Ketamine infusions?

1

I just joined the site a few days ago, but reading through the forums and all of the information that is on the site is awesome!

I e-mailed "Red" about some of the procedures that I have had completed, wondering if anyone has had a Ketamine infusion or possibly a nerve simulator. I had the Ketamine infusion 4-5 weeks ago, it was a 5 day in-patient, high dose infusion. I was kind of scared of it at first, but really there was nothing to it. Afterwards though...in the five years I have been diagnosed I have not had anything that really truly helps (except Lyrica/Neurontin). For 4 weeks it was completely gone for the most part, could rub my face, head, forehead, stay outside in the wind, brush my teeth. I had energy to run around, go places. It was really awesome, to say the least. It is just a treatment though...it stopped working about 2 days ago :( So 5 day hospital PCP stay for 4 weeks of pain-free greatness.

I will start another thread on everything that has went on with me, and my troubles with TN vs the military.

2

Are you in the USA?

Ketamine has a bad rap as a street drug - were you feeling high?

Can you explain if you had psycho-active feelings or thoughts?

I of course would take high over the devastating pain -- where did they infuse it?

And confused about 5 day inpatient --- you can't even get that for childbirth!

Please enlighten us!

3

Ohhhh

I found out more at http://rsdfoundation.org/en/Ketamine_Treatment.html

Looks like if you do hallucinate - they give you something to stop it. WOW

Would love to know if you would do this again and how it affected you all around.

4

A ketamine infusion for a long-term condition sounds a bit strange to me. Considering it has a fairly short half-life (the time it takes for your body to metabolise half of the drug) I can't see how it would affect a long-term condition. I have never heard of this and we have quite a few chronic pain patients at my work. Ketamine is perfectly safe in an inpatient setting (the bad street rap is because it's very strong - they use it as a horse tranquiliser!) however this is very intriguing, I'd like to know the pharmacokinetics and why it supposedly works? Also I wonder why they say midazolam as a pre-medication to prevent hallucinations - midazolam is usually used as a sedative which wipes your memory (it's useful for procedures where you have to be awake such as dental work or scopes, I've had it for a gastroscopy, you are awake to co-operate but can't remember anything later). I don't understand how that would work on hallucinations either! I'm one totally confused nurse! :)

5

Hah, all of your guys' comments are awesome!

If you look it up on the internet, you wont find much on it...if you do, make sure that you go to a university or hospital website that is posting a study or something believable. After doing my research I found that it is used for neuropathic pain, where traditional pain mgmt treatments are not working and they are really "buying time" or trying to get you some relief. It is FDA approved, which I was kind of suprised and really they use it widely around the world quite often. The US used it a lot until the 60's-70's until Percocet, Vicodin and other narcotics were widely distributed. There is a conspiracy theory behind it actually that drug companies paid to have it banned even from medicine for a number of years and put a lot of bad press around it pushing the street use of it. For example, Morphine at high doses kills a lot of abusers on the street and can cause some crazy side effects...but everyone looks at the good things it has done. ANYWAYS, not going into that...believe what you will on that subject.

So literally all they do is start an IV of continuous flow Ketamine, start out at maybe 5-10mg and work up to a dosage "tolerable"...for me it was 55mg, which all of the nurses were amazed and said they had never seen anyone that high. They really want to get as much of it as possible in your body, that you can handle within those 5 days. For some reason or another nerves and pain receptors respond to the brain differently after the treatment in the majority of patients...they still dont really know exactly why, but like for me...it was better than fantastic results for 4+ weeks. The thing is that some people it lasts two days, some it lasts up to a year, but it will end. Its just like taking a pill.

So all of the hallucination questions. I was so scared of this, more so than either brain surgery or other surgeries I have had. After the first few hours though, I was just watching TV. My daughter came up and I walked around the hospital with her (wouldnt let me leave the floor). Wednesday - Friday was the 55mg portion, and I did kind of freak out on the young Navy guy coming in to check vitals cause I thought I was overseas on a deployment for a few seconds. Honestly for that though, I think everyone has those dreams where they wake up and its really real...but meh, I can blame it on the Ketamine. Was I "normal? Heck no! Was it like you see on the movies little bears jumping around and Willy Wanka making me chocolate? Nah. Even when I did think I was starting to have dreams or whatever, they gave me a small dose of Attivan and I was fine. Funny story though, my doctor came on evening and said "I will make you my first patient on rotations in the morning so we can get your discharge done and get your out of here." I looked at my wife and mother and was like, what went wrong? Why are they letting me out on Thursday? Did something happen? My wife replied "No Nathan, its Thursday night." My reply "umm...what happened to Wednesday and Thursday?..." LOL

That is strictly just me though, I think we should all know that drugs affect different people very differently. Just like the dosage with me, I was able to take about twice the amount as any other patient they have ever had and was fine. Other patients start hallucinating at 10mg and they have to take it back down to 5mg...all depends on the person.

6

Have you done MVD? Would love to hear the rest of your story--have you put up a profile or blog here yet?

Wow - I wonder if I would do this before a second MVD if ever the choice were given - hmmmmm I am a child of the 70s with plenty of experimentation for my own personal studies LOL --- but I live in the midwest - and would be very surprised to see anything like that here

I flew to MI from MO for MVD -- so why not go to somewhere like PA for some PCP ( I mean medical Ketamine) LOL

I'm not Currently at high end pain - but this I will put in my back pocket for future research - seriously ---

Thanks and Welcome Here!

7

Cleo, from what I can see in that news story is that she contracted MRSA which has nothing whatsoever to do with a ketamine infusion. Even in saying that a LOT of people are colonised with MRSA and walk around the community with barely a symptom (though they may have slower-healing wounds than someone without MRSA). I have seen many a healthy-ish person with MRSA. I would say this person already had a compromised immune system and that's why she has ended up in a german intensive care unit for so long. Nothing to do with ketamine at all.

BUT I can see why in the news article it says you can't do it in the U.S. ... a "voluntary" coma is risky as you need respiratory support etc (chances are the MRSA in that patient ended up in her lungs due to this). Plus a whole other raft of ethical considerations.

Also, what Nathan 23 went through is not the same as in the article. He was never in a coma, he may of lost track of days but he never needed intensive care.

8

KC - No, I havnt had time to put up a blog or anything yet. I will as soon as I have time. I am starting my senior project (last class for my B.S.) and it is proving to be very time consuming, with work and TN. I did have an MVD completed Aug 11, so not that long ago...it actually kind of moved the electricity to more behind/above my eye and ear. On both sides of my brain the trigeminal nerve is crossed with the artery :/

I really tried to emphasize the internet research with this, because MOST things are completely off base, not even the treatment, or just plain false information for who knows what reason.

Medicinally inducing a coma, unless to prevent something fatal, over 2 days (from what the doc's have told me) is illegal in the US. Like one of my supervisors was in a bad car wreck, his brain was swelling and him being awake, in agony freaking out, raising his blood pressure and whatnot was going to kill him...literally. They induced a coma until they could complete all of the brain surgeries to reduce the swelling, over 2 weeks. That is when they can do it in the US. Once they get up to the highest dose you can handle (2nd-3rd day), for me it was vitals every 15 min for 4 hours, had an ICU bed open for me for the last 3 days, and cardiology and those guys had my records/notified. JUST IN CASE.

The infusions are FDA approved (for limited things, one being chronic neuropathic pain where traditional methods have failed) in the US, and you are awake through the whole procedure. I dont even really know how to explain it though for me, it was kind of like a 5-day drunk...maybe, but nothing bad (like headache, sick, blah). Its not like being drunk though at the same time. I wasnt completely beligerant or whatever, the military hospital I was in JUST opened and is where wounded warriors go from overseas. They had "room service" vs hospital food, I was able to call, order all my food, etc. I did however get a roast beef sandwich one night, took one bite and thought there was something really really really bad about it and it was disgusting...so what did I do? Took another bite and thought about there was something on it I really really really didnt like, again, took another bite. Til I had 1-2 bites left and looked and it was covered in really chunky bleu cheese, and I HATE bleu cheese, like throw up if I accidently eat it hate it. So obviously I was not 100% "there."

Again guys, im not advocating it, I really was just asking if anyone had it done. If you are in a really really bad position and the pain is so bad you will do anything, dont say no to your doctor if it is suggested just because of the random Google searches. Trust me. That is what scared me so bad I about backed out, and I learned about 90% of it was the wrong procedure (the coma trial that is done in Germany, Mexico, etc) or just people putting bad information out there. Afterward, it was one of the greatest treatments I have had done in over 5 years...wish it would have lasted longer than 4 weeks. I am actually hoping I can get a 2nd infusion done, the (correct) studies show that is the longest lasting in most people.

Also, I was suprised that on Friday they just stop the IV, discharge you, even told me to go to work on Monday. Saturday I woke up and wanted to go to the park with the kids though, wanted to do all this stuff I havnt had the energy for or scared I wont make it through w/o pain.

9

Has anyone had the ketamine infusion since this discussion stopped? My doctors are having me stay on limotrigine (lamictal) to see if it works, which it hasn't so far. Then they will try an Alzheimer's drug called Namenda/Mamantine, and when/if that doesn't work, they wanted to do a ketamine infusion. It would be at a moderate dose (she didn't specify how much, just that it wasn't low or high) for 5 days, 4 hours each. It wouldn't be an inpatient stay. They said it was supposed to "reset" all of the brain's pain signals to stop my facial pain. I have had four stellate ganglion blocks and one direct occipital nerve block which all failed. I'm interested in seeing if anyone else has tried this.

10

You might research it under other neuropathic pain like people who have neuropathy etc. Just from my initial poking around, it's a needle in the haystack as far as stuff written /published on it....I know Nathan had his done at VA..... and that University hospitals are good for this type of treatment----- where would you have it - if you end up considering it?

11

It would be at the Shands hospital in Gainesville, Florida. I know this would be "if" the medications don't work, but I see it more as a "when". I had read only a little about it when the doctors had diagnosed me with RSD/CRPS, but I still couldn't find people who had it done, only some research papers and general ideas that it would help chronic pain.

12

I'm looking to keep this in my Future Needs Files - just in case --- is there a partciular department or group of doctors at Shands? THANKS!

13

I haven't had a ketamine infusion, but my Dr. made me a nasal spray of ketamine and lidocaine mixed together and nothing has ever worked so well. I use it when the pain is at its worst and it numbs it for a while.

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14

i have tried Ketamine gel.

i did'nt read all your interesting responses here - but can tell i was made a prescribed gel made of LIDOCAINE + KETAMINE + another sunstence i don't remember.. ... it helped very little... it was a gel to put on the gum. not a shot !

15

Karen, can you tell me more about this ketamine infusion? Can a person get it at Shands? Thanks... Grecio

16

Does anyone know of a hospital in the Southeast where PNS (peripheral nerve stimulation/modulation) is done?

Does anyone know of any research where ketamine is used for TN? My wife's doctor said for me to bring him some research and he might prescribe Ketamine for her. Thanks...

17

Hi Grecio
Although I live in the Atlanta area, I had my MVD surgeries, and my PNS implanted by a neurosurgeon in NY. My device is made by St. Jude’s Medical. You can go to their website and see if they are working with any doctors in your area. Bear in mind that there are only a few doctors that are using this for TN, as its primary use is for back and migraine pain.
I am extremely pleased that I made the choice to get the PNS. It completely controls my ATN pain, and I am medication free. I would be happy to answer any questions you might have.
Christine

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18

I have had ketamine infusions. It is one of the few ways to achieve some sort of remission with relex sympathetic dystrophy. The theory is that in the brains of people with rsd ,their MDMA receptors are misfiring . Ketamine is an MDMA antagonist and therefore " resets " your brain …sort of like rebooting a computer. I had it as recently as February 2015 for 5 days medium dose . Yes I tripped my brains out ( and I am a super take no drugs health freak) but it was for the end goal and worth it. They give you Ativan during the procedures so it wasn’t scary tripping.
My rsd only came back in December 2014 after 7 years of full remission. Early intervention is critical for a good outcome so I booked the ketamine infusions right away. It worked last time. Sadly this time it did not work. I went on nudexta ( dextramathorphan ) another weaker MDMA antagonist soon thereafter and I felt better almost immediately .
They are using it at lower doses for depression and are exploring other uses in all types of chronic pain

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19

Hi there, Nir_Morita,

Can you please tell me the dosage or prescription of the nasal spray? What percentage of each and whether there is anything else in the spray? I am desperate for such a spray. Thank you!!!

20

Hi karenEdit,

Can you please tell me the dosage, percentages, etc of the nasal spray? I am desperate for such a spray. Thank you!