I have reached a point with my pain meds where I can’t take any more 'cos I sleep too much and as I nod off have the strangest experiences which must be some sort of drug induced hallucinating! My Macmillan doctor has been trying different things but the pain goes on increasing, or the drugs aren’t working. She has mentioned to me about trying Ketamine and I wondered if any of have experience of this one? One of the things that worries me is how much drugs mask pain that you need to know about as an early warning of things going wrong.
Hi Dawn,
Bumping this up for you, as l know very little of Ketamine, but what l understand is that it causes powerful hallucinations! and bladder infections, as l say l know very little and what l do know may be wrong. Hopefully someone will come along with correct information for you.
Yes it is always a worry that drugs mask pain, everything is a constant worry. But if someone has tried it and it works, Hey presto!
Love and Hugs coming your way
Sandra xxx
Hi Dawn,
I’m really sorry that your pain is not being controlled again. I have a bit of experience using ketamine in my time as a palliative care nurse for people with uncontrollable neuropathic pain- put in a syringe driver and carefully increased, it can be very effective. Have never heard of it causing bladder infections, and don’t know how it could do it, but can cause hallucinations- but would presumably be started at a very low dose and titrated up according to response. Have you tried methodone yet? I also wonder if using a different route other than oral eg through a syringe driver may help with pain control and lessen the sleepiness as you would be getting a small dose every hour rather than the peaks and troughs you get with tablets. Sorry if you have heard/ tried all this before. I really hope you find something that helps soon
love Nicky
Really sorry to hear that your pains are so bad, sending you lots of love and hugs, and hoping that they can get the drugs sorted,and you can get some relief.
Hi Dawn, Im sorry to hear your pain are so bad. Its your posts that have given me so much hope for this damn disease and you always support everyone when they have problems so I hope your MacMillan nurse can sort out the right meds for you now.
Hope your soon getting some relief and I will add you to my prayers tonight.
Like Ann and others I know how much comfort and support you have given to us in your posts. I hope that you are more comfortable by now and the meds are doing the trick.
Hi Dawn, I was sorry to read that your pain control is not working again. I don’t know what to suggest as I know that you have problems tolerating some drugs. If there is anything we can do for you or find out for you please just ask as I know even the effort of looking up information can be difficult if you are not well. PM if I can help in any way. If they can get the pain under control it just makes things so much easier to deal with. I know I have been in the aame boat in the past and just how low it can make you feel. Hugs coming your way. Love Val
LIKE ALL THE OTHERS SAY IM SORRY YOUR IN SO MUCH PAIN. I TAKE IT YOUR ALREADY ON MORPHINE? I FEEL VERY LUCKY COS IM PAIN FREE, COS I KNOW ITS THAT, THAT CAN MAKE US FEEL SO LOW, AND YOUR NORMALLY SO POSITIVE. ITS A DIFFERENT THING BUT MY MOTHER IN LAW AS BEING SUFFERING WITH ACUTE PAIN WITH SOMETHING ELSE, AND THE DOC AS GIVEN HER SOME PAIN RELIEF PATCHES THAT WORK FOR A FEW DAYS, DONT KNOW WHAT THEY ARE CALLED BUT SOUND GOOD. BUT YOUR PAIN IS PROBELY SO SCATTERED EVERYWHERE, YOUD BE LIKE A PATCHWORK QUILT. (SORRY ABOUT HUMOUR JUST TRYING TO MAKE SITUATION LIGHTER, GOD BLESS IM GOING TO GO AND PRAY FOR YOU SHORTLY. X
Hi Dawn, I do hope you get this sorted out very soon, and get the right type and balance with your pain meds. I can well understand your concerns re drugs masking the underlying pain, as I’d feel the same as you about that. Sorry I can’t offer advice on the matter but I’m wishing you well with it. Hope some more ladies can offer their views / experiences on this soon.
scottiedog xxx
Just come onto forums after a week away. Can’t help either I’m afraid but also wanted to give you a cyberhug, sorry you’re struggling, and I do hope you get on top of it soon, as I know that when you’re in pain it colours everything.
Thought I would update you on my experience with ketamine. The macmillan doctor suggested starting at a low dose of 10mg 4x a day. I went into the Day Centre for the first days dosage so that any side effects could be monitored. I was started on a low dose (very bitter liquid) and after about 30mins started to feel quite unwell - this kept up for about 2hrs coming in waves and the need to go to the loo a few times but not diarrhoea (dont want to give too much info LOL). When it came to time for the next dose at 2p.m. I thought long and hard and decided I did not want to continue. I know sometimes our bodies react to a new drug and it might just be until it gets used to the new drug but I just did not want to feel like that again. The doctor & nurses were so supportive and I felt under no pressure at all. So now it is back to the drawingboard to find something that will control the pain a bit better. I haven’t tried gabapentin before but have had pregabalin so although they are similar may be better as it is more flexible. So I can start at a low dose and increase it slowly.
Hi Dawn, I have been on Gabapentin for quite a long time now and have found it a great painkiller. If you need any info just let me know. I have written to you on the other site as I was wondering how you were doing painwise. Sorry to hear about the bad episode that you had with the other medication. I had no such problems with Gabapentin so fingers crossed it will do the job for you just as well. Think of you often. LOve Val XX
Sorry to hear that the ketamine didn’t work and made you feel bad, hope you’re feeling a bit better now. I have been thinking of you and hope that the pain relief gets sorted asap!
Hi Dawn. I am so sorry to read that you are in so much pain, and like the rest of the ladies hope that the gabapentin will work better. You are such a support to others on the other threads. Please let us know how you get on. Sending you lots of love and hugs. Roz xxxx
Hi Dawn,
What sort of pain are you getting? Is it bone pain, muscle pain, nerve pain or some other? I get very bad nerve pain in my thighs (due to nerve damage from the secondaries) and am on Pregabalin. It keeps it at bay, but has not got rid of it completely. Wish I could help you more. What a bugger this disease is.
Isobel.
I have extensive damage to my spine with 2ndaries and thought for the last 2 years the pain was down to that. Comparing MRI scans more recently with a gap of a year between two showed that in fact I had a soft mass tumour growing alongside my lower spine - involving the nerves that come out at L2. A great deal of the pain is nerve pain affecting the area around my lower back and down my right thigh. It would be great if there was a ‘one size fits all’ when it comes to pain meds - but it seems we are all different!!! I am on 70mgs oxycontin day & night plus 20-30mls oxynorm during the day, and amitriptyline at night, plus fentanyl actiq lozenges for breakthru pain as well. I have tried pregabalin but with that & oxycontin I get too sleepy. I’m going to give gabapentin a try, although it is very similar to pregabalin I think it is a bit more flexible in that I can start off with low dosage and work up. It does sound as if we have similar pain problem. Are you only on pregabalin? Have you had rads to your spine? I have had rads to the lower spine on two occasions 2 years apart but didn’t find it helped with the pain. I am hoping it has killed off the tumour but have just had another mri scan to check again. It is indeed a bugger!
Hi again Dawn,
I have secondaries in my spine as well. T11 fractured and caused spinal cord compression, due to them and I had to have surgery, to stabilize my spine. So I have a ‘scaffold’ (neurosurgeon’s word, not mine!) of metal, to brace my spine. I had radiotherapy to this area, which apparently has dealt with it. The pain lessened after this, but has taken a while. I do however have slight progression at T3 and T10, for which I have started Herceptin - only just discovered very recently, I am Her 2 positive.
As for pain meds, I take one Cocodamol and one Paracetamol, three times a day, as well as the Pregabalin, twice a day. I have managed to reduce my pain meds, but it has taken since November - when I had the surgery and January - when I had the rads. When I get up in the morning, I have no pain at all, but because I have to wait a while, before I can take painkillers, due to being on Bisphosphonates - I start getting aches etc. After I’ve taken my painkillers and when I really start moving around, the pain disappears. Also after my physio exercise class, I feel really great and have no pain at all throughout the day. The moral of the story here, is to do more exercise!!
Well, this has turned into a blog. I hope your scan gives you good news.
Isobel
Sorry to hear that Ketamine didn’t work for you, fingers crossed for Gaberpentin. I started on Gaberpentin a couple of weeks ago and have had no side effects apart from mild constipation. I am on 100mg x 3 per day. I wish I could say it has been successful but unfortunately I am still in a lot of pain and a burning sensation when I stand but mostly painfree when sitting down, but this has been exacerbated since I skidded on wet paving yesterday and seem to have jarred something! Perhaps I need the dosage increased. I am awaiting an MRI scan to find out whats going on.