Hello everyone,
Thank you for your kind replies to my first post. I wanted to post my symptoms because I am just not sure about this diagnosis of TN. I have severe pain all the time on both sides of my face as well as my neck. Sometimes the pain is worse on one side or the other but the pain is always there. I have severe pain in my jaw, cheeks, chin, all of my molars, above my eyebrows and in my neck. It is a burning, throbbing, aching pain. Does this sound like TN? I took amytriptaline 8 years ago and it worked great for 3 years them after second child it no longer worked. I have tried every muscle relaxer and anti inflammatory imaginable and they do nothing. I tried cymbalta which I did not feel well on. I have tried massage, chiropractor, accupuncture, prolotherapy as well as nerve block in my neck and cortisone injections in my neck. They did nothing. My story is this:
10 years ago I fell on ice and went straight back and hit the back of my head on pavement. The pain was in my neck. This I recovered from. 2 years later during my 1st pregnancy I woke up one morning feeling like my neck was out. At that time my issue was only my neck. I did not have face pain. Over the years the pain has gotten worse and now my whole face hurts. The neck is still an issue but the face is way worse. It hurts 24/7. Doctors have never been able to tell me what was wrong until now. My naturopath has been doing prolotherapy with me for a long time so he has become very familiar with my symptoms and all the nerve pain in my face. He has shown me pictures of the branches of TN nerves and that is exactly where it hurts. I am just confused and am not sure if this is really TN. If anyone can give their input, I would be so grateful.
I Have recently switched Drs and he has switched me to oxcarbazepine from the tegretol which made me extremely drunk. I'm doing pretty well on the new med only have a breakthrough twinge every few days, nothing major. My new dr thinks I have TN and Cluster headaches. He says I may have one that's causing the other and we are trying to figure out which is the main issue. But he does think cluster headaches are involved since my pain does extend beyond just my face, it goes from the top of my head, down to my neck and sometimes my shoulder. I had an MRI/A Tuesday and will hopefully know something soon! Maybe you should look into the cluster headaches, maybe you could find some relief there.
Hugs,
Jessica
Hi Sarah,
You have been through a lot. First off I would say that because Amitriptyline worked for you that would be an indication that it is nerve pain. Your locations and descriptions of pain fit in well with Type 2 TN. It seems that over time many people with ATN have increasing difficulty finding relief from medication. So far Amitriptyline has worked very well for me. But then I started having success at 25mgs and am now at 60mgs. I hope and pray that it will keep working for me.
Often times people with ATN will not have success with meds used for Type 1.
Most often people with TN will only have unilateral pain. Do you have pain on both sides of your face at the same time?? And you have had an MRI right? That was all clear?
Bilateral TN is much more common than most people realize. I was given a statistic that one in five people on this website have bilateral pain at some point. I have bilateral ATN. I started on the left side a year and a half ago and went bilateral about three months ago. I don't usually have pain on both sides at once though and each side's pain/location is a bit different. I was frightened by doctors who said I probably have MS because I have bilateral pain. My MRI's have been all clear though.
It sounds like you have some type of injury to your nerves. So that would be a bit different than "neuralgia" which is usually caused by a blood vessel or vein pressing on or wrapped around the nerve. The term "neuropathy" is what I have been given. Seems doctors will call it this when there is no clear evidence of the cause.
I know you are looking for answers. My experience with this is that it is more a process of elimination. And a lot of waiting...for doctors, specialists, tests and trying medication.
Thank you for your reply. I am confused about the term ATN. Yes I have had several MRI and all come back clear. I do have pain on both sides a of the time. This is why I am questioning the diagnosis. I think I need a referral to a specialist but it seems not many doctors know about this. Especially when I don’t fit the mold exactly… I am going to try the tegretol this weekend and hope it will help. I wonder if it is not TN and more of a neuropathy if it may still help since it is still a nerve issue. I have a 4 and 7 year old both with ballet recitals this week so I am afraid to start the med until after. I appreciate your response. It is so helpful to not feel so alone. This has been a long, painful road and I am so exhausted, frustrated and sad. I will keep fighting until I get answers though because my children need their Mommy.
Oh Sarah, I so understand your cries about your babies. I have 5 kids ages 1-12 and when I had my last severe attack my eldest 2 were on vacation with my mom and my husband was at work, so I was home alone with my 3 littles (1, 3, & 4). My eldest two are my lifesavers most of the time! I so wish I had answers for you, as we've all been there! All I can offer right now is a virtual hug and prayers that you will find an answer soon!
Jessica
Sarah,
I have a six year old daughter and am a single parent so I know what you are going through. Being in chronic pain and trying to parent is extremely difficult. I felt a lot of guilt with it. When I am in pain I have zero patience for anything and just want to go to bed--because sleeping is the only pain-free time. You have to take care of yourself and be strong, even when you don't want to be.
But in my worst moments it is always my daughter that keeps me going. I am so thankful for that. She forces me to look beyond myself and dig deep for energy that I didn't even know I had. Rely on those around you that love you. Starting a new medication is difficult when you need to be "on" for kids and work. I always plan it very carefully to be sure my schedule is as clear as it can be and that I have people around to help if I need it.
Most of us do not "fit the mold" and it is very difficult to get help. Doctors don't really know what to do for us. I am a year and a half in and still searching for help as well. You are not alone with your confusion. I am confused every day about what is causing this--it can be very overwhelming and isolating.
There are lots of medications to try and combinations of medication. And the bottom line is that it doesn't matter why you have it but how in the world you can get relief! I hope you find some relief with Tegretol.
If you haven't talked to Red (he is one of the moderators on here) you should message him. His knowledge is amazing. And you are in the right place being on this site--the people on here have more knowledge and experience than any doctor you will ever meet.
Keep me updated :)
Thank you so much. I can relate to every word of your reply. So much that I am literally crying. I am so sorry you have to go through this as well. It is so terrible. I have wanted to give up so many times over the last 8 years but I look at my beautiful girls and I know that I could never do that to them. They need me. It is just so sad that the mom they know is always in pain. This sucks. I know this is my reality and I will continue to be proactive until I find something that works. This site is a blessing. I have felt so isolated. How can anyone understand this nightmare unless they live it. Luckily my husband has stood by me this whole time but it sure isn’t easy for him. He misses the me I used to be… I miss the me I use to be too. I am going to try the tegretol this weekend when he is home to take care of the kids. We have no other family close by so it is a lot for him as well… I will keep you posted and contact Red. I pray for all of us. I am so grateful to have found this site and some support. Thank you again for your replies.