Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-22-2015, 06:38 PM #1
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Default rocky ketamine infusion linked with poor success?

Hi, I had a very high dose out patient ketamine infusion over four hours yesterday. This is the third one I've had using this protocol. I've been having them about every two months. I had effective drugs to prevent nausea and hallucinations exactly the same as before. During the last two, I pretty much slept the whole time. However, I have some emotional crisis going on right now and I was very agitated, hallucinating, talking a lot and when I talked about the emotional things bothering me, my blood pressure would shoot way up. My sister was with me and could help divert me from the subjects that were causing trouble. At least for a time. The nurse told her she needed to guide me away from those topics causing my blood pressure to shoot up. I also have POTS so this was a problem with the pulse and BP.

All in all, it was a pretty rocky experience emotionally for me this time. My question is:

For those who've had ketamine, did your experience *during* the infusion affect how well the infusion worked?
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Old 09-22-2015, 08:40 PM #2
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Hi CDWall,

Sorry to hear about the rough ride and current stress. I am wondering about a couple of things. As we approached my higher dose I remember the infusion nurse (who gives these all the time) saying that people acclimate to the dose increases. So part of it may be that what knocked you out before is no longer doing so. The answer to this is increasing the versed or benzodiazepine they are giving you to counteract the weirdness.

I wonder also if your heightened stress, increased adrenaline, sympathetic activity etc. is making you more resistant to being knocked out like before.

I would ask next time before you begin if they can plan to give more of the calming medication if it happens again so a plan is on board. We decreased the versed given during my last infusion with the understanding that if I got agitated they would add it back in. The end result was we stuck with the lower dose and my infusion was decidedly weirder but I felt less wiped all day.

I have no idea if your experience will affect the effectiveness. My main concern is if your stress level is affecting your pain and ability to cope with it.

How much are they giving you total over the four hours BTW? I get about 55mg total dose given in an hour. Just curious....

I hope things settle soon. Sending soft hugs,
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Old 09-22-2015, 09:58 PM #3
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Hi, Thanks for responding. I'm pretty groggy right now but I'll answer this part now.

Quote:
Originally Posted by Littlepaw View Post
Hi CDWall,


How much are they giving you total over the four hours BTW? I get about 55mg total dose given in an hour. Just curious....
:
I'm getting 500mg over the 4 hours. It's a lot. It should have knocked me out good.

More later.

Denise
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Old 09-23-2015, 04:19 AM #4
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When I had a rough time during the actual infusion, I still had good results after. Instead of talking, I found it was best to have very soothing instrumental music or songs that didn't trigger weird responses. So a few calming words was fine, but no more.
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Old 09-23-2015, 07:48 AM #5
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Quote:
Originally Posted by Littlepaw View Post
Hi CDWall,

Sorry to hear about the rough ride and current stress. I am wondering about a couple of things. As we approached my higher dose I remember the infusion nurse (who gives these all the time) saying that people acclimate to the dose increases. So part of it may be that what knocked you out before is no longer doing so. The answer to this is increasing the versed or benzodiazepine they are giving you to counteract the weirdness.

I wonder also if your heightened stress, increased adrenaline, sympathetic activity etc. is making you more resistant to being knocked out like before.

I would ask next time before you begin if they can plan to give more of the calming medication if it happens again so a plan is on board. We decreased the versed given during my last infusion with the understanding that if I got agitated they would add it back in. The end result was we stuck with the lower dose and my infusion was decidedly weirder but I felt less wiped all day.

I have no idea if your experience will affect the effectiveness. My main concern is if your stress level is affecting your pain and ability to cope with it.

How much are they giving you total over the four hours BTW? I get about 55mg total dose given in an hour. Just curious....

I hope things settle soon. Sending soft hugs,
Hi Again. So as I said, I'm getting 500 mg which is considered a pretty whopping dose. (I'm really little). I've read some people getting more in one infusion but it's pretty rare, and usually built up to that higher dose. 500 mg should have knocked me completely out but I fought it like the devil. And I wasn't jabbering either, I was making sense and describing how I felt.

One problem is my husband of 32 years left me completely out of the blue and is marrying a girl 25 years younger than him in a couple of weeks. I'm not handling it well. I was devastated and heartbroken when he left and haven't gotten over it. (Yes, I'm in therapy and on drugs.) The other main problem is my mother is about to die from Alzheimer's. Then there's dealing with CRPS and the restrictions my increasingly worse POTS is causing. I'm mostly bed bound these days from the POTS. I wanted to talk about these things but it was keeping me from settling down and made my BP go up too high so my sister had to work the entire time to keep me away from these subjects. Bless her heart. Last time she could just read while I was completely out of it.

I know they gave me Ativan and Zofran, I believe the same as my last infusions. I don't know if they give me Versed but I remember everything. (I have a long history of remembering everything despite versed anyway.) I've been having trouble with too much Ativan the last two infusions such that I had to stay hours after everybody normally has to stay before I've been fit to leave. I probably got the same amount of Ativan, but was just very emotional and overrode what they gave me. It's hard to match a patient's exact needs for any given day I suppose.

At any rate, I'm feeling better now. I hope my fighting the infusion won't affect my results. Every infusion needs to work the best it can. It's a big deal for me to set up help for treatments like this because I live alone now.

Thanks for your help.

Last edited by cdwall; 09-23-2015 at 08:39 AM.
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Old 09-23-2015, 07:55 AM #6
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Quote:
Originally Posted by LIT LOVE View Post
When I had a rough time during the actual infusion, I still had good results after. Instead of talking, I found it was best to have very soothing instrumental music or songs that didn't trigger weird responses. So a few calming words was fine, but no more.
Hi LIT LOVE,

How much ketamine do you get? I get 500 mg. My guess is I've been so out of it in the past that soothing music would have been completely out of my ability to comprehend. Even this time, I was very much in my head. Nothing coming in, just my emotions coming out. I may be wrong about the music. However, they normally give people such a big dose at this clinic nobody is awake and I don't ever see or hear anything like what people say goes on at the other outpatient infusion sites. It's pretty much like general anesthesia but they don't intubate you. I'll ask about these things next time.

Thanks
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Old 09-23-2015, 02:21 PM #7
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It's been over a year and I honestly don't remember the dosage. I was slipping in and out of consciousness on two of them. I really struggled with communicating, and did better focusing on my music, which was fine with some songs, but not others. Whatever puts you in a happy place, is fine. I was given additional versed a few times, because I was essentially having a bad "trip" on one of them. The next time, which I stayed awake through, I was very careful about what I was listening to.
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Old 09-24-2015, 07:38 AM #8
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As an update, I'm feeling good third day out. It's amazing how much pain you can be in and not realize how bad it was until it's gone. Then the feeling is like heaven. I hope it lasts a long time. I get these high dose infusions once every two months.
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Old 09-24-2015, 08:08 AM #9
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Quote:
Originally Posted by cdwall View Post
As an update, I'm feeling good third day out. It's amazing how much pain you can be in and not realize how bad it was until it's gone. Then the feeling is like heaven. I hope it lasts a long time. I get these high dose infusions once every two months.

I am so happy for you.

Yes, yes, yes. We get used to being in pain, it is a constant. I cannot imagine what it is like to be 100% pain free.
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