Hello, my name is Eva. I’m from Denmark and suffer from CRPS/RSD in both my feet and my entire upper left extremity (I am left-handed). I am completely bedridden with enormous pain and aren’t able to do anything for myself. I can’t even eat or go to the restroom by myself, and I have given up showering. I have tried ALL possible treatment options, including ketamine boosters. They worked, but not lasting. I am currently waiting for a ketamine coma. I have been in contact with both Dr. Cantú from Mexico and Dr. Rohr from Germany about a possible ketamine coma; unfortunately it isn’t available at the moment. The wait is killing me! Anybody waiting for the ketamine coma as well? Does anybody know if there is an alternative place to get the coma?

I am fairly certain that Dr. Anthony Kirkpatrick in Florida is affiliated with the ketamine coma centers. His Florida location doesn't have a really long wait list, like Dr. Schwartzman in Philly. You can obtain his number from the "ketamine docs" posting below. Google his website for more information. I had heard that there was going to be another coma clinic opening in Panama or another Central American country sometime soon, since the Germany location has been closed.

Good luck to you, sorry you are so sick. XOXOX Sandy

Hello SandyRI, thanks for your reply. I've already been treated by dr. Kirkpatrick, with ketamine infusions (4 day/4 hour). I was painfree for 6 weeks, but unfortunately the pain returned, and some new infusions (by dr. Rohr in Germany and a danish doctor) didn't worked well - the painrelief didn't last. I have talked to dr. Kirkpatrick about the Ketamine Coma, but he couldn't say if the Coma study (in Mexico) would start again.

You talk about a possible coma in Panama - is that something you know, if so, I would really like to hear more - or where I can find more information.

I heard that in an informal setting from a doc that has spent time training with Dr. Schwartzman. I knew Germany was closed, but I didn't know about Mexico. bummer.

Dr. S and Dr. Kirkpatrick have collaborated in the past on the coma treatments. so I figured contacting Kirkpatrick would be the easiest way to find out about alternative sites. If Kirkpatrick can't help you, then I would suggest you contact Schwartzman's office. Unfortunately, Dr. S has a 2-3 year waiting list. His contact info is available at the ketamine doc posting. He does the 5 day inpatient higher dose treatment, which is much different than the outpatient you had in Florida, that may work for you. Or you try the Hospital for Special Surgery in New York City, they also offer the 5 day inpatient high dose ketamine treatments and it's a wonderful facility.

good luck to you, Sandy

I will try to contact Dr. Schwartzman's office, but unfortunately I don't think he can do anything about the coma, because he previously send his patient to Dr. Cantú in Mexico, and its Dr. Cantú that I have talked to.

I have doubts about whether Dr. Schwartzman's 5 day inpatient higher dose treatment will work. In Germany with Dr. Rohr I got a ketamine infusion treatment 24 hour a day for 18 days, but the pain returned after 3 weeks, and I have also had several 4 day/4 hours ketamine infusions here in Denmark, but they didn't work a very long time. I'm afraid that my last options is the coma.

Hi I am sorry you are in such bad pain. So both Germany and Mexico are not doing the coma? So no place is? If this is true why?
Eva did Dr K explain why the ketamine infusions did not last? What did he feel the next step for you would be? How did you feel your care was with him?
I hope you can find a direction of treatment and get relief

Hi EvaSoholm,
I've been a patient of Dr. S. and I can tell you he does not do ketamine comas. I believe the FDA in the United States has not approved the comas here...only infusions. He does either 5 day inpatient at Hahnemann Hospital (not a great hospital as I had a bad time with their icu) or he does the 10 day outpatient infusions too (He also does Lidocaine IVs as well and is doing the IVIG program as well). As far as comas...he sends you to Germany or Mexico which I heard Germany has not been doing for a long time(I believe a patient died there and it was stopped asap) and someone here just said Mexico is not doing it either so I don't know of anywhere doing it now. It seems like alot of the "major" diseases get lots of press and many different treatments but for us folks with rsd it seems we are always left behind. Hope this helps. Keep praying and try to stay positive.
kathy d

Dear Eva -

Forgive me, but I think there is an alternative that you may not have considered, which is completing the 10-day outpatient program. For reasons not clear, the 10-day outpatient program has been effective in patients with long-standing CPRS who were not previously amenable to ketamine therapy at doses below that which would induce comas.

This 10-day outpatient ketamine infusion (200 mg/4 hr. infusion) has been widely adopted in the U.S., where Schwartzman et al showed, using at that time only 100 mg./4 hr. infusion, results that were significantly better than those obtained with the 5-day 'low dose" infusion, even at 40 - 50 mg./hr., especially in people who had RSD for more than a year. Compare, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients, Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008;9(1):44-54, paying particular attention to the "Discussion" portion of the article beginning at p. 50, FULL ONLINE TEXT @ http://www.rsdsa.org/pdfsall/Kiefer_Rohr_Ploppa.pdf, with, 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

And for a very recent article by Dr. Schwartzman et al, including both a discussion of the possible side effects of ketamine therapy and a detailed description, in the appendix, of the current out-patient protocol, see, The use of ketamine in complex regional pain syndrome: possible mechanisms, Schwartzman RJ, Alexander GM, Grothusen JR, Expert Rev. Neurother. 2011, 11;719-734 FULL ONLINE TEXT @ http://www.rsdsa.org/2/library/artic...rtrev.2011.pdf

Taking this one step further, Dr. Kirkpatrick has recently reported that:

. . . we slowly increased the dose of ketamine from 60 up to 300 mg/h on an outpatient basis over a 3-day period. Over the past two years, we have completed over 300 infusions without any serious complications. These patients are averaging between 3 and 4 ketamine infusions per year and demonstrating substantial clinical improvements as measured by pain thresholds and video recordings of function before and after treatment. [Emphasis added.]

Regarding Bell and Moore, Intravenous ketamine for CRPS: Making too much of too little? Kirkpatrick AF, Lubenow T, Pain 2010;150:10–11 (Letter to the Editor), Pain 2010;151(2):550-557, FULL ONLINE TEXT @ http://www.rsds.org/pdfsall/Kirkpatrick_Pain_2010.pdf

So these programs are in contrast to - say - 18 days of continuous inpatient infusion. Why the difference? Although this is speculation, the answer may lie in the rhythm of the ketamine delivery. And why/how would that be expected to make any difference? Because, as established in easily the most important and least commented on article in the CRPS literature in years, once it takes hold, CRPS - along with Parkinson's disease, depression and tinnitus - is a disease of thalamocortical dysrhythmia.*

That said, I wonder if Dr. Kirkpatrick has missed the point by limiting the number of days of the out-patient treatment, simply by increasing the dose per infusion. The idea being that the pattern in which the treatment is applied makes a difference, and that is what differentiated 10-day outpatient ketamine infusions in the first place.

I would accordingly suggest that you to consider going back to do the full 10-day out patient treatment, at whatever dose is deemed appropriate for you.

Mike


* Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul;150(1):41-51, Epub 2010 Mar 24, FULL ONLINE TEXT @ http://www.rsdsa.org/pdfsall/Walton_Pain_2010.pdf:

Dept. of Physiology & Neuroscience, New York University School of Medicine, 550 First Ave., New York, NY 10016, USA.

Abstract
Complex Regional Pain Syndrome (CRPS) is a neuropathic disease that presents a continuing challenge in terms of pathophysiology, diagnosis, and treatment. Recent studies of neuropathic pain, in both animals and patients, have established a direct relationship between abnormal thalamic rhythmicity related to Thalamo-cortical Dysrhythmia (TCD) and the occurrence of central pain. Here, this relationship has been examined using magneto-encephalographic (MEG) imaging in CRPS Type I, characterized by the absence of nerve lesions. The study addresses spontaneous MEG activity from 13 awake, adult patients (2 men, 11 women; age 15-62), with CRPS Type I of one extremity (duration range: 3months to 10years) and from 13 control subjects. All CRPS I patients demonstrated peaks in power spectrum in the delta (<4Hz) and/or theta (4-9Hz) frequency ranges resulting in a characteristically increased spectral power in those ranges when compared to control subjects. The localization of such abnormal activity, implemented using independent component analysis (ICA) of the sensor data, showed delta and/or theta range activity localized to the somatosensory cortex corresponding to the pain localization, and to orbitofrontal-temporal cortices related to the affective pain perception. Indeed, CRPS Type I patients presented abnormal brain activity typical of TCD, which has both diagnostic value indicating a central origin for this ailment and a potential treatment interest involving pharmacological and electrical stimulation therapies.

PMID: 20338687 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20338687

See, also, Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul;150(1):4-5, Epub 2010 Apr 14, FULL ONLINE TEXT @ http://www.rsdsa.org/pdfsall/JonesEG_Pain_2010.pdf AND Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography, Llinás R, Ribary U, Jeanmonod D, Kronberg E, Mitra P, Proc. Natl. Acad. Sci. U.S.A. (1999) 96 (26): 15222–7 FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...f/pq015222.pdf

And please note that not only do an astoundingly high number of journal articles cite the 1999 article by Llinás et al, but it was the subject of a New York Times article at the time it was delivered before the annual meeting of the Society of Neuroscience in October, 1999. "New Way Of Looking At Diseases Of the Brain," by Sandra Blakeslee, New York Times October 26, 1999 http://www.nytimes.com/1999/10/26/sc...the-brain.html As set forth in the Times article:

. . . according to Dr. Llinas, the thalamus does much more than simply pass information. The way that it coordinates its activity with the cortex, he says, gives rise not only to the symptoms seen in many neurological and psychiatric diseases, but to consciousness itself.

It does so through what Dr. Llinas calls thalamo-cortical oscillations. The thalamus contains special cells that pass tiny electrical currents across their membranes in a highly coordinated manner, Dr. Llinas said in a telephone interview. Rather than firing sporadically and singly, like other nerve cells, the cells in the thalamus oscillate, firing in groups together at various frequencies. By virtue of their connections, these thalamic cells then cause cells in . . . the layer of the cortex closest to them -- to oscillate at the same frequency. This coordination between these oscillating cells in the cortex and thalamus, which are constantly flipping signals back and forth, binds information from different regions of the brain into complete actions, perceptions, movements and into consciousness itself . . . .

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.

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