Am I the only person who feels like their pain is spreading? It has very much moved to both sides of my face, the back of my head (right side), my neck, shoulder, and arm. Also, I feel like both my hands hurt really bad. they are all red and it hurts to grip things, or write. This is very upsetting. I called the doctor yesterday, the doctor who was on call talked to me. I told him about my hands and he said that he never herd of that as a side effect and just said that he would have my doctor call me back on Monday... just looking for anyones input...
Sarah, I have similar issues and they are all separate to my TN. My neuro has them all in hand now and I am having each symptom treated. I feel for you as I was very worried. I wished I had waited until I had been diagnosed . Keep us posted.
When I was admitted to hospital I had hand pain so bad I had no grip and they felt like they were on fire. It was Tegretol related as when they stopped that it wore off. Perhaps it could be a side effect of any meds you are on? A lot of anticonvulsants can cause cramps and neuralgia in other areas. It happened to me, the hospital neurologist swore it wasn't a side effect but after it wore off as the medication left my system the medical doctors agreed with me that it was an adverse reaction to Tegretol.
I can very much relate to what you’re feeling. I have newly diagnosed TN on the right…seems to be in all three branches. Now I am starting to get some pretty significant pain in my left eye and jabs in the left ear. I don’t know if it’s TN or something else, but my right side TN started with ear pain. I also had burning hands a few weeks ago. The bad pain lasted about a week, and now it’s just occasional pain. It felt as if I fell on asphalt and caught myself with the palms of my hands. My neuro said it could be from the medicine (Trileptal), but from what I’ve read, this does seem to be an unusual side effect. I hope you feel better and that you get some answers from your doctor.
Monica
Hi Sarah, you are not alone. My pain has spread to both sides of my face, both ears, and the top of my head. This is upsetting, I agree. :(
Feel free to message me anytime. We don't have to suffer alone!
xo
Vicki
I am getting some pains in my arms and hands, I am thinking it is the Trileptal. ?? Just wondering that myself lately, then I saw your post. I haven't asked the doctor yet. I have only been on it for 3 months now. . . deep sigh.
I went to the dentist today for some x-rays. several of my teeth are still absessed on the left side. very frustrating. i have to get 5 teeth removed on the top arch and all the teeth removed on the bottom. I talked to the dentist and my neuroligist today my dentist is saying that removing the teeth will not make the ATN go away but it still must be done because of the sever decay and absesses that will not go away. The neuroligist upped my Gabapentin. The problem teeth are all on the left side (My main TN side is on the right) yes I can feel the absesses, but that pain is nothing compaired to the pain of the ATN. I am concerned about the pain in my hands, because it is SO bad that it is the first thing I think about when I wake up when normally I think of the pain from my face or teeth when I first wake up. My hands are Red my knuckles hurt when I move my fingers and its mostly the Left hand my the right alos hurts.
I am a very positive person but this is really all starting to be to much for me. I am feeling very trapped and scared. I am sooo not looking forward to having teeth removed, and more root canals ugh. this is aweful. Its just too much.
my pain is on my neck, arm. leg. so i would say that spread. you are npt the only one.
i need to increase my meds, not working very well anymore.
i agree. im due to pull 10 due to periodontal inflamnation. more pain does not thrill me. gapapentin does nothing for me. is that all you are taking,
Jackie said:
Sarah, I have similar issues and they are all separate to my TN. My neuro has them all in hand now and I am having each symptom treated. I feel for you as I was very worried. I wished I had waited until I had been diagnosed . Keep us posted. what is causing the other symptoms and what do you do for it.
I am now taking 1200 mg of Gabapentin and 50 mg of Amitryptaline...
Elaine, my hand problems are reoccurrence of Carpal Tunnel. The agonising pain had been masked by my meds but not the pain in my arms. I also have elbow problems which will be addressed after my hand op which I am having in a couple of hours. My head and neck problems were migraines which I have had a regime of treatment for and are now bearable. They had radiated pain into the back of my head /neck.
I was not rying to say that Sara has not got TN related problems, more that a firm diagnosis is something to deal with, where as what we worry about before DX is often much worse. I and my GP were concerned it was MS, I am very lucky it is not.
elaine48 said:
Jackie said:Sarah, I have similar issues and they are all separate to my TN. My neuro has them all in hand now and I am having each symptom treated. I feel for you as I was very worried. I wished I had waited until I had been diagnosed . Keep us posted. what is causing the other symptoms and what do you do for it.