Lidocaine Infusion

[Janepepper]

Come Monday at 7 in the morning I'm having a lidocaine infusion. My pain consultant thinks it's worth a try, even though it's not actually licensed for neuropathic pain. I take so much morphine, in both tablet and liquid form, that she's amazed I'm not dead! I was warned that one day I'll take so much oramorph that my heart will just stop. I will be in the operating theatre for 4 hours whilst it is slowly dripped in through my central line. I will be wired up to a heart and brain monitor as there is a high risk of either a heart attack or a brain convulsion. My pain consultant said that they do the procedure early on a Monday because there's a lot of doctors around. But I'm having it at the Royal National Orthopaedic in Stanmore. I'm not convinced that if I'm having a heart attack that my first call would be to an orthopaedic surgeon and his Black and Decker drill! If it works I could be pain free for 2 months, I can't even imagine it, pain free! If it doesn't work they're going to try again with Ketamine (don't they use that to put horses to sleep?!?)! I'm torn between fear and excitement! Please keep your fingers crossed for me. I'll let you know how it goes

[RibvanRey]

Love the vision of the ortho with his jigsaw at ready to open the chest so he can get at your heart to massage it.

[Bananas5]

Yes of course good luck. I was thinking more of the orthopaedic surgeon attacking your skull!

Pat x

[Dalrymple]

Hi Jane my heart goes out to you on so much medication ,I am also in a lot of pain ,I have 400gm of tramadol plus fentanyl 12mg patches ,but even this does not help much ,I am also scared to ask for much stronger medication , you are so brave and I wish you all the best for Monday please let us know how it goes hugs Jacqui

[paulapips64]

I hope all goes well I'm having it done too on Monday September 8th please keep me posted x

[Janepepper in reply to paulapips64]

Hi Paula, just wanted you to know that apart from being knocked out with my first ever migraine last week, I feel no different since my infusion! But I'm ever hopeful. If I got offered another one I would do it. The process wasn't nearly as bad as I had imagined. Good luck for the 8th. Please let me know how you get on. Best wishes

[paulapips64 in reply to Janepepper]

Thanks jane for replying oh sorry to hear you didn't have any pain releif from the infusion I'm not banking on it working for me neither I'm already on some really strong meds but all they are doing is making me drowsy and brain foggy! I'm still in agony all the time I will keep you posted after the 8th xx

[Calceolaria]

Best wishes. Let us know how you get on.

[Janepepper]

Thank you all very much for your lovely words and support. It means so much. I'm trying hard not to sob over my children today and give them profound life advice, (mostly because I don't know any profound life advice!). But I don't want to panic them, I'm panicked enough for all of us! My mother is being her usual support; she's complained bitterly about how inconvenient this is for HER, how worrying this is for HER and how typically thoughtless it is of me to upset her in this way. Tut tut me, I am so self absorbed, you've got to feel sorry for her!

[mitziblue]

My fingers are crossed and praying it works sweetheart!!! Not sure I would know how to act. Lol Can't wait to hear all about it. xxx Mitzi

[Piggysqueak]

Dear jane pepper

Please be reassured I have worked with orthopods for years 1993-2005 and they are some of the best dr consultant teams I have ever met . Also I'm sure you will have anaesthetist there and there assistant you will be monitored constantly . I have previously had 2 lignocaine infusion for Fybromyalgia and have helped I know it's different . I am on big doses of morphine for chronic and acute pain I don't understand why Drs think it cures all pains cause it does nt it take edge of at best makes it bearable sadly it's the best we have . Try to do as drs ask and I try and focus on the fact this maybe your last bit of such terrible pain . Good luck hope you have an excellent result we will be waiting for you here best wishes squeak xx

[Janepepper in reply to Piggysqueak]

Thanks Squeak, I am completely confident in my Pain consultant. She is so hard working and dedicated. I once emailed her to ask a question. It later transpired that she had been on holiday. However, the tone of my email was not the usual bonkers, make a joke of everything, laugh a minute attitude she has to grin and bear with me usually. She phoned my GP, from her holiday, to ask her to see me urgently! I'm sorry, but how brilliant is that? The fact that it took my GP 2 weeks to follow it up by which time I would have killed myself is irrelevant. But I find it helps me to make everything funny, cos if I wasn't laughing. ..........

[Piggysqueak]

Ahhh you have an exceptional pain consultant mines very good but not that good . You know that your in safe very skilled hands and I really really hope it helps . Your right to laugh and joke it does cover up how bad things can be but if it helps then you go for it !! You sound like a right. Character I mean that in a good way and I am glad to have met you ( is that even right ) keep smiling and good luck can't wait to hear from you, I am most definitely in need of a right good giggle maybe you can help when tommorrow all done . Oh yes the lignocaine did make me quite sleepy and I remember trying to reply to people on FIBRO site and would get half way through a reply and fall asleep it happen so much 3times to one person it sent me insane as I could nt find the bl**dy things where do they go !!!! Still got no idea bye for now squeak xx

[jamessteven]

HIYA,

MY NAME IS GWEN AND I HAVE NEUROPATHIC PAIN WIDESPREAD, I HAVE NOW HAD 8 LIDOCAINE INFUSIONS, I REMEMBER THE FIRST TIME, LIKE YOU I WAS ABSOLUTELY TERRIFIED, DON'T BE, ITS NOTHING, HONEST. I GET SUBCUT, WHICH MEANS THEY PUT THE NEEDLE STRAIGHT INTO MY TUMMY, ITS NOTHING. THEN FOR 5 HOURS I SIT IN A CHAIR, USUALLY WITH 3 OTHER PEOPLE, ALL GETTING IT TO. ITS ABSOLUTELY FINE, JUST BE AWARE, IT CAN TAKE 5 OR 6 OR 7 BEFORE IT STARTS TO IMPACT ON YOU, KEEP A DAILY DIARY AS OF YOUR FIRST INFUSION, U WILL BE SURPRISED AS TO WHAT YOU HAVE DEALT WITH ONCE THE INFUSION WORKS, I GET ABOUT 4 WEEKS TINY RELIEF, BUT ITS BETTER THAN NOT GETTING IT, I ALSO WEAR 3 LIDOCAINE PATCHES EVERY NIGHT FOR 12 HOURS, TOP DOSE GABAPENTIN AND AT TIMES ORAMORPH. PLEASE STAY POSITIVE, PLEASE BE PATIENT WITH IT, U MAY GET RELIEF STRAIGHT AWAY, IF NOT, PLEASE PLEASE STICK WITH IT. MY FIRST 3 WERE EVERY 6 WEEKS, TRIAL PERIOD, NOW CAUSE I GOT SOME RELIEF, ITS EVERY 8 WEEKS

PLEASE KEEP ME POSTED

I WOULD LOVE TO KNOW YOUR STORY/JOURNEY/IMPACT/LIMITATIONS

GWEN

SCOTLAND

[Janepepper]

Thanks Gwen, I just got home from my first infusion. I had it in my hand, which I wasn't expecting. As I was tolerating it well the drip was speeded up and dripped through in an hour. I felt extremely sleepy and I was slurring my words. My head felt like I was flying, but not in a good way. I had tingling in my lips and tongue and spasms in my right leg. But none of it was painful or unbearable. I went back to the ward, was given tea and toast and then I got dressed and came home. I've been dozing on the sofa this afternoon and I have a headache. My pain consultant said it would be at least 48 hours before I noticed any difference. I'm nervous and excited at the same time. Can I just carry on as normal now? How long until I don't feel so wobbly and sleepy? My consultant says if it doesn't work we'll try ketamine next. What do you think? Thanks Gwen