Hi all, I noticed a question posted about whose TN has gotten worse over time. I thought it might be encouraging to know whose TN has NOT gotten worse or has even improved over time. ;)
Looking forward to your responses,
Vicki
Wow, I thought I'd see dozens of replies here, since it was the first discussion at the top of the main page. I guess if there were no replies, that means most people's TN has gotten worse over time. I don't know if mine has gotten worse, or if the pain has worn me down so much that I am more sensitive to the pain. I do have more remissions now though. I've had it for 16 years. I can have months at a time of remissions. Hopefully it will be at least one year of remissions someday.
Hi Sheila, I just posted this question an hour ago, so hopefully we will receive more responses. :)
It's good to know that TN can go into remission. I've had it for almost 2 years with no remissions, but thankfully Neuronitin helps with the pain most days.
Hope this is a good day for you, Sheila.
It has been nearly 9 months since I had a TN1 attack. I count each month off the calender with relief. The ATN which began in my teeth is no longer constant, after Amtriplyne I now find it much easier to sleep on my side at night. ATN still pops up in strange places (eye, jaw etc but is not constant) I think others may also have positive stories to tell but most people I guess leave the site when their TN no longer dominates their life and there is also a sense of feeling guilty that your not feeling so bad when you read how much others are suffering. I would also love to hear others share something positive as this gives hope to everyone.
If by remission you mean a period of time when you have no pain and are able to stop the medication, then I wouldn’t know since I’ve not been brave enough to cut back or stop the meds when I felt “pain free.”. I do go for weeks and even months with no pain at all, but I’m medicated so these are not true remissions.
I have 24/7 pain in my teeth. And I mean every second of every day. It's been almost two years now. BUT, after taking 100mg/day of Amitriptyline for about a year, I am starting to have a few small moments of no pain. It's still pretty much 24/7, but just getting a ten minute break a day is a huge improvement. I'm hoping the trend continues and I can have more pain free periods. (though I fear I'm jinxing myself just to write this!)
I did have about 6 months of a "remission" and was able to wean off of my Tegretol during that entire time period and I felt great. Then it came back and I had to go higher on my Tegretol than I was before. I had gamma knife in September and I became completely pain free for a month or so and weaned down and was completely off for a week and it is creeping back and I am on 200-400 now but the pain is incredibly less. Gamma knife has improved my pain tremendously. It is there now on and off through the day but mostly just feels like a slight toothache - so it is so much better. If I can stay like this for even a year, I will be happy. I have tried a lot of different medications and Tegretol is the only thing that has worked for me - have you been on Tegretol??
Hi Vicki! I've only had TN for less than a year, but it seemed to have peaked around 6 months in, and now it's waning. I'm able to control it with meds, and I'm actually taking less mg now than I was 6 months ago. My neuro even told me that the TN would not get worse - which seems to contradict everything I've learned about this being a "progressive" disease. I'm thoroughly confused, and just play it day by day always hoping that he's right!
Have a great day!
Marcy
I don't think that your Neuro is right or he is trying to not concern you, but I am fairly sure that it is normal and common for it to get worse or have flair ups or change in different ways. Not trying to give you upsetting news but from everything I have been told and read, that is usually the case and my Neuro did seem to agree with that. Mine has only gotten progressively worse, but it took years to get to the degree that it got to and I slowly went up up up on medications - but I guess I was pretty young when mine started (about 34yrs old) But, there are things that you can do in the future besides meds if you need to. I am happy for you that you are controlled on your medications - hope it stays that way for you - I am sure it is possible.
MarcyHutt said:
Hi Vicki! I've only had TN for less than a year, but it seemed to have peaked around 6 months in, and now it's waning. I'm able to control it with meds, and I'm actually taking less mg now than I was 6 months ago. My neuro even told me that the TN would not get worse - which seems to contradict everything I've learned about this being a "progressive" disease. I'm thoroughly confused, and just play it day by day always hoping that he's right!
Have a great day!
Marcy
My pain started out in 2007, triggered by wind or hair touching my cheek by my nose. The area seems to have traveled a bit from my nose area to the inside of the front of my mouth and also from the nose straight back to the middle of my cheek. All of this is on the right side. I go for a couple of months with just a few sharp pains a day. Today, however, the pain woke me up from sleep. It happened when I was turning in bed. I must of put more pressure on my face than usual. It is very sensitive today. When it woke me up, it was like the usual lightening bolts of spasms, it had me sitting up on the side of the bed. That subsided, but am still having unexpected large jabs of pain. Leaving me with fear to talk, drink, eat, not wanting to wake the sleeping giant. When I go from a couple months without the lightening bolts, I can tolerate the few jabs a day so I take myself off the meds, so today am wondering if I should start up again. The meds I take when the pain is in the spasm mode is Lyrica twice a day(50mg ea.) The meds make me in a drunk mode, where I wouldnt feel safe driving or making decisions, thats why I go off of it whenever possible as I have two little girls to take care of and drive and pick up to and from school.
So does it get worse, for me, the pain travels, like it is following the nerve paths, but I still get relief from time to time. I never know when the sleeping giant is going to awaken. Today, he's awake. So am being very careful today.
Marcy/Jeanine,
It depends on what kind of TN you have, which helps determine if it will always get worse. For those who have pain due to an injury or trauma to the nerve, it is thought that that kind TNP won't get worse or spread. For classic TN, or TN1, it's supposed to get worse. Just depends on your situation...
Crystal I agree. I dont know but I think If it is a one off injury then It should not worsen. I also think there are many reasons why TN happens, I have read they think the most common reason for TN1 is a blood vessel pressing on the nerve and this can happen on and off causing damage over many years. Therefore some people may be more fortunate then others and the nerve may not be in contact so often and they then would have less damage.
I don't know anything about the type of TN from injury - I am sure there are many different ways for it to develop due to injury, so it makes sense that that type of TN may never get worse. But as far as I know, I agree with estep above - it is most commonly due to a blood vessel pressing on the nerve and usually gets worse over time due to deterioration in the sheath around the nerve from contact etc. Everyone is different all you can do is hope for the best and try different things. One thing I have learned for sure from this site is that different things work for different people. I see a lot of people that Lyrica helps - that drug did absolutely nothing for me except make me want to eat candy and gain weight - which I found out later is a real side effect of it. My brother took it for a different reason and had the same effect although we didn't even know eachother was taking it until later when we were discussing it and found out we both had that strange side effect. Anyway - I have tried a lot of things but Tegretol is the only thing that works for me and the gamma knife I had helped.
Thanks for all of your responses everyone. Not sure I'm feeling very hopeful after reading them, but I'm glad you didn't candy coat things either.
One thing that's a little encouraging to me is that I have MS (Multiple Sclerosis) and I hear sometimes it acts a little differently and can actually go into remission for years. The only thing is that the surgeries that help many TN patients are usually not effective for people with MS.
I do my best to just take it one day at a time but sometimes it's hard not to worry about the future. So thankful we are all in this together and can support and encourage each other along the way.