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CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/13/2011 1:00 PM (GMT -6)   
Hi everyone,

Just getting my things together then I'll be off this morning to start my ketamine infusion. Very nervous...I don't handle ketamine well and I am desperate for this to work. Will keep you all posted if I can.

*hugs* to all of you

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/13/2011 1:18 PM (GMT -6)   
Will be saying some prayers for you...Just post when you can...but rest up as much as possible afterwards...

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
 
 

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/13/2011 2:13 PM (GMT -6)   
Laura....
 
I've had a rough week so I'm trying to get caught up here....but I hope that the infusion goes well and helps you in every way possible.  Post when you can, and know you'll be in our thoughts and prayers.
 
Hugs.... --Tina
Pain Issues: DDD; fibromyalgia; migraines; carpal tunnel syndrome; tendonitis
Multiple Health Issues: Disabled due to POTS (heart condition); dysautonomia (dysfunction of the nervous system); hypothyroidism; adrenal insufficiency; chronic hypertension; chronic fatigue; sleep apnea; anemia; Vitamin D deficiency; etc etc
Meds: Too many to list....
Personal: Mom to 6 boys and twins girls

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 6/14/2011 4:26 AM (GMT -6)   
You will be in my thoughts and prayers.

Rest up as much as possible and post when you have enough strengrh.

Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/14/2011 6:48 AM (GMT -6)   
 
 
          Morning Laura!
 
                I hope everything is going you're way today! That is a very powerful drug, and I don't know of too many patients taking it. Lets hope it gives you some relief. Are they thinking long term relief with it?
 
      Take care,
 
         SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 6/14/2011 9:28 AM (GMT -6)   
Hi Laura, just popping in to wish you all the luck in the world, I am sorry I have no idea what ketamine is.  If you get a chance or anyone else who knows what it is, I cant remember hearing about it.  I think I have heard the name, but I though It is a animal tranquitlizer. 
 
I think I watch to much CSI.  Also Law and Order. I need to spend more time reading, but its true, it am addicted to these shows.
 
Good luck, will be praying for you.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16274
   Posted 6/14/2011 10:33 AM (GMT -6)   
Laura, I am hoping that this will bring you the relief you are so badly needing. Please let us know how you are doing when you are up to it.

Take care of yourself.
Moderator Chronic Pain Forum

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/14/2011 11:50 PM (GMT -6)   
Hi Laura You'll be in my thoughts. I sure hope you get the relief that you are looking for. Take care and keep us updated how you are doing when you can. I hope you're having a low pain night and you are getting good sleep.

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 : 1276
   Posted 6/15/2011 5:47 AM (GMT -6)   
Thanks all...doing it tough so far, though that's as much down to poor nursing staff as anything...written complaints, here we come :(

For starters, I'd requested in advance that I have a private room - I've got anxiety issues relating to hospitals and to strangers, so I have great difficulty being in a shared room... especially on ketamine. Spoke to hospital last week and that was all okay, no problem. Came in yesterday - all private rooms full, no can do. Into a 4-bed room with one other woman. Not happy, but can just about cope with that. Not all the visitors though, or the other person who has come in, plus all her visitors...anything up to 6-8 strangers in 'my' space is beyond too much. I've got part of my brain bombed with the ketamine, my body is trying to do a flight/fight response and the result isn't good. I desperately want/need sleep, but my body won't let me relax.

The nurse who admitted me yesterday morning wouldn't listen to a thing I said, kept touching my bad arm - what is it that goes through people's heads? "Oh, that looks sore, I think I'll poke it?" Why, Why WHY? Grrrr. She got an IV in initially but refused to believe it had blown...by the time I got another nurse to check it my whole wrist was swollen and the vein couldn't be saved. Thankfully my PM got a good one in without causing me any pain, but he wasn't here to do that til yesterday evening so infusion couldn't start until last night. Not doing anything yet except making me dizzy...already hit the ground once as a result :(

Keep those positive thoughts coming.

*gentle hugs* to all of you
Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/15/2011 7:44 AM (GMT -6)   
 
 
       Good morning Laura!
 
             Sorry...you had such a tough day yesterday....hopefully today will be a better one for you.
 
    Wishing you the best as can be....and offering prayers to you of healing!
 
       Take care,
 
  SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/15/2011 4:10 PM (GMT -6)   
Hi Laura I'm so sorry that they didn't listen to you as far as having a single bed room. That's not good. I hope you're able to relax, and get some rest. I'm also sending you healing wishes and lots of soft hugs. Take care.

love and hugs
Loretta

ps. I hate hard headed nurses.
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 : 1276
   Posted Yesterday 5:41 AM (GMT -6)   
Home early...had a horrible 'trip' and bad nurses were the end of it.

I started getting really spaced out and panicky yesterday afternoon - every little sound and movement was setting me off into shaking, sweating spasms - really not good in a room with three other people, each with 2-3 visitors a piece. Every time somebody spoke it was as though they were yelling into megaphones wired directly into my skull.
 
 A nurse took me out of the room - I had no idea where I was going, where she was taking me - all my things were left by my bed - and she left me in a dark room by myself to settle down. That was about 6pm. about 8:30pm a nurse came in, shoved my oral meds at me and went out again. The nurse who'd taken me out had dragged me out with my crutches, not my wheelchair and I'd only just made it. about 9pm I was feeling a bit better but needed the toilet and needed to find my way back to my room...and couldn't.
 
 A nurse from another part of the hospital eventually helped me find my way, by which time I was so exhausted and so sore I was shaking. 'My' nurse came back just as I was getting back into my bed and just said "Oh, you're back...are you feeling better now?" as though I was a little kid having had a tantrum. When I said that I needed my breakthrough meds (usually 5-10mg oxycodone), she offered me paracetamol.

I spent all this morning feeling worse and worse - more spacey, more panicked - and about 2pm I rang for the nurse. I told her that I couldn't cope and asked her to phone my doctor about stopping the infusion and discharging me because I couldn't cope with the ketamine OR the hospital any longer. She said something about going to find the nurse in charge and didn't come back. Rang again about 15 minutes later because I was getting worse.
 
Am told that they are going to have a private room ready for me soon. Tell them I don't want a private room, I want them to call my doctor and get permission to stop the infusion. I've had enough. Am promptly ignored. By this time so spaced out and so terrified of every sound and movement that I'm hiding under my blankets and shaking/sweating like crazy.
 
Had just enough left in my mind to remember that a friend was coming to visit about 4:30 so told her what was going on. She called my doctor's rooms herself and spoke to his secretary, then helped me to call again when she got to the hospital... 3 1/2 hours after I'd first asked the nurses to call him. As soon as she fronted them up, told them that calls had been put in to him, they'd got onto him within 5 minutes, stopped the drugs and were organising my discharge.
 
She got me out of there...couldn't stop shaking, even wrapped in blankets in her car. Been home about 3 hours now, still in blankets, still shaking. I wish I had the energy to make a complaint against these nurses :( At least my doctor knows what is going on, but I hope they don't do this to the next person who can't stand up for themselves.
 
 
 
(edited for easier reading) Thanks! SE

Post Edited By Moderator (Screaming Eagle) : 6/17/2011 7:19:34 AM (GMT-6)


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted Yesterday 7:14 AM (GMT -6)   
 
       Boy Howdy!....it sounds like you had a terrible time of it to say the least!
 
           I'm so sorry you went through this! shakehead   Most hospitals have a patient advocate you can call. Do you know if there was one available to you? When my wife had her recent surgery...they listed the charge nurse, and the patient advocate nurses numbers on the wall, where she could see them.
 
     Thinking about the treatment of the "Ketamine"...I can see where you might have not been in the frame of mind to think about the "Advocate" program. The anxiety should have been listed in you're paperwork, so that the nurses would have known this. If it was, then it is a sad shame, that they took these actions. shakehead
 
 Did you not have family there to look after you? I just can't help but think that you maybe should file some sort of complaint, and your Dr should have been furious over this.
 
    Take care...and I truly hope that being home now, will help settle you down...and that you get to feeling better very soon.
 
      Best wishes sincerely!
 
    SE
 
        
    
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted Yesterday 9:06 AM (GMT -6)   
Laura,
 
So sorry to hear of your experience... I've had horrible hospital experiences.....so I do understand how infuriating, scary, etc. a bad experience can be.  Especially when you are on a medication that leaves you not in control.  I'm so sorry.
 
I hope you are feel better soon, Laura.  Many thoughts and prayers.
 
--Tina

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted Yesterday 10:34 AM (GMT -6)   
Hi Laura...I am so sorry to hear about your experience...I agree with the others to file a complaint and talk with your Dr. about everything that happened...

Did they not give you Ativan along with the infusion? This is the standard to offset those side effects of dysphoria or hallucinations that are known to happen with Ketamine...The Dr. should have ordered this along with the Ketamine as part of the entire treatment...

I would be asking him about this to see what went wrong...did he forget to do this...or did the nurses read the notes wrong...etc...

And yes...it's too late now...but having the patient advocates name/number to work with you from the very start of getting to the hospital if you don't have any family or friends to be there with you the whole time and help when you can't speak up for yourself...

Glad you are home and hope that you will be able to get some rest...and then in a week or so...regroup and talk with your Dr. about everything that happened and where he wants you to go from here...

Try to rest up...stay snuggled in those blankets....we are sending you some big 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
 
 

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted Yesterday 11:48 AM (GMT -6)   
Hi SB - I don't know what he does for his other patients, but benzodiazepines aren't good for me - I've got really bad paradoxical side effects with them. Apparently it's incredibly unusual for a 'normal' person to experience them - it's usually with long term or high dosages, but my GP tried giving me temazepam and diazepam at various times to help me sleep and I was so anxious and wired on them that I didn't sleep for three days. The last anaesthetist who tried giving me midaz to sedate me before surgery ended up with a black eye.

Still haven't slept. Realised too that I've list 7kg since Tuesday. I knew I hadn't really eaten anything. Now that my head is clearer, I don't know if I can remember drinking much either :(

SE - thanks for editing my post. I really should know better, especially as I am one who can't read long runs of text. And yep - my anxiety is well documented in my notes - I've been there four times before with no problems - and my doctor's secretary informed the hospital when she rang though the admission. My low ketamine tolerance is also well documented in my notes.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted Yesterday 12:31 PM (GMT -6)   
 
    Hey...Laura....dont ever worry about me editing your post if you see it done...I knew you wern't in a good place....so no strikes against you. wink ...I just wanted to make sure the members could read it...
 
          You take care now...OK!
 
 SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted Yesterday 12:49 PM (GMT -6)   
Laura...thanks for posting more...

If your Dr. knew that you couldn't take Ativan..did he discuss all of this with you before the infusion? That those side effects you experienced are fairly typical with Ketamine and that you won't have anything to help with hallucinations or dysphoria? That the nurses should have known this to help more....as well as having someone like family to be with you at all times to
help calm you down and not be alone...

Then at least knowing all of this you would have made the decision whether it was worth trying the infusions and not having Ativan like most people...but maybe I misunderstood and you were aware this could happen...still is awful:(

I know you are weary and tired...but please stay hydrated with water...it's very important to flush everything out...or try to at least eat a little something to not make yourself worse...

There is this great drink VitaCoco...it's got a great amount of healthy electrolytes, water, and potassium....I get mine at WholeFoods...but it's at any health store....you can store them in the cabinet and then keep some in the fridge when needed...

I was extremely ill with food poisoning back a year ago...could not hold literally anything down...and either end:(....this was when we had the 2nd largest snow storm in history...so I was stuck...sleeping on the bathroom floor for 2 days....but couldn't eat for about a week...I slowly would sip this drink every 20 minutes...one tiny sip at a time....and at least it kept me out of the hospital as that is what they would do anyway to hydrate me...

Because some people think..ohh..Gatorarde...or something like that...but sugar is really bad for you when sick...

So now I recommend this to others and I always keep it on hand...it's got a few 'flavors'..

Anyway...just a thought as well as for others to write down if they want...

I am praying for you...I am sure you are very disappointed...try to get some more rest...

Hugs (( ))

Post Edited (Snowbunny21) : 6/17/2011 12:54:08 PM (GMT-6)


momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted Yesterday 3:24 PM (GMT -6)   
Hi Laura I'm so sorry that you had such a bad time at the hospital. That was uncalled for. I'm so glad that you are home now. Rest up, and please keep yourself hydrated. You sure don't want that on top of everything else.

I agree with the others, that I would put in a complaint against those nurses. I sure hope that you feel better really soon. Take care. I hope your pain isn't too awful bad.

love and lots of soft 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 : 1276
   Posted Yesterday 4:15 PM (GMT -6)   
Thanks so much for the concerns and the hugs all of you *hugs back* SB - yeah,I'm well aware of the risks. I can't work but I'm a vet, so I've used ketamine from the other end of the syringe as well! This was totally unexpected for me though - this was my fourth infusion and usually I just get a bit dizzy and vomit, and regular zofran helps to control the worst of it.

I'm not familiar with the electrolyte brand you're talking about (I live in Australia) but we always have sachets in the cupboard :)
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted Yesterday 4:53 PM (GMT -6)   
Ohh...I am sorry for not knowing it was your 4th infusion...I still think the nurses and Dr. didn't do you justice by preparing better for you because of you not having the Ativan...you poor thing!...

And...now I've learned you aren't in the US!.....so yes..have no clue if it's over there or not..but I"m glad you have 'sachets'.. (even though I have no idea what that is except for that being a small scented bag we use to freshen our closet our a chest of drawers...LOL...

Thank you again for filling us in about everything...I really hope you feel better enough soon to eat something...and get some more rest this weekend...maybe snuggle up and watch a good movie to take your mind off things!!

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
 
 

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted Today 11:15 PM (GMT -6)   
Unfortunately, this story seems all too common, which tells me that some hospitals do not properly train their staff in patient management. Its seems its all about student education, but maybe they need to start focusing more on the CARE aspect and ingraining that into newer nurses and PAs because its seems CARE is not at all emphasized with the newer influx of nurses and PAs, whereas nurses, CPRNs, and PAs that have been in the business of patient care for a while seem to grasp the concept of PATIENT FIRST much better. This is obviously more than pain control but also the overall comfort and the ability to empathize as well as having staff that are dedicated to certain areas of treatment. Ok, ok, I'm ranting and i'll stop, but CRPS I can both sympathize and empahize with your situation.

about 2 months ago had an incident where I was admitted to the hospital in which the flair up in my back became so bad I could stand up out of bed on my own (I called out of work lying on the floor because I couldn't get up "Ummmm, yeah boss, Ummm I'm fairly sure I won't be making it to work because I literally can't get out of bed". Had to laugh about it latter because I made it sound like I was just lazy, hehe). They did treat me very well, but it wasn't until they conferred with my PM and actually did an internet search on the medication I was taking that they finally treated me. I can understand needing to confer with my PM but in my opinion, I honestly think had I not had my doctors information on hand, that they would have just "ignored" my pain and thought I was over-exagerating. Ofcourse once they found out I was a pain patient, I was treated much differently and their attitude towards me changed from suspicious to CARE. They ended up injecting me with hydromorphone and giving me a handful of steriods and that got me walking again. I have a feeling if they hadn't been able to verify my condition through my doctor they would have just given me a T#3 and told "there's nothing more we can do".

Its not a bad thing that doctors and their staff are so untrusting, but it can really be a time hinderance and it certainly doesn't help our attitudes towards doctors either. The other side is as I mentioned, sometimes they are both untrusting and uncaring, which is a combination for disaster :/
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures helped for months, but pain is up and im having the procedure done again. Currently on 75 mgs of Nucynta (tapentadol - A MOR + NRI) 2 to 3 time per day and Soma 350 as needed.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/19/2011 3:29 AM (GMT -6)   
Salt, I'm sorry you've had such bad experiences too.

I'm more angry than every now. I emailed my doctor yesterday morning because I don't actually see him for a little while and I wanted to give him a run-down of what happened, plus let him know my intentions about making a formal complaint to the hospital. He emailed back this morning and was shocked to learn what had happened - the only contact he'd had from the nursing staff was a brief call late Friday to tell him that I wanted to discharge myself - nothing about the dysphoria or my general distress. The more my head clears, the more I come to realise that they went against almost every protocol for the ketamine infusions.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.
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