My heart goes out to you both,Bell. I hope you get some peace from your latest efforts with the drs. You are both doing it tough. I am of no assistance whatsoever, however we are both thinking of you and your troubles.
Love
Deborah & Trevor

Bell
the amitryptilline Rob was prescribed was a once a day dose taken at night,and it was just 10mg compared to 25mg three times a day taken when it is used for depression.It didn't cause any side effects or drowsiness,and i HAVE to emphasise that at the time Rob was crippled with this nerve pain he was on a 100mcg fentanyl patch,break through morphine,votarol and soluble paracetamol for his radiation burns.They didn't touch the pain in his face at all.It is a difficult condition to treat but it also completely overshadows everything else and reduced robin to tears of pain and frustration.

The research project i am participating in at leeds is aimed at exactly the points you raised and that is post tx support,which macmillan have recognised is severly lacking.Lets hope it gets somewhere toward what is needed.

on a practical note warmth applied to the affected area can help.

good luck
liz

Yes Cookey,u have it down to T!! exactly what is going on here ,sod Thursday going to insist for the amytriptilene today ,enough is enough.I know you said it takes around 10 days to kick in but at least it gives him something to focus on. We were at it most of the night and did a conveyor from microwave to his face with beanie pads and walked the floor with him the heat did help a little but was at least something to work with .Would be great here how your work with this project goes definatley needed .You at least unfortunately have first hand knowledge of how hard it is to cope at home inbetween appointmants and until you have walked this path personally and endured the brick walls first hand with Rob. I feel the main stream consultants are not really aware of the private hell that goes on behind the closed doors of patients .

Thank you for your help Cookie.

Trev !!!!!!! how wonderful to hear from you my goodness you have been having a very hard road yourself of late so pleased to see you posting again we were all worried about you and Deborah said you were in terrible discomfort.Can we assume you are home with Deborah and enjoying your food again and most importantly feeling comfortable.

Happy home coming Trev you are a star indeed .

Back to drawing board now and the phone .

Love Bell.

Hi Bell

Just read your posting and Cookeys reply. I use amytriptilene by the end of the day certain muscles are like a piano wire over period of time you do need to up the dose still I take a half a 25mg or a whole one if it really bad.

Perhaps you might also want to investigate a TENS pain relief machine, I use one and it works for me I have put a link in for you they are very cheap and drug free you need to experiment to get the right settings plus side is it drug free and I find 30 minutes blast on it works great and they are not very expensive, available from Boots or online.

TENS pain relief machine

I hope that above is of help and give my best to Paul.

Regards


Tony

Hi Bell,

I think you have every reason to moan it is so difficult to see someone you love in pain and you seem to have had to see Paul suffer on and off for a very long time.

I think there is an interest in quality of life issues in some quarters - I seem to remember that some of the academic papers I have read on re-irradiation really focus on the number of patients that suffer severe toxicity and I imagine that the number of patients that suffer acute effects will have some bearing on policies about whether hospitals and trusts offer the treatment. However, as Cookey says there doesn't seem to be much follow through in terms of support for patients after treatment. I can't help wondering whether you would have received more support if you were adjacent to and having regular check ups at the Marsden where they may have more experience of these problems? Let's hope Cookey's project has some results.

I really hope you manage to get the pain under control soon and that both you and Paul have some relief.

Best,

Cathy

Hello and thank you for your input ,I have now got the AMYTRIPTLINE so he will start tonight.Kathleen that was good of you ,remebered I had a tens machine for back pain so have dug through the cupboards and found it ,but the battery is defunked! ....Please don't anyone give me a lecture but I have nabbed the battery out one of the smoke alarms and have him wired up on the knead option so he seems quite comfortable with that at moment so will give him a wee half hour and see if it helps .The battery for smoke alarm will be replaced pronto in the morning .

Thank you for this tip kathleen ,could I ask where you put yours ..says not to be used on head so have used pressure points at back of neck and behind ear .(only has two sticky pads )

Love and thanks ,

Bell.x

Hi Bell

I use a slightly different machine which has 4 sticky pads, I usually place one set of the pads
at the top of my back near my spine and the others lower down.

You can use the machine on the head but not near the jugular vain, the little pdf booklet gives a load of updated info which I hope will be of help to you.

You might want to try it at different places as the it works on a weird principle but it does seem to work.


Tens instruction book

You'll have to let us all know if it works for Paul.


Regards


Tony

Thank you ,have printed out the picture for Trigeminal neuralgia.Will definately let you know how it goes . My pads are oval and largish so should cover the area shown .

Many thank's.

Bell .

Well thought I would just update ,things still a bit low.Saturday night he managed through the night till about 6 am and we thought things were settling but last night was another bad one .The increase in the Gabapentin has induced nausea and he feels there has been a change in his mouth ,finding it awkward to eat and swallow due to stiffness .He has only been on Amytriptiline for a short while but was hoping after Saturday it was starting to work but early days there so hoping for good results there .

This morning he feels his mouth is full of salt and his brekfast also salty so will relay all this when they phone this morning .He is feeling low and fed up and thinks he has gone back the way major style and now wishes he had not gone for second treatment and had plodded on feeling good and just taken chemo as and when needed .I know he is just had enough of the pain and not able to enjoy life at the moment.This all started just before xmas and was only during the day ,then it went away and now back with the nights unbearable.So it has been a few months too many.

When things get in an all time low like this he tends to batten down the hatches and won't talk to anyone as his mouth refuses to work properly and he finds it impossible to make small talk and just reverts into himself .

Well just thought I would keep our update updated so I can refer back when things get better.Spring here is starting also with buds and birds and little more warmth .A family of rabbits have taken up residence in garden and now eaten all my crocuses and starting on shoots from roses so will need to address this before the summer planting kicks in and they all start to breed.

Well babbling now, so off to be constructive and get the day in hand and try a lift hubby out of his low mood .

Bell.



Will see what they say this morning .

My Dear Bell,

Thanks so much for taking the time to write such a lovely PM when you are in the midst of all this. I really appreciate it and take comfort in your experience.

I am so so sorry that Paul is so down. Even though I have never experienced persistent pain, I really empathise with how he must feel and how difficult it must be to make small talk. I am crap at that even when I am 100% :-). Having said that, it must be INCREDIBLY difficult for you to see someone you love in pain and emotionally so low. I get really stuck and don't know what to do when Chaz goes into 'his cave'. Thankfully up until now he hasn't stayed there for too long at any one time.

I do hope you are managing to find ways to keep your spirits up. I get the feeling from your posts that you are someone who keeps busy doing contructive things rather than sitting around feeling sorry for yourself. Very sensible. You are incredibly inspirational Bell and I just love the way that you (and Debs) always find time to respond to other people's worries and provide so much love and support through this board, even when you are both going through difficult times yourselves.

I hope you find a way to deal with the bunnies that doesn't result in them appearing on your table in a stew LOL.

Take care and enjoy the garden.

Love to you both,
Cath

hi bell and paul
i really hope the amiltriptiline kicks in and the tens machine gives paul some relief,there is nothing worse than watching a loved one in pain.rabbit stew sounds a good option too lol.hope to hear soon that the meds are working well.take care love from shirl xxx

Hi Bell


Just read your posting so sorry to read that that Paul is still in pain.

The taste thing could be a side effect of amytriptiline I noticed a difference when I started taking them.

Also you may need to check on the dose I take 25 mg most of the time which does seem to work on the muscles not sure what other meds Paul is on so if the does is small it might be worth checking with your doctor.

Lastly it did take quite a while before the muscle effect starts to work.

Don't give up on the amytriptiline yet it could be it needs longer to get into the system or perhaps the dose needs increasing.

Good luck on chasing off the rabbits.

Give our best to Paul

Regards


Tony

the consultant told us it takes about ten days to work.there are other trigeminal related drugs so dont despair.
love liz

Hi Bell
You two are having a hell of a rough time and that's the pits for sure.
I know nothing of the treatment that keeps getting mentioned but I feel heartened by Tony and Liz's posts. Here's hoping it's just some adjustments and time that are necessary to get Paul back on the straight and narrow. We'll be thinking of you both and wishing you nothing but the most positive vibes.
Now ~ (Cathy, look away now) Bell, about those rabbits. There was an article in our local paper this week about a fella who has decided to save the country and the universe by doing away with sheep and cattle and farming bunnies for meat. There was a picture of him with rabbits the size of small dogs! (well, almost). Maybe you could be the trail blazer in Scotland???????? XCurried rabbit mmmmmmmm......
Cheers
Deborah

Hi ,thanks for your input ,i think this salty taste could be the Amytripiline kicking in but just not sayng to much and told him sometimes these things occur till he settles in to it ,fingers crossed .( he is only on 15mgs)Mind you his mouth feels different and is a little red and swollen he also has had a couple of dizzy turns but passed off so just noting this down as the lady from pain control is going to pop in tomorrow ,she is aware of the wee things going on regarding Hubby feeling very low and having spasms of irritability and being a bit naughty all which we were told to expect in little bursts but does not help when we are tryinng to get some kind of medication plan in situ .

This morning was eventful as he had got his hearing aid last Thursday and had been talked through it etc ,but in a wee fit of annoyance this morning decided to have a fiddle and broke it so had to take it in to be fixed .When I came home the man who helps us out in garden had brought round his air rifle to deal with the rabbits but hubby said he would have a go .Well as I drove in my next door neighbour came out saying Paul had been hanging out of bedroom window with the gun and she was concerned about her prize cats .I rushed in to house to find Paul sitting with his head in his hands mumping about the rabbits and how sore his head was ...so gun has now been removed and will leave it to handy man to deal with .

Have been encouraging him with the tens machine but not sure if it is making any difference. Goodness me feel like shoving some of Paul's meds in a carrot and putting them out tonight so I do .

Thanks for listening .

Bell .