Hi
I’m on carbamazaphine 200mg a day (I am eventually going up though to 400mg) for the last two days I’ve been suffering with a very hard lymph node/swollen gland in the back of my neck it is painfulwhwn I touch it and generally achy the rest of the time.Does anyone else get this?
I am seeing my Doctor Wednesday 30th. I’ve read it’s a common side effect but I really don’t want to have to come off the Carbamazaphine a they seem to be working great.
Thanks Amy
Hi Tinkerbell, I am newly diagnosed with TN/ATN, just the middle of September. It sounds similar to my experience with tegretol(same thing and was working great), and I ended up in the hospital because it lowered my WBC severely low and caused my lymph nodes in the back of my head and neck to swell so much that they thought initially that I had meningitis. I would stop taking it and contact you neurologist with your symptoms. I ended up very sick from it, and they switched me to Neurontin, which I have had to increase weekly over the last month. The neurosurgeon says that I have a vein wrapped around the nerve and thinks that since it's early on in the disease that she can help me, so I am scheduled to have MVD November 7, and it can't come soon enough! This has stopped me dead in my tracks! I am a healthy, working, wife and mother of 3 beautiful children who have suffered right along with me. My husband is my rock. I have not been able to function since my diagnoses, and I'm ready to get back to my life. Good luck to you and have them check your WBC.
Thanks for your reply.
I am seeing my doctor tomorrow, currently wanting for a neuro appointment. I am abit worried now, as I am a stay at home mum (2 children)
In 10 years carbamazepine seems to be the only thing that’s working for me 
I will suggest the GP checks my WBC- thank you
Hey,
I’ve just realised that Neurontin is gabapentin- I’ve already tried that with no help sadly.
Very grateful though.
I know how tough it must be to be hurting so much and have small children. I hope that everything is ok. And the gabapenton is not working well for me either, especially the constant burning drilling pain. And having to keep increasing it. I could not imagine enduring this for 10 years.
I was misdiagnosed with cluster headaches, but since I’ve had a new doctor & dentist they have both agreed TN.
I am trying really hard to get on with life, I am currently 10 days clear which is good for me as I normally get 2-3 episodes a week.
I really want to stay on carbamazaphine, I’ve called my GP and I’m awaiting a call back.
Thank you so much for replying to me, it means a lot to me x
Hey Tinkerbell, I hope it is something that will pass for you!!! I know what it is like when something finally works.
I maxed out on neurontin/gabapentin too. I just started tegretol (can't spell the generic :) ) a little over a week ago and haven't been able to go to work or drive because of the drowsiness and dizzying side effects. But it works! It has me thinking "Do I really need to be on this, with these terrible side effects, maybe I never had TN." Just proof that it takes the pain away.
The point is, I wish the best for you, I personally would rather be on medication than have surgery because I am a scaredy cat! Keep us posted!