I feel like I am slowly being tortured.
I have pain behind my ear--like near the top of my ear and directly behind it. Does anyone have this??
I have had ear pain a little bit in my ear-feels like my ear is plugged sometimes.
I am having a hard time controlling my new right side pain. I am on Amitriptyline which helps immensely for my teeth and jaw pain. But the right side tongue pain is incessant most of the time and now this!
I am having a second MRI tomorrow and seeing a TN specialist at the end of April. I was hoping not to change any medication until that appointment.
What medication has helped people with the tongue thing? I have been talking to many of you about it. Thanks again :)
Hi Cleo,
Yeah, for sure. These two definitions fit the pain--especially in my tongue. It feels like I have bit it really hard. It is a constant, deep, heavy feeling on the one side. It does sometimes feel more pins and needles and it also changes location up and down the right side and edge.
The pain behind my ear--feels kinda like a terrible headache but in a very concentrated small area. Or like someone hit my head with a hammer. The ear pain is not there this morning. The tongue is almost every day in varying degrees. I have had maybe three days in this past month with no tongue pain. Oh how I enjoy those days!!!!
I had the behind the ear pain off and on, sometimes much more on, for a good year or so. Knock on wood, after my experiment with topomax I don't seem to have that but it has only been a few weeks. This pain was part of the reason to try topomax.
I'm glad you don't have it anymore. What type of TN do you have? and what types of pain? I would like to know more about topomax and how it is helping you.
Thanks
I have the ear clogged feeling in both ears!
Thank you Cleo. You are always full of useful and to the point information :)
Cleo said:
Yes, I have had it in both ears at different times. Also along the bottom side of jaw up to the ear and then across into my cheek and jaw, teeth, tongue, roof of mouth and under my lip. Never all at the same time thank goodness! My pain has familiar patterns and usually starts in certain places, then migrates to others.
Jennifer said:
I have the ear clogged feeling in both ears!
I am tn2..heavy, boring incessant pain from the beginning. Gabapentin gave pretty quick relief even at a very low dose for awhile but I have had to increase...still a relatively low dose. Topomax did not work for me, I only lasted 9 days as it seemed to exacerbate any nerve issues to beyond toleration. During this topomax trial I got the stinging pain in my cheek under my eye on the tn side. Before it was more tingling which makes me think it was stinging all along and the gabapentin muted it? It seems like we have to get mini medical educations to be able to help manage this dreaded disease. Prior to this I had no interest in medicine. I really don't now, but it seems necessary.
My heart is animal behavior and I had hoped to one day walk away from my soul crushing but well paying job with excellent benefits to fulfill my hearts desire. Perhaps I am getting closer.
Oh ok. I misunderstood thinking the Topamax was helping. But gabapentin helped you. Did you have many side effects when starting the gabapentin? Were you pain free on that? And you have Type 2--where is your pain? Do you have tongue pain as well?
Yes, we need to be our own best advocates for sure. Trying to gather as much info as I can before seeing the specialist. It is obvious that I need to try another medication but am so reluctant to.
Any feedback is appreciated.
Thanks :)
shadow2 said:
I am tn2..heavy, boring incessant pain from the beginning. Gabapentin gave pretty quick relief even at a very low dose for awhile but I have had to increase...still a relatively low dose. Topomax did not work for me, I only lasted 9 days as it seemed to exacerbate any nerve issues to beyond toleration. During this topomax trial I got the stinging pain in my cheek under my eye on the tn side. Before it was more tingling which makes me think it was stinging all along and the gabapentin muted it? It seems like we have to get mini medical educations to be able to help manage this dreaded disease. Prior to this I had no interest in medicine. I really don't now, but it seems necessary.
My heart is animal behavior and I had hoped to one day walk away from my soul crushing but well paying job with excellent benefits to fulfill my hearts desire. Perhaps I am getting closer.