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 08-12-2011, 05:41 PM #1
lovefamilypets lovefamilypets is offline
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Default Any advice - Starting Ketamine infusion this Sunday, the 14th

Hi everyone,

As per the list that was put out earlier regarding doctors who do Ketamine infusions, I since made an appointment with Dr. Miller in SoCal and he has decided I can do the Ketamine outpatient 4 hour infusion for 5 days. I start on Aug. 14, just 2 days away!

I have CRPS in hands, feet, neck, shoulders, knees, thighs and left ear.

I was wondering if anyone with CRPS did the k infusion? Did you flare up from the iv catheter?
I flare up when I get blood drawn so I'm a little nervous. Just hoping that doesn't happen with the catheter.

Any other advice would be greatly appreciated. My dad is going to take me. I told him I don't know what to expect as far as what I'll need from him during and after the treatment.

I'll let everyone know how things go afterwards. Thanks everyone for all the info that has been shared about K!
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Old 08-12-2011, 09:35 PM #2
Reddawn600 Reddawn600 is offline
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Default Ketamine

During the infusion you will have a nurse watching you, I'm not sure if your Dr infuses more them one patient at a time or not but you are monitored through regardless. Normal protocol is you are given Versed before they start. versed helps keep yo calm and keeps the hallucinations down. If you have high blood pressure or tend to get nauseous from anesthesia, you will also be given Zofran to prevent nausea. The versed will make you relaxed and somewhat sleepy. They will then started the ketamine infusion. Most people tend to fall asleep very quickly and a lot of people sleep through the entire treatment. Personally, I have yet to sleep through one but according to the nurses, that's a rarity. I had been very nervous about hallucinations because I'd had no experience with that before but I do hallucinate each time now but it's never anything scary, just weird and laughable afterwards. They do continue to give you Versed during the infusion and usually will give you more if they see you getting anxious at all. It reall is nothing to worry about. It's kind of just like having a prolonged session of laughing gas (best way I can describe it to anyone without drug experience like myself). You'll definitely want to bring an IPod with whatever music you find most calming as most doctors encourage it. The goal is to keep your brain quiet and you comfortable Nd relaxed. After the infusion, for about an hour, you'll feel a bit unsteady on your feet and likely extremely tired. The fatigue will probably increase with each day and the worst thing you can do is fight it. To get the maximum benefit from your infusion, sleep and rest as much as you can.

To be honest, this is a description of outpatient ketamine treatments which I wrote for someone else recently. If there are other questions that you personally have, please feel free to ask. I had my 5 day inpatient done back in November and sine then have had a 5 day ouatient and numerous outpatient boosters which left me with an average pain level of 0 after 8 years of disabling pain.

Dawn

Last edited by Reddawn600; 08-12-2011 at 09:58 PM. Reason: Typos
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Old 08-12-2011, 11:58 PM #3
lovefamilypets lovefamilypets is offline
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Quote:
Originally Posted by Reddawn600 View Post
During the infusion you will have a nurse watching you, I'm not sure if your Dr infuses more them one patient at a time or not but you are monitored through regardless. Normal protocol is you are given Versed before they start. versed helps keep yo calm and keeps the hallucinations down. If you have high blood pressure or tend to get nauseous from anesthesia, you will also be given Zofran to prevent nausea. The versed will make you relaxed and somewhat sleepy. They will then started the ketamine infusion. Most people tend to fall asleep very quickly and a lot of people sleep through the entire treatment. Personally, I have yet to sleep through one but according to the nurses, that's a rarity. I had been very nervous about hallucinations because I'd had no experience with that before but I do hallucinate each time now but it's never anything scary, just weird and laughable afterwards. They do continue to give you Versed during the infusion and usually will give you more if they see you getting anxious at all. It reall is nothing to worry about. It's kind of just like having a prolonged session of laughing gas (best way I can describe it to anyone without drug experience like myself). You'll definitely want to bring an IPod with whatever music you find most calming as most doctors encourage it. The goal is to keep your brain quiet and you comfortable Nd relaxed. After the infusion, for about an hour, you'll feel a bit unsteady on your feet and likely extremely tired. The fatigue will probably increase with each day and the worst thing you can do is fight it. To get the maximum benefit from your infusion, sleep and rest as much as you can.

To be honest, this is a description of outpatient ketamine treatments which I wrote for someone else recently. If there are other questions that you personally have, please feel free to ask. I had my 5 day inpatient done back in November and sine then have had a 5 day ouatient and numerous outpatient boosters which left me with an average pain level of 0 after 8 years of disabling pain.

Dawn
Thanks Dawn for all that info! That gives me a much better picture of what to expect. Now I can also tell my dad more about it as well. I would never have thought to bring music, what a great suggestion!
It makes me so happy to hear that Ketamine gave you your life back. I want to get my hopes up so bad, but I've tried so many other things that have failed that I am trying not to have any expectations. Even if it just helped a little, I would be grateful.
Thanks again for your help Dawn!
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Old 08-13-2011, 07:48 AM #4
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I've written a lot on this board about my experiences with low dose outpatient IV ketamine. TH and Fri I had my 46th and 47th infusions, respectively. my hand gets very sore from the insertion of the needle and the catheter, but amazingly enough, I've had no spread. I was supposed to have a chest port (or port a cath) implanted this week, but the scheduling got messed up, so I will have it implanted in 5 weeks when I get my next booster.

I get 200 mg each infusion, and I've never hallucinated. I do have a lot of problems with my stomach, especially if I go in without having something to eat beforehand. My nurse usually gives me 2 mg of versed throughout the infusion, a little a time, which helps me relax.

Like Dawn, I often don't sleep much while getting my ketamine, which takes the entire morning. the infusion is timed to run 50 mg per hour. once I get home I will sleep for several hours. This is mostly because the set-up at my doc's office is horribly uncomfortable, instead of lounge chairs he does the infusions in exam rooms on exam tables. I have a hard time falling asleep on them!!

Good luck!!!

Xoxox. Sandy
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Old 08-13-2011, 12:54 PM #5
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Quote:
Originally Posted by SandyRI View Post
I've written a lot on this board about my experiences with low dose outpatient IV ketamine. TH and Fri I had my 46th and 47th infusions, respectively. my hand gets very sore from the insertion of the needle and the catheter, but amazingly enough, I've had no spread. I was supposed to have a chest port (or port a cath) implanted this week, but the scheduling got messed up, so I will have it implanted in 5 weeks when I get my next booster.

I get 200 mg each infusion, and I've never hallucinated. I do have a lot of problems with my stomach, especially if I go in without having something to eat beforehand. My nurse usually gives me 2 mg of versed throughout the infusion, a little a time, which helps me relax.

Like Dawn, I often don't sleep much while getting my ketamine, which takes the entire morning. the infusion is timed to run 50 mg per hour. once I get home I will sleep for several hours. This is mostly because the set-up at my doc's office is horribly uncomfortable, instead of lounge chairs he does the infusions in exam rooms on exam tables. I have a hard time falling asleep on them!!

Good luck!!!

Xoxox. Sandy
Wow Sandy that is a lot of infusions. I take it they must help you a lot.
So I've tried oral ketamine before and it makes me quite nauseous. I feel like if I eat it helps, but the doctor doing the k infusion won't allow me to eat or drink after midnight the night before. Does your doctor not have that policy?

Thanks for the info. I'm glad to hear you don't get any spread from the catheter. I'm hoping it will be the same for me. Thanks for sharing!
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Old 08-13-2011, 01:25 PM #6
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i have ketamine troches, which are a compounded form of oral ketamine. IV ketamine is much, much stronger. there is just no comparison. my nurse also gives me Zofran as needed for nausea.

on Thurs I barely ate and was really sick to my stomach during and after my infusion. My nurse pushed Zofran a few times, but I still had a really tough time. On Fri, I got up early and had a decent breakfast and did a whole lot better.

I have been on a 2 day in a row, every 4 weeks, schedule that was established by my previous doctor Philip Getson about a year ago. My current doc wants me to try to drop down to once every 5-6 weeks. I am willing to try....

Keep us posted...xoxo Sandy
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Old 08-13-2011, 11:22 PM #7
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Sandy: How much ketamine do they give you at a time in an infusion?

Ahhhhh nevermind I reread and missed it!!! Thanks!
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Old 08-14-2011, 01:44 AM #8
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Quote:
Originally Posted by lovefamilypets View Post
Wow Sandy that is a lot of infusions. I take it they must help you a lot.
So I've tried oral ketamine before and it makes me quite nauseous. I feel like if I eat it helps, but the doctor doing the k infusion won't allow me to eat or drink after midnight the night before. Does your doctor not have that policy?

Thanks for the info. I'm glad to hear you don't get any spread from the catheter. I'm hoping it will be the same for me. Thanks for sharing!
The nausea valso depends on the person and for some reason seems to have something to do with blood pressure. At least at Dr. schwartzman's they always checked that before they gave out the Zofran. If your's was low, they didn't give it to you unless you asked. I've never gotten nauseous inpatient or outpatient and never taken Zofran. My blood pressure is usually on the lowest end of normal.

As for the set up in the Doctor's infusion suite, it all depends on the doctor. Sandy, that sounds seriously uncomfortable! But of course,what matters most is the ketamine. My doctor does his in a surgical center, I'm no longer going to Dr. Shwartzman. This doctor has one nurse per patient in a private room. You lie back in a recliner, put your Ipod on and in 2 hrs, you're done. I hallucinate even with the Versed but it's never anything negative or scary. They let my husband sit there with me since they know I stay calmer.

For the next infusion we're going to try pushing it from 300 to 350mg per hour for two hours two days in a row.

It is normal protocol to fast from midnight on just like with any anesthesia. I promise you'll be fine. At Dr. Shwartzman's they had a 10 chair infusion suite so I could see 9 other people getting infused all the time. Many of them were afraid of nausea and were given the Zofran, not one ever got sick. If you ever got nauseous at home and need something OTC, try Bonine or Dramamine II, active ingredient is Meclizine (I think that's how it's spelled). I always keep some around in case new meds make me sick or my children feel sick, works great.)

Most important thing to keep in mind with ketamine is that it is a process. Please don't go in there expecting huge results from Day 1. I spent 5 days inpatient in NY, received a total of 3000mg of ketamine over that time yet I didn't really feel and see real improvement until after my first couple of days at home and then with each week and especially with each booster infusion, I got far better to the point the difference in me a year ago today and now is night and day. Just keep your expectations realistic, take it slow, rest and give your body time to heal,nI really can't stress that part enough. The more you rest, the faster you'll heal.

And, DON'T FORGET YOUR IPOD!!!! . You'll be fine, just relax and think nothing but positive thoughts. Please keep us posted!
D

Dawn
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Old 08-29-2011, 01:39 AM #9
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Crazy Bad experience - so depressed

Hi everyone,

I wanted to write back sooner about my outpatient ketamine experience 2 weeks ago, but I was too sick until now to feel up to it.
My first day I had a 500mg infusion over 4 hours. I went in at 6am and was suppose to be discharged at noon. I wasn't discharged until 7pm when my dad wheeled me out and lifted me into the car while putting a throwup bag on my lap.

During the infusion, I had scary hallucinations which consisted of dying a slow death. I vomitted throughout the infusion and recovery period. I had horrible vertigo, nausea, dry mouth. I was terribly weak. I could not walk on my own to the bathroom until 1am the next morning. The anesthiologist said he had never seen someone react as poorly as me and stopped the infusion short.

Two weeks later I'm still exhausted, my left hand flare up from the IV cath continues, my stomach is still bothering me, I'm scared to fall asleep and I just feel so down.
I feel like giving up and I'm not sure how much more I can take. This was one of my last treatment options. At 27, I feel like my life is over and there is no hope of getting it back. I just don't know what to do and I thought if anyone knew it would be everyone on here. Please tell me this will pass because I can't handle feeling like this for much longer.
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Old 08-29-2011, 08:38 AM #10
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Default So Sorry

Quote:
Originally Posted by lovefamilypets View Post
Hi everyone,

I wanted to write back sooner about my outpatient ketamine experience 2 weeks ago, but I was too sick until now to feel up to it.
My first day I had a 500mg infusion over 4 hours. I went in at 6am and was suppose to be discharged at noon. I wasn't discharged until 7pm when my dad wheeled me out and lifted me into the car while putting a throwup bag on my lap.

During the infusion, I had scary hallucinations which consisted of dying a slow death. I vomitted throughout the infusion and recovery period. I had horrible vertigo, nausea, dry mouth. I was terribly weak. I could not walk on my own to the bathroom until 1am the next morning. The anesthiologist said he had never seen someone react as poorly as me and stopped the infusion short.

Two weeks later I'm still exhausted, my left hand flare up from the IV cath continues, my stomach is still bothering me, I'm scared to fall asleep and I just feel so down.
I feel like giving up and I'm not sure how much more I can take. This was one of my last treatment options. At 27, I feel like my life is over and there is no hope of getting it back. I just don't know what to do and I thought if anyone knew it would be everyone on here. Please tell me this will pass because I can't handle feeling like this for much longer.
I am so sorry to hear that you are going thru so much. I have no experience with ketamine but I just wanted to let you know I feel terrible for you. There are so many people on here that will advise you and let you know that you WILL be ok. I have had this since 1986 and am so afraid to try the ketamine because of the stories, but there seems to be alot of success with so many people, keep your chin up and someone will come along with a great story for you regarding feeling better. I hope you feel better real soon.
Your friend Wendy
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