Trigeminal Neuralgia

Hi Tim

Welcome to out little community and congratulations for at least getting through the treatment. I've had a quick search through all the groups and there is little on TN that would help and there is nobody on the head and neck cancer one reporting it.

It might be useful to just get back to your GP, maybe your pain relief needs to be adjusted? What does your oncologist say? Is it likely that it's temporary? I had Lhermitte but that has reduced to a tolerable "fizz" when I bend my neck.

Massage has eliminated the lymphodema (if you look at my blog I have a short video for simple neck swelling) but if you have significant hardness from neck dissection that needs a different approach.

Lots of people who had chemo...I didn't... report cold feet and hands. That usually improves too.

My dry mouth has improved over time and with acupuncture. I am 2 + years out of treatment and my saliva is at a tolerable level.

When did your treatment end? 

• Hi Tim 

congratulations on completing treatment’s I had chemo cisplatin the cold hands and feet do improve it still get both when it’s cold out but most of time fine. I am 32 month  post treatment .Dry mouth does take time I had acupuncture paid privately I believe it kick started mine. In daytime I chew sugar free gum always carry water and night j use 2/2 an xyimelt. The triumus sorry I’ve no experience there lije Dani says  maybe contact oncologist?

Hazel 

Hi Dani , thanks for replying, I’m glad your journey is going as well as it can. I’ve read your blog, thanks for sharing.

it doesn’t surprise me not many have experienced the Trigeminal, I cal it Trevor,  “ oh here comes Trevor” it’s easier, I tend to do things differently lol

for a start, when I stopped smoking,13 years ago, I got these huge mouth ulcers, all the time, for thirteen years, so when they said I’ll get nasty ulcers thru my treatment, I said no worries I’m used to them

guess what, my radio and chemo starts, ulcers go away, for four months, no ulcers, not one, sore mouth throat neck, bad pain but no ulcers

then when I started to heal a bit back they came

haha, and now they are back most of the time again

Tim

Hi Hazel, thanks for replying and also sharing your story

Tim

Tim. Has your GP checked for thrush? It can be atypical. 

Hi Dani, yes I’ve been treated for it twice this year, but GP access is so hard, mine are so reluctant to see you, and aren’t very helpful, treatment during COVID was not good , a feeling of isolation was very prevalent, still I feel lucky to have had it as do many didn’t 

Tim