Lidocaine and Ketamine Infusions

[Sally Girl]

My 24-year-old daughter has Chiari Malformation (she has been decompressed), Pseudotumor Cerebri (she has been shunted), Chronic Intractable Migraine, and Degenerative Disc Disease. Plus aches and pains just about everywhere.

She has been in mega pain management since 2003. Not much has helped her pain. Her pain is 24/7.

We recently took her to a major university pain clinic in Chicago, and her new pain doctor is trying Lidocaine and Ketamine infusions. My daughter had very excellent pain relief with these infusions, but the relief was temporary. About 48 hours of relief from each infusion, which were spaced three days apart.

She is going to be receiving more infusions in the future, and we were told the pain benefit would increase.

My daughter was taking Mexiletine, but she could not tolerate it after two weeks. Oral Ketamine may be prescribed for her in the future.

I am just wondering if anyone here has had any experience with either of these infusions. The relief for her was truly remarkable.

[Mark N]

I don't have any experience with the infusions but it is good to hear that she has found something to give her relief after suffering so much. I hope the future infusions provide as much relief as advertised.

[Sally Girl]

Thank you, Mark.

When my daughter had the favorable response to Lidocaine, the pain doc said that showed my daughter has peripheral nerve pain and not central nervous system pain. She said my daughter can have the Lidocaine infusion every week.

I don't know about Ketamine because we didn't see the doctor following the Ketamine infusion, and we haven't had that conversation yet. But someone else who is knowledgeable about Ketamine told me that infusion can also be done weekly.

The pain doctor said Ketamine should boost the effects of Lidocaine as we go along. And the pain benefit of Ketamine should be accumulative.

It was very encouraging to see these infusions help my daughter's pain to the degree that they did. My daughter is currently on 300 mg. MS Contin with 80 mg. morphine daily. She rarely gets painfree on these meds.

We live near a different major metropolitan area. I have called our university hospital, the largest neurology clinic, and the largest pain clinic. No one does these infusions. The neuro clinic is possibly willing to do them. Our very small community hospital does Ketamine in their new infusion center, surprisingly enough.

I am hoping my daughter's local G.P. (who has been doing all my daughter's prescribing for quite some time) will be willing to order these infusions for my daughter in the local infusion center. He was 100% for trying this in Chicago. If not, we till try the neurology clinic.

[spoiledbeth]

I have had the lidocaine infusion done myself, then they put me on the mexiletine. We weren't able to get me up to theraputic levels of it though because it made me sick when we tried to increase the dosages. The pain doctor I was going to gave up on me, and there aren't anymore near me that will take my insurance and treat my condition. I only found relief from the lidocaine infusion for about 10 hours myself though, and we have yet to find a narcotic that really does help me. I'm doing better than I had been now that my doctor is playing around with methadone in my cocktail, but it's hit and miss for the most part.

[Mark N]

Sally Girl, it sounds like you are on the right path and it is good to hear she is getting pain relief. I control my pain [still have pain every day at levels of 5-6] with 240mg/day MSContin and 60mg/day Cymbalta so it is good that she found the infusions to help her.

[Sally Girl]

The pain doctor said anything past a six hour period of relief from Lidocaine was a good response.

At first the Mexiletine made my daughter queasy, but after eleven days of taking it, she experienced unrelenting vomiting for one week. She stopped the Mexiletine after the one week of vomiting, and the vomiting stopped. Started up the Mexiletine and the vomiting came back. Stopped it, and she got better.

When I took my daughter back to the pain doctor (a nine hour trip), the pain doctor said it was ok she could not tolerate the Mexiletine. She could still keep on with the Lidocaine infusions and try Ketamine also.

Like I said, I'm hoping my daughter can get these infusions locally. She sees her G.P. this week to talk about it.

Even if she gets just temporary relief from the infusions (days here and there), it would be worth it. I'm not really expecting to get a cure from pain. Just any relief at all, that can be provided. If she needs infusions for years to come, so be it.

I just wanted to share this with everyone here because it is something hopeful for my daughter when we had seemed to run out of hope and things to try!

[BrokenBladder]

Sally Girl its so good to hear that your daughter has found something that helps. I know you must be so relieved!! I can't imagine one of my children being in the amount of pain I go through and being so helpless.
I just wanted you to know that I feel for both you and your daughter.
Take Care,