quite as well as it did they will often add a drug to see if the combination or "cocktail" of the two works better,,,,that's usually where Lyrica does its best.

Now, please remember that everyone's systems are different and no one I've met has ever taken the same meds or doses as I have...it's very individualized,,,it will be for you too. You will need to stay open to what a Neuro suggests and what drugs he/she may feel are best for you especially if you have any medical conditions...

Look for a Neuro that Listens to you and takes your pain seriously. Start keeping a pain journal,, see if you can find any triggers that set it off or even if the time of day is involved...it helps the MD for you to know as much about your pain as you can so you can help him understand it.

Don't be afraid to get a second opinion especially if you don't "click" with the MD,, they are a partner in your health and even if you have insurance you are paying for a service,,part of that service is listening to you!!

I would suggest, because it can't hurt, get rid of aspartame, MSG and caffeine (or limit the caffeine) also quit using anything that has a tooth whitener in it,,,they can all effect the severity of the attacks. And start on a good B complex Vitamin,,,the B vitamins help rebuild the mylean sheath around the nerve,,if it is TN it will help,,it takes a little while but a B complex is always a good one anyway...

So hopefully this helps and gets you started in a good direction,,remember we are here for you and have been where you are so nothing you say will sound crazy and we all believe you....unlike some MD's sometimes!!!

Let us know what happens,,,,,Beth

Thanks. I went to a doctor two days ago and they diagnosed it as TN and want me to have a MRI to rule out tumors and such. They placed me on Topamax, 25mg to start and ending in 100mg by one month. They said it could take a month to work. I am not happy with this since the pain is awful. I will def try the B vitamins and stop using the whitening toothpaste. I have a hard time as is to brush top teeth without pain. I heard drinking a lot of water helps with the myelin sheath as well. Is there other things I can try at home that will help? I didn't know if I should try hot or cold compresses, I did not want to make it worse. I was wondering if there are times of the day that it appears to be worse for others? I have most of my attacks in the early morning and evening.
Thanks

Ok, so you have a tentative diagnosis of TN until they rule out tumors, MS and the like,,,,

Well Topomax can work faster than you think,, always say this to yourself,,let it be your mantra,,,everyone is different.
What may take someone else a month may only take you a few weeks,,so don't give up hope..
The meds,,ok first thing you need to learn is that as long as you do not exceed your MD's daily dosage how you take it will be something you learn that will be best for you.
If they say take it twice a day you may find that it makes you too groggy or it doesn't last 12 hours but breaking the same dose into 3 times a day may work better...a lot of managing this is being wiling to take control of your own health care and sometimes demanding that they give you good health care.

This is a difficult disorder but since it's not life threatening sometimes we don't get to the top of the appointment list or return phone call priority... you may have to push but don't be afraid to..your MD's, meds,support structure and yourself all make up the team that helps you learn to control this and it can be controlled and is (after a while) for most people. So don't ever loose hope,,,ok?

Well, as I said aspartame is a killer so no more diet anything unless its Splenda or something similar, MSG which is usually easier to avoid but start looking at labels you'll be surprised. Caffeine, try and limit to one beverage a day,,, and the hidden one of tooth whiteners,,they increase the sensitivity in the teeth and the nerves. My dentist, she's been one for decades and has dealt with TN before (my blessing) says on days that the pain is too high brush what you can and use Listerine, even the non-alcohol one and use that. It's not perfect but sometimes we all have to compromise, she says it will keep the gums in good shape and is better than killing yourself when it hurts too much....now its not pleasant. It's painful too but not nearly as much, so it's a good fall back. If you have issues with white teeth,,, the old way still works a few times a week use hydrogen peroxide and the brush with baking soda,,keeps the gums healthy and teeth white,,,our mothers did it,,,,well maybe not yours,,I'm a lot older!!!

Alright things you can do, B complex also a good multi vitamin high in Selenium. The basics, eat healthy get rid of as much processed food as you can drink water because it helps your body get rid of the toxins from any medications,,,it does help. What you are trying to do is build your immune system and keep it healthy.

Sleep is not a luxury it's a necessity and lots of it,,your body repairs itself during sleep and you may find higher doses make you groggy. If you are not sleeping because of pain get some Ambien from your MD or a good OTC. You must sleep!
As a quick side note, many of these medications can make you groggy but if you can manage a few months very often your body will adjust and it won't be as bad,,,most people jump too soon to change a med because of the fatigue, my rule is at least 2 months ,,3 if you can,,if the side effects have not lessened by then they aren't going to so then talk to your MD about another med,,,,however if you are getting good pain coverage it probably makes more sense to try and change the dosing schedule and you may solve your own problem that way. I went for years taking meds every 6 hrs because they didn't last long enough,,,so I decided what I was going to take and when and it worked for almost a decade that way,,,,

The bane of our existence,,,,stress,,get rid of as much as you can, exercise if you can that's great, if not learn what really matters and what doesn't,,,this comes from a very type A personality,,trust me,, no more road rage,,keep the stress down....

Here's one I give that very few people do and I think it's crucial. Learn to meditate. Even if all you do is get a relaxation CD that helps you learn to breath,,,,DO IT!!!
you can lessen or occasionally prevent a bad attack if you learn to breath through it,,the only way to do that effectively is practice it when your not in agony so that when you are,,you're prepared....If you want it to be a spiritual meditation that's fine, as long as you relax and learn to breath. I do both depending on what I need the most at the time...and work up to at least 30 min, start less because it's too much otherwise,,,,but remember your health is worth 30 minutes a day to stay sane and help control the pain,,,,,I wish I could get more people to understand the necessity of this.

I would also check the TNA website to see if there is a support group in your area of close enough to try going....things really changed for me when I finally met someone else with this disorder,,,it was like I really wasn't alone in this,,,for me it helped a lot,,,I had had TN for 2years before I met someone else with it,,,I had become so isolated,,,,look into it,,,,nothing to loose!

Go online to either the TNA website or Amazon and buy the book "Striking Back",,it is probably the only really good book written about TN and refer to it as you need to,,,a lot of it is anecdotal but you will most likely see yourself somewhere in there,,,,I did.

If you're getting afraid of going out in public for fear of an attack or if you work/school,,,a good way to deal with situations like this is go online to webMD or Harvard Med ,,,,just go to a reputable site and find the description of TN and print it out,,it can help in situations where people, friends, family, boss just doesn't get it,,or doesn't want to believe you because "you don't look sick" always keep some with you and hand them out to people you may have problems with,,,,you can also print out info on the meds that you may be taking and highlight the side effects if your having trouble with excess fatigue and getting a boss to understand it,,,,,,I have used this "tactic" with many people over the years and in fact all too often I hear ," well I have symptoms like that or my mom does" I have gotten more than a few total strangers to go get help early before the disorder gets harder to control,,,so don't be afraid, try and live your life as normally as possible.

That's the basics,,,start here and don't overload what you can do with this...it's not the kind of disorder that you can google and learn everything about and work on fixing it,,it's the kind of disorder that you grow with over time in understanding yourself and learning to control it.

This is among the most individualized disorders out there, you have to find how you are going to handle it,,it can't be my way,,I can give you all that I know and I will,,,,willingly but in the end you will have to find out how you are going to manage it.......
Everyone here has been where you are and we get it, we will never think you're crazy or not believe you,,,and there are enough good people on here to have a lot more answers than what I can give, but this is a start for you,,,

I'm in Cleveland now getting reprogrammed,,,,if you're interested you can look under the PENS thread,,,but please remember that the system mentioned there is still experimental and only for extremely severe cases and you will most likely never get that bad,,,,that being said,,I'm out of town until Thursday,,but after that if you need to talk I can always make time,,you can private message me and we can arrange a time that works,,,don't be afraid to ask for help especially while you're trying to get the pain under control,, you need it,,,,so if you need to talk,,just ask,,it's no problem.

Most of all remember that you are not alone, we are all here for you to help and understand.,,,,Keep coming back and stay involved,,we are all rooting for you

Hope this helps ,,,,Beth

Thanks Beth for all the helpful information.

Brandy

I just wanted to stop by and say Welcome to Neuro Talk. I am sorry you are having this condition. The other post is so well written, I can't add much at all. Do follow advice and see a good neruologist. This can happen at any age, and it is important to get to the right kind of help. I do hope you can find a good resolution for this condition. ginnie

Brandy,,,,
Hope I didn't hit you with too much at once,,I can do that sometimes,,,but remember if you need to talk the door is open,,just private message me anytime and we can work something out,,,it can help to get some of this stuff off your chest especially to someone whose been there,,,,it's not an imposition,,I do it all the time,,let me know if you need me.

Hang in there and keep us posted on how you're doing
Beth

Thanks again. I had MRI done, so just waiting on results. It must not be anything serious since they did not say anything yesterday when I had it done. I am increasing the Topamax tomorrow, hopefully that helps. I am having a hard time in general with the pain coming and doing throughout the day. I am doing deep breathing and drinking alot of water.


Im not sure how to private message either

Brandy

Can I get a link to that TNA website with the support groups?

Well.....TNA used to be tna.org,,you can try that and see if it redirects you....the new site (same place just updated) is facialpain.org,,,I think..

Just try googling TNA and it's a little ways down on the page look for something that says facial pain and that's them

I feel terrible that I don't know the proper address for them since I think I am still listed as a SGL which is great because that means I can still take phone calls for my area....

If you can't find it let me know and I'll dig it out,,unless someone else on the forum knows what the correct address for them is???