The Pain Management Consultant has suggested I try IV Ketamine for chronic MS pain as other pain meds have become less & less effective.
Does anybody else have experience of this?
I’d be really glad to hear how/if it’s worked for you,
Salli
Dont really know about pain management (after 13+ yrs of MS) - thanks for posting this. anyway!
Marcus.
Hi,
I had a 3 day infusion of Ketamine at the beginning of June. I had mine subcutaneously into my stomach rather than IV but otherwise it sounds like the same treatment.
Ketamine works by resetting the pain receptors in the brain and it is also a very effective analgesic so you get immediate pain relief. It is an hallucinogenic as well though so don’t be surprised if things get a bit weird and whacky while you are on the drip. It was quite an Alice in Wonderland 3 days for me but although I was definitely hallucinating I knew all the time it was due to the ketamine. I experienced things like having the hospital room turn into an à la carte restaurant and the drip stand turning into a palm tree etc. Odd but not terrifying.
It can give up to 2 years of pain relief after the infusion has finished and the pain receptors have reset. I have been amazed at the reduction in my pain. From being in constant mind-boggling agony to almost no pain at all has been bliss. If it is being offered to you, I would grab the chance. Not many people are fortunate enough to have a specialist who is familiar with this treatment so if your doctor feels you would benefit and is able to do it, go for it. It doesn’t work for everyone but the odds are definitely in your favour.
Best of luck and let us know how it goes,
Belinda
Thanks ever-so-much Belinda,
I am really keen to try the Ketamine infusion - just wanted to see how it was for someone who has had it themselves.
The Pain- Management Consultant (I know just how lucky I am to have one!) went through the teechnical/scientific process of it; he’s great, I’ve been going to his clinic for years. I’d reached the point when I was beginning to think head-amputation was the only available next option.
Frankly, I can’t wait, my current pain-meds are more side-effects than pain-relief. It’s been very reassuring to hear from you; I’ve asked around, but couldn’t find anybody who had personal experience of it, especially as I’ve been warned the pain may get worse before it gets better.
I’d love to keep in-touch, compare notes etc. We seem to be a very select few…
Salli
p.s. Cheers to everyone else for your messages of support - I’ll keep you posted. sb
Hi Salli,
I have sent you a PM.
Cheers,
Belinda x
[quote=brog64]
Hi,
I had a 3 day infusion of Ketamine at the beginning of June. I had mine subcutaneously into my stomach rather than IV but otherwise it sounds like the same treatment.
Ketamine works by resetting the pain receptors in the brain and it is also a very effective analgesic so you get immediate pain relief. It is an hallucinogenic as well though so don’t be surprised if things get a bit weird and whacky while you are on the drip. It was quite an Alice in Wonderland 3 days for me but although I was definitely hallucinating I knew all the time it was due to the ketamine. I experienced things like having the hospital room turn into an à la carte restaurant and the drip stand turning into a palm tree etc. Odd but not terrifying.
It can give up to 2 years of pain relief after the infusion has finished and the pain receptors have reset. I have been amazed at the reduction in my pain. From being in constant mind-boggling agony to almost no pain at all has been bliss. If it is being offered to you, I would grab the chance. Not many people are fortunate enough to have a specialist who is familiar with this treatment so if your doctor feels you would benefit and is able to do it, go for it. It doesn’t work for everyone but the odds are definitely in your favour.
Best of luck and let us know how it goes,
Belinda
salli - i wish you luck and if belinda’s experience is anything to go by, you can consider it a holiday with palm trees and a la carte restaurants
carole x
Hi Salli, I have ketamine infusion every 6 weeks.I live in the US. It has changed my life! My pain went from a 10 everyday to a 3! Good luck to you!
wow…this forum is so worthwhile.
I was using oral morphine on top of high dose gabapentin and other stuff…and still writhing in agony up until last month.
Nice to know there are some “big guns” out there to deal with it. Doctors keep on checking you aren’t depressed but it was the unrelenting pain that nearly tipped me over the edge.
Let us know how it goes for you… Belinda’s experience sounds pretty good to me 
Gillian
I had liquid ketamine prescribed through the Pain Management Clinic, it tended to make me feel so spaced out though I had to give it up.
Last year, I had to have an emergency operation and was on a morphine and ketamine infusion (IV) - I have never had such an experience like it - talk about hallucinate! Trouble is you don’t realise it’s not real when it’s happening - I saw dead bodies in my bed and all sorts - it really was awful and still haunts me.
I would think twice before having it IV - I certainly wouldn’t have it again.
Yuck jws. That sounds seriously terrible :-(. It could have been the combination of the morphine with the ketamine that tripped you out so badly.
I know my neuro did say that if the hallucinations got too bad she would give me a low dose of an anti-psychotic to take to counter them but as I said I was aware all the time that the hallucinations were due to the ketamine.
So sorry to hear of your awful experience though. I can understand you not wanting to go through that again.
Belinda
Hi everybody,
I had my first Ketamine infusion last Friday - just one dose, took around 2 hours (I think ).
No hallucinations fortunately, I don’t think I did or said anything too daft, it was rather like being a bit tiddley!
For the past few days I’ve been more tired & grumpy than usual; but I have managed to slightly reduce my pain-mediation intake, so fingers crossed.
I’ll keep you posted on my progress; however it turns out I’m glad I had the chance to try it.
Thank you all for responding, it’s given me much food for thought. While I did have the standard steroid treatment for a relapse the week before the Ketamine, I’m not sure I’d like to add any other medications into the mix - but I’ll see how I get on. Who knows, if anyone had told me a few months ago I’d be taking horse tranquilliser I would have laughed my socks off.
Sometimes I do wonder whether I’ve strayed into a parallel universe…
Salli
Hi Salli,
Glad it went well.
Fingers crossed for good pain relief. Was it just the one infusion? Are you having more?
I haven’t had my second infusion. Had a few complications such as severe pneumonia which nearly killed me and have had a rather long convalescence as a result. Which is also why I never got around to answering your email. Sorry xx
My neuro is changing most of my meds around to try and avoid another hospital admission at the moment so we il se how the new nmeds work, but the Ketamine is still there as an option if needed.
Keep us posted on how the pain responds to it and remeber that the usual protocol is for a 3 or 5 day infusion so if you aren’t getting complete resolution of your pain put your foot down and insist on the full treatment.
Thinking of you,
Belinda xxxxx