Quote:
Originally Posted by EvaSoholm
Fmichael: Thank you very much for your very thorough respond. I have tried to summarize below my “ketamine treatment history”. I am not sure that anything but a ketamine coma would work on me (which Dr. Rohr in Germany agrees with), but I am of course very open for other alternatives, since a ketamine coma isn’t possible right now.
My ketamine treatments:
June 29th – July 2 2010: Ketamine treatment at Dr. Kirchpatrick’s in Florida, USA. The treatment works exceptionally well, and I am relieved of my pain and can start using my foot again (back then it was only my left foot that was affected by the CRPS).
July – August 16 2010: There is great progress in my condition, and I’m training in a heated water pool 3 times a week for about 30-40 minutes. I can swim breaststroke, crawl and walk on my toes in the water without pain. I started the last year of high school and manage to drive to school by myself and attend classes for up to 8 hours a day.
August 17 2010: The pain returns, and gets worse every day.
August 28 2010: The pain has now spread to my right foot as well.
September 6 2010: Treatment at clinic Saarbruecken (Germany). I start Ketamine infusion in a jugular vein. First day: 100 mg of Ketamine/24 hours. Increasing the dose with 100 mg per day. At a dose of approx. 800 mg I start seeing the effects, and my pain diminishes a little bit. I stop at a dose of 1100 mg Ketamine/day, which is held for 3 days, then reducing the dose over three days, respectively, 800, 600 and 300 mg. The pain is almost gone after the treatment, but there is still a little activity / tingling in my feet.
October 11 2010: It starts deteriorating again, I am able take fewer steps and it is more painful.
October 19 2010: Booster treatment at Mølholm Private Hospital where I get 150 mg S-ketamine/4 hours.
October 21 2010: There is a little progress when I’m in heated water pool in the morning. Unfortunately, the pain returns in the afternoon.
October 25 2010: I begin a four days treatment with S-ketamine at Mølholm Private Hospital. First days dose is 200 mg/4 hour, then 350 mg/4 hour, 450 mg/4 hour and 550 mg/4 hour on the last day. On the third day I start being able to do without the pillow under my feet, for short periods, and on the fourth day I sleept all night without the pillow and with a blanket over my feet. To prevent relapse, we agree on a booster treatment on November 16, this time with a larger dose.
November 5 2010: The pain is returned and we believe that it must be the S-ketamine, that doesn’t work as well. We also heard from Dr. Rohr, Germany and Dr. Kirkpatrick in Florida that they do not use S-ketamine, but ketamine (Katalar). Dr. Kirkpatrick wrote that Schwartzmann in Philadelphia never got S-ketamine to work. Eva contacts Bent Uhrbrand at Mølholm Private Hospital, who tries to get permission to use normal Ketamine, which is not marketed in Denmark.
November 22-25 2010: Again treatment at Mølholm Private Hospital, this time with regular Ketamine. The dose is: 700mg/4 hour, 800mg/4 hour, 1000mg/4 hour, and 1200mg/4 hour. It works very well, and I have no more pain after the treatment. After the treatment I see progress.
December 3 2010: The pain is spreading to the left arm and shortly after becomes so bad that I can’t even move my arm or stand any touch from clothes or blanket on the arm.
December 6 2010: Treatment at Mølholm Private Hospital again. A four-day ketamine treatment, this time with ketamine recieved from Germany. Doses are 800mg/4hour, 1000mg/4hour, 1200mg/4hour and 1500mg/4 hour. This treatment doesn’t seem to work so well, it takes the pain in my left leg and some pain in my right foot and left arm, but there is still too much pain for me to exercise.
December 20 – 22 2010: A three-day treatment at Mølholm Private Hospital, this time with ketamine from Switzerland because they have a suspicion that the lack of effect from the last treatment could be because it was a ketamine from another pharmaceutical company and there might be a slight difference in the effect . Doses are 800mg/4hour, 1200/mg/4hour and 1500mg/4hours. I’m pain free in the left arm, but the treatment does not change much about the pain in the right foot.
January 3 2011: Treatment at Mølholm Private Hospital, this time it is scheduled for five days. Due to severe stomach pain processing had to be stopped on Thursday, so I only get the following treatment: Monday 700mg/4hours. Tuesday 1200mg/4hours. Wednesday 2000mg/6hours.
Friday 2000mg/6hours.
April 4 2011: Treatment at Mølholm Private Hospital. Hoping it will work better now, since it’s been a while since I last had a ketamine treatment. Doses are: Monday 1200mg/4hours, Tuesday no treatment because I’m very sick vomiting. Wednesday 1600mg/6hours, Thursday 2000mg/6hours.
I also have my spinal cord stimulator removed, as it sometimes gives me even more pain.
I also gets patches with Capsaicin on both feet and the left arm, unfortunately without any effect. Eva is totally without pain after the Ketamine treatment, but already the next day, the pain comes back, and soon at the same level as before.
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Dear Eva -
Please forgive my delay in responding. And please understand that I am not a medical professional, nor have I ever been trained to be. From many years of practicing law, however, I just got comfortable with doing online searches of professional databases. That and I've managed to have a lot of questions answered over the years.
As you know, your ketamine history is extensive. I can only make a couple of comments.
First, look back at Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M,
Pain 2009 Dec 15;147(1-3):107-15, FULL ONLINE TEXT @
http://www.rsdsa.org/pdfsall/Schwartzman_Pain2009.pdf Two things seem to set it off from the other studies. First, that it was the only treatment - short of the coma therapy - that gave (at a very low dose) significant relief to up to 12 weeks to patients with long-term CRPS patients. And second, that it did so with even doses throughout the ten day period. [Caveat: the study was made using only "ketamine naive" patients, so there is no guarantee that the results are generalizable.]
But when I look at your history, I see a pattern where your doctors appear to have been either too aggressive with your dosing, where they keep pushing you to the point that you become ill and can't continue the treatments, or too complacent, insofar as they have stopped after 4 - 5 days when you appeared to go into remission.
What I would suggest is that you consider speaking with your doctors about maintaining a constant dose (or at least one that you can tolerate by the fourth hour of the first day) and then sticking with it for 10 days. Put another way, the name of the game appears to be not
how much ketamine they can get into you over a period of time, as much as it seems to be
how well an ultimately therapeutic dose can be maintained on four hours on/twenty hours off basis for two weeks. (And as noted earlier, there seems to be something in that rhythm.)
Given those parameters, I would leave any comment on the exact doses to the professionals.
I hope this is helpful.
Mike