Ketamine treatments for Atypical TN

Hi there,
I haven’t posted in quite some time, so probably count as new again. :slight_smile: I didn’t see this question when I scrolled through the previous discussions, so my apologies if it has already been answered and I didn’t see it,

I have had Atypical Facial pain/ TN Type 2 since 2003 and migraines since I can remember. I have tried almost everything out there, including the newest CGRP drugs. My neurologist is very much a 'let’s try this and see what happens" when it comes to new approaches, which is good and has led to the more helpful things we have found over the last ten years.

Lately, she has wanted me to try Ketamine treatments as a preventative approach, and I have several allotted by my insurance company each year. So far, I have been hesitant to do these treatments because I have been susceptible to the side effects, a one-day emergency treatment usually leaves me groggy, nauseous, and dizzy for several days, and the recovery headaches can be almost as bad as the initial in a couple of cases. I generally save these for when I am in really dire straights. An anesthesiologist and several PAs will monitor you directly in the clinic, so it doesn’t require me to be in the hospital, but it means several days to a week off work.

Keeping in mind that everyone is different, has anyone tried this approach as a preventative, and has it been worth the effort?

Thanks, Looking forward to your responses and meeting the community again. :smiley:

Riza

I have not tried this. It sounds scary. Does it only help for one day? I can’t take any of the medication so I have resorted to medicinal cannabis. It at least dulls the pain and is not physically addicting. If you live in a state where it’s legal, you should try it. I tried everything but I haven’t heard of this Ketamine. I don’t even go to my neurologist anymore. This disease is not curable.

Hi Riza,

Refer to my response:Larry2
March 2020

Larry

Hi, I’m not clear if you are considering trying the Ketamine treatments for your headaches or for the TN2. I tried Ketamine treatments for TN2. My treatments were in a clinic and I was monitored by a PA or EMT the whole time also hooked up to a heart monitor, blood pressure and breathing. My treatments were around an hour or so. It was a pleasant experience but did not help with the TN2. The only side effect was it took a little time for the medication to wear off and I could not drive home (required by the clinic). That being said we are all different and my TN2 is so miserable I am willing to try most things unless I know it will really cause me a problem. I have tried some meds that did cause me a problem and I just stopped them immediately but still had to deal with them in the short term. I wish you and all of us well - such a difficult disease to deal with.

Hi Riza, I did have Ketamine treatment for impossible GPN pain last year. I was in hospital and a very low dose was given over 5 days. I am very sensitive to drugs, so the drug was not able to be increased, due to side effects over that time. I, personally did not find this treatment helpful. It did not help my pain level at all, short or long term. However we are all different and I do hope you get some relief. My Neuro is now trying a different approach. I am taking Minocycline. This has helped a bit. It’s an antibiotic, not for infection in my case. I think it is helping with inflammation around the area where they operated in years ago. I know I get so depleated by the pain on occasions I am willing to try anything with an open mind.
Good Luck. Warrior Woman (Lisa)

I did a series of 6 Ketamine IVs with psychotherapy (KAP). I did not do it for pain, but I can say that the experience was nothing but positive and life-changing. I don’t recommend oral or intramuscular.

It’s expensive but worth it if you can manage the cost.

Best of luck, and I’m happy to answer any questions.

Apple