10 Day Outpatient Ketamine

[nyt]

I started a 10 day outpatient Ketamine protocol on Dec. 12th. The infusions were M-F during the morning (2-4 hours), home on the weekend, and then M-F during the morning again finishing up on Dec. 23rd.

They obtained a urine sample before they started the Ketamine for drug screening. Was weighed in as maximume infusion rate is based on weight plus some patients lose alot of weight because of nausea. They have cut the 10 day protocol short for some patients if they lose too much weight. I think the nurse told me if a patient loses 5 pounds in 3 days they stop the infusions.

The first day they started the infusion at 7mg/hr and increased the dose every 15 minutes with the goal of reaching 67mg/hr for a total of 100mg. It took about 2 hours for me to get the total of 100 mg and didn't quite reach the 67 mg/hr before I hit the 100 mg. They gave me Versed for hallucinations, Zofran for nausea and put on a Scopolamine patch for nausea. The hallucinations were mild and tolerable. The Ketamine really affected my vision and made things look like things were under a strobe light and very difficult to focus my vision. It took a long time for it to wear off each day. I got really sick the first day and was throwing up. They gave me some extra Zofran just before discharge which helped. My pain was worse when they were done with the infusion than before they started. Spent the whole day in bed but by dinner time was able to go out and keep dinner down.

The second day they started the infusion at 14 mg/hr and increased again every 15 minutes to a maximum dose of 67 mg/hr for a total dose a 150mg which took about 2.5 hours to infusion. They gave me Phenergine instead of Zofran for nausea which worked great and Versed again before they started the infusion. For the next 7 infusions they gave me Phenergine and Versed before starting the Ketamine infusions. No nausea at all and I didn't have nausea after the first day. The nurses and doctors told me that they have found the Scopolamine patch has done wonders for nausea. They gave me a prescription for the Scopolamine patch which I changed every 3 days. My pain was better in my legs after the infusion was complete but made no difference in my pelvic pain. Went back to the hotel and slept until dinner. That really pretty much was the routine. I would sleep off and on during the Ketamine infusions, go back to the hotel, sleep all afternoon, out for some dinner and then back to bed.

The third day the infusion started at 20 mg/hr and again same thing as far as increasing and they went to 200 mg over about 3.5 hours. CPRS pain was better in my legs but not the pelvic pain.

Unfortunately, the morning of day four I woke up feeling like a I had a 500 lb gorilla sitting on my chest. They decided not to increase in the dose and left me at 200 mg. The gorilla sitting on the chest did decrease and go away after about 3 days. Each day I would have hallucinations during the infusions. Every sound and sensation is intensified. There were two days that I was having really bad left lower quadrant/groin pain and adductor pain which was just intensified during the infusions. The nurse said that they have found occasionally that some patients pain is intensifed during the infusions. The Ketamine infusions during the first week helped the CRPS/RSD pain I have in my legs but not the pelvic pain nor the adduction pain. I told both the doctors and the nurses that adductor and pelvic pain is a very different pain from the CRPS/RSD pain and the Ketamine worked on the CRPS pain.

Originally they were going to do some Lidocaine infusions the second week but because I was tolerating the Ketamine so well they decided not to. Day 6, which was Monday was a little tough going but that is quite typical since you have a few days for the Ketamine to decrease in the system and they repeated the 200 mg over 4 hours. On day eight they increased the dose to 225 mg over 4 hours and I knew it when I really came out of it as I just felt generally "yucky." The next two days I received the same dose, 225 mg, and just felt generally awful at that dose.

The second week they also started me on Namenda 5mg twice a day. This is an off label use for this drug as it is for Alzeiheimers but it works on the NMDA receptor just like the Ketamine dose.

Overall, my CRPS pain in my legs is so much better. I had no CRPS flares in my legs and they were between 0-3 for 2 weeks. The Ketamine never touched my pelvic pain or the adductor pain in my legs. Some of the CRPS pain is just starting to return to my legs. The Ketamine did wonders for my TMJ and right shoulder pain which is nice.

Some general comments: Both the doctors and nurses told me that they have done Ketamine infusions on 3 other pelvic pain patients with excellent results but that my case is much more complicated because of all the different nerves I have damaged in my pelvis and legs. They also told me that they have had several patients with CRPS that the Ketamine infusions didn't help at all and some patients don't tolerate the Ketamine and they had to stop the infusions. It is one-on-one nursing care during the infusions. The nurse told me many patients they can't even leave the bedside because of the hallucinations and disorientation during the infusions. They have no way to know how long any improvement will last and is different for each individual. The nurse told me no two people tolerate or react to the Ketamine infusions the same way so they are prepared for pretty much any type of response to the medication. I told them I thought the reason the Ketamine works is because you basically sleep for 2 weeks and we all know the correlation between sleep and pain. I was told there is one doctor in the practice who believes exactly that, that the Ketamine doesn't do anything directly but that it is the sleep that the patients get that causes the improvement. This pain group has been collecting very detailed data for 1 year now on all their Ketamine infusions and will eventually publish their results. They asked me very detailed questions about location, type of pain, quality of pain, etc. before and after each infusion. Lastly, this pain group considers the infusions a success if you have 50% improvement in pain. The doctors did not anticipate my pain to be zero, were very upfront with what they thought would be a reasonable result and did not expect a cure.

I follow-up in 2 weeks and from what the residents told me the plan will be to try the Lidocaine infusions to see if it will help the pelvic pain and adductors.

I hope this answers some questions for those of you looking into Ketamine.

[A's Mommy]

VERY Helpful information, NYT!!!

I am in the process of trying to go to Cleveland Clinic to get this done, but everything there is OON, so the appeals start....

Would love to do it with my caring new Pain doc in Pittsburgh, but no protocol is in place anywhere in Pittsburgh, so he has to argue FOR the use of Ketamine in the hospitals for treating patients with CRPS. I may just end up being the first in Pittsburgh to get outpatient K for CRPS just like I was the first patient to get a CT guided PN block in Pittsburgh.

I never "aspired" to be a human lab rat in life, but I guess if I want pain relief, I have to be willing...

I have had a merciful three days without flaring CRPS so I am very very greatful for all who have prayed for me.

Praying for you too, NYT. I really think and hope that once your remaining nerve entrapments are resolved that you will 1) tolerate the infusions better and 2) have better results, or perhaps merciful permanent remission from CRPS. Please let us know your updates.

Happy New Year

a's mommy

[Faith]

Thanks for the update NYT. I am glad you tolerated the Ketamine well and that it helped your CRPS at least for a little while. I think it's very interesting you mentioned that Ketamine might help because it induces so much sleep. I have wondered that as well. I sometimes joke with my husband that if I could just go to sleep for like 6 months maybe I would wake up a new person. Wish I could try it! Keep us updated. You are a fighter! Praying for you.

[Ray P.]

Thanks for the info. I have been waiting for other people to try the Ketamine to see how it works on them. I have been trying so many things for this pain in the last 10 years, and nothing works, EXCEPT when I had a operation on my hand a few years ago; I woke up from operation higher then a kite but for the first time I felt total relief from my pelvic pain. By the time I got home, no more then a hour later, the pain came back.
I asked what they gave me and to put me under, and they said Fentanyl and Valium. I later tried Fentanyl patches, and the high and the constipation I could not handle; constipation makes things worse. I also tried just oral Valium for a month, and that did not work either. I only tried the patch once. I had another hand operation a couple of years later and did not get the same result.

[merrie]

Nyt- are you staying om the namenda or did you just use it durinng the k infusuions.

Merrie-

[nyt]

Staying on the Namenda.

[kathyd]

Hi NYT,
Thx for providing such a detailed description of your ketamine experience. I sure hope that your pain levels improve in the pelvic area!
I had 2 ketamine treatments done in a very different way by a NY city pain doc.
I laid on his table in his office (not a comfy table like in PT) and he hooked up the the IV..he then put in ketamine and lido caine for several hours. I felt similar sensations to what youdescribed, every sense was magnified and the outside world felt far away. It was a like a weird LSD trip (tho I have no experience with hallucianatory meds.) I did not feel my butt pain at all but at one point everything was spinning and I was scared a horrible feeling. He turned down the amount of meds.. He kept me there all afternoonand popped in to check on me. I took a long time to come out of it (very nauseus) .. the nauseau let up later in the evening when we got home and atee. Needless to say my butt/pain returned as soon as the med was turned off.. And I had rebound pain from lying on his table..We tried again a couple weeks later with no lidocaine this time (he felt the lido had caused the nausea.) This time I had a similar weird experience but could feel the uncomfortable table under me.. I was there for hours , watched and released..Afterwards my pain returned as per usual.. My anal pain went up Im guessing from lying on the examination table for hours.. The doc said since I didn't get lasting relief from these 2 treatments that doing it again wouldn't help..Does this make sense? He doesn't do it hospital as he feels its better for the patient to be in his office with him present and monitoring. This is very different from how your treatments were done. May I ask where you had it done? I am not sure whether it is worth trying again in the method you used. If

[kathyd]

Hi NYT
Just continuing as my computer cut my last msg off ( anyone else find that these boards only allow a certain amount of charcters per message?_
Thansks for the info..I was just wondering if it would be worth trying this method or if what my docs said (that the 2 trys were enough to let him know that ketamine wouldn't help?
He did not give me much info tho I had multiple questions.. he always answered ..lets wait and see, everyone's different.. I am a thin woman so the amts given were based on my size.
I didn't get info about side effects... he didn' want to me "expect a side effect" and get scared.
Just wondering where this was done and how much success they have with pelvic pain? and whether it would be worth another try.
Thx so much NYT and best wishes for feeling better.

[nyt]

Kathyd, both the nurses and the doctors told me (In both Rochester, NY and Phoenix, AZ) that with Ketamine the biggest key to success is daily treatments with the Ketamine. The daily infusions of Ketamine are more important than the amount administered according to the doctors and nurses. The nurses told me that they have had good success with the 3 pelvic pain patients they have treated. I didn't ask how they define success but the doctors at this pain clinic consider 50% improvement in pain a good success. It might be worth another look into it. If you join the Ketamine Klub on Facebook they have a list of doctors by state that do both outpatient and inpatient Ketamine infusions. Mine were done in Rochester, NY. They keep a very close eye on you. They continuously monitor your oxygen saturation, BP and EKG. Your nausea was most likely due to the Ketamine as it is known to cause nausea. Facilities who administer Ketamine on a regular basis all give Versed and some type of anti-nausea medication before administering the Ketamine. Many patients with CRPS have routine boosters of Ketamine and how often they are given is based on the doctor's protocol and how long lasting the benefit is to the patient. Boosters are usually for 1-3 days, just depends on the doctor and patient. Also, my insurance paid for the whole thing. We had to get prior approval but it went through without a problem. Ketamine is a known treatment for CRPS and Medicare even covers it so many insurance companies cover it now. If they don't it is much easier to appeal since Medicare covers Ketamine treatments. Good luck if you decide to look into this again.

[merrie]

Nyt- how is the namendahp helping and are you able to get insurance to cover. My dr has been trying to get me to try it but I'm worried about the cost and there is not a lot of info I could find published on namenda and pain.

Thanks so much!