We have not had a good week at all .Paul has been getting severe pain down left hand side of face at eye area and in his head .He has been having mild discomfort since last Rt and got some pain killers which were working but it has now escalataed and a little different, pulling him down.When he lies down in bed the head pain gets worse .

It appears to be slightly different from usual jaw and neck ache which he has gotten used too.Think i am worrying as original symtoms were this eye and face pain .I know it is only 5 months since end of treatment and could be nerve damage from this as it takes time for stiffening and aches to appear, but he keeps saying his head does not feel right and his eyes also are gritty.

He seems to have lost energy and his legs are agitated.This time after treatment his left ear has gone very deaf due to RT and in the last week he has had clicking in good ear and hearing coming and going which is affecting his balance a little.

Phoned the clinic on Friday and they will see him on Wednesday .Also have phoned dentist as he feels the toothe there is a bit strange but he has a lesion there which has taken forever to heal from treatment .The clinic said they were not worried about it but would keep an eye on it .I am hoping that there is maybe a problem with this back tooth beside it, that could be causing this escalated neuralgic pain although it is not really showing signs of an abscess.Just looking for possible answers that are not serious.

Seem to be prattling again but did not sleep last night at all and Paul not sleeping well either, it helps to write it down as I can't bring myself to talk like this to immediate family until we have spoken to clinic.Wondering if anyone else has experienced this .

Bell.

Hi! Bell & Paul,
I may not be of much help but I had & still have some side effects from my R/T Chemo treatment and that was there is a nerve just below my right ear line benieth my jaw and everytime I touch this area it is like getting an electric shock and very painfull, my right ear lobe is numb and that continues down to the painfull part, I also have Excema in the right ear canal which at time drives me nuttso. When I was having lots of pain I was on Fentanyl Patches along with Oxycodone Liquid, I also found that I slept better propped up a bit and slept very well in my recliner lounge.
As for the eye situation I am constantly rubbing my eye's and until you mentioned Pauls eye problems I never gave it a second thought that it was to do with the treatment.
Take care Paul and Bell and I will be thinking of you as you go through this ordeal.
"Stay Strong"
Trev

Sorry to hear you're both suffering. I slept propped up for quite a while after my treatment was finished. When I tried lying down properly it seemed like all the blood rushed to my head and it wasn't very comfortable. Hopefully Pauls symptoms will get sorted soon and you'll both be able to get some sleep. Hagg.

Rob suffered terribly with trigeminal neuralgia all down the left hand side of his face where the secondary tumour and the recurrence were.The pain was excrutiating and he couldnt lie on that side or bear cold air on it.He was treated with amitryptiline 10 mg at night which in larger doses is an antidepressant but has been found to be effective for nerve pain.It took a while to take effect,but once it kicked in it gave him a good deal of relief.when his tumour recurred they upped the dose.

Hi Bell
I can't offer any help I'm afraid but want you to know that I appreciate your worry. Wednesday seems a lifetime away and no doubt you want it to be here but in the same instant you want to turn the clock back and never have to face any of this stuff.
The responses you have received so far all seem to suggest Paul's issues may just be typical ~ here's hoping.
Know that you are both in my thoughts and open your ears for the best wishes I'm sending.
Love from Down Under
Deborah
xo

Hi, thanks to you all for your replies, has eased my mind back to logical thinking .He is taking Meloxiacam at moment lowish dose so maybe needs this adjusted .The pain just seems to have changed somewhat and could possibly be this trigeminal neuralgia which he has experienced before in previous treatment but never as bad, this time has reached a peak, things had been ticking along nicely and we thought we were out of the woods regarding more side effects being 4 and half months down .He has just really dropped into a low and in so much discomfort from previous pain that I have this feeling of alarm .Hopefully Wednesday will put things in perspective .

To Trev especially and Debs thank you for your input I know you are back on the treadmill and have a lot to deal with we are sending positive Scottish luck to you Trev ,Paul also has an area on his neck which if it gets pressed sends shooting pains through him ,it is such a shame the RT wrecks havoc in its path and leaves it mark.You mentioned your eyes also Paul has a weepy eye on right due to one of the ducts being damagaged with RT and finds it really waters in the cold .Some patients evidently can be the opposite and left with dry eyes .Paul is now getting quite deaf and we are turning the telly up more every day.The RT has damaged the internal ear structure on left ear which was the exit point,The structures have folded in on themselves evidently so he was hoping other ear would stand up but again it has been behaving strangely recently, it clicks and then his hearing goes but comes back later almost like a faulty connection on a radio .I guess head and neck is one of the most difficult areas to target successfully without damaging surrounding tissues and organs.

Cookey, have a super holiday you so deserve it . I have noted the Amitryptiline 10 mg you mentioned this maybe be better than what he has so will bring this up.

Hagg, I have got him sleeping propped up becuase of the copious mucous secretions at night but as his head and eye area so sore he is moving about trying to find a comfy position as I know you will remember.

Thank you all, this had made me feel calmer ,so back to focusing on trigeminal face pain .Roll on Wednesday for some reasurance .

Bell.

Oh Bell, I am so sorry to hear your news and hope that Wednesday's appointment brings some reassurance. I do feel for Paul. Chaz is not in as much pain but he is really suffering with mucous at night, and not able to sleep. It must be very tiring for you both.

I do hope you are managing to get some sleep. Make sure you look after yourself.

Best
Cathy

Hi Bell,

Am so sorry that Paul is having such a time of it again. Do hope on Wednesday they manage to sort out all these problems and give you the reasurance you need. Just seems like as soon as one problem is solved, another one comes along. Will be thinking about you both.

L o L

Joan xxx

Wednesday came and we got a phone call to reschedule for this Wednesday as consultant was called away on emergency so it will now be this Wednesday .Got the womans own and read Chloex's article was very good .Spoke to GP but he is reluctant to give him the Amytriptolene Cookey mentioned until we have been to clinic .So will need to be patient .
Bell and Paul.
PS. Got the Womans Own Chloex ,lovely photgraph ,well done to you .

Sorry to hear about the delay Bell. How awful for you. It must be very difficult to be patient.

Thinking of you and Paul and hope you get some answers soon.

Cathy

Hi Bell
God don't you hate the bloody waiting! Sometimes I think ~ tell me anything but tell me NOW.
The bright side is that it's now only 2 sleeps and you'll be at your appt.
Keep your chin up and try to breath normally (always a challenge for me when I'm anxious although I don't realise it til the crisis has passed and I suddenly feel the rush of oxygen into the lungs!).
Thinking of you both
Love
Deborah

Hi Bell
I was thinking you'd have had your appt by now but of course, it's only morning up there whereas it's 11pm here.
Hope all goes well. Thinking of you both
Love
Deborah

Hi Bell,

Have been thinking of you often over the last few days and hope you are alright.

Cathy

Hi to everyone ,clinic went ok, at moment they feel it is temporal mandibular dysfuntion due to RT and the pain is neuralogical they can't find any lumps in neck etc and nasal scope looks fine .Regarding the second treatment he had in June for underlying cells beneath area only a biopsy will tell .At moment they want to leave this for a few months till they feel recent treatment has settled .Paul has been given different pain medication which seems to be helping and has been told to take extra care protecting his face from the cold winds etc .Which he has been doing .So feel a little more settled, but at the back of my mind is a niggle about when they are going to check if the area that has recently be irradiated is clear now .Because this will involve another anaesthetic as it is in an awkward place we will need to patient till the time is right .They have explained because Paul has undergone two sessions of RT ,35 3 years ago with chemo and then 30 this time with the new IMRT in June, which amounts to 65 in total the scar tissue and onset of new side effects is to be expected and needs to be monitored. However Paul feeling a bit better and more upbeat with new medication, so that is the main thing .
Thank you all for being there .

Love Bell .

Hi Bell
Your post has a much better tone to it and that's just great. All that reasoning makes sense, don't you think? If some new meds are going to help Paul to be more comfortable, he will feel better in himself which will allow you to settle yourself. Great news.
I was so relieved to see you online, you've been missed.
Now I can relax a bit. Phew.
Love
Deborah