Lidocaine Infusion-the results so far

[Janepepper]

So, I'm home. All went smoothly. The hospital, (Royal National Orthopaedic in Stanmore) were brilliant. Everything was explained clearly. I was taken to theatre and wired up to a heart and brain monitor. I tolerated the drip well and so they sped up the drip and I was done in an hour and a half. Back on the ward I was given tea and toast and after two blood pressure checks I came home. The lidocaine drip made me feel sleepy and I was slurring my words. I had tingling in my lips and tongue and bad spasms in my right leg. But they weren't painful or unbearable. I was very sleepy, I fell asleep on the sofa once I got home. The consultant said that I won't notice any difference for at least 48 hours. That it was extremely unlikely to cure my pain, more likely it would just reduce it slightly. If I get no relief than our next step is a ketamine infusion. Fingers crossed for the next few days. I'm not sure how long I'll feel as weird as I feel now. Terrible headache and feeling sick, also feeling disconnected and so very very tired. I'll keep you posted. Thanks for all your support and encouragement. It made a huge difference to me

[RibvanRey]

Glad that the procedure all went smoothly. None of the possible disasters. Hope you feel better once you have had a chance to sleep you'd headache off.

[paulapips64]

Hi jane thanks for posting this I've got to have the same thing done September 8 th I hope it works for you and you have some pain releif for a while x

[sharelle]

Fingers crossed, let us know x

[superannie]

Hope you get some pain relief. Let us know how it goes. Ann

[Chawner]

Hi janepepper , do you know what dose of lidacain they gave you ?

I have the lidacAin infusion once a week and after being shown how to do it at the hospital I now do it myself at home. I was never hooked up and monitored like you were.

I do 1600ml drip and it usually takes around 12 hours to complete it, sometimes longer.

I was told it may take a few sessions for your body to adjust to having it. It definatly helps though with the pain. I still get the numb lips and weird taste but the sleepiness lessens. I can also put it on at night and sleep through it.

I'm thinking you had it way to fast and that's why you got the headache!

I did the kedamean once and never again. You thought the side effects were bad on the lidacain well x it by 10 for the kedamean .

Anyway I hope that has helped a little and let me no how your doing

[Janepepper in reply to Chawner]

Hi Chawner, wow, that's really interesting. Reading my discharge letter, I think I had 240mg over 60minutes. The house officer was telling me that lidocaine infusions are not licensed yet. The people that have them have to fulfill certain criteria and, even then, we're guinea pigs! I asked how many hospitals are involved in the trial and she thought only London hospitals. So what you're getting sounds completely different and excellent. Which hospital are you under, (if you don't mind me asking) and for what? I'll go to see my consultant soon and would like to ask her about the treatment that you are receiving. All this information is so helpful. Thank you so much

[Chawner]

Hi jane I am actually in Canada but I am from the UK . I have been here for 18 years

I have a pain condition called complex reginal pain syndrome (CRPS) (RSD).

I was just wondering if it would be better for me to return to UK or to stay here , would I get better help medically or financially , I just don't know.

I don't no if it would be a differNt type of lidacain infusion or not , I would think it was the same. I do no that I could stay in the hospital and have my treatment but they if course are so busy that if I'm happy and confident to do it myself then it's one more person not taking a space up.

[Janepepper in reply to Chawner]

I agree with you, why have treatment in the hospital when you can have it at home. How fabulous! As for the question whether to stay in Canada or return to England. That's a corker! I moved abroad when I was 19, I only returned after 3 years because my father was dying. It took him 7 years to die, but 17 years later I'm still here. But I'm now making plans to emigrate again. England is a country in decline. Sure, I earn more being ill than a lot of people do in full time work, but I'm lonely and not valued. I've been written off. Permanently disabled means you have nothing to offer any more. I'm ashamed to say I'm English. I don't know if I've hindered or helped!

[mitziblue]

Hopefully you will be feeling better soon. Really glad all went well. Hoping you start feeling lot's better very soon sweetheart!!! Hang in there. xxx Mitzi

[Marky]

Hi Janepepper

I too goto (Royal National Orthopaedic in Stanmore). Have also had lidocaine infusion. Unfortunately did not work for me. Who did you discuss a ketermine infusion with? I am going to Capsaicin patch 8% treatment next.

Good luck

Mark

[Janepepper in reply to Marky]

Thanks Mark, it hasn't made a difference as far as I can tell. But I did have a blinding migraine last week and I've never had one before! I see Dr Zarnegar. She's taken over from the lovely Dr Berman, who is now based in Bolsover Street. I'm seeing her again on 22nd September to assess. I'm wondering if she'll want to go straight to ketamine or give the lidocaine another chance. I had a great deal of success with patches. Unfortunately, I developed a skin intolerance to them and now can't wear any kind of patch. But they were brilliant for about 2 years for me. Let me know how you take to them. Best wishes

[Marky]

I also see Dr Zarnegar. She always dismissed the idea of ketamine. Have you tried a guanethidine block or been on the 3 week PMP?

Do you have CRPS?

[Marky]

If the lidocaine infusion has little effect, then in my experience she will not repeat.

God bless

Mark

[Janepepper]

So much left to try! Although she's absolutely stone faced and humourless she seems to be prepared to have a go at most things! (This is a whisper, I don't want to say it out loud, just in case, but I think it may have worked! Shhh! I don't want to jinx it!)

[MyStar86 in reply to Janepepper]

I know your post is from 9/10 years ago but I wondered if you could update on your journey following the infusions? How are you feeling now? What other things have you tried since? What pain were you trying to treat? Thank you 🙏🏻