nerve pain

[mwatto]

Its been two years since I had CK and I still cannot sleep on that side without triggering ear pain. Has anyone else had this? Earache and some nerve pain in and around ear was my presenting symptom. My AN was almost 2cm and ipsilateral to trigeminal nerve. I had some shrinking to 18 mm and cystic disappearance at first MRI. I have no other symptoms at all - if anything my hearing is improved. I feel great - sometimes feel some cognitive fog but other than that. I was wondering how long before I can sleep on that side (fractured shoulder on the other side two years ago as well- a bad year for me lol!). Does any one else still have nerve pain. No issues with face just deep in ear. The other thing is its STILL tender to touch around that area since Cyberknife. I would really like to know if this is to be expected. Please respond someone!

[gbly]

mwatto
We keep chatting, but similar timelines.

So I actually sleep better on the opposite side of AN too, but don't have the pain you do.  Mine is for eyes and the "good" eye drying out otherwise. Sounds weird I know.  what I notice more is that my AN side feels like when you have been in the cold too long and your face feels frozen and. moves slow when you try to move it.

Now where I get pain is my jaw, but not constant.  Really bad in the beginning and then everyone once in awhile it flares up.  I did however notice this morning a nerve in my chin was firing off.  I keep telling myself that it is a good sign and all the nerves are starting to come back.  They got stretched from the initial swelling after radiation. 

I hope we both get better and wish you less pain.
GB

[mwatto]

Thank you gbly! The nerve pain is transient - what I do not understand is that even two years post 3 session Cyberknife its still tender above my ear - hence uncomfortable to lie on. Mt MRIs have looked good - shrinking and cysts gone. No real symptoms good hearing and balance. The nerve pain moves and only in early hrs suggesting blood flow or pressure to me. But last night I also had muscle twitches in body, frequent wakening. Hope I dont have neurological issues (still beat my husband at chess and he is really good being a mathematician!) but I have bad insomnia re frequent waking. I take melatonin but maybe not enough. The AN makes me nervous to try hypnotics etc. Chat again - thank you I get so few responses!

[gbly]

mwatto,
That is very frustrating.  There are some interesting similarities we are experiencing, but I was attributing it to menopause and getting through that. 

Now the pain, interestingly is more when I crew.  I actually don't have issues sleeping on my AN side, but my husband makes fun of me, cause I will put AN side up and go to sleep even with the TV on, can't hear it...hahahahaha.  It would be frustrating if tender and sleeping.

I would ask are you drinking enough water?  I know that I get muscle twitches and spasms (not fun) at night if I have not had enough water.  Try to push extra water for a few days and see if that helps. 

I think you and I are about the only active ones.  Covid might have slowed treatment down for people.
Let me know if extra water helps. 
GB

[mwatto]

Hi there gbly - funny enough I just cancelled an early MRI (my third one only due in Sept) and visit to specialist because everything has settled down. I start to think that certain supplements like propolis trigger my nerve pain. Also what has helped on the other hand is this tissue salt compo for nerves - I was skeptical and maybe a coincidence. It homeopathic. It has helped twitches and nerve pain so maybe it works in some mysterious way. Yes so true here in Perth Australia no Covid or masks so I can exercise outdoors which is really de stressing. I feel great. My sleep is an ongoing issue - I still have site tenderness on that side after 2 and a half years (wonder if anyone else has this) and on my other side it still aches early hrs from a shoulder fracture I had shortly after CK treatment- not a good year. I can still hear normally or so it seems to me though my husbands snoring is less of an issue if I sleep with that side up! You are right- drinking water now that does help. Yeah ageing - I turned 60 this year and still not used to it Hahah!