I was NOT cut off all (or any) of my medication by my pain specialist. He felt that I had developed hyperalgesia because of the amount of meds I was on - but it was up to me ( and my marvellously supportive GP) to cut down my dosage, which I WANTED to do after lowering my pain levels (or how my brain perceived them ) after the Ketamine infusions. I had cut my medication by 2/3rd's within 2 months of 1st infusion.
Talk to your Pain Specialist & GP about your fears - they are there to help you feel better.
You have my VERY best wishes for an outcome as successful as mine.
My thoughts & prayers are with you - I'm sure you will feel better afterwards. Go in with a positive outlook & use relaxation/meditation CD's to help you - they work well for me.
Unfortunately, my pain specialist works for the hospital I used to work for and he has treated me differently from the start because I'm not one of his patients that line up for steroid injections every month or so then go back to work. I did work for 2 years after my injury on full duties with a 5 kilo limit then my 2 disc's burst and I could no longer sit in a car. Then I had a double spinal fusion but after it, one leg was unable to move for 24 hrs however, my neuro-surgeon said he didn't touch my nerves..hmmmmm....im not so sure of that....I'm sure he did the best job he could but I wasn't right and I've gone downhill since and I seem to be getting worse.....The neurologist said I think you have arachnoiditis and there's nothing I can do for you. My go says, it's nerve damage!
I just want some quality of life and to be the independent person I once was! That's all...
And yes, I will be going in with a positive outlook and I do have lots of meditation cd's on my iPod.
I would love to be able to go back to work but it's too late now, the 2 years are up that I had to do that so that is out of the question and I could never do that in this condition because I'm in too much pain and I can't sit nor wear shoes because of the nerve damage...I absolutely loved my job, I did! I didn't want it to end at all!
He did say to me I'm going to take you off everything straight away so that's why I'm so very worried about it. And that's why I will leave the hospital if I'm treated differently and in withdrawal without reducing me, I'm adamant about that. I would rather travel 2 hrs to see another pain specialist if this is the case. I did ask to be referred to Professor Cousins about a year ago but he said No, he is never in the country and he was upset but I just wanted the best care available seeing he didn't seem to care too much about me and he only treated like I'm a whinger....but I bet if he felt the way I do he wouldn't even get out of bed!!!
I loved my job and pain forced me out, I totally get it is more than a drop in income, it is a total change of lifestyle and loss of colleagues and instant isolation. I struggle to study part-time now (study shuts Centrelink up) and currently have understanding course co-ordinator, but ultimately the assignments still need doing.
There is lots posted in here on Ketamine and it might be worth trawling through them. I have not been in the position to afford Ketamine, so I can't comment on it from a personal perspective, but I completely agree with you about the "isn't me" theory. If the doc was no longer able to practice (and didn't have insurance to maintain quality of life/and had to move into 'affordable housing,') or a close member of the family was in chronic pain, I think their 'bedside manner' and attitude would be totally different.
South Australia has two pain clinics that service SA and NT. They both have horrendous waiting lists. I was shocked by the recent ego of the pain specialist I see privately which was: Either I find a way to pay his horrendous fees, or go elsewhere, fully knowing "elsewhere" has long waiting lists, even in the private sector (whose fees are no better.) Doc knows I am trapped by a system I can't afford and if I am to get pain meds as the Government dictates to GPs - they are not able to prescribe long term without a specialist's direction. i.e.: doc and meds or no doc and no meds. Doc knows this.
You mention Prof Cousins, I assume you are in NSW. He is likely to spend most of his time 'frequent flying' to some conference or professional engagement or even a drug company perk. He probably has his 'caring' speech on a repeat loop. With what you wrote, I don't think he would be very caring, rather selective of patients who he can 'write up.' Be grateful you are too 'pedestrian,' for his lack of care.
For what it is worth, I would also be concerned about stopping meds suddenly. Maybe some Ketamine recipients might offer you some experience of this. I live at home without help on call, especially for withdrawal symptoms, which I have suffered through many times. It is not something I would recommend. Some meds withdrawals kick in within a few hours; others may take a few days, and last for what seems an eternity.
I think your caution is warranted.
Once I could laugh with everyone
Once I could see the good to me
Holding the world inside
Now the world is grey to me
Nobody can see you gotta believe it
Oh oh the night comes down
And I get afraid of losing my way
Oh oh the night comes down
And it’s dark again
“The Night Comes Down” Queen
I'm waiting for a pain management specialist appointment in July, where Ketamine infusions with the goal of reducing my base levels of the amount of pain medications I am taking can be reduced.
I would be extremely interested in hearing about the research you did, and why you decided to go as an outpatient, longer process than an inpatient 10 or so day treatment. Is there some information you can pass on to me so I can become more involved before I see the specialist.
I have been seeing 'interventional pain doctors' for some time for things such as injections, blocks, nerve ablations etc.. and after my current treatment rounds of Prolotherapy if it doesn't help to reduce my pain they are talking about a Stimulator Device. I want to try the Ketamine infusions first before having to have a surgery to insert a permanent foreign body in me.
Thanks so much if you can help with additional information on the type of delivery system for the infusions. Plus anything at all you believe would be good info to pass on to a newbie
It was an infusion via a machine into the vein. And it was supposed to be a 7 day infusion but the pain specialist stopped it because I wasn't getting pain relief and he decided to stop my meds and that wasn't acceptable to me seeing I was still on a 7-8 out of 10 on the pain scale.
Some people are allowed to stay on their meds some pain Drs don't allow this.
Do all the research you can...look around this site because there are lots of info on ketamine.
I'm sorry I'm not up to writing anymore tonight because I'm still too distressed. And yes I am a candidate for the stim too but I was trying this first.
Best of luck that it gives you the relief you need, I just wish it would've reduced my pain level but it didn't however, there is another person here getting fantastic results so it seems it's hit or miss depending on the person.
And I had absolutely no nasty side effects at all so I think I could've gone up the the max dose of 20mg but the dr who admitted me said we never go that high here but my research said other hospitals do go that high...maybe higher doses might've given me the pain relief I needed but they decided to pull the plug after I became distressed about being cut off my meds.