Lidocane infusion

Symptoms & Treatments Medication
1

I am booked for a lidocane infusion as I cant take the side effects of anybof the drugs thst seembtobwork. Has snybody got experience that they can share on what yo expect

Many thanks

2

How did it go, JBM? Was it helpful?

3

It was like a miracle. Within 24 hours i was pain free and srarted reducing drugs.

I am now on a very low dose but have started to get occasional pain. I have just booked another treatment and hoping that one every 6-8 weeks will keep it at bay.

The greatest benefit is lack of side effects from the drugs so real bonus. I have lost 18 lbs without trying and can hold a reasonable conversation for the first time in 10 years i feel as though there is a life out there.

Would love to know if snybody else has had this treatment

4

That's terrific, JBM. So happy for you! I'll feature this and see if we can get some additional responses.

5

Hi JBM, that’s great that it helped!!! Did your insurance company cover it? I’m desperate for something new, but we’re out of money! Thanks

6

Hi Metter

I am in the UK so NHS. I was previously with a private medical scheme but they wouldnt cover as it is a sergical procedure that was treatment, not a cure.

7

Hi JBM,

I’m going to speak to my neuro and see if I can give it a shot. So glad it helped you!

8

Good luck. If you can, let me know how it goes as I cant find anybody else who has had one

9

Hello JBM I’m in the UK too! Where did you have it done and what did it entail? Is there anyway I can contact you ? So glad you are pain free,so very glad! Eileen



JBM said:

Good luck. If you can, let me know how it goes as I cant find anybody else who has had one

10

I think I lost my reply to you just now by pressing something wrong…anyway so glad you are pain free! I am in the UK too and want to know more about this treatment…what it entailed etc…were you on many medications.?I have been on lots but have to come off as side effects too great.


Eileen said:

Saving…

11

Hi Eileen

I have also worked my way through all the various drugs but with dreadful side effects, most recently Phenytoin plus Nortrypteline but i keptnon having to increase until my liver said no more.

I was lucky to be referred to a pain specialuat who switched me to Sodium Valporate and suggested the Lidocaine Infusion. It involves a half day in hospital with the procedure done in the recovery room. First time I stayed awake throughout but the most recent they increased the anysthetic so ai was out like a light. It is just a drip via a canula in the back of the hand and takes about 1 1/2 hours. I was drowsy the rest of the day and next day but was able to decrease the medication over the next 2 weeks from 1200mg to 200mg so the greatest benegit isvreduction in side effects.

I must admit, it is like i have a life for the first time in 10 years so worth giving up 2-3 days every 4 weeks

I am in Hampshire so under The Pain Team at Hampshire Clinic although it is being paid for on the NHS as BUPA dont cover a treatment that isnt a cure!!!!

Rwgards, Janette

12

Let me know if you want more info of find it is an option for you

13

Thanks JBM! I have an appointment with the pain team at the JR in Oxford in middle of February( these long waits!!!)They are the only ones ,I think,who can refer me for an infusion.Do you have TN or ATN? I have ATN.However I feel whatever the name it’s all facial pain and trigeminal nerve,just different type of pain.At present I am on 10 mg nortripyline and in process of coming off.Then I will tackle the last 25 mg of pregabalin …I just cannot take these drugs! If you can tell me of a faster option to get to be referred for transfusion I will be grateful.How many times have you had it done so far and what is length of time in between?Best Wishes, Eileen

14

Oh I see you have it done every four weeks.Im so glad for you to be pain free! E

15

Virtually. Still some pain episodes but greatly reduced. The greatest benefot is no drug side effects

I would recommend anybody explore the option

16

So pleased you have an appointment and can discuss. I have ATN.

I am still getying some painful episodes, especially at night but no drug side effects has put me back in control of my life. I have my next booked for 8 November.

Good luck. Let me know how you get on

17

So glad to see this post! Congratulations on your returned life and thanks for sharing hope. Several of my friends are concerned about me - they think of me as tough so to see me whimpering is unsettling I guess. One pal gave me some 5% Lidocaine patches she had in her med cabinet. I was appreciative, it is nice to know I am thought of but all I have read left me les than optimistic. However, we had planned a Bon fire and I had been trying to figure a way to protect myself from that God-awful gentle breeze of misery so I cut a patch into quarters and put it on my cheek. NO PAIN! All night with the exception of a tiny twinge here and there. Woke with no pain and am out in the breeze with no patch and no pain? Can’t do it again for 12 hours and haven’t yet decided if I should wait for an episode or be preventive but thought I’d share.

18

Is this available in the u.s ???

19

As I mentioned in a few of my discussion to you all, I had this lidocaine injected in each nostril through a cathetec, a fairly new procedure which is done at your neurologist and lasts no more than 15 minutes total while lying down on a table with your head tilted back and you can drive yourself home after that. So far, I have no more cluster headaches and for the pain in my gums I have just discovered this tube in my mother's med cabinet called Benzodent, a dental pain relieving cream, I was going out of my mind with pain, and have finally found relief, Thank God!!!! and you better believe I am going to keep on rubbing it on my gums until the pain subsides. Try it too and let me know how you do!