Well I am sad to post as I have been doing so well. I have had Atypical TN for two years and have had a few symptoms creeping back to the GP nerve area for a long time. My main ongoing pain has been on the side of my tongue. I have been basically going into remission and finally weened my med down and went off of it 3 weeks ago. Well, it seems that either my body decided to throw something new into the mix or my med was working at a small dose to hide some symptoms that I didn't know I had.
My pain comes and goes. It is literally on exactly one half from the back of my tongue and down my throat. Some days the whole side feels like a sore throat, other days it feels like it is closing in a little or like I have to clear my throat. It also goes into my nose a bit and makes me sneeze? and way deep in my ear.
Then I am getting these little stabbing pains in tonsil area that are very uncomfortable. The only way to make it stop seems to be to cough...which seems backwards as I can see that is a trigger for some people. Then that whole area just feels like it is burning kinda?
Yeah, so I have been to the DRs a few times now. I was diagnosed with thrush. The med for that did help but it hasn't stopped these symptoms. I was on Nortriptyline which causes a dry mouth and have had thrush three times from that. I am going to go back to the DR to make sure the thrush is gone--as if my mouth isn't uncomfortable enough. Anyways, all signs point to GPN. I am not surprised but for me hearing from other members really helps a lot. Does anyone share these symptoms?
I would also appreciate any feedback on medication. I am med free right now for the first time in two years. Are there any meds that don't cause weight gain? TIA
My symptoms seem to be exactly the same as yours. These came on after I had a Gamma Knife treatment. I too have TN. Not sure about meds and weight gain as I lost so much weight whenTN started and find it difficult to gain any.
I've got really similar issues as you, including the TN2 - I've found if I use Biotene - which is a saliva replacement mouthwash you can get. Not sure if you've tried it, but they also do dissolvable strips you can keep in your bag. I've found using this helps reduce the impact of throat infections etc. quite a lot. Sorry to hear your's is making a comeback. With the tricyclics, they work best at the low doses for the pain, so what you say makes sense. May be worth taliking to your dr about keeping just a low maintenece dose happening. Hope this helps, and it all settles down again for you soon.
JJan, Topimax can result in weight loss, but it has a number of side effects that you need to discuss carefully with your health team. I found it really effective for the eye and ear pain you can get with the ATN, but became allergic to it after a few months. For me the tricyclics have been the best long term solution and weight watchers combined.
I'm afraid I didn't have any luck with Gamma Knife, which is a radiation treatment - mine to the T nerve. But I have read it helped other. There are other meds you can use. speak to your Doctor.
Hurts so much said:
Mary you had the Radio surgery?? Thats the Gamma Knife thing right?? and it didnt work? Im in a lot of pain and need something. Oxcarbapazine Sucks
Yes Biotene does help and I have started using it again. Thankfully the thrush has cleared up finally. Not fun. I was on Nortriptyline for a year and will probably go back on it if the pain gets to that point....I guess I am going to try the no meds the for now. I have an appointment with a cranial osteopath next week. I have actually had some relief in the past with physiotherapy for a neck issue and acupuncture.
I have never had symptoms so far back in my mouth before and it is a whole new world of discomfort and anxiety.
Thanks,
Jane
Smiley said:
Hi JJane,
I've got really similar issues as you, including the TN2 - I've found if I use Biotene - which is a saliva replacement mouthwash you can get. Not sure if you've tried it, but they also do dissolvable strips you can keep in your bag. I've found using this helps reduce the impact of throat infections etc. quite a lot. Sorry to hear your's is making a comeback. With the tricyclics, they work best at the low doses for the pain, so what you say makes sense. May be worth taliking to your dr about keeping just a low maintenece dose happening. Hope this helps, and it all settles down again for you soon.
I have thought about Topomax but truthfully just for the weight loss. Since stopping Nortriptyline almost four weeks ago now I have already lost 10 lbs. It just makes me incredibly bloated. It isn't a matter of trying to lose weight with it because it doesn't matter what I do or eat that med just makes me gain weight. Honestly, it is easy for me to discuss this right now because my pain has not hit an intolerable level...if it does I will take whatever I need.
Both Nortriptyline and Amitriptyline have been very good to me over the past two years and I would definitely recommend them.
Smiley said:
JJan, Topimax can result in weight loss, but it has a number of side effects that you need to discuss carefully with your health team. I found it really effective for the eye and ear pain you can get with the ATN, but became allergic to it after a few months. For me the tricyclics have been the best long term solution and weight watchers combined.