Hello…My name is Kelly…I was diagnosed with Type 2 TN 8 months ago after a my dentist messed up doing a crown and hit my nerve. Since then it has been an ongoing battle for me that no one seems to understand. People like to keep telling me how to fix it and what I need to do. I hate that!! This is the worst pain I have ever felt!! I have to everything I do…The wrong move could put me in a ton of pain. I take 600mg of Tegretol, Prozac & Ativan. I am now having the pain go into my ear from loud noise. I keep cotton balls with me to try to help. But this has changed my life. Plus the Tegretol has horrible Photosensitivity side effects which has made me become a “vampire” as my husband calls me. I feel like I can’t be a good wife or mother like this…I have so many limitations…so many things I can’t do. I have become quite depressed…I have a husky and two 5 month old kittens who really help me since I am always stuck indoors. I try to keep my mind busy with games, house cleaning and watching my movies. But when the pain hits, it hurts so bad I can’t even cry and I wonder all the time how am I going to live my life like this. I’m 39 years old and I have had this for 8 months and I feel like my life is pretty much over.
Kelly,
You might want to try reaching out to Dr D’Amato in Rhode Island. For cases where the root cause behind the TN is known, the type of treatment he provides can be very effective. It is a pain management treatment, not a cure, which means you might need to return periodically. However, there are no side effects and the treatment is risk free (albeit somewhat costly).
Nerves absolutely do not like to be tampered with, and can be very difficult to treat once they have been irritated. As in all things TN, there are no guarantees, so I would not recommend hanging all your hopes on this, but look into it, it may be worth a shot. His procedure has worked very, very well for other neuropathic pain, even severe cases like RSD, but TN treatment has had mixed results. Again, a lot of that seems to correlate to whether or not the nerve is firing off inappropriately, or if there is a legitimate issue causing it to do so (ie: vascular compression, viral issues, TMJ, etc).
~Sean
Hi Kelly, I am a TN1 sufferer so my condition is a bit different, but I just wanted to drop you a line to say don’t give up. When this problem is new and you are in the depths of it, it can seem very bleak indeed, but remissions are not only possible but likely - damaged things heal, things change. Also, because yours is a more mechanical issue with what appears to be a clear-cut cause then you have a better chance of being able to get a fix for it. At least your doctors know where to look! If the nerve has been damaged physically it may well heal on its own. I’m not being woo-woo when I suggest trying self-hypnosis CDs (or online downloads). If you get one for healing, or even just a bog-standard relaxation one, you can use it to visualise the nerve healing. This can help by giving the body (or the brain!) a clear-cut instruction to get to work fixing the damage. With Tegretol you feel zonked out anyway; hypnosis is easier when you are beyond calm! But aside from that keep pushing to see if there is anyone who can actually repair the nerve for you.
Depression is absolutely normal, don’t feel you have to fight it. Instead try and work with your body to see if you can repair the damage. Remember, it will be very much aware that it isn’t working right and will actually be trying to fix it, so give it a hand! Meanwhile you can do all the pragmatic stuff you are able to do and look on Dr Google and anywhere else you can think of to see if you can find someone who may be able to help you. Oh, and sue the dentist, for as much as you can - you can use his money to pay for your treatment; after all, he owes you!
I hope things work out for you. Please try to keep your chin up. A little hope can go a long way so hang onto it.
Kelly you need to try a tricyclic antidepressants such as Elavil or Doxepin which I take for type 2 TN.
Also, try Capsician cream over the counter or compound cream prescribed by your doctor on your face near pain
I have no pain while sleeping with this condition.
My pain is not completely gone but I am able to work.
I have found that tricyclic antidepressants have less side effects than antiseizure. you have to keep increasing dosage every 3 months with antiseizure. I had too many serious side effects from Lyrica, and an horrific withdrawal lasting 4 months.
Doxepin 25mg. 3 times a day - this is what I take.
It will make you very sleepy at first but will go away.
Tricyclic antidepressants is what works best on TN2
Antiseizure works best on TN1.
This is also recommended by Red on this website.
Also, I put Capsician cream back of ear, front of ear, and under the jaw line on same side.
I have had this condition off and on for three years.
I went into remission but it came back when I had my teeth clean.
Chew peppermint gum, peppermint lifesavers, or apply peppermint oil to gum or skin. This will calm it down.
I will occasionally take. Tramodal or Xanax which helps a lot if I don’t wait to late. I do this 1 to 2 times a week so I don’t build up tolerant.
I take Lexapro 10mg before bed, not during the daytime.
I am 65 year old, still working 32 hours a week.
I am able to enjoy most of the time with my family.
I do still have mild to moderate pain that come and go which
Is annoying but doesn’t stop me.
I hope I have help you. Mine was dental too.
Hi Kelly,
I’m so sorry to hear you are suffering. I, too, have a dental nerve injury that occurred in Feb 2015. I’m diagnosed with TN2, or specifically, trigeminal neuropathic pain (when caused from trauma or injury.) I have been through quite a bit- several surgeries and many different medication combinations. I’m 38, have 2 young boys and work as a psychotherapist 32 hours per week. Getting to a place where I could function- mostly care for my boys and work- has been a journey. I completely agree with Linda - tricyclic antidepressants have been most effective for our type of pain. I take nortriptyline 20-30mg and 900mg trileptal. Trileptal never took care of the pain alone. I also now have a PNS (peripheral nerve stimulator) implanted. The combo of meds and the stim have been incredibly helpful. I have talked to many people, who often find relief with just the right combo of meds, but you have to keep trying to see what works for you. You have to. It’s going to get better, but yes it can be quite a journey.
I am going to try the capsaicin cream (thanks Linda) for any breakthrough pain. Prior to my stim implant, I used lidicous viscous and very thin molds for my bottom teeth (the kind your dentist might make you as a whitening tray.) Some experts say it can distract your mouth from the pain - and it did. Let us know how you’re doing and what you’re finding helpful.
Stacia
Kelly I have some more tips on handling your pain.
I couldn’t take antiseizure drugs so my doctor wrote a RX for a compound cream which works very well.
I got the formula from another patient on this website.
You have to find a speciality pharmacy - just google it in your town. Sometimes insurance company will not pay for it.
Mine costed $120.00 per months.
Here is the formula:
6% Gabapentin (antiseizure drug)
1% Bupifocaine
10% Ketamine
10% Ketoprofen
You apply it 4 times a day on face especially where pain is -
Jaw line, behind and front of ear, cheek and above lip.
It works very well. Some will have Capsician added but I didn’t since I could buy it over counter.
The only sides effects I noticed after one month usage was short term memory and dropping thing a lot.
But this only lasted a few weeks.
Also I used B12 under the tongue - Superior Source B-12
5000mcg three times a week. This help heal the nerve.
A lot of members use Nortriptyline which is a tricyclic
Antidepressants like the Doxepin that I take.
My diagnosis was Trigeminal neuropathic pain from dental injury. First year was very frightening and painful.
As time goes by I have learn ways to deal with it. New pain - apply there - Capsician cream or compound or both. I don’t get upset when it happens like I use to.
You will have remissions, and read all you can on this website.
This has the most information and tips which you can try.
Hi Kelly If you go to the ER ask that dilantin be given, this will stop the attacks. This is not a long term treatment but can save you the agony. Carbamazipine should help you manage this for a long term drug if you can tolerate it. If not there are others than can be tried as a stand alone or in combination with other classes of drugs. Hope this helps
Just a warning. I tried nortriptyline for 9 days and now can’t taste a thing.
I wanted to give you more than just a warning. Please don’t give up, it does get easier to deal with. You will learn what works for you and begin to be able to deal with it. I remember when I first found out I was devastated. It took me a long time but It begins to feel just like life. Yes, it sucks but so do a lot of things in life. A friend used to say “Life’s tough, get a helmet” lol
Take care
Thank you so much!!! You made me laugh…I’m trying to readjust to make life work for me and hope that the people in my life will too. This meant a lot… Kelly