Hello everybody!

Question to ask- I'm in Week 5 post rads and just this week my tongue has been doing something different. My native tongue will all of a sudden get a zing and electric type shock feeling to it. It's quite uncomfortable pain wise and it always makes me pop open my eyes when it happens. This is the really weird thing though- it only happens when I'm falling asleep. It's so frustrating to be right there on the edge of rest and the spontaneous zing gets you. I find that it doesn't matter if I'm on my back, left or right side.

I called my RO and he thinks its the nerves regenerating post radiation.

Any thoughts or suggestions?!

TY!

Hey Kristen,

This has been happening to me too. It’s pretty painful. My tongue has been feeling fine during the day but it happens as I’m trying to go to sleep. It has gotten a little less frequent over the past 2 weeks or so but still happens.
Let me know if you figure out a solution.

Thanks,
Linda

YES!! Isn't it the worst??!!! Remind me again how many weeks you are post rads Linda? I just starting noticing this w/in the past week and I'm at Week 5 post rads. I wish I had a good solution but I don't. I'm using my pain meds but it doesn't 100% take away the discomfort. I'm also using lidocaine gel and just started to use CBD oil. I'm hoping that w/ the combination of treatments, I'll get some relief. Also been using my MM but that doesn't help either.

I really need the rest and I get so frustrated when it's interrupted with this pain! I still have my PEG feeding tube and am just now starting to eat more orally but tonight when trying to eat some peaches and cottage cheese, I was in tears. I had taken an oxycodone and still could barely get the food down. I gave up and did a tube feeding instead. My speech pathologist wants me eating more orally but I'm not wanting to at this cost!

All in good time I suppose!

I am 9 weeks post rads today. I go for my first scan next week and am nervous. Been feeling pretty good and starting to attempt more foods. Had a boneless chicken wing yesterday which was great until the spice hit! Yikes! Also had a few tortilla chips, which I’ve had dreams about and it tasted good! So taste buds are coming back which is really nice.
Hoping for continued improvement for us both!!

Linda

I'm glad that you are doing so well Linda! Deep breaths about the scan- I'll be praying for you! Did you have any scans done during rads? I had one done about Week 5 or 6 and that put me at ease. I'll do a PET scan in 2 more months.

I love to hear that you are eating more orally. I've had a bit of a roadblock with my eating as it's really hard for me to bite down my top teeth to my bottom teeth. It's very challenging and uncomfortable to make contact. When this happened before the RO put me on a steroid. I'm just hoping that as time goes on, the swelling will go down and I can eat more. I'm relying on my PEG tube so much!

Good luck to you!!

I guess they did a CT scan during week 4 or 5 of rads and would have let me know if there was anything to be concerned about.

Yes they would have! Keep up that positive attitude!!