Your description of laughing and crying from relief just broke open a little spot in my heart. I wish you could have that all the time.

I had no pain at all during the infusion. Of course I am usually best in the mornings having been off my foot all night. My pain is the worst when I have my foot down. Best test for me would be a standing infusion. So not going to happen.

It is actually a little flared up right now so I am keeping it elevated. I seem to have an increase in circulation to BOTH feet which may just be something with me and the medication. I took a short walk this evening, it is 86 right now and both feet are warm and red. CRPS foot more red than the other one and just not tolerant of temp increase. I hope that settles after a day or so. I was able to walk yesterday with no problem.

Goin' swimmin' tomorrow!

Thanks - yes, we have read several articles and "studies" that indicate the prognosis for her overall is very good. She has been very rigorous with exercise, physical therapy, and a de-sensitivation therapy as well. Good news is the docs have all said she can physically whatever her pain tolerance can stand - no physical restrictions. We just met another family with an athletic daughter that went through this (foot) - though far worse than what my daughter has experienced so far. What eventually worked for them was a very aggressive motion, exercise, and PT regimen. She did fully recover/remission and is back into competitive sports. That was great news for us.

Best of luck! We will keep checking in and will post also as we have developments.

Hi,
I am new to this forum.

My heart goes out to each and every one here. I feel that no one can totally understand what one goes through physically and emotionally unless they walk in ones shoes.

These are shoes that I never thought I would be walking in .

I have severe " bee stinging " pain from tactile allodynia that has spread and gotten worse since my last accident .

Nothing helps or only minimally helps this horrendous pain!!

I am sensitive to the side effects of most medications. Alternative therapies do not help.

Has anyone here had any experience with ketamine , either sublingual, intranasal , oral or infusion as far as side effects and pain relief?

I decided against a ketamine infusion because I was told it can have not only bad side effects , but residual ones after the infusion itself as well.

I have used a compound cream with topical ketamine with some pain relief , but I am looking into other options for more pain relief.

Thank you all so very much in advance for your input.

Welcome to the forum,

I am so sorry you have had to come and join us but you will find good support and compassion here.

I am sure the ketamine experience is very individualized and very dependent on dose. My experience was very gentle and not at all scary. I took music and was with it enough to think in detail about places I have traveled. The dose I received is pretty low (0.5 mg per kg) which my doctor believes is helpful without the side effects of higher doses. I did not hallucinate, get agitated or feel distressed. I was a little sleepy, relaxed that same day but felt fine. They told me not to drive till the next morning and when I did it was no problem. Took my son to school which tells you I was feeling quite safe and capable. (I did have a backup plan but didn't need it ) I am small, don't take a lot of medication and am easy to knockout but still did okay.

I cannot say yet how much it helped. I have just had the one dose and go back next week for another. They told the first one may not do much. That said my pain level is pretty good and I am back to my routine walk after feeling a little flared the next day from circulatory effects. Based on my experience I can say it is worth exploring. They can always adjust dosage down or infuse over a longer period if needed.

I hope you find relief soon,
Sending Healing Love, Littlepaw

Hi vintagewine,

I take Oral Ketamine as part of my intense pain management regimen. It was first rxed for the burning feelings of my Neurological Hypersensitivity - you could call that Ultra-allodynia.

It does that job fairly well, taking it 4 times a day, and with Lidocaine Infusion and other meds takes me from a 9 to a 5. That - with my damage and problems - is exceptional.

Hope this is what you are looking for.

Dave.

Hello,

I have meant to post a little update but didn't get around to it. I had my second infusion Monday a week ago. I did not notice anything earth shattering but they did run the infusion a little faster and I could tell. Still no weirdness or disorientation though. Turns out they are prepping to go up on the dose. I didn't realize I was starting at half! Next time we go up to 75% of target. Maybe I will notice more with the increase. My schedule is little off because I was leaving for vacation and will skip a week. But we gotta live a little right?

It does seem strangely that my pain is not much reduced but I feel a little more tolerant of it if that makes sense. We'll see what happens with more juice!

Sending healing love, Littlepaw

I've been wondering how you've been doing with those, thanks for updating us!

Hey Littlepaw,

As well as it's anaesthetizing qualities, Ketamine has also been shown to be a Mood Elevator. Perhaps, even at half dose, the two functions are working to increase your tolerance to the pain?

Dave.

Hello all,

I received my third infusion this morning. Since I tolerated the first two well the PM increased the dose to 0.75 mg per kg. I could tell the difference, It was more dissociative. However, it still was not scary at all. I still heard my pleasant music throughout and had a kind of color swirling behind my eyes like when you normally close your eyes, just exaggerated. Since the same staff does infusions each time I felt very safe and comfortable.

I had no pain at all this time. Last infusion I had some from overdoing it the day before that hung around even during the procedure. This time it knocked out everything.

I am feeling hopeful. Though I did not feel the first two did anything earth shattering I noticed a gradual decrease of pain and increase in function over the three weeks between these last infusions. This seems like a good sign to me. I went on vacation and did better than expected! I walked even more than I have been able to and really had a lovely time. My foot has had longer periods of just feeling like a foot. So nice! I will have a follow up after the fourth one to decide if we continue and at what dose.

I'll let ya'll know how things go. Maybe this third is going to bring even more relief! Thanks to everyone for the support.

So glad to hear it! I love the bit about "just feeling like a foot." Happy for you that you were able to enjoy your vacation, too!