Getting ketamine infusion
 

I am starting ketamine infusion on Monday :). My God I hope this does something! I finally broke down and went to a new PM today after being thoroughly unimpressed with my first venture. Chose the doc from positive Yelp reviews and knowledge that they do ketamine in office. The doctor was agreeable, no nonsense, non-blaming and for now didn't try to talk me into anything I didn't want. :eek: What a concept. Oh, also he is not crazy about LDN citing it is mildly neurotoxic. I had not encountered this info before. He says he likes ketamine much better.

They do a less frequent protocol for people who are not super severe. So either once a week or every other depending on my response for the first batch then once a month then boosters as needed. $400 per infusion, they say insurance usually covers. I am wondering why so many people run into waiting lists. This was really easy. I encourage everyone to keep after what you need and not wait forever. If the big practices can't do it there may be small practices that do. I found three in Austin and didn't even check everywhere.

I pray this knocks this pain out. I know I could be worse and so many ARE worse but I am still pretty limited and it takes so little to knock my nerve which is now screaming into overdrive (thank you stupid cold laser) I have had enough of the 500 fire ants living in my ankle again when I put it down.

Please send prayers and hugs. I am nervous and fearful. Now that I see how little it takes to bring my pain back I feel this is probably my best chance and am afraid to consider what it means for the future if it doesn't work. :( Ugh so scarey....

Healing Love to all :grouphug:

Please keep us posted....ldn neuro toxic....hmmm need to look into that...keep up the fight....:hug::grouphug:

Hi Littlepaw,

Wishing you the very best of luck with Ketamine Infusions. I take Oral Ketamine 4 times a day for the Neurological burning and it reduces it by 50%. I am pushing my nighttime dose at the moment, so am bordering on hallucinatory side effects, but all I get is pretty colours around the tv.

Dave.

I was really surprised by this and can't find one thing about it. ????? From what he said I got the impression that it is at higher doses. Doc said at lower compounded doses may not be a problem but he didn't want to take chances on people with known nerve damage. You would think there would be at least one article on this in Pubmed. I will have to ask next time as there are such good reports on LDN...hmmmm.

Let the countdown to Monday begin! 6 days, you can do it! Believing and praying it will give you relief. Keep us posted. Glad you found a doctor you like, too.

$400 is very reasonable. It is a very simple procedure and there shouldn't be waiting lists. The biggest thing is they need the right pump that can didperse the K at the correct speed.

Put together a playlist with only positive music. Preferably with no lyrics. It can make a big difference. Bring someone you trust and are in a good place with!

I so hope it helps you. I would ask if they give you anything for nausea or halucinations before or during the infusion. They usually give something like zofran and versed. Also find out how much they're giving you.

I just had a one day high dose a couple of weeks ago (my first ever) and it was a whopping amount. There was no reading or music. I was completely out for four hours, and it took another three hours after the infusion was stopped for me to be with it enough to be dumped into the car and taken home :) I had no idea from what I'd read of others' accounts it would be like that. It's good to know.

Good luck!

Denise

Best wishes and hope it works wonders!:hug:

Started mine about 2 months ago and I really should wait until AFTER you have yours before saying anything - but will keep it low key. LOL :)

It was the most bizarre and unreal trip Ive ever had and don't know how people use this drug for recreation out there in places! What is good though, is that you are (you should be so make sure you confirm) are able to have your loved one (Wife, Husband, daughter or son) there with you in the same room with you while doing it. I would think you are only doing the 1 hour treatment first right? Well make sure they are inside same room since they don't put you "out" during it and it is comforting to know they are right there if things become a bit scary at times. My wife and my Service Dog were right there the whole time.

Did it work for me? Well, depends on what the reason is you are going in for it on.
Pain, PTSD, anxiety, depression, suicidal ideations? Any of these, because thats what the 1st 1 hour session is actually for based on what my Dr told me - or what its been shown to work best on i guess I should say? So my answer is YES IT WORKED!

I felt "lighter" if that makes sense. And more pain free for awhile. It worked on me and I will actually be going back for my day long session sometime next month too!
PLEASE be sure to debrief us all on your thread here about your experience and how things felt for you LittlePaw! Nothing to worry about at all. They will give you something to make sure you are calm, but try your best to be calm and in good spirits too ok? It all helps you out during the treatment - think positive thoughts since our mind can help the body in ways we never thought of! :)

Peace be with you my friend!

Oh such wonderful news!!! Definately keep us posted!!
Sending healing prayers :hug:

Thanks everyone for all the tips and encouragement! I will take soft music and my honey will be there with me. I am sure they don't want me hallucinating and pulling my IV out so will treat accordingly. It is a relatively low dose. I will find out how much and post. The infusion is 1.5 hours long. He said this works for most of their folks. This doc seems flexible about the frequency depending on my response which I appreciate. I am little like my name and may not need as often as some people to start. If I need more we can bump it up. He did say not everyone responds to the first infusion and may take the next one to tell anything. I will post an update when I am not too goofy, was told I will sleep a lot. I could use a nap...;)

I'm so happy for you. I wish you all the best!

Wishing you the very best Littlepaw. :) You have every right to it!

Three more days!!! We're rooting for you and hoping for good outcomes for you!

LittlePaw - anxious to hear your results
 

My daughter - age 15 - has CRPS in her left ankle and the pain is very serious along with discoloration, coolness, and skin texture changes. Tried the nerve blocks - the pain management doctor said up to three to see if possible help, after three we see no benefit. So, now looking for alternatives. Have seen many references to Ketamine treatments, but most seem to much more intensive (over several consecutive days) than what I have seen described here. We are in Austin as well, so depending on how things go might want to know what doctor you are seeing. Good Luck

Welcome to the forum fellow Austinites. I am so sorry your daughter and family are going through this! Try to stay hopeful and remember that children and teens have the best odds of beating this thing. They are actually quite high in her favor per literature. Get that girl in the pool as much as you can and doing plenty of gentle exercise as tolerated, exercise bike, etc. Keep that sluggish blood movin' to remind the nervous system what to do with it.

Heck I say go ahead and look into all your options. It never hurts to get information. You can always keep info in your back pocket and choose later whether to use it. Ketamine is really pretty safe, used frequently in ER and other settings for anesthesia since you don't stop breathing on it even in higher doses. Don't worry about how it goes for me unless the staff is flat out cruel and incompetent which seems unlikely. We all respond differently to different treatments.

Dose is 0.5 milligrams per kilogram. A low easy start to see how I react and if that works for me, why give more than necessary? I like that the treatment seems a little tailored to specific needs. I was wrong on the cost, it is even less. Doc said 400 but billing called and told me 300!

Capitol Pain institute on Shoal Creek. Dr. Schocket started the clinic but ask who has the most experience with your daughters age group. They may have another recommendation for PM for teens.

Sending Healing Love and prayers, Littlepaw :hug:

I found LDN increased my pain. I thought it was useless and quit after a few months.

Littlepaw,

Only a few hours to go, wishing you all the best.

Dave.

Thanks so much to everyone for the support. It was nice going in with that. I am all done and no more goofy than usual. Took a nice nap with my kitty when I got home. The ketamine infusion was easy and pleasant. They put in a little versed so I was relaxed.

The music suggestion was really helpful. It blocked ambient noise and gave me something to focus on. I put my mind in the pleasant direction of thinking about places I have been where I felt really good. This seemed to work well and I was calm and peaceful. Overall, no problems, no nausea, no weirdness. Yeah!

I don't know if these will work as I hope but I do know it is cumulative and it certainly wasn't difficult so I will go for the next one and post results when I feel there is something to report.

Sending Healing Love, Littlepaw :hug:

It had been so may years since I had been pain free that I started laughing and crying when I had my first infusion because it was so shocking to feel normal. It made me realize even when I have other forms of anesthesia I'm never truly pain free.

Did you feel major relief?

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. :hug:

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.

New Treatments for Allodynia
 

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 :hug:

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 :hug:

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.
:grouphug:

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!

Me too :) "just feeling like a foot" made me smile. Congrats Littlepaw and thanks for the progress report.

I hope and pray these do the trick! Glad to read your uodate! :hug:

I am so happy that your infusions are working for you , Littlepaw..
Thanks for your update.

Hi Littlepaw,

Sorry I'm coming late to this update, I missed it amongst the chaos in my life.

I am so pleased you are beginning to see some real benefit from the Ketamine, I think it is an underused wonderdrug in all it's forms. Glad your foot is feeling 'footy'.

I get the colours around the tv when I push the dose of my Ketamine, if they persist or are enhanced enjoy them by trying to manipulate them, make them swirl or flow, or brighten and dim. Just make sure you stay relaxed and in a positive mood.

Dave.

Update: infusion 3
 

Hello All,

I am making some progress! What is so thrilling is that because of vacation and now holiday office closure I will have gone three weeks in between infusions and I still feel it is doing something. Clearly it is not just from anesthetic effect or high doses over days and days. Maybe there is something to the idea of breaking pain memory to reduce other symptoms. So far...

Color difference is improved. Swelling is improved, though mild it was there and causing discomfort. Nerve seems to be Moving some and not so stuck, probably due to less swelling. Stinging sensations at the 4 inch incision on the sole of my foot are gone! I still have stinging at the five inch incision at my ankle when standing but it feels more superficial and less deep. I am sleeping better because I am more comfortable.

This is working like I hoped in that I am using the improvement to push recovery and activity. This means I sometimes overdo as I test limits but I seem to recover more quickly. My greatest hope is that I can increase strength, motion and endurance while the infusions are on board and have that improvement hold. I am still on nortriptyline but only taking Ibuprofen and Tylenol for pain.

I can honestly recommend low dose ketamine at this point as something to try. I am still not suffering side effects other than the same day sleepiness and lethargy. No post-infusion weirdness like I have read about. I had slight nausea for maybe 15 minutes afterwards with the dose increase last time but it resolved quickly and I was fine. I tend towards nausea anyway.

Thanks for the prayers and support! I really do appreciate it.
:grouphug:

That is so exciting to hear! Thanks for the update!

Hello Littlepaw and everyone else!

I'm new here and was just diagnosed with this horrible thing after 2 years of symptoms. Have had 2 foot surgeries for neuroma removal, think 1st one brought on CRPS but ortho recommended 2nd one (should've have done it!) as we thought neuroma was growing back.

I went to a neurologist last week who definitively diagnosed me with CRPS.

I'm on Baclofen, Gralise, and Tramadol (prn, but take daily). Very interested in starting IV Ketamine. Currently I'm working as an RN, have had to cut my hours by 2/3rd and not sure if I'll even be able to continue working at all due to my symptoms.

If wouldn't mind can you PM me, or state here, but wonder who you're seeing in Austin for treatments. If anyone else has suggestions I'd very much appreciate them. Currently have a pain management doctor at Austin Pain Associates.

Thanks so much, wonderful community here! :)

Hi and welcome Martha! I will send you a PM.
:hug:

Thanks so much! :)

Hate to 'double post', but see no other way to do this since I can't pm or do other messaging.

Thanks for 'visitor message' Littlepaw! I had a Morton's neuroma in my left foot, saw a podiatrist, then saw an orthopedist here in Austin for the surgeries. Once I get my permissions here I'll send you more details, could be handy down the road. :)

I was pretty happy with my surgeon, he implanted the cut nerve ends deep into muscle but apparently they still tried to grow back I guess. Just don't think there was any way around having the first surgery at least, but now am stuck with this burning hot sensation in the entire forefoot with numbness up to my knee on left side of leg. I don't wear shoes or let anything touch foot unless I have to, like while at work. Have used ice, soft socks, heat, everything modality there is except physical therapy which I hope to start soon.

I have high hopes for IV ketamine after watching some YouTube lectures on CRPS last night, read some medical publications. Living a life like this, and/or in eventual poverty if I can't work, is not a happy thought. Feel like all of my friends and family are sick of hearing me whine, too. Haha!

Have a great day,will definitely follow your posts and read more about the condition itself here on forum. I really appreciate your time and your very upbeat attitude! Love talking to another Austin gal. :)