Week one of ketamine over
 

Hi all

I had my SGB last Tuesday followed by a four hour ketamine infusion.
I slept through the whole thing and had some pretty vivid hallucinations.
What is particularly strange is that I have experienced the same hallucinations each time I have been "under" the ketamine - a continuation if you will of the past "trip" or an extension of it- kind of odd;)

I started out on 40 mgs of oral ketamine a day post infusion and moved up to 60 mg.
I don't feel too badly from it - a little tired and spacey but able to function fully at home.

What I do feel is a tremendous reduction of my symptoms.My burning pain particularly has decreased significantly.I would say a good 65%- sometimes more !!!!!!!!
Whether this will continue post treatment remains to be seen but it feels so nice right now.
I remain very positive and hopeful that I will get at least a week or two from this after all is said and done - any more would be icing !! 2 weeks at 65% reduction compared to what I have been like lately would be great right now:)

I will keep you posted -:)


Much peace

GnP

GnP
Thanks for the update....Pain relief, how wonderful !!!! Hopefully it will last a long time :)
Jeanne

Dear GnP,

What wonderful news, you have made my day. :) I hope your pain levels stay down for good. You have such a fantastic atitude. I am so very happy for you GnP. Much Love, Roz xxx

great great news GnP. you must be so happy.
when i was a child i underwent anesthesia every few months and i always had the same nightmare while under .... strange you said that about the Ketamine.
keep us posted on your progress. and all the best.
joan

GnP,
Congrats! I am very happy for you. way to go.
Hope

Dear GnP -

Love the idea if a continuation of your trip from the year before. Sounds like the interrupted delivery of a mesaage from you subconcious. Enjoy!

Mike

Hey
Thanks for the vote of confidence:)
I can't say this has been the most pleasant week of my life but the pain reduction certainly helps when the mental spaciness rears it's head

Joan, Jeanne, Roz,Hope , Desi
Thank you for the words of encouragement.It means a lot to me:)
I also wish that everyone could get a taste of this stuff.I am becoming sold on it's value for all of us!!!!

Joan- that is soooo very interesting - there must be something to it.I mentioned it to my PM doc yesterday when I saw him for my one week check up.He didn't say anything about repeat hallucinations- only how to change the content next time as they are a little weird .However I am certainly going to do a little research on the matter now that I see the experience of repeat hallucinations has been replicated, if only by us - very interesting stuff;)!!!!!! PS .ketamine is often used in pediatric surgery

Mike - when we have lunch, and I tell you exactly the(creepy) nature of my hallucinations you may not look at it quite that way or maybe you still will :D .I have actually had ketamine as an anaesthesia every time I have had a block so my hallucinations and their their same bizarre content have been more frequent than just yearly!! I am working on figuring out the code(don't ask) - there is some metaphysical formula that I am destined to find the solution for and that is just the part I can share right here :D .Good stuff that ketamine:rolleyes:


Will keep you posted on the much more important factor of pain relief
Doing this mini- trail has got me beyond excited for the potential of this drug !!!!!!

If only we could all move to Australia and get medical access to the wide awake coma treatments through the health system - we would all be feeling so much better-what a nice dream that would be:)


Peace

GnP

Bizzare they are continuing... great that it is working :D long may it last :D WOOHOO!!! GO YOU!!

that rocks !xxxxxxxxxx

Thanks girl
You are always thinking of others when you have so much on your plate
Your heart is so very large indeed .
If anyone deserves to be cured - it be you :)

Mucho love

GnP

hello that is so wonderful
 

Hi GNP I am so glad that ketamine is working for you, where I am I find they tend to just do blocks till they stop working then tell you to live with it and treat the symptoms.. it sounds like the way to go is still to treat the source and that is what they are doing with the ketamine yes?

Hugs GNP I'd join you in Australia if I could.. hey have you heard from Laura from vancover? it seems to me she was looking for you after the BT1 crash she was going to germany for the full treatments then.

Be well
Sandra

Yo GnP

Would your dr consider you on a daily ketamine regime?

I seriously swear by it - it has made a definete improvement to my quality of life and even if that is all it has done then at least it is helping - much better than morphine or any other of the pain killing drugs - and I've tried them all. You can take pretty large oral doses (ok. I can) and not have issues and you don't get the out of its/ highs/ lows/ confusions/ depression/ appetite issues associated with many opiates. I really do feel that you should ask if it's a possibility!!

long may the relief continue! and I hope the drs start to use ketamine properly soon

love ya

froggsy xxxxxxx

Hi everyone,

Gnp-- I wonder if my hallucinations are similar to yours.:confused:
I don't usually have them anymore as I recognise earlier to ask for the infusion to be turned down but they are always the same. All I can describe them is as being very "psychedelic" Bit of a wild trip the first time but now I relax about it because I know they will end very soon.:eek:
Tayla:hug:

What doses are you given by infusion and over what time? I just don't appear to have ever had hallucinations from it... (maybe I hallucinate that I don't hallucinate?) or is it because it's oral and not IV? I take up to 125mg a day.

Bizzare!!

Love ya

Froggsy xxxxxxxx

Kinda off-topic, or maybe not,

I live in my recliner 24/7 and watch lots of TV, so much that reruns have forced me to programs I normally wouldn't watch; like the news, which is just reruns on a half-hour loop. And cable news celebrates celebrity; most of us probably know more about Brittney Speers (sp?) personal life than your child's. eccchhhh! But guilty. I don't want to know that about my daughter.

And doctors bow to celebrity. Wrestlers getting massive scrips for steroids; a (late) celebrity apparently had access to drugs while she was in detox; and is it possible that a singer/dancer with RSD could find a doc willing to say its not RSD while giving here overdoses of ketamine?

I don't know the kinds of hallucinations k might bring on, so I don't know whether it might be responsible for a couple of interviews the cable news shows used to savage Paula Abdul; they said she was drunk in the ones where she appeared giddy and high.

I've been drunk a few times and my memories are of brief periods when I felt like Paula Abdul acted, but of much longer periods when I wasn't happy at all (even before the hangover). If P.A. is my kind of drinker, those interviewers had only a 30 minute window of opportunity, then the alcohol really takes over and she wouldn't be "fun" anymore.

I don't know about ketamine hallucinations, but there was a time when I paid a generous $2.50 for a hit of genuine Orange Sunshine. and I was happy as Paula for hours. DISCLAIMER: I do not advocate the use of LSD, if for no other reason than you don't know who made it or what's in it.

Would knowing she has RSD (if she does) affect production decisions? Could it cost her some lucrartive contracts? I suspect it could -- and would. If I were P.A., I would go with the arthritis story and lots of ketamine. Hell, I'm me, and if ketamine could relieve the pain from my other injuries AND the RSD pain, and if I had the money/celebrity, I'd do it in a heartbeat.

O/T or not? Is it possible that Paula Abduls doc lied when he denied she has RSD and is he now giving her "celebrity doses" of ketamine? Can anyone who tried ketamine relate to that kind of giddy high we saw on TV? I it possible P.A. might be harming herself with excess ketamine? I think I would trade 10,000 of my tomorrows for a few hundred really good ones...Vic

Where do I begin..
First Sandel yes ! Last time I heard from Laura she was thinking most definitely of going to Germany .I have not heard from her in quite some time .I have no idea if she ever went through with it.
I hope we haven't heard from her as she is cured and out there enjoying her life.That would be my wish for her:)

Tayla - we would have to discuss our hallucinations at length in a "judge mental free zone" .We could compare where realities begin, end and a place where dimensions transcend one another without a second thought as to whether this could possibly be or not be - and what about those white stucco walls - what is up with that:D :D
So yes I am up for it - wouldn't it be cool if they were the same:cool:

Frogga .I am definitely building up a tolerance to the ketamine. I know it isn't stored in the body - I feel absolutely fine the next day - it's as if I haven't taken any at all before - but when I do take it I have grown accustomed to the feeling so it is much easier to handle.
I am not sure about the daily thing. First,I am not sure if my doctor offers it that way .
Second ,as I am still driving and mobile ( knock wood) this is not a drug I would feel comfortable driving on - Although I am accustomed to it - it does have some side effects that I would not be comfortable with while driving bottom line.I just won't risk it .
So thats a road I would have to cross when and if I get there - pain relief vs. independence . now there is a conundrum indeed!!!!
And yes I have only had intense hallucinations through infusions or in surgery.

Now Vicc - yes P.A does have RSD - It is fact.LA is a small town and the number of RSD doctors and cottage therapists to go around is not that large .
We all share many of the same doctors and or massage therapists or some treatment person or another .
If people all recall the history of her coming out with CP - it was not really a choice - it was a diversion .It happened when she got her hand caught in the cookie jar with that young contestant on AI and all of a sudden the sob story of her 24 year battle of CP and my goodness RSD all a PR attempt to take the focus off her very deep troubles over at AI.
She even did the cover of People - all the while she was being accused - with excellent proof of having sex with a contestant - talk about odd behavior:D
She does not want to be the poster child for many of the reasons you say- Vicc because she is out of it- This is Just my humble opinion and a few others :rolleyes: - you need only watch her E true Hollywood story to see a women who is not all there with twitches of someone on too many meds.
Now having been on ketamine I don't think it is a "happy drug"- maybe she is on too many narcotics or something like that - this ketamine does not make you particularly
charming nor social - but then again mixed with a cocktai l of your own design with no rules , what do I really know:confused:


I hope I have that all covered

and so glad to hear from you Vicc:)

Peace

GnP

Hi all,


Frogga, I would imagine that the hallucinations are far more likely to happen on Intra-venous Ketamine. I was having oral Ketamine a few years ago and never got the slightest "buzz" from it.
It is a place called "the K-HOLE" in street terms. These hallucinations are what are aimed for but they are only sustained by taking repeated and large doses as Ketamine is very quickly absorbed by the body, it has a very short half life which is why it is so safe to use under supervision.
It is interesting that after all these years I still do respond to it which makes me believe it is difficult to become tolerant to it.
I wonder if because the outpatient dose is given and then you go home whether it is a large once off dose as compared to the slow titration that an inpatient treatment affords?
I would love to know how much is given and how long you stay in the outpatient department before you are discharged?
Cheers all
Tayla:hug:
ps- Frogga, I usually have my infusions running at about 6-8 mgs per hour which would be equivalent to approx 200mgs a day but being IV it does have a much more apparent affect than oral.

Thanks Tayla
I knew I forgot something:)
Ketamine is absorbed into the bloodstream at greater levels through IV infusions than orally.
That is not to say it does not get absorbed quite well orally -it does -just not at the levels of IV infusions.
I do have the study which supports this .
I will search for it and post it.
If oral ketamine was a sufficient mode of transport then there would be no need for these coma doses .I think you need quite a lot orally at once to get to the k- hole ; not several mg.s titrated throughout the day.
The ketamine booster or Schartzman infusion is 20 mg an hour for 4 hours for a total of 80 mgs IV over 4 hours - discharged immediately
My doctor does this in his mini protocol to boost the system - to get it going with a big bang bang - rev it up and then keep it going with oral doses.
The cost of the IV infusions right now( hospital beds,infusions and nurse over seeing procedure ) without an insurance program covering them is prohibitive to do anything more.
Oral ketamine made at the compound pharmacy is pretty cheap.

Please let me know if there is anything else you want to know that I may be able to help you with Tayla and all :)

Peace

GnP ( still feeling good with one half day setback:))

GnP,
Best wishes that you continue to have good results.
This is so interesting.
Linmarie
:hug:

So True!!!
 

:You-Rock: What a wonderful post GnP!
Frogga, she is so right on!! Your always thinking about others! your such a wonderful all around good buddy to me and I am so happy to have met ya on this board!! WE LOVE YOU SWEETIE!!!:You-Rock: :Heart: Love and hugs:hug: :hug: Love ya!! Desi

Thanks Lin Marie - feeling pretty good again the last 2 days -maybe not 65%
but a good 55%.
I am quite enjoying this guinea pig experiment :)

If I can share what I am learning with other's then it is all the more worthwhile.
So little is known about this disease and consequently our options to treat it . It is so great that we have venues like this to get the information out there!!!!

Desi - Thanks - I only said it as it is true :)


Peace

GnP

So happy for you - wishing you the best
 

How wonderful that you are experiencing relief from the ketamine. I am so very happy for you. I have heard that it really helps burning pain. Are you getting it in an IV or an A Line ( run up through your arm to your neck)?
This is a different type of threatment I never heard of. I thought you had to go into the hospital as an in patient for a week - then have boosters for a day every other week or so. I believe that is how Dr. S. does it.
Good for you! It is unfortunate about the hallucinations but I believe there is a drug they can give you to prevent this. I have read about this in several places - just can't remember the name of it.
best wishes for continued pain free days.
Sydney

I took the last of my ketamine
 

and now I want to cry like a baby:) :(

Yes today will be my first day without .
The last 3 to several days have been GREAT.
MY burning pain was down to almost nothing :) :)
I was more accustomed to the feeling of the ketamine so I was able to do more than just lie around and stare into space like the first week .
I also felt really good- no I mean really really good.I used my hands in ways I haven't used them in years!I cleaned out a garbage disposal:D
Now I know to many that does not sound very exciting - and on the excitement- o rama meter it probably wouldn't score very high - but when the thought of even putting your hands down there normally has me running in the other direction, this is huge!!!!!!!!
Two weeks ago it would not have been within my realty . Yesterday I said"Wait ,I can do that " and stuck my hand down and messed around in there to see what was stuck in the blades of the the disposal and I pulled the stuff out ." I was grossed out , stunned , and incredulous all at the same time.
My hand did not come out bright red and it did not hurt while I was doing it.
My hands as of right now do not feel fragile and tender on top of the burning and pain.
How long this will last I don't know but I am going to savor every minute of this.
I don't feel "cured" but I feel a whole lot better right now.

It is a little early in the new day to see how things will go.

I do have an appointment with my PM doc this week and I would indeed like to discuss some ways to incorporate ketamine into my lifestyle-and med protocol.
As it has a short half life and leaves the body so quickly maybe 10 or 20 mgs for breakfast may be low enough to just do something before I go anywhere
and maybe a goodnight dose at bedtime so I am not a danger to anyone .
I have no idea if he will be keen on these treatment options but you can never get a "Yes" if you don't ask.

Again,I am very psyched for the potential for this drug for all of us !!!

Even if I don't feel good for long ......I had yesterday (there is a cheezy song in there somewhere :D )

peace

GnP

How wonderful!!
 

Yay, GnP!! I am so utterly happy for you, and that the ketamine brought you such good results! :hug: :hug:

Savor up those wonderful days with a lot less pain.

Love ya! xxxxxxx :hug: :hug: :hug:

Cleaning out the garbage disposal sounds exciting to me! Its the little things that we have lost that make it so much harder to deal. Iam so happy for you. I hope it keeps working!


Sue K.

GnP that is awesome! definetly get your dr to have a look at it daily. It has made a difference to my life in a way no other med did. I am SO impressed with it. Yeh, my pain is still severe.. but 125mg ketamine a day works better than the stupidly high levels of morphine/ fentanyl I was taking and with NO MAJOR SIDE EFFECTS...

fingers crossed and let me know
xxxxxxxxxxxxxxxxxxxxxxxx

Thank you all
I guess cleaning out the garbage disposal IS a major accomplishment Sue.
I don't recall feeling up to that challenge in my immediate or not so immediate past .
It has been 2 or 3 days since I stopped taking the ketamine.The first day , I felt kind of crappy.
I certainly don't feel as bad RSD wise as I did before the ketamine .I am not in a flare .
That was the major purpose of this procedure . I was in the worst flare-up I have ever been in .

I now have a sense of not being as "perfect" as I felt while on the medication.
My limbs had a more sturdy feel about them .They already feel a bit more fragile and tender .
I see my PM doc on Friday and I am going to bring up a low dose of ketamine as part of my med regimen for bedtime .It does have strange side effects so I couldn't take it in the amounts I was on before or I would have to stay home all day.

11 months until I hit Germany and I am really looking forward to it!!!!!!
This stuff has great potential for all of us so I am very excited.If you have a chance to try it -PLEASE DO!!!In oral form it is very inexpensive.

Peace

GnP

GnP,

Can you give me some specific information about the doctor's protocol with the ketamine? I'm just wondering if this could be something that I could try. You had mentioned that you weren't able to function for the first week. Were you able to drive, etc? What was the duration of the medication and such?

I had tried to schedule an appt at Mayo Clinic but was denied. I guess my RSD isn't bad enough...

Any help you could give me would be very helpful.

Thank you!

Hi GnP,

Is this ketamine procedure something that you do before you go to Germany?
Is the Germany process more ketamine for a longer duration?

I hope you are still feeling good. And, yes, cleaning out a garbage disposal is a major accomplishment when you haven't been able to use your hand for awhile. Do you still have much strength? I lost alot but am very happy to just be able to use my hand.

Linmarie
:hug:

Hey DwT and Lin Marie

I think somewhere in this thread I went over the protocol I just went through but I can cover it again.It is not in place of the going to Germany next year ,I just had to do something to get my flare under control!

On another note this is my my personal opinion of the Mayo.I have heard the same from several others- If you have cancer - get your butt to the Mayo .Nerve disorders run the other way - it's not their thing- they are light years behind.
I had a horrible time when I went to the Mayo. If you want more info PM me :)

Back to ketamine -This current protocol began with a SGB ( which is optional) followed by a 4 hour ketamine infusion a la Scwatzman protocol which is 20 mg /hr for 4 hr total 80 mg. It is what he calls his boosters .
This was followed by an at home oral ketamine regimen of 2 days at 40 mgs and then up to 60 mg a day .I think I was on it orally for a total of 12 days .
The oral dose is based on what you can handle .
I am 5'5 and weigh 105 .I would assume a larger person might be able to handle more .
However I was very highly motivated to feel better and I didn't care if I felt poorly .
This was what I wanted to do for me so maybe this was a good dose.
I was given ativan as a neuro protective agent .There are studies that prove that ketamine works better with a neuroprotective agent not just as an adjunct therapy to stop the hallucinations(at this dose hallucinations are unlikey but you do feel odd or other worldly).

Yes DwT I did feel rather odd the first week. You don't build up a tolerance to ketamine as it has a short half life and leaves the body very quickly (thanks T) but you do grow accustomed to the feeling.
I don't think I would be able to exist on that high a dose but I am going to discuss with my PM doc on Friday adding a lower dose to my med protocol-
maybe 10 mg AM and 20 mg PM . I notice the difference already in 3 days without.


Any highly motivated pain management doctor can get this going in their own area .
All that is needed in the outpatient setting is a RN to oversee the infusion of ketamine which is available in any hospital setting as it is an anaesthesia .
Oral ketamine is made in a compound pharmacy and is very inexpensive ( which is probably why it is taking so long for all of us to get it ;) )


Please talk to your doctors about this .It is not rocket science and it works.
It can be made available to you if you make your doctor make it available.

Germany is next year
I get induced into a coma for 5 days and get massive doses of ketamine - way to much too handle while awake .
The goal is to reboot the computer.
When I wake up my brain will be working the way it used to - no messages of pain where there are no injuries :)

When I saw Dr, Schwartzman he told me I could do his wide awake coma treatment and I could have a 50% chance at a 50% chance of a reduction of symptoms.
With the full on coma treatment I have more than 50% chance at a CURE.

I like those odds .

The decision is much more complex than a simple matter of math but I have decided that the coma dose is the best option for me.
I believe I went over it all in my thread on " what Dr.S said ;trip to Philly and denial over" or something along those lines a few pages back.

Peace

GnP

I saw my PM doc and asked for oral ketamine as part of my meds protocol.
You know you have a great doc when he is receptive to any new ideas.

He told me that as of right now there are not enough published studies on the long term use of ketamine for him to feel comfortable treating me that way. As it is very toxic to the liver ,he would prefer that I only use it on an emergency basis for really bad flares( he will be happy to write the script) then as part of my regular med protocol.
As soon as more positive research is published that long term use of the drug is safe, he would write the prescription,but for now it is on an emergency basis .Good doc - cares about my liver.I do too:)
He did however call the compound pharmacy and have them make a topical ketamine cream for me right away .It is a 2% ketamine gel.It does give some relief to the burning pain - an option I can live with for now.

So that is it from the ketamine front for now.

I hope this information has been helpful to at least one other person out there.
I think it is really important that when any of us get to try new treatment options that we share them with others so that we are all at the forefront of groundbreaking news and treatment in the fight against RSD
That way we have more choices available to us
when looking at whats next for us in our in our approach to this disease .

Good Luck to all

GnP

Hi GnP,

The biggest fear that they have with Ketamine P/M Docs or Anesthesiologists is that your throat could close with Ketamine. Because you are not monitored.

Their 2nd, maybe some their first is being sued. This is why in the States they are more cautious. Much Love, Roz xxx

Hey Roz and all

I think it would be worthwhile to read this wikipedia article on ketamine

http://en.wikipedia.org/wiki/Ketamine

Ketamine is the safest and least restrictive of any sort of drugs in this class to the throat, nor is it prone to promote any breathing difficulties
The only reason my PM doc would not give it to me ( I do not speak for other PM docs ) is because of it's toxicity to the liver.

I would hate to end a very informative thread with questionable information.
it goes against all the information I have been told,
read or researched .

Roz hon - if you can find me some fact based evidence to back this up I would be happy to read it .OK:)

Much love and peace

GnP