[lorigood243]

Could someone please tell me what it feels like...

Can you drive after having one or should someone come with me?
What will i feel like when i get home?
Can i work the next day?

I havent had a consultation yet with the doctor at the hospital I will be going to and I am a bit scared about having this done. It took forever to get a referral to go to this doctor now its taking forever for the doctors office to call me to give me an appointment.

I have read many of your posts that say this will be life altering and it may give me my life back, so on one hand i cant wait to go, on the other i am scared of what i will feel like after having it.

Thank you!

[DeesRSD]

Hi

For me personally:

After I get that IV in, which I feel is the worst part, partly because I hate anything needlish and partly because it hurts even with the numbing cream...it ( the K ) sorta feels like a calm... I can feel my body start to relax and the pain drifting away. I do not nor have I ever had any hallicanations, Im just relaxed and then I drift off to sleep

I was told to aways bring a driver with me, it woud be way dangerous to drive afterwards IMO

You will most likely feel sleepy when you get home, I think this is the best sleep I get.

Im not sure if your getting low, med., or high dose but Ive never met anyone who worked the very next day after infusion, that doesnt mean someone hasn't but I don't think I would try...

I wish you much luck with your infusion and I too remember being very scared the first time I had it done.

Hoped this helped in some small way and sorry for any typos,
Dee

[lorigood243]

Yes Dee You have helped me a great deal!

So i will set aside a few days to get back to normal before i try to drive or work, thats good to know. Maybe i will plan to have it on a Friday and definitely bring a driver.

a few more questions...do you get nauseous or any bowel changes after having so much pain meds put in? also where does the needle get put in?

I have seen where folks on this board say they go several days in a row....is that what you do? how does that benefit more than just 1 day and thats it?

Thank you kindly, im sure your reply will help many others!

Lori

Originally Posted by DeesRSD

Hi

For me personally:

After I get that IV in, which I feel is the worst part, partly because I hate anything needlish and partly because it hurts even with the numbing cream...it ( the K ) sorta feels like a calm... I can feel my body start to relax and the pain drifting away. I do not nor have I ever had any hallicanations, Im just relaxed and then I drift off to sleep

I was told to aways bring a driver with me, it woud be way dangerous to drive afterwards IMO

You will most likely feel sleepy when you get home, I think this is the best sleep I get.

Im not sure if your getting low, med., or high dose but Ive never met anyone who worked the very next day after infusion, that doesnt mean someone hasn't but I don't think I would try...

I wish you much luck with your infusion and I too remember being very scared the first time I had it done.

Hoped this helped in some small way and sorry for any typos,
Dee

[DeesRSD]

Hi Lori,

Im glad I was of some help to you

Having it on Friday and then being able to rest over the weekend sounds like a great idea, no sense rushing, and you will need your rest.

The IV is usually inserted into the top of the hand, well for me anyways, seems that is where my veins dont hide so bad

Im nauseous alot most days but when I was getting low dose in Boston,they would just give me nausea meds into my IV, course same thing with the higher dose in CA, they just take that extra precaution. If you are prone to that, I would let them know so they can take care of it before it happens. No bowel changes for me, although Im sure its an individual thing, some meds can make some constipated.

Ive never done the days in the row infusions. I was going every 2-3 weeks in BOston for low dose but then I found a doc in CA who does higher dose over 4 hours, and then a week on the ketamine pills; this can substain me for anywhere to 6-8 months, now I do still have the pain in that timeframe but its more tolerable and I do not have to be on Methadone any longer.

Ive also moved out here to AZ, and the weather has helped me so much, those freezing cold new england winters really are hard on someone, and it also put me closer to my CA doc

Please feel free to ask me anything you want and I will always try and help. Ketamine has given me my life back, and I did try about everything else first.

Talk soon
Dee

[lorigood243]

Thank you , you have helped a great deal! Im no scared to do it now. I hope i get the same results as you. Having a life out of this bed is just a big dream now. It would be a great gift! Will be in touch Dee
Blessings
Lori

Originally Posted by DeesRSD

Hi Lori,

Im glad I was of some help to you

Having it on Friday and then being able to rest over the weekend sounds like a great idea, no sense rushing, and you will need your rest.

The IV is usually inserted into the top of the hand, well for me anyways, seems that is where my veins dont hide so bad

Im nauseous alot most days but when I was getting low dose in Boston,they would just give me nausea meds into my IV, course same thing with the higher dose in CA, they just take that extra precaution. If you are prone to that, I would let them know so they can take care of it before it happens. No bowel changes for me, although Im sure its an individual thing, some meds can make some constipated.

Ive never done the days in the row infusions. I was going every 2-3 weeks in BOston for low dose but then I found a doc in CA who does higher dose over 4 hours, and then a week on the ketamine pills; this can substain me for anywhere to 6-8 months, now I do still have the pain in that timeframe but its more tolerable and I do not have to be on Methadone any longer.

Ive also moved out here to AZ, and the weather has helped me so much, those freezing cold new england winters really are hard on someone, and it also put me closer to my CA doc

Please feel free to ask me anything you want and I will always try and help. Ketamine has given me my life back, and I did try about everything else first.

Talk soon
Dee

[kathy d]

Hi Lori,
I wanted to say hi and to say each person has their own reaction whether good or bad. There are many different ways it seems to have ketamine done. I personally would never do it again as it made me 1,000 times worse than what I was before I started the program. I was down to one cane and on a pain patch. I went in thinking I would have 85% less pain for several months. I was in ICU for 7 days instead of 5 because a nurse there stuck me on the commode and left me and I fell off severely hurting my neck and back. I know the ketamine was working but unfortunately with ketamine you must be very careful and not hurt yourself in any way. The nurse blew my whole treatment. The medicine was scary too. I felt paranoid like the nurses were going to kill me and i had to be nice to them. I hallucinated and pulled ivs out of my arms three times. I remember coming in and out of consciousness. I don't remember the first week at home with family members at all and had a hard time trying to figure out what happened to me. It was horrible and I've been bedridden since Sept 20th when this all started. I had the first booster shot Oct 21st and had to stop it as the hallucinations were terrible and I thought I was dying. I could not take Ativan and had a reaction to it so that is why it was so bad then. I can barely get out of bed and now at 47 years have been looking into going to a nursing home. I am trying to stay in my home and have helpers come to my home each day. I know I would never have it done again because it made me so bad and I feel if I didn't fall I would have had a better outcome. Also, the more you sleep the better the ketamine works in your brain. No one ever told me or my family that so I wanted you to know that too. Best of luck with whatever you decide to do.
kathy d

[lorigood243]

OMG Kathy.....

i am SO sorry for your experience thank you for telling me. several years ago i took ketamine orally and i did have hallucnations...i just hoped getting the infusion might be different/better. i am scared. i am a heavy woman and have been mostly in bed for 5 years because of 70lbs of abdominal swelling from surgeries and a herniated L4 disc. i was hoping the ketamine would be Shangra La for me. my hubby doesnt want me to do it, hes not even sure i have RSD he doesnt know what to believe because i have been to so many doctors over the years. i discovered this and showed my doctor who said yes i think you have it. ketamine looks like it has helped many people, but now im just not sure. thank you Kathy, i hope you are sueing the hospital!
lori

Originally Posted by kathy d

Hi Lori,
I wanted to say hi and to say each person has their own reaction whether good or bad. There are many different ways it seems to have ketamine done. I personally would never do it again as it made me 1,000 times worse than what I was before I started the program. I was down to one cane and on a pain patch. I went in thinking I would have 85% less pain for several months. I was in ICU for 7 days instead of 5 because a nurse there stuck me on the commode and left me and I fell off severely hurting my neck and back. I know the ketamine was working but unfortunately with ketamine you must be very careful and not hurt yourself in any way. The nurse blew my whole treatment. The medicine was scary too. I felt paranoid like the nurses were going to kill me and i had to be nice to them. I hallucinated and pulled ivs out of my arms three times. I remember coming in and out of consciousness. I don't remember the first week at home with family members at all and had a hard time trying to figure out what happened to me. It was horrible and I've been bedridden since Sept 20th when this all started. I had the first booster shot Oct 21st and had to stop it as the hallucinations were terrible and I thought I was dying. I could not take Ativan and had a reaction to it so that is why it was so bad then. I can barely get out of bed and now at 47 years have been looking into going to a nursing home. I am trying to stay in my home and have helpers come to my home each day. I know I would never have it done again because it made me so bad and I feel if I didn't fall I would have had a better outcome. Also, the more you sleep the better the ketamine works in your brain. No one ever told me or my family that so I wanted you to know that too. Best of luck with whatever you decide to do.
kathy d

[SandyS]

Hi lori,

I am the mom of a 17 year old daughter...She has had RSD for many years. She has gone through 2 rounds of Ketamine infusions and each time they have helped her immensly. She is in a bad place right now, we had hers done through Dr. Kirkpatrick in Tampa, Florida...He was wonderful and very caring with her. She had the first one done when she was 15. She has asked to have more. I will tell you that they are tough, but for her the out come was good. You have to make your own decision and weigh the options. It sounds like you need to try this to see if it works.

Good luck Lori, I will keep you in my prayers.
Sandy

[SandyRI]

It's too bad that you had such an awful experience with your 5 day inpatient ketamine treatment at Hahnemann.

In spite of the risks, I still believe that ketamine remains the best option for many of us with RSD.

Dr. S used to practice out of Jefferson which is a highly respected hospital. What a bummer that he switched.

Many patients have managed to get through the 5 day experience at Hahnemann without incident. But I do know of someone here in RI who was apparently injured by the negligence of a nurse while there - his parents were horrified by the attitude of the nursing staff while he was in what they think is a euphemism of an "ICU." On the other hand, there is another RSDer from RI that just completing his 2nd 5 day inpatient at Hahnemann and will be coming home this weekend. He is reportedly doing really well. He LOVES Dr. S. and would go nowhere else for treatment.

The Hospital for Special Surgery in NYC also has a 5 day inpatient program. The hospital care is supposed to be far better than Hahnemann's. When I tried to get an appt. with the docs they weren't taking new patients - that was a few years ago and things may have changed.

I am sorry that you had such a bad experience. But I still think that EVERYONE that has RSD that has a chance to get ketamine should try it (insurance approval is tough, I had to appeal and appeal and appeal!!!). It is one of the most effective treatments we have available today. Ketamine has really changed my life for the better.

I am so sorry that you are having a rough time, and truly hope you feel better soon.

XOXO Sandy

Originally Posted by kathy d

Hi Lori,
I wanted to say hi and to say each person has their own reaction whether good or bad. There are many different ways it seems to have ketamine done. I personally would never do it again as it made me 1,000 times worse than what I was before I started the program. I was down to one cane and on a pain patch. I went in thinking I would have 85% less pain for several months. I was in ICU for 7 days instead of 5 because a nurse there stuck me on the commode and left me and I fell off severely hurting my neck and back. I know the ketamine was working but unfortunately with ketamine you must be very careful and not hurt yourself in any way. The nurse blew my whole treatment. The medicine was scary too. I felt paranoid like the nurses were going to kill me and i had to be nice to them. I hallucinated and pulled ivs out of my arms three times. I remember coming in and out of consciousness. I don't remember the first week at home with family members at all and had a hard time trying to figure out what happened to me. It was horrible and I've been bedridden since Sept 20th when this all started. I had the first booster shot Oct 21st and had to stop it as the hallucinations were terrible and I thought I was dying. I could not take Ativan and had a reaction to it so that is why it was so bad then. I can barely get out of bed and now at 47 years have been looking into going to a nursing home. I am trying to stay in my home and have helpers come to my home each day. I know I would never have it done again because it made me so bad and I feel if I didn't fall I would have had a better outcome. Also, the more you sleep the better the ketamine works in your brain. No one ever told me or my family that so I wanted you to know that too. Best of luck with whatever you decide to do.
kathy d

[Reddawn600]

Hi Lori,

I just got home Friday from the 5 day inpatient infusion. I had mine done at the Hospital for Special Surgery and I have never seen such an amazing Dr. and nursing staff in my life. Dr. Richman did my inpatient and he really is an amazing doctor.

I'm not going to lie to you and say the 5 days was easy and the last 2 days were rough, mostly just complete exhaustion, weakness and what felt like withdrawl, very likely from all the meds I was on prior to going on BUT I am so thankful I did it as difficult as it was. I felt fluish, could not seem to regulate my own body temperature and had pain from the lumbar epidurals and multiple brachial plexus injections as my doctor was trying to find the source of my pain. My RSD is on the entire left side of my body and began about 10 years ago, we now think most likely from a fall out of a tree or a simple muscle pull in my neck.

My RSD pain was actually brought down from a 50 out of 10 (I'm sure you all know what I mean) to about a 2. I haven't been on so little medication in years. I know it's not over and I already have boosters scheduled with Dr. Schwartzman within the month but the difference in me in the past few days in nothing short of amazing.

I had never done any drugs in my life and was scared to death of what could happen from the ketamine. I can say for me personally, the hallucinations hit on the 3rd night when we pushed the ketamine to the max for me which was about 60. The hallucinations, paranoia, fear were the worst I've had in my life and were it not for the love and support of family, friends and the amazing care of the nursing staff at HSS, I don't know how I would have made it through. But I did and I am without a doubt so far better off for it.

I know how frightening it can be and how many questions you must have. If you would like to send me a message, please feel free to do so. I will do my best to answer ASAP, but please understand I am still trying to get all my strength back.

Dawn