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 06-09-2008, 10:13 PM #1
dshue dshue is offline
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Default My doctor wants to begin Ketamine treatment

It would be hard to overstate how valuable I've found this site. It has been both extraordinarily informative and most beneficial pyschologically.

Along those lines, I hope I can hear from anyone who has, in the course of their treatment, undergone Ketamine infusion.

My Pain doctor, who is good and who I trust, wants to do this as our next step. Last week I had my first Stellate Ganglion and Lumbar blocks. I had some, not much, pain relief for a few hours, and then the burning came back, a little stronger actually, in a rebound effect. The burning, by the way, was first present in my abdomen as a result of a surgery and is now spread to my arms, legs, upper back and forehead. My hands and feet, unlike most I have spoken with at support groups, are just fine (if I could just trade in a foot for a new body...)

For medication, I'm at 600 mg Lyrica, along with Tramadol and am now titrating up with Cymbalta, giving me some relief, basically enough to keep from climbing the walls day and night.

My concern with Ketamine are with the side effects. I realize it is for many the best, strongest form of treatment, a 'rebooting' process that works. But, ah, the halluciations (!!)...

You know the person who, when, let's say, a joint was passed around, ended up paranoid on the floor? I'm that guy. Also, I have a minor but present underlying manic condition that is very sensitive to pyschoactive drugs. I'm wondering how beneficial a single, four-hour infusion treatment is that first time. Does one see immediate positive effects (if there are to be any)? My reading on Ketamine led me to believe that it takes a ten day treatment to see improvement, but my doctor (Dr. Josua Prager in LA) said that he pretty much can tell after the first infusion if there are going to be any benefits.

Anyway, I'm in desperate need of relief, but I'm dreading the possibility of four hours of disassociative hallucinations (especially if I'm paying $2000 for such pleasures....)

Thanks to anyone who replies.
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Old 06-09-2008, 11:46 PM #2
Iffynah Iffynah is offline
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Default Wow

Ok first of all I have never gone thru having a block or anything except for Tramadol. Second, I just looked up that drug, and I would have to say HELL NO they ain't putting anything like that in me!!! LOL They use it on animals and humans, plus some ppl use it as a date rape drug. Yeah lol no thanks!
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Old 06-10-2008, 07:55 AM #3
debbiehub debbiehub is offline
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Default Ketamine

Hi there- I was just like you! I would hallucinate and go into the whole paranoia thing when I tried pot-lol- Never took acid when my friends did,,,, I went thru a 5 day ketamine infusion (non stop) and I was fine! My hallucinations were good ones and I was like a happy drunk. I did have to have a full psych workup because they have to make sure your not psychotic- hearing voices etc. I hope that helps you. Feel free to email me if you have anymore questions. Good luck!
Remember though everyone reacts differently to these drugs

Debbie

PS -they should give you some type of relaxer like versid or ativan to keep the hallucinations at a minimum
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Old 06-14-2008, 06:48 AM #4
CZZ74 CZZ74 is offline
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Default Hallucinations with Ketamine

Hi , I have probably had more ketamine than anyone in the world. That is a big statement but probably true. I have had the coma, two five day icu treatments and over 50 boosters, some two day some two weeks.
And I did hallucinate during the coma and the intensive 5 day ICU treatments.
However, the two hour boosters, the hallucinatios were minimal, never really negative. This is because my doctor administers versed at the begining of the infusion and again at some point during the infuison. I would inquire about this.
Given your level of suffering, I certainly feel it is worth trying for you to lower your buring level- it is highly successful in permanetly removing alloydinia. You sound like you almost have full body burning . The ketamine infusion typically help everyone with this.
The deep pain is more diffucult to help wth these light infusions.
As Debbie said, eveyone does react differently. But given your level of pain, your type of pain, and the success of ketamine infusion for that type of pain, I would recommend you give it a try. Good Luck. Write me if you have any more questions I can help with. Sincerely, CZ
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Old 06-14-2008, 09:40 PM #5
dshue dshue is offline
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Default Ketamine fears...

Quote:
Originally Posted by CZZ74 View Post
Hi , I have probably had more ketamine than anyone in the world. That is a big statement but probably true. I have had the coma, two five day icu treatments and over 50 boosters, some two day some two weeks.
And I did hallucinate during the coma and the intensive 5 day ICU treatments.
However, the two hour boosters, the hallucinatios were minimal, never really negative. This is because my doctor administers versed at the begining of the infusion and again at some point during the infuison. I would inquire about this.
Given your level of suffering, I certainly feel it is worth trying for you to lower your buring level- it is highly successful in permanetly removing alloydinia. You sound like you almost have full body burning . The ketamine infusion typically help everyone with this.
The deep pain is more diffucult to help wth these light infusions.
As Debbie said, eveyone does react differently. But given your level of pain, your type of pain, and the success of ketamine infusion for that type of pain, I would recommend you give it a try. Good Luck. Write me if you have any more questions I can help with. Sincerely, CZ

Thanks so much for your reply CZ.

Wow, that's a lot of Ketamine (I'm assuming it works for you). It's made my day to read from a Ketamine expert that, for a pretty much full-body burning, Ketamine can be effective. This is what my doctor has told me, obviously, but it sounds perhaps a little more persuasive to hear the same from a person actually getting pumped up with the stuff.

I'm going to make sure I have as many benzos in my IV as I can be when I do the treatment. My doctor has been good in talking about how to allieviate, hopefully eliminate, any negative hallucinatory experiences. But I got to tell you, I'm still racked with fear about the whole thing.

I am curious though about coming out from the Ketmine. How long does it take to get back to normal, and do you get any short-term (or long-term) side effects mentally after each infusion?

Thanks again for responding.
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Old 06-15-2008, 08:40 AM #6
CZZ74 CZZ74 is offline
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Default Your welcome- coming out of the infusion

DSHUe, I think it is different for each person, for example I have a freind that has also had the coma, she reads during the infusion and has a snack! It has absolutely no affect on her. I sleep through the entire infusion just about- I usally get up once to use the bathroom. After the infusion I am very wobbly. When i get back to the hotel I go to sleep usually for about 6-8 hours. So with a two day infusion I am just goig to infusion, back to hotel- sleep- up next day for infuson- back to hotel sleep. Then I leave the next day to fly home. Once I get home I am still weak for about two days. And the benift of the infusion doesnt really show up with me for about a week. Then it hits and my pain level goes down almost 5 points. I have close to a normal life for me.
My friend who I mentioned at the begining of this post is not tired at all. So it is different for everyone. You sound like you will probably react more like me.
As far as side effects, the only one I have had is short term memory loss.
But I have had alot of ketatmine. You may not have that effect at all. Please let me know how it goes for you. It should really help your alloydina- it has all but eliminated mine except of course for flare ups. I am a really tough RSD case as I have something in my spine that irriatates my RSD daily and I can not have surgery on it. So please remember- each of us is different. You will have your own experiences. I can just offer my experiences as a possibility. Please remember to let me know how your are doing Ok? And please feel free to ask any more questions you might have. Take care, CZ

Last edited by CZZ74; 06-15-2008 at 08:49 AM. Reason: Name correction,spelling correction
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Old 10-30-2012, 01:46 PM #7
Ritchiestuff Ritchiestuff is offline
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Thanks for the info! I am waiting for my first 5 day infusion and I was wondering what happens after you leave the hospital during the treatments. Will I have nightmares, will I be able to eat, watch TV, stay awake? Can anyone share what the evenings after the infusions will be like?
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Old 10-30-2012, 06:41 PM #8
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Default Hi dshue

I had two Katemine infusions in my spine before my last spine surgery. I have not had it for RSD. The Katemine worked for me, it was done under floroscopy. I had no side effects, and the benefits worked for about two months. I didn't get long term relief, and proceeded to surgery for neck. I wish you all the best. I have heard of RSD being treated very successfully with Ketamine. ginnie
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Old 10-30-2012, 07:18 PM #9
reluctant@thetable reluctant@thetable is offline
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When I had my infusions (which were high dose outpatient) I went to a very close apartment and went to sleep for awhile. I was able to sleep and eat as usual. I had packed coconut water to have for rehydration. I must say I was a little "loopy" and would not have been able to drive or sign anything important. It was also a little difficult to walk- I would not try to walk too far on your own. Definitely bring someone to take care of you. Good luck.
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