Ketamine infusion

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1182
   Posted 8/2/2012 10:48 AM (GMT -7)   
Some of you know this anyway, but my PM is admitting me again on Monday, probably for a week or so, to try another ketamine infusion.

Not sure how it's going to go - as it is where I had the horrible time with nursing staff (formal complaint sort of horrible) whilst on ketamine last year. And ket makes me pretty unwell - even when I have meds to combat the side effects.

I'm not expecting miracles...even my PM is freely admitting that we're clutching at straws. At best I'm probably expecting a slight reduction in pain, but the level of pain I'm in at the moment - and the impact it's having on my mobility and quality of life, I'm happy to take that. I'm also hoping that by having closer access to my PM for a few days in a hospital setting, we might be able to get a better idea of what is going on with my back and legs...and if something needs to be done at least make a plan. There's a certain cruel irony in the fact that I'm now almost 100% reliant on my wheelchair, but sitting is excruciating. Grrrrrrr Grrrrrrrrr Grrrrrrr.

I will try to check in with you all if I can. I'll have my iPad and Internet, just depends on whether I'm coherent enough to read the forums...LOL.

Please keep your fingers crossed that it helps...

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cymbalta, Lorazepam, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

straydog
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Date Joined Feb 2003
Total Posts : 11520
   Posted 8/2/2012 11:01 AM (GMT -7)   
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
Moderator, Chronic Pain Forum & Psoriasis Forum

Snowbunny21
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Date Joined Jan 2010
Total Posts : 3557
   Posted 8/2/2012 11:03 AM (GMT -7)   
I will be praying for you Laura....I remember how awful that experience was for you last year! I hope that they can help you so much better this time through any of the hallucinations or anxiety that comes from that medication.

I really think you are brave for trying again as you said, you guys are trying to do anything and everything to help with your pain.

So just check in when you can but obviously take care of yourself first and we will be praying that it puts a dent in the pain for you.

Hugs (( ))
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 4996
   Posted 8/2/2012 11:09 AM (GMT -7)   
 
   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!
 
 *´¨)
¸.•´¸.•*´¨) ¸.•*¨)
(¸.•´ (¸.`   
SE   wink

Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Fusiongirl
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Date Joined Apr 2012
Total Posts : 596
   Posted 8/2/2012 3:22 PM (GMT -7)   
Laura

I am new here so I am not aware of the problems you had last year. I just hope this hospital stay goes well and the ketamine infusion benefits you. I can only imagine how hard it must be to live like you do. You need some respite, let's hope the ketamine infusion gives you that. You, more than most, deserve it.

Keep in touch Laura, I will be thinking of you.

Jane

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1182
   Posted 8/2/2012 7:54 PM (GMT -7)   
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 :(
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cymbalta, Lorazepam, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

momtofourangels
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Date Joined Apr 2010
Total Posts : 2254
   Posted 8/2/2012 8:30 PM (GMT -7)   
Hi Laura I sure hope it goes a lot better for you this time. I pray that the infusion helps your pain, and that the side affects are minimal. Take care, and let us know how things are going when you can.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

iloveoliver
Regular Member


Date Joined Jun 2012
Total Posts : 156
   Posted 8/3/2012 7:26 AM (GMT -7)   
Good luck with everything, Laura.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4996
   Posted 8/5/2012 9:47 AM (GMT -7)   

 

      I wanted to wish Laura the best of luck as she heads in for treatment today...I believe she is about a day ahead of most of us here in the USA. (Not sure how many hours)

         Take care Laura...and lets hope you have compassionate nurses there to see you through this.

      SE wink


Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Fusiongirl
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Date Joined Apr 2012
Total Posts : 596
   Posted 8/5/2012 10:44 AM (GMT -7)   
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

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 4996
   Posted 8/5/2012 10:56 AM (GMT -7)   
 
     I just visited with her a few min ago..and it's about 2:30am Monday..where she lives...and is struggling just to make it the rest of the night. She goes in at about 10:30am or so.
 
    SE
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 596
   Posted 8/5/2012 12:23 PM (GMT -7)   
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

grandmaroses
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Date Joined Jan 2011
Total Posts : 1355
   Posted 8/5/2012 12:54 PM (GMT -7)   
Laura my heart goes out to you, I will be saying a word on your behalf to our maker. I have suffered a few panic attacks and episodes where others thought I was just having a I want my own way scene so I understand the frustration. Please try to stay calm and hopefully your doctor will check in on you and you will have no issues.
I know you already know coping skills but I will pass one I use on occasion. I close my eyes and imagine I am standing beside a waterfall, that's all the noise. I then splash just a few drops of water on myself just to increase the waterfall theme. Then I start screaming at the top of my voice great what next first I crap the bed now a freakin fever darn infectious diseases can someone come help me sit up straighter I am going to hurl.
Strangely enough people shut up or disappear and I am left alone just the way I like it.
Stay well and strong, I hope everything turns out perfect for you.
Take care
Rose



Insulin Dependant Diabetic, Fibromyalgia, Gerd, IBS, Sleep Apnea, COPD, Spondylolistesis, Diabetic Neuropathy, Fatty Liver, High Cholesterol

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 623
   Posted 8/5/2012 2:41 PM (GMT -7)   
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
DX: CRPS, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2254
   Posted 8/5/2012 6:26 PM (GMT -7)   
Hi Laura I hope the infusion is helping you, and that you're getting the care that you deserve. Take care my friend.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1182
   Posted 8/6/2012 4:48 AM (GMT -7)   
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
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cymbalta, Lorazepam, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

grandmaroses
Veteran Member


Date Joined Jan 2011
Total Posts : 1355
   Posted 8/6/2012 7:57 AM (GMT -7)   
Laura, things ave started off way better than last time, I truly hope and pray your stay will be beneficial to you.
Take care
Rose



Insulin Dependant Diabetic, Fibromyalgia, Gerd, IBS, Sleep Apnea, COPD, Spondylolistesis, Diabetic Neuropathy, Fatty Liver, High Cholesterol

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4996
   Posted 8/6/2012 8:25 AM (GMT -7)   
 
         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 wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 596
   Posted 8/6/2012 9:19 AM (GMT -7)   
Laura

It's all sounding good so far, let's pray it will continue that way. I'm sure it will. Just keep reading and think positively, you will get through this, and hopefully the end result will be good. I will be thinking of you.

(((((hugs))))

Jane

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11520
   Posted 8/6/2012 9:57 AM (GMT -7)   
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
Moderator, Chronic Pain Forum & Psoriasis Forum

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 623
   Posted 8/6/2012 3:30 PM (GMT -7)   
Big gentle hugs to you Laura! If I could jump on a plane right now I sure would. Keep up the great work, just one step at a time!
DX: CRPS, Fibro, CP, DDD, DJD, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS implantation 7/12

KEI_18
Regular Member


Date Joined Jul 2012
Total Posts : 50
   Posted 8/7/2012 1:09 PM (GMT -7)   
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.
Chronic pain secondary to back and shoulder injuries, left humorous pain after bone graft due to a cyst, gastroparesis, migraines, depression, dry eyes
Current meds: Butrans, lamictal, remeron, lunesta, vit d, domperidone, baclofen, nexium, omega 3, PRNS: zomig, imitrex, xanax, dantrolene

We are all influenced by the story we choose to live by

Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 8/7/2012 1:12 PM (GMT -7)   
Thinking of you Laura <3
Posterior cervicothoracic decompression and instrumented fusion (three level fusion) for spondylosis and stenosis with severe radiculopathy.. surgery performed 3/31/11

ACDF... (three level fusion) 4/1/12

Darnme2000
Regular Member


Date Joined Feb 2012
Total Posts : 88
   Posted 8/7/2012 5:03 PM (GMT -7)   
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.
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