Questions about ketamine treatments
 

Hi All,
I hope everyone is having a good day. I am trying to get more information about ketamine treatment. Wondering if anyone here has had it and what it was like. Thanks! Did it help?

Hi Supergirl, I've never had ketamine treatments but hope that if you get it, that it helps you to feel better. Take care.

Hope some of this helps...
 

Hi,

I just had the 1 day high dose out patient (500 mg ) Ketamine infusion treatment last Thursday. I opted to do the 1 day over the 4-5 day because I didn't want to stay in the hospital for that long.

My treatment worked really well, I have had a 80-85% reduction in pain (right ankle/foot CRPS) since I had it. I have had the pain level creep back up slightly daily,but the pain management Dr said this might happen and it should plateau out in about a week. Of course it isn't a cure, but we are hoping with repeated treatments the CRPS will go into remission. Hoping!!

The 1 day treatment is different from the 4 day treatment in that you get a very large dose of Ketamine IV ( 500 mg ) over a very short time ( 8hrs) and have all the fun drug side effects with it( hallucinations are possible so you are given a drug called Versed which basically makes you forget it all). The 1 day treatment wasn't bad at all, I was very " drunk" until the next day, but my foot was fairly pain free for the first 2 days.

The 4 day in-patient treatment is where you get to stay in the hospital and you get about 30 -50 mg of Ketamine IV per hour all day long for 24 hrs a day for the 4 days you are there. So you do end up getting a much higher dose over a longer period of time, which in the long run might be more therapeutic in providing longer lasting pain relief. The good thing about the 4 day therapy is you don't get all the dopey side effects of the 1 day high dose therapy, but you do get the inconvenience of having to be in the hospital for 4-5 days.

Since everyone reacts differently to every kind of medication and treatment out there...no guarantee you will get any pain relief at all, and if you do there is no saying how long it will last...could be one day, one week, one month, one year or on....

Does this help? Or did I cause more questions than answers? I will be happy to keep checking back and answering any questions I can for you.

Best to you :)

Hi Terri!
Thanks so much! It is helpful to hear what others have experienced. So the versed made you forget everything? Did they also give you klonipine? I heard sometimes they give that as well. I am just trying to find out as much info as possible and hear how it has gone for others.

More Ketamine therapy info
 

You are so welcome!!

The Versed made me forget about 90% of the treatment and afterwards...whenever I would get a bit "vocal" during treatment I am guessing I got another dose of Versed. I do remember talking to my nurse at one point and saying some crazy things.

My pain Dr only uses Ketamine, Versed and some Fentanyl if needed in a small amount.

I would recommend doing the Ketamine treatment is you are in pain. I will be doing this treatment again since it is non-invasive and it does provide me with a certain level of pain relief.

Terri:D

Hi Terri!

Thank you so much for sharing your information! May I ask how you ended up with CRPS? Was it a surgery? Do you have type I or II? Just curious. Thanks again!! Please keep us updated. :hug:

No worries!

I had a 4-in-1 ankle surgery in May 2014. CRPS l
Still need my left ankle repaired surgically.

Best wishes to everyone:D

Terri

Outpatient vs Inpatient Ketamine
 

I, too, have had the outpatient "high" dosage IV ketamine infusions. I've had a total of 3 so far, and each time my pain specialist has increased the dosage and the "remissions" have lasted longer. I am now up to 400 mg (IV infusion) plus I take oral ketamine (600 mg/day). I get the infusions every two to two and a half weeks. My last one kept me 100% pain free for a little over a week and 75% pain free for the following 3 days. My ultimate goal, however, is to go for the 5 day inpatient infusion. I am planning a trip to Freedom Pain Hospital in AZ this fall. From what I have read and researched (and from what my doctor has told me), there is a much higher and longer lasting remission rate from the inpatient procedure.

If you go to the RSDHope ** and look up Ketamine here is a quote on why the inpatient is more successful:

*edited long copy/paste quote from a webiste that has Copyright/All Rights reserved*
I hope this helps!

I am going to Freedom Pain Hospital in AZ next week. My procedure starts Sept 8th. It is a 10 day outpatient with 2, 2day boosters every 2 weeks.

I'm so happy for you! I can't belileve I didn't know about this place
sooner as I only live a few miles away. I'll be looking into it.

ket iv
 

I found out about them thru Barby Engel's you tube. She lives in AZ but flew all the way to Florida for the initial inpatient but gets her boosters in AZ, so I wrote them. They originally said they were gonna start the inpatient procedure but decided to hold off and they are now "kicking off" their new 10 day outpatient procedure. I will be there until Oct 18 a full month an a half, but I have family there and driving back & forth from San Diego would be harder on me. I am excited and nervous at the same time. If you want I can keep you a breast of things (preferably the right breast) lol
take care and Smile it helps with the pain

And Shelbie is going to keep me posted on how it goes because I plan on going to their 5 day inpatient program once they have finished their outpatient series of programs! From talking to their staff, it's looking like it's going to be more toward the end of the year or early next year, but I am willing to wait. I've been doing some checking around on other 5 day inpatient ketamine programs and FPH still has the best, in my opinion (with regards to follow-up, boosters, screening and the credentials of all of their doctors are top notch).
Yay Shelbie....so excited for you!!!!

YAY Loves! ur the best! we could be a crime duo! we could be called Loves Shelbie...or Terriers4u
Smile and Laugh my friend

That is awesome to hear. Please keep us updated on how it goes!

Hi!

I'm coming in late to the conversation, but I wanted to let you know that the inpatient hospital stays are actually much better than the outpatient infusion clinics in that while you are receiving the ketamine over a 24h period it's allowing it to "stack" in your system and not allowing your body to take a break from it, like you would if you did the outpatient infusions (your body would take an 18h break in between each infusion). My 12-year-old does the ketamine outpatient infusions 4 days a week (for 4 hours) every 4 weeks and has done the hospital inpatient infusions 5 times now (every 4 months). She also takes ketamine orally twice a day in the form of a lozenge that was specially compounded for her at one of the pharmacies here. Perhaps that's something that the doctor could think of for you as well? Oh - we are in San Antonio, TX. Our doctor is Donald Bacon. He's a pain management specialist/anesthesiologist and works with RSD/CRPS patients all the time. He has a ketamine infusion room in his office - the only one in the city.

I hope this helps you!!! :grouphug

Catherine

Thanks Catherine! That is helpful!

2nd outpt Ketamine infusion
 

Hi again,


Wanted to let you know I just had my 2nd high does(500mg) Ketamine infusion therapy outpatient done 2 days ago...pain level is a 1 still so far. My infusions have been 4 weeks apart for now, this one could have been 3 weeks but I decided to tough it out 1 more week for some reason. Still on 300mg Lyrica, 75mg Topamax and other meds...hoping to stretch this one out for 4-5 weeks.

Hope your treatments are going well!!

FYI...I am being treated at a military hospital so treatments maybe done differently.(? not sure the difference between private and military.)

Best to all....Terri:)

That's awesome that you are able to stretch your treatments out so far Terri! I am jealous. Do you mind me asking where your CRPS is at and for how long you have had it?

I, too, receive the "high dose" outpatient infusions, but mine are every 2 weeks and the longest mine has lasted so far has been 10 days with a zero pain level (like I am in a "mini remission"), Each time my PM has upped my infusion (one before was 500 mg). My last infusion was 600 mg(this week). For my CRPS meds I take 600 mg of oral ketamine every 8 hours, along with 100 mg of Topamax, 12 mg of Zanaflex, 70 mg of Fosamax once/week and 3 mg of Clonazepam. I am waiting to get into a 5 day inpatient ketamine program, which does not start until the beginning of next year. My PM is highly recommending this for me and he believes I have a true shot at remission. My CRPS started in my left foot and ankle and has spread to my entire left leg and now the thoracic area of my back (due to a sympathetic lumbar nerve block). My symptoms started in late December 2013 and I was diagnosed via a 3 phase bone scan in February 2014.

Best wishes with your infusions and I hope they work for you and you are able to live as pain free as possible!

~Loves

Hiya...
 

I have CRPS in my right foot,ankle,leg and hip. Started after ankle surgery in May 2014. I was supposed to have a lumbar nerve block done a month ago, but I was diagnosed with a DVT in my right leg and put on Xarelto(anti-coagulant) so no invasive procedures are allowed until I am off of the Xarelto. This is why My pain Dr has me doing the Ketamine infusions so early in my treatment.

I should have done my ketamine treatments 3 weeks apart, but I wanted to see if physical therapy, mind-body therapy and Qi-gong type therapy could calm the fire...too early in my education still.

Wishing all the best of luck in your quest of peace and stillness with your RSD/CRPS.

Terri:)

Ketamine
 

Loves terriers,

Where are you getting your infusions?

Billy Alexander

I get them from Dr. Grzegorz Skiba at Omaha Pain Physicians in Omaha. He is the only doctor that I have found in Nebraska that does them. He and his staff are amazing. I would highly recommend him. He is very innovative and knowledgeable about CRPS and various other medical conditions. He even does stem cell treatments. He is a great listener and will never try to talk you into a procedure you are uncomfortable with doing. Here is a link to his website:
http://www.omahapainphysicians.com/index.html

Hope this helps!

costs?
 

Wow, that seems like alot of ketamine treatments! I'm looking into getting a 7-day in-patient treatment in Winston-Salem, NC hopefully soon because I'm in so much pain, i would rather die than live like this, but I was hoping my pain would be much better, ideally go into remission. I've never heard of anyone having to have the in-patient that frequently with out-patient treatments on top of it! Yikes!

So this leaves me with alot of questions, but for now, I'll focus on two main ones. 1) Does your insurance cover all of these treatments because I know they aren't cheap and I'm not even sure yet if my insurance is going to cover this one yet. 2) If your daughter needs on-going treatments and repeated treatments so frequently, is it really working like it should and will they eventually get to a point where they are no longer needed? I know there's no way to really know that. But I'm wondering if the doctors have given you any prognosis/hope? My heart goes out to you and your daughter.

Hi,
I just read your post regarding the multiple in-patient and out-patient treatments your daughter has had. I have never heard of anyone who has had to have so many that frequently. Is it that her CRPS is that bad and the treatments just don't last long? I'm considering a 7-day in-patient treatment in Winston Salem, NC. I was hoping the one would do the trick. However, my pain is extremely bad. I have a question for you regarding insurance, especially since your daughter has so many treatments. What kind of insurance do you have and does it cover repeated treatments? I hope she's doing well. My prayers are with you, your daughter, and your family.
Thanks,
Denise

New Member REALLY Seeking This Info!
 

Just registered here on this forum yesterday after finding threads about the Ketamine Infusion treatment!

Desperately looking to converse with those who have done this and need advice about it asap - I am about to undergo this soon!

Seems new members have restricted usage here so i can't PM anyone yet. I will keep checking back here to find someone to help me out. Meanwhile my New Member Intro Post should be up soon, awaiting Mod approval. Its called :

"My New Member Intro - Marine First Sergeant"

Hope to hear from experienced members soon as this things scares me, but the pain is OFF THE HOOK! All help is greatly appreciated!

Gunny