Ketamine infusion

Laura, hopefully this will work for you this time and perhaps the nasty side effects will be much less than they have before. Lets hope your PM dr will come up with a plan to get your pain under better control.

Take care....Susie

 

   Hello Laura!....I do remember last year, and I think you stopped the program early because of problems with it. Let's hope this will be different for you this time. You have suffered probably more than anyone I know here on the forum...and we feel for you.

      Keep us informed if you can, and good luck!

 *´¨)
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(¸.•´ (¸.•`    SE  

Thanks all of you :)

Jane - I am very sensitive to ketamine, and can only tolerate about 1/2 the dose my doctor uses for most of his patients. I also have anxiety issues around strangers that are enormously amplified in situations where I'm not quite in control - if I'm sedated, having an anaesthetic...and the worst of the bunch is ketamine. It's worse again in busy places, where there is lots of light and noise and so on. I'd requested a private room for that very reason... and my dr likes to have a private room for each of his patients anyway because excessive light/sound/activity can be disturbing for a normal patient on ket. So naturally they put me in a four-bed room. A couple of days in, the other beds were taken and each person had a couple of visitors. Between patients, visitors, nurses, there were about a dozen people in the room, it was extremely noisy - and I went into a full blown panic attack. The nurses ignored me - basically they'd decided I was having a temper tantrum because they weren't finding me a room on my own. I asked if I could at least SIT somewhere quiet... and one of dragged me out on my crutches to the patient lounge, turned off the lights and left me there for three hours. She came in to change the med bag, give me my oral meds - but didn't speak to me, didn't check if I was okay... and nobody came back to fetch me. I tried to find my way back to my room, got lost... I use a w/chair because of my dystonia, and my 'comfortable' walking distance is maybe 10m on a good day. I probably walked 20 times that before I got back (with an IV pole too, mind you). When I got back I was almost passing out with pain - and my nurse just looked at me and said "Oh, you're back... feel better now do you?"...like I was a toddler having a tantrum. When I requested my charted BT meds they refused to give them to me.

Next day when all the activity in the room stirred up again, I could feel myself going the same way. Decided I was sick of it, asked them to call my PM and tell him I wanted to stop the infusion and go home. They wouldn't call him, wouldn't stop or slow the infusion rate. I stopped it myself, they restarted it. They refused to do anything at all until a friend of mine came to visit me and found me hiding under blankets- in tears, in total panic, and completely lost about where I was, who I was. She put her foot down and made them phone him - but even then they didn't tell him there was a problem, just that I wanted to go home. When they replied to my formal complaint, they claimed that they'd tried to contact my doctor several times through the afternoon - but he says it's rubbish :(

It frightens me... and I really hope these nurses have left :(

Good luck with everything, Laura.

Yes, I will second that. I pray and hope Laura that your experience is very different to the last time. Make sure you have a way of contacting your doctor just in case you need him. That might make you more in control. I have only had panic attacks a couple of times and it was the most awful feeling.

You take care and let us know how you are. I will be thinking of you.

Jane

Thanks for that Michael, she must be so nervous. Poor Laura, I hope the end result is worth it and she has less pain.

Jane

Laura, I am keeping you in my thoughts! You are such a sweet person, for you to be going thru this hard time brings meto tears. Thank you so much for the help you have given me!

Big gentle hugs,
Shell

Well...no pain relief yet...but my very favourite nurse is still here and remembers me...and even a lovely gentleman from the kitchen staff who used to come and sit with with me to chat about the books I was reading (we both like crime novels...) came to say hello. No sign of nightmare nurses 1 or 2 ... So it is not all bad. I'm on my own in a 2 bed room...as no private rooms are available. I had a roommate earlier...a teenage girl with CRPS who was meant to be staying for a pain rehab program but decided it wasn't it wasn't for her. At least she's gone home with my email and phone number...so I guess she got something positive out of today...and if I can help her see her way through some mess then I've done some good too.

Plan for now is just to increase very gently...and then my doctor will review me tomorrow. He's running a magnesium infusion at the same time...so I feel like a pin cushion, got drips in both arms...as he's read several theories that it helps with uptake of the ketamine...and wonders if it will help with some of my spasms.

Not sure how often I'll be visiting the board, but I'll try to check in with you all when I can.

Laura

 

         Good  morning Laura!

     I'm glad to hear that things are progressing well for you...and that you are receiving good care with the nurses there.

      Check in when you can, but do take care of yourself first....we will of course be waiting for you when you get done with your treatment.

    Take care,

     SE

Laura, sure sounds better so far compared to the last visit there. I have been given magnesium for cramps in my legs which is in no way related to your situation, but if it works for you that would be awesome. Originally, my dr thought my potassium was low,turned out it was not, thats when he started the magnesium.

Glad that your nurse is still there, its a little comforting to see some faces that you know. Keep us posted whe you feel up to it. Take care....Susie

I hope it helps you! I've had 2 outpatient ketamine infusions and 1 ketamine trigger point injection. I did not like the experience either and did not get any pain relief. It is very scary to be that gone and 1 of my trips was very scary. Luckily my NP stays in the room the whole time, as did a good friend, and they were able to comfort me while my mind was on a loop seeing frightening images. I have read of people having amazing results from it and I hope you are one of those! Praying for you right now.

Hi Laura,
Just wanted to let you know I'm pulling for ya to have a better go at it this time.
Cyber Hugs your way .

D.