1. < Chronic Pain

Ketamine for chronic pain

Posted by ckeys @ckeys, Sep 3, 2019

My pain doctor recently prescribed ketamine as an adjunct to my pain management. Has anyone had experience with this? It has to be compounded and you inhale it through a nose spray. Since it’s compounded there is not much info on side effects so I’m curious about other’s experiences.

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teetee7 | @teetee7 | Sep 16, 2019

Hello to all! I wanted to share a little of my Ketamine experiences. I was prescribed the Ketamine nasal spray (compounded at an apothecary) over 3 years ago. It is mild and it takes a little while to "build up" in your system. It seems to take the edge off the beginning stages of a migraine and also takes the edge off of my Small Fiber Neuropathy. I haven't had any bad side effects with the nasal spray. You will start off at a couple of sprays a day and then you gradually titrate yourself up, to more sprays a day, not exceeding the dosage you are prescribed.

I just started the Ketamine Infusions, in April of this year, for my chronic pain and widespread neuropathy. They are nothing like the Ketamine nasal spray - no comparison whatsoever. I am prescribed the Ketamine Infusions from my pain management doctor and my Neurologist approved of them, as well. I first started with 3 infusions on a Monday, Wednesday and Friday (every other day for the first 3 infusions). After the first three infusions, you will go by how well your body responds to them and how long it takes for your pain to return. Once your pain starts to come back (usually 2 weeks or more after your 3rd infusion), you then go back and receive a "booster" infusion. The relief can last well beyond 2 weeks and you then return for any "booster" infusions. For chronic pain and Neuropathy, the infusions are 2 hours long. You will need a driver to take you home after each infusion. I hope this sheds a little light for everyone. Best wishes to everyone. I hope to post again, real soon!

REPLY
6 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 16, 2019
In reply to @teetee7 "Hello to all! I wanted to share a little of my Ketamine experiences. I was prescribed..." + (show)
@teetee7

Hello to all! I wanted to share a little of my Ketamine experiences. I was prescribed the Ketamine nasal spray (compounded at an apothecary) over 3 years ago. It is mild and it takes a little while to "build up" in your system. It seems to take the edge off the beginning stages of a migraine and also takes the edge off of my Small Fiber Neuropathy. I haven't had any bad side effects with the nasal spray. You will start off at a couple of sprays a day and then you gradually titrate yourself up, to more sprays a day, not exceeding the dosage you are prescribed.

I just started the Ketamine Infusions, in April of this year, for my chronic pain and widespread neuropathy. They are nothing like the Ketamine nasal spray - no comparison whatsoever. I am prescribed the Ketamine Infusions from my pain management doctor and my Neurologist approved of them, as well. I first started with 3 infusions on a Monday, Wednesday and Friday (every other day for the first 3 infusions). After the first three infusions, you will go by how well your body responds to them and how long it takes for your pain to return. Once your pain starts to come back (usually 2 weeks or more after your 3rd infusion), you then go back and receive a "booster" infusion. The relief can last well beyond 2 weeks and you then return for any "booster" infusions. For chronic pain and Neuropathy, the infusions are 2 hours long. You will need a driver to take you home after each infusion. I hope this sheds a little light for everyone. Best wishes to everyone. I hope to post again, real soon!

Jump to this post

Fantastic that you're getting relief! I just asked my neurologist about the infusions and I was told insurance doesn't cover them (in my area) and I could go to a Ketamine Center locally and pay out of pocket. Do you mind me asking how it works for you?

REPLY
1 reply
pfbacon | @pfbacon | Sep 16, 2019
In reply to @teetee7 "Hello to all! I wanted to share a little of my Ketamine experiences. I was prescribed..." + (show)
@teetee7

Hello to all! I wanted to share a little of my Ketamine experiences. I was prescribed the Ketamine nasal spray (compounded at an apothecary) over 3 years ago. It is mild and it takes a little while to "build up" in your system. It seems to take the edge off the beginning stages of a migraine and also takes the edge off of my Small Fiber Neuropathy. I haven't had any bad side effects with the nasal spray. You will start off at a couple of sprays a day and then you gradually titrate yourself up, to more sprays a day, not exceeding the dosage you are prescribed.

I just started the Ketamine Infusions, in April of this year, for my chronic pain and widespread neuropathy. They are nothing like the Ketamine nasal spray - no comparison whatsoever. I am prescribed the Ketamine Infusions from my pain management doctor and my Neurologist approved of them, as well. I first started with 3 infusions on a Monday, Wednesday and Friday (every other day for the first 3 infusions). After the first three infusions, you will go by how well your body responds to them and how long it takes for your pain to return. Once your pain starts to come back (usually 2 weeks or more after your 3rd infusion), you then go back and receive a "booster" infusion. The relief can last well beyond 2 weeks and you then return for any "booster" infusions. For chronic pain and Neuropathy, the infusions are 2 hours long. You will need a driver to take you home after each infusion. I hope this sheds a little light for everyone. Best wishes to everyone. I hope to post again, real soon!

Jump to this post

Thank you teetee. The procedure part sounds a bit like chemotherapy but with a different medicine. I've never heard of a Ketamine Center but I will ask around. It's probably too far away and too much recovery time but I will ask my pain doctor any way. Peggy

REPLY
1 reply
teetee7 | @teetee7 | Sep 17, 2019
In reply to @rwinney "Fantastic that you're getting relief! I just asked my neurologist about the infusions and I was..." + (show)
@rwinney

Fantastic that you're getting relief! I just asked my neurologist about the infusions and I was told insurance doesn't cover them (in my area) and I could go to a Ketamine Center locally and pay out of pocket. Do you mind me asking how it works for you?

Jump to this post

Hi @rwinney ! Thank you so much. I have had a lot of relief with the Ketamine Infusions. After my first infusion, I was able to get out of my wheelchair and start using my walker again. (I had a rough 2 years before being diagnosed with Autonomic Neuropathy. I get a lot of fainting sensations along with Orthostatic Hypotension, etc.). The infusions truly work well in reducing my chronic pain, inflammation, neuropathy and headaches. Absolutely amazing. I never thought I could ever feel relief, like I do after an infusion. The "booster" infusions I get are either 3 weeks apart or 5 weeks apart, now.

My insurance does not cover the cost for these infusions. Like you said, I don't believe insurance covers these yet since the FDA hasn't approved these infusions for chronic pain and/or neuropathy. I live in Arizona and we have several Ketamine centers here. Whenever I need a "booster", I call the day before I want to go and they fit me right in. It's a very well organized office with very caring and knowledgeable doctors. There have been 2 times where an infusion didn't take as well as my other infusions. The relief I generally get, is just phenomenal. I have been able to reduce and/or wean off of a couple of my medications, due to the relief these infusions bring to me. The infusions are pricey - $400 for each infusion (this is a good price, many other places can cost $1,000). This includes the cost for any anti-anxiety med, nausea med and nasal oxygen they give you. I still can't believe the relief I get, after every infusion. My doctors are truly delighted and a bit in awe, lol. I was in bad shape and have been for over 10 years. I am slowly rebuilding my core muscles and other muscles that atrophied. Just incredible. I hope this helps!

REPLY
1 reply
teetee7 | @teetee7 | Sep 17, 2019
In reply to @pfbacon "Thank you teetee. The procedure part sounds a bit like chemotherapy but with a different medicine...." + (show)
@pfbacon

Thank you teetee. The procedure part sounds a bit like chemotherapy but with a different medicine. I've never heard of a Ketamine Center but I will ask around. It's probably too far away and too much recovery time but I will ask my pain doctor any way. Peggy

Jump to this post

Hi @pfbacon ! I wanted to mention that the Ketamine place I go to, is all outpatient. I am generally there for a total of 3 hours - 15 minutes to prep me, 2 hour infusion, 45 minute recovery time. I sit in a very comfy recliner, they dim the lights and continually monitor me. I have heard of people being admitted into a hospital for Ketamine Infusions, but I don't know anything about those.

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 17, 2019
In reply to @teetee7 "Hi @rwinney ! Thank you so much. I have had a lot of relief with the..." + (show)
@teetee7

Hi @rwinney ! Thank you so much. I have had a lot of relief with the Ketamine Infusions. After my first infusion, I was able to get out of my wheelchair and start using my walker again. (I had a rough 2 years before being diagnosed with Autonomic Neuropathy. I get a lot of fainting sensations along with Orthostatic Hypotension, etc.). The infusions truly work well in reducing my chronic pain, inflammation, neuropathy and headaches. Absolutely amazing. I never thought I could ever feel relief, like I do after an infusion. The "booster" infusions I get are either 3 weeks apart or 5 weeks apart, now.

My insurance does not cover the cost for these infusions. Like you said, I don't believe insurance covers these yet since the FDA hasn't approved these infusions for chronic pain and/or neuropathy. I live in Arizona and we have several Ketamine centers here. Whenever I need a "booster", I call the day before I want to go and they fit me right in. It's a very well organized office with very caring and knowledgeable doctors. There have been 2 times where an infusion didn't take as well as my other infusions. The relief I generally get, is just phenomenal. I have been able to reduce and/or wean off of a couple of my medications, due to the relief these infusions bring to me. The infusions are pricey - $400 for each infusion (this is a good price, many other places can cost $1,000). This includes the cost for any anti-anxiety med, nausea med and nasal oxygen they give you. I still can't believe the relief I get, after every infusion. My doctors are truly delighted and a bit in awe, lol. I was in bad shape and have been for over 10 years. I am slowly rebuilding my core muscles and other muscles that atrophied. Just incredible. I hope this helps!

Jump to this post

Wow! This is incredible to hear. I'm so happy you're finding relief. I say, if you can do, do it!!!
The hospital I go to for my lidocaine infusions told me they just don't have the room yet for ketamine. I don't believe lidocaine is FDA approved for neuropathy treatment either but, my Dr believes in it and insurance covers it so, that's been my path for 3 months. I am by no means needing a wheel chair or walker currently and hopefully it won't come to that but the lidocaine is definitely shorter lived relief from what I understand than ketamine. My infusions take 4 1/2 hours weekly and when they work I am able to reduce my pain pills for a few days. Thanks for explaining the ketamine further for me. Nice chatting with you and all the best!
Rachel

REPLY
pfbacon | @pfbacon | Sep 17, 2019

Thanks, both of you. The more information we share, the better decisions we can all make - me too! Peggy

REPLY
carolinapearl | @carolinapearl53 | Sep 28, 2019
In reply to @teetee7 "Hello to all! I wanted to share a little of my Ketamine experiences. I was prescribed..." + (show)
@teetee7

Hello to all! I wanted to share a little of my Ketamine experiences. I was prescribed the Ketamine nasal spray (compounded at an apothecary) over 3 years ago. It is mild and it takes a little while to "build up" in your system. It seems to take the edge off the beginning stages of a migraine and also takes the edge off of my Small Fiber Neuropathy. I haven't had any bad side effects with the nasal spray. You will start off at a couple of sprays a day and then you gradually titrate yourself up, to more sprays a day, not exceeding the dosage you are prescribed.

I just started the Ketamine Infusions, in April of this year, for my chronic pain and widespread neuropathy. They are nothing like the Ketamine nasal spray - no comparison whatsoever. I am prescribed the Ketamine Infusions from my pain management doctor and my Neurologist approved of them, as well. I first started with 3 infusions on a Monday, Wednesday and Friday (every other day for the first 3 infusions). After the first three infusions, you will go by how well your body responds to them and how long it takes for your pain to return. Once your pain starts to come back (usually 2 weeks or more after your 3rd infusion), you then go back and receive a "booster" infusion. The relief can last well beyond 2 weeks and you then return for any "booster" infusions. For chronic pain and Neuropathy, the infusions are 2 hours long. You will need a driver to take you home after each infusion. I hope this sheds a little light for everyone. Best wishes to everyone. I hope to post again, real soon!

Jump to this post

Hi.. just reading your blog about chronic pain. I am on the fentanyl patch as well as hydrocodone. I was supposed to try the implanted pain nerve stim, but really don't want another surgery. I've never heard of ketamine. I want more than anything to be off this patch as I don't want to lose my pain management doctor and the next one won't prescribe. Thanks for info, I'll do some research! Carolinapearl.

REPLY
rnquincy | @rnquincy | Oct 27, 2019
In reply to @teetee7 "Hi @pfbacon ! I wanted to mention that the Ketamine place I go to, is all..." + (show)
@teetee7

Hi @pfbacon ! I wanted to mention that the Ketamine place I go to, is all outpatient. I am generally there for a total of 3 hours - 15 minutes to prep me, 2 hour infusion, 45 minute recovery time. I sit in a very comfy recliner, they dim the lights and continually monitor me. I have heard of people being admitted into a hospital for Ketamine Infusions, but I don't know anything about those.

Jump to this post

Hi TeeTee, I am new to this site & am interested in your Dx of SFN. I too have been suffering from this with progressive systematic involvement. As you know, the pain in immeasurable. It has spread to my head & face now. I am not ready for Medical Marijuana & am interested with the use of IV Ketamine. Was there a mention to try the nasal route first & then IV depending if the futility of it then the IV route?

REPLY
bluegirl0 | @bluegirl0 | Dec 3, 2019

I've been having ketamine infusions for Treatment Resistant Depression (TRD) and PTSD for over a year now. Initially, I had to have 6 infusions in 2 weeks at $495 each, then I went monthly. Now I get compounded oral sublingual ketamine 150mg which I take every other day and this sustains me for quite a while. I went on TV with my doctor and he gave me a freebie. Now he knocked the price down to $450. I'm going for a booster tomorrow. It saved my life. I've been reading that some people have infusions for pain. I don't know why insurance won't pay for that since ketamine is used for pain. It's only off-label for depression I thought. I'm trying to find a way around these big payments since I live on SSDI. My credit cards are getting maxed. My idea was to see if my pain management doctor would do muscular injections and if that would be paid by insurance. The nasal spray doesn't work. I would recommend a book called "The Ketamine Papers" - Edited by Phil Wolfson,MD and Glenn Hartelius, PhD. Tons of information. I'm also searching for clinical trials.

REPLY
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