I’m Stacia, I’m 28, and I also have MS which is causing my TN. I’ve had this particular attack for over a week. It crept up on me for sure, and is only getting more intense. Right now I’m on 600mg of Neurontin but it’s definitely not enough. I feel like this is never gonna end! It’s triggered by just about any movement, and burns over the left half of my face. Is this typical of TN? To just keep getting worse and worse? I found very little info about how TN progresses. Just that it usually does over time. Trying to stay positive but it’s so difficult!
Stacia, 600 m of Neurontin is still a low dose. I take 2400 mg per day. I am not suggesting you do the same without medical supervision, just that you speak to your presciber about increasing the dose. A slow taper up will be necessary. I hope you find relief soon.
Stacie,
I agree with Jackie. You should discuss increasing the dosage with your doctor. You may notice some blurred vision, but you will adjust in a while. Also, ask about additional meds to help with breakthrough pain---Baclofin, Clorazepan, Buspirone are some of the ones used in conjunction with neurotin. I may have spelled those incorrectly.
There are many triggers for TN; reading what helps others on this site is one of the best things you can do for yourself. I suspect you will find the right med combination to help. One of our members who has MS and TN has found great relief in Upper Cervical Chiro.
I am sorry you have to suffer so much and start at such a young age. You may want to check in with the FPA forum newsletter. There is a group of doctors studying TN among younger people. While I am not in the correct age bracket, one of the doctors was kind enough to answer my email. I don't have the information any longer, but the FPA Forum should have it.
Best of luck to you. I wish you pain free!!
Mary
Warm welcome Stacia,
I was 29 when I was diagnosed with TN, I had it for 9 months then it went into remission for 8 years…I’m almost 41 now…
We have an MS group here, you can find it under the Groups tab located in the black header bar upper left. Read through the previous posts.
Definitely get in touch with your Neuro to discuss how you can increase your meds or change them it takes time to find the right dose.
Hope you find relief soon,
(( hugs )), Mimi
Awe Stacia You say its getting worse is it type 2 do you think ? My pain is constant throughout the day I get alot of burning. I am currently on nortriptyline that helps all the different pains I was getting I still have some pain but its not as bad...feel free to friend me and inbox me if you have any questions hang in there we are here!!
That’s exactly how mine progresses. Just gets worse and worse until I can find something to break the pain cycle. I get bouts of breakthrough pain where absolutely nothing helps and I’m at about a 15 on the 1-10 pain scale. I’m so sorry you have to deal with MS and TN. I am 32 and have a friend our age who also has MS. She is lucky to not have TN though. She just got pregnant!
I take 600 mg of neurontin 4x a day so you are on a pretty low dosage. I just saw my doc today and he said on bad days I can even take 1 or 2 300mg capsules extra, so clearly you can take a lot of it. I also take tegretol 4 x a day. You have a lot of room to increase your meds so if they are helping at all now just a small increase should help you. You should have every reason to be hopeful to get the pain under control.
The FPA site mentioned above is the facial pain assoc.
If you haven't already -- get the book - Striking Back by Dr. Ken Casey
It will show you your many options - it's our "bible" here!
Welcome - glad you found us!
Hi Stacia, I'm also new here. I do not know much about this awful TN pain, but to me it has always imitated itself as a toothache. I've had several extractions only to find 5 years later I still have the pain, I don't know what to say, except don't go having any teeth out.
Also there is a group tab above -- you can find some members with TN and MS there if you want.
Hi Stacie,
Just wanted to welcome you to the group.
Hope you are able to find something that will reduce your pain, I’m still in the process of changing medications but am definitely in less pain than I was 18months ago when I was first diagnosed with tn.
Hugs
Trish
Hugs