Ketamine Infusion

General General TN & GPN (Old Site)
1

My 18 year-old daughter, who has suffered for over two years with this horrid disease, had an interesting medical treatment today that I wanted to share with all of you. As with a lot of treatments out there, it may not be for everyone, but I am encouraged by what I saw today. This poor girl has had three MVD's, two of them complicated by infections.

She recently saw a new neuro doc who suggested a new pain mgmt doc. After seeing the pain mgmt doc and talking with him at length (she also suffers from occipital neuralgia), he suggested a "procedure" called "ketamine infusion". I have seen those words on this site before, but never really did too much research on it.

We were told that some of the things she might experience were: hallucinations, disassociative behavior, possible seizure (rarely seen. Her nurses said they had NEVER seen this). Some people get silly and very happy, some may get irritable and anxious.

Here is how it worked: We went to the hospital at 9 am and she was admitted as an outpatient. She was taken to "post op" surgical care center. Her vitals were taken, she was hooked up to EKG machine, blood pressure and heart rate monitor, and an i.v. was started. She was given "versed" through the i.v. The pain mgmt doc came in and hooked her up to "ketamine".

The infusion was started very slowly (I don't remember exactly how slow). She was pretty loopy and said she felt "weird". She fell asleep for about an hour. This continued for about 6 hours, while she continued to be monitored. She did indeed have some hallucinations (my face looked "funny" to her, my nose was not really a nose, the curtains at the end of the bed were "an old lady". She was talking very silly (slurring her words, high pitched voice) and kept wanting to watch "NCIS" (I had to laugh at this one). She sang the theme song from "Big Bang Theory" (much to her nurse's amusement).

(I should also mention that she was NEVER without a nurse at her bedside. They truly monitored her the entire time!) When she did become a little anxious, they gave her more Versed.

At the end of her infusion, she had "zings" in her jaw area, but the doctor was able to touch her face and head without her experiencing the excruciating pain that is usually brought on by the slightest touch. She was able to ride home without one single episode of extreme pain due to going over a bump(she had about 60 episodes on the way to the hospital this morning). After being home for a few hours some of the pain increased, but as of right now (5 hours after the end of the infusion), she has not had one episode of extreme pain! She was able to sit outside tonight, in spite of the wind, and not be in extreme pain!

My understanding is that she may have to have more of these infusions-they last different lengths of time for everyone. I know we don't know for sure how this will effect her long term, but for right now, my baby girl is not in pain 24/7 and she is able to be happy and pain-free!

Just wanted to share with all of you! Peace!

2

I’ve only seen two here, in two years!

I wish they had kept up after first session… We dont know what happened,good or bad!

I would like to know if you could keep following her steps going forward here, it could bring MANY hope to the hopeless.

I was eventually in remission after MVD…but it’s not forever, and this is the ONE TREATMENT that I could see myself doing…or passing it on to those who are suffering because they don’t know there is a slice of hope.

I’m sooooo happy for your baby… If you could tell us the city, state, country, hospital, that would be great! THANKS!

As long as I’m living in civilization, my email is. ■■■■■■■■■■■■■■■■■■■■

I also stay here and hang around because I work in the helping field, and because of this site, I have my life back at midlife. : )

Kimberly

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So happy for you!

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Yes, please keep us updated, something I would definitely try. So glad she is doing better, we all need hope with this! Glad she has such a loving and supportive Mom :) And thank you so much for sharing.

Betsy

5

Thanks, all, for your comments!

She is up this morn and has some pain in her face, but no big episodes (fingers crossed!). Occipital nerve area is very good! She has some pain if she touches that area, but otherwise, so far so good!

I will most definitely keep you up to date on her progress from here out! Prayers that she continues in this direction!

KC, I was also interested in how the one gal continued to do on the Ketamine. I found that post last night while on here.

Peace to all of you!

6

Thanks for sharing!
Best wishes and positive thoughts to your daughter!
Yes, please keep us up to date, (( hugs )) Mimi

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Update...48 hours since start of infusion on Friday...she woke up today with some pain in occipital nerve area on head. Pain in trigeminal area is up to about a #4 on her pain scale. Still no spontaneous episodes though, so we are taking that as a good sign. I will call her doctor tomorrow and let him know. Chances are he will schedule another infusion for the coming week. My understanding is the more it is used, the more it builds up and takes a positive affect on the nerve and brain. Here's praying! Peace and pain-free days ahead to all of you!:)

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Thank you for the update and we are praying this will work for her!

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Wow. Thank u for sharing. I suffer with occipital nerve badly too. Hoping the positives continue for yr baby girl x

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Thanks for sharing. Hugs and prayers. Wishing your baby continued success.

11

Sending your daughter positive energy.

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I already told my doc that I'll be the first in line when they start it. It's also a new treatment for severe depression and has a great response for those who are depressed - about 7 months before the depression came back. Thanks for sharing. I hope it helps and lasts a long time!!!