I am recently diagnosed with TN and the pain seems to only get worse with each new day! I have the electric, stabbing, shock like symptoms that seem to last from a few seconds to minutes and then I have the tooth sensitivity where I can't put anything in my mouth hot or cold without winching with pain. My job is a contact representative but I can't hold a full conversation without pain. I also sing in church but I can't open my mouth some days to even speak let alone sing. I can't brush my teeth without crying. I can't eat or drink without shocks going through my face that make me want to pull all my teeth out! I can't sleep a full night without waking up in pain, sometimes so bad I have to cover my mouth to keep from screaming! I am miserable and while I have my family, it just doesn't seem to help. I am now on my second medication without any real results so I am now considering surgery, but hesitate because I don't know if there are any surgeons in my area that deal with TN. While my neurologist is awesome I don't think he has had many cases of TN to really be able to know the distress I am in-even though when he calls I can barely open my mouth to respond to his questions-go figure!
Looking for support, help, guidance, help, remedies, help, direction and help!
It must be Teeth sensitivity day…mine are bad today too…I drink threw a straw…hoping that helps and I just tried orajel … Relief for a minute…wish you lots of luck!!
Hi moretolove,
I just copy pasted the below text that I wrote this morning to another member here, I hope some of it is helpful to you…
It’s important to note that currently there is no cure for TN.
BUT, that being said certain procedures have been found to offer long lasting relief.
BUT, there are no guarantees.
My advice to anyone diagnosed with TN is this;
read as much as you can about TN, you’ll soon see there are no two cases alike. We all share similarities but that’s it. So what works for one doesn’t necessarily work for another.
Knowledge is power. We can learn from each other.
pain control is most important. Have open communication with your prescribing doctor or neurologist. At your appointments discuss how your meds are working for you, know before you leave how to safely increase your dose should you need it. Meds can work for months or years but sometimes they only work at a certain dose for only so long. It can take time to build up to a therapeutic dose.
Many people with TN don’t give the medication a chance to work before they switch to another med…so give your med a chance by slowly increasing until you find relief. If you’ve reached high levels with no relief, time to change it up.
Ask about side effects, read and know what to expect and what is normal.
Ask about whether or not you need to have blood work done to ensure you are not at toxic levels, for each of us that level is different.
Ask your doctor about what he/she thinks is an adequate amount of time pain free when you can start to reduce your med(s).
( for me my neuro always says 4-6 weeks pain free and then he gives me direction on how to reduce. This should be done to see if you are in remission. No sense taking meds if you don’t need them.)
As an example after 9 months of bilateral TN after first diagnosed, I weaned off my med and had an 8 year remission on right side and 10 year remission on my left side!!
research has shown that TN gets worse over time, it seems to be a general consensus.
So really important to read and learn about other options if the meds no longer work. Sometimes you just need to change or add meds to find relief other times different procedures may be offered to you.
AND this is where I say I think it’s REALLY important to read about every procedure and alternative therapy available to treat TN. BEFORE you are in a pain crisis.
You don’t want to make a decision on treatment out of desperation!!
Know the risks and read of others experiences with ALL the procedures.
Meet with a few neurosurgeons who specialize in TN to consult on your case.
You want the most experienced. Try and talk to patients with TN who have had the procedure with that specific neurosurgeon. Like calling references. So important.
It has been said that the sooner in your course with TN you get an MVD, the better the outcome. Keep that in mind. Although in my case I didn’t know that and when my TN came out of remission it eventually got worse and became med resistant and I had my MVD this past April, 11 years after diagnosis.
Research also shows that mvds don’t have as great an outcome for Type 2 as compared to Type 1, but in my case so far so good.
No compressions ever showed on any of my MRIs over the course of 11 years…and yet I had 3 compressions.
TN is not black and white, there is a lot of grey…inform yourself, advocate for yourself and know your options.
Pain relief is attainable, it unfortunately takes time, plus trial and error …unless your TN becomes resistant to meds.
I forgot to add that I found a lidocaine mixed cream called Emla that really helped take the edge off my pain, in Canada its sold over the counter.
My saving grace though was a heating pad that helped ease the pain too.
When my TN became med resistant, nothing took away the pain but the above mentioned things helped keep my sanity and took the edge off.
Hey there…in USA you can have your neuro call in lidocaine mouthwash, and lidocaine patches for great chance at instant relief…don’t wait!
Look at doctors tab…above…any neurosurgeons in your state or the next one over? I went from Missouri to Michigan for my MVD…because he’s the top dog…
His book is what you should get so you can see all treatment options, just know since that book was published, the update would be, is to consider MVD before any nerve damaging procedures like gamma knife, because the MVD success rate is getting better than 90%
Hi,
Welcome to the group and I am sorry that you are in such pain, it is horrible.
Lots of good advice already posted but I just wanted to add that finding the right medication or combinations of medications can take some time. Initially I thought my doctor would just prescribe something and that would resolve the pain, unfortunately for many of us it doesn’t quite work like that.
My pain is much better than it was but 2 years later we are still shuffling medications trying to find the most effective treatment with the least side effects.
It’s really important to find a neurologist that you feel is the right person for you even if you have to travel a little bit further. Don’t be afraid to do your homework and make a change.
Please post here as often as you need, it can be overwhelming and there are lots of great people here to offer help or some support as needed.
Snoopy…yes I’m trying orajel as well and it gives me about a 5 minute reprieve. …thanks!
Mimi…thanks for all of the great advice! My first medication was 200mg & I was taking 3 sometimes 4 per day and the new medicine is 300mg & I’m taking up to 3 so far most times without anything to drink! Both medications seem to make me itch all over. …so I’ve contacted my neurologist again!
Kc…thanks! I checked today and there seems to be a few here!
Trish…thank you! Yes it has been very overwhelming for me but coming across this website today really gave me the hope and the help that I’ve been looking for!
I can’t thank you all enough!
so sorry you are going through this right now.....it so hard, sad and scary--but hang in there--you will find relief!
I found that sleeping in my hubby's lazyboy helped the nighttime pain--laying down seemed to make it worse... lots of people say it goes away at night--but mine didn't.. did the doc give you any heavy duty pain killers?? Vicodin worked to take away the bad pain until the meds started working...I was really careful and only took it when I really needed to --I know it can be very addicting... also-- I saw that you sing in church...I found that copying verses of comfort onto notecards helped me.. I don't think comfort can come from people very much at a time like this...we need something supernatural for sure! prayers to you that you feel better soon!!