follow-up ketamine question: can it ever make the pain worse?
 

My pain doctor at USC has a new patient who reports that his or her pain increased as a result of having had ketamine at another institution.

So my question is this: Other than complications incidental to the procedure (and there were a lot of them with the coma treatment) does anyone have personal knowledge of someone's pain actually having been made worse by the ketamine itself?

Thanks,
Mike

Mike,

My pain has at time initially increased the same night or next day after my booster infusions (200 mg per day) but within 24 hrs, I feel better then ever. As for any kind of long lasting pain post ketamine, I've never heard of it happening.

Dawn

Yes it is possible to get more pain in my case it was too high of dose, he started slow and every day would go up then one day I just got sick and went into a flare and in the hospital. He said when its too high for a person and not enough to knock them out it makes them worse so he just lowered it and it worked from then on.

Sam

Sam -

This is exactly what I am interested in. So forgive me, but here are three (compound) questions by way of follow up:

1. Do you know the doses you had been at (A) in the last infusion before the flair, (B) in the infusion the caused the flair and (C) the lowered dose thereafter at which all was well? Was any attempt made to increase the dose again in later infusions?

2. How long was each infusion, what was the sequencing and where were you on it when you flaired? E.g., your 3rd of ten 4-hour infusions over two weeks.

3. When you say you "went into a flare and in the hospital," I take it you were admitted after showing up for an out-patient infusion. How long did the flair last, how long were you in the hospital and do you recall what was done to bring the flair under control.

Thank you in advance.

Mike

First no I dont know the right dose as they wouldnt say each time but I believe my regular dose after that, as in the one that helped was 250mg so something higher then that made it worse. Each person is different in their doses so many others had theirs much higher.

I did the ten day out patient infusion where they start at 60mg and go up each day I believe it was my seventh treatment I got worse. They believed it was because it was too high because I went into my flare like 10 min after it all got in and that usually doesnt happen unless its the meds.

When I said I went into a flare and in hospital my doctors office is right next to the ER so I was sent right over and admitted and given the meds that work for me to bring my flares down which includes iv demerol, fentanyl, and valium. I probably ended up there for 10 days or so if not more. When I go into flares my hospital stays are never for less then 8 days at time its been for months even before but not from the ketamine.

After I went home they stopped treatment for a week to let my body rest and then restarted at the 60mg and went up again slow and stopped at the 250 and never tried going up after that ever again and havent had an issue since.

Hope some of this could be helpful, we are all different so some will need lower doses while others need the highest possible.

Sam

This is a fear of mine increased pain. For me when I had a lidocaine infusion it increased my pain. Then went on to have other procedure which also increased my pain. My doctor thought that what is supposed to settle the nerves actually revs them up. I have thought of doing ketamine infusions but I am also fearful of getting worse. Sorry to sound negative. We are all different and some people do get relief. I guess with any procedure for RSD you have to take a chance since there is so much unknown and we all respond different

I really understand the fear I have had so much fear in me everyday cause there is no absolute what will happen, will my pain stay down, will I end up in the ER, will this treatment be my hero or will it make me much worse then I am now.
This is kind of what happened with the SCS for me the trial was what got me out of a wheelchair and walking again, but then the permanent was put in and within a month was worse with it on then with it off.
Like you said though you do have to take some chances whether they turn good or bad, cause if you dont ever try then you will never find nothing to help. I have gone through 10 states and spent well over 1.3 mill. dollars (thank goodness for insurance) on treatments. I know when things seem hopeless as I feel now but for each of us there has to be something out there, thats the only thing that keeps me going is that little bit of hope know matter how small it may be at times.
Ketamine is different then lidocaine but not sure how much. When I get flares I get both at the same time and it really helps to sooth the fire.

Sam

anyone hear of multicomponent Amitriptyline 1% katamine .5% with vanicream being used

Hi Jenna,
Is this a compounding cream for topical skin use? What is the percentage of Amitriptyline? There is a compounding pharmacy in Florida that is soothing to those with skin issues that is ketamine-lidocaine, and antibiotics-If anyone has the formula or pharmacy name, I would be grateful to have their name and recipe for my Dr. here and compounding pharmacy here. Thanks ahead of time, your friend, loretta

Hi Mike,
Just a quick response to you...I had ketamine treatment inpatient and one booster in Sept/Oct 2010. All was working well and dulling the pain but unfortunately I was not watched close enough in the ICU and fell which in turn brought all the pain back 1,000 times worse now than it ever was in the last 5 1/2 years I've had rsd!!! I feel like I am having a heart attack with chest pain/burning now (EKG and all is normal so it is rsd) and must take pain meds every 3-4 hours OR it worsens to the point I feel like I am burning up alive and shaking inside and the pain has been horrible. It started I believe (if my mind can recall) after the first booster and has never stopped. The first thing in the morning is horrible and I can't move until I take pain meds and pray for an hour or so before I can even move out of bed. One thing I rarely before the treatment was if you get hurt/fall after treatment be prepared for it to come back with a vengence!! It is sooo horrible now and I wished I did not do it because I was much better before the treatment. Another thing is the medicine makes you paranoid and I felt like I was dying too. It was unreal. Just don't fall or hurt yourself in any way after you have your treatment because it is a nightmare. Best of luck to you and let us know how you make out with it.
kathy d

Hi Sam,
I agree with you because I did not have enough of (or too much) of either ketamine or versid because I pulled my iv's out three times and hallucinated during the treatment. Also, I kept coming in and out of consciousness. I just went through a nightmare with the whole scenario. One stupid person wasn't paying attention to what they were doing and left me to fall and now my life is soooo ruined. I live in a nightmare each day. I just keep praying it will all eventually calm down but the bad/cold weather here in eastern PA is just about killing me this past week. It is so amazing to hear that those that had the treatment all have different reactions to it. Interesting.
Best of luck,
kathy d

I think you mus of needed more versed and probably lower ketamine. Where I went out of the hundred and some only 1 ever had hallucinations saying he could see ants on the walls, well it didnt help the decor. helped that along but it never bothered him. I sure hope your life will turn around and forget about that nightmare. There was one other who, they didnt hallucinate it just made her more hyper and wanted to go out and buy they weirdest thing for us such as a towl or a toilet brush and a vacuume. It is interesting how we all respond so differently, but its not just us each doctor has their own protocals like my doctor wont go above I believe 350 while others are giving 1 to 2 thousand mg. If I cant go over 250, I sure would like to know what 1-2 thousand would do.
Where are you in the PA, I live just above Allentown.

Sam

Hi Loretta, The name of the pharmacy in Florida is Promise Pharmacy. It is located in Palm Harbor, Fl. The address is 31818 U.S. Hwy. 19N. Palm Harbor Florida. Phone number I (727) 772-0500. I think I sent this to you in a PM a long timwe ago. I Live about 5 Min. from there but have never have used them, there was another member on this board that uses them and I think they said they drive about a 1/2 hour to get to the pharmacy, but I can't remember who it was. Hope this helps. Maybe your Dr. can contact them.
Your friend Wendy

Amitriptyline and Ketamine
 

There is a cream called EpiCept NP-1 which is Amitriptyline and Ketamine.
You can google this product.

There are several studies at Clinical Trials Gov on this search.

Also any doctor can send this prescription combination to a compounding pharmacy.

Raizel

I'm 99.9% sure I know the girl you are talking about. She got the infusion from the doctor I get the infusions from. She was the first of his patients to get worse. I felt so bad because I felt responsible for telling her and her mom how amazing they worked for me and referred them to my doctor. I know there was no way in knowing that she would get worse, but still... she's been like a little sister over the years. I do know that she received a lower dose than what i usually get, I've gotten up to 2g over the 4 hours, and tend to get between 1.5 and 2g per infusion. I believe for the first infusion the amount is about 1g over the four hours...

Loretta I have it and have used it for a long time I will pm u both the pharmacy and the compound mix tomorrow ok cz