Hi everyone, I am 27 yrs and developed rsd this last 2 yrs.
I have it in my face, ears, neck.
I recently had tmj (jaw surgery) and my rsd is very bad.
I go for lidocaine injections, just had a stellete block did not work
Just a month and a half ago my mom and aunt had a screaming match like you could not imagine.
I told them my ears were starting to hurt but they just kept it up.
My ears have always been sensitive because I have had headaches for 6 yrs 24 hrs a day every day. Occipital neuralgia.
Usually if I have an episode with my ears it goes away in a day, but not this time.
It's a deep stabbing pain in the ears and also a pulse sound.
This has just made my neck , face and head worse.
My eyes are killing me. It feels like everything is clogged and wants to explode.
I just want to die. I cannot take this pain anymore.
I went for a ketamine infusion 30mgs when it happened no luck
Then went about 2 weeks after that one my doc upped it to 60mgs no luck.
This week he is going to up it to 120mgs. He does it in his office.
I am hoping it gives me some relief, but not counting on it.
Has anyone had ketamine for rsd?
Has anyone had the one where they put you in the hosp and do the 4 or 5 day protocol?
Would the hospital one give better results.
I am wondering if I go for the one in the office and I go back and have my doc do more days apart would that help?
I just cannot take the pain anymore.
Thanks for listening.
Any feedback would be great
Ashley

Ashley,

I just want to say how sorry I am to hear what you are going through. My RSD started when I was 25 too...though I am 29 now. Two years ago...when I was 27...my RSD got much worse and spread. There were many months where I just got worse and worse and worse. It seemed like every day I had a new symptom or the pain spread to a new area. It was very discouraging. I was bounced around from one doc to the next and told by my primary care doctor that I would need to get used to life in the wheel chair. Life was just a nightmare.

Things were just about as bad as they could be for me...but then I changed doctors and things got better. I can't say that my RSD journey is a typical one...I know my choice of doctors and treatments is not standard. I got off all meds, went through physical therapy at home, and through sheer force of will have taken my life back. Still have pain every day...but things have gotten better and I am happy now.

I have not had ketamine infusions, so I am sorry that I cannot give any advice about that. Hopefully someone else can jump in with their experiences on that. I just wanted to say that things can get better and not to give up hope. You've found a great site here with lots of great people. I don't know what I would have done without this forum...the people here have literally saved my life. I have learned so much from everyone here and everything I have learned has helped me in my journey to get to where I am today.

Take care of yourself and ask lots of questions on here. No two experiences are the same and everyone responds differently to different treatments...but that doesn't mean we can't learn from other's stories. Even just knowing you are not alone is a HUGE help...or at least it was for me.

so sorry you have been through so much. You are a real fighter. Thank you for the encouraging words. I will keep in touch. Ashley

I have had ketmine infusions, I have full body and internal rsd I went through every treatment and seen 191 doctors in 7 states and nothing changed until I had ketmine. I did the in patient and the 10 everyday out patient then it went to 2 times a week for 4 weeks then once a week for a year usually its only for 4 weeks but I was so bad I needed i longer then it went to once evry 3 weeks now I only get them when Iam in a flare. but I also have ketamine nassal spray and lossanges which are a great help to me from going into flares. Iam sorry what your going through I too was at many points I just wanted to die as I couldnt walk, use my hands o f=eat so need feeding tubes I was hospitalized for 5 months before I was airvaced to cleveland.
Stay strong!

Samantha

Thanks Samantha, You have been through so much also. I can't imagine what you went through. I am glad you are feeling better. So it seems like doing the in-patient ketamine might have better results than what my doctor is doing. I am going to see him this Thursday for the 120 mgs. Ashley Thanks for answering me back.

Ashley, check out the Ketamine Klub for CRPS/RSD Patients on Facebook. It has a comprehensive database of articles all about ketamine treatments. I also suggest the RSDSA website, they have a wonderful medical archives database.

Good luck. Ketamine has given me my life back. It is generally best to start with a "protocol," such as the 10 day outpatient or 5 day inpatient. Haphazard infusions of varying amounts are not as likely to yield the best long term benefits.

XOXO Sandy

thank you Sandy very helpful Ashley

Hi,
I also had ketamine inpatient for five days back in 2003. As soon as the medication stopped, I didn't seem any better. I'm not sure if I should try ketamine again. Did you have a good response with your first inpatient treatment? Did you have a reduction in pain? How long did the reduction last?

Thank you so much!

Hi Ashely, I am so sorry you are suffering so. This is a wonderful supportive group of fellow RSDers. I have not done ketamine, but know many have had good results. I had RSD before being diagnosed and it is full body. I also have severe headaches 24/7 and know how hard it is to deal with that. Especially since you have such severe symptoms in your head area, please be cautious if you were to need dental care. I take antibiotics before any procedure, even cleaning, and also have the laughing gas to relax me before dental work. Also before any blood draw, I have them use a butterfly needle as it is smaller and less invasive.
You will find much comfort and support here. Please let us know how your treatments are coming and if you find relief. loretta

ketamine is not a cure and is an experimental drug that trips you out,stops your brain functions from the normal routine,no doubt it will stop the pain for a while but no one knows what damage to the brain or long term effects are!Ive suffered with crps for 3 years now and have learnt to deal with my pain,but im fragile and can't do alot,i've just had the ketamine treatment in France and it was not pleasent as they put me on a very high dosage for 4 hours,if I was you I'd research the drug a little more before allowing anyone to do that to you,all the best and good luck