As stated, Freida (my mom) is now on 2 patches, the neurontin and morphine. she is hating this now. she keeps describing her state as an out of body experience. she can hardly walk down the hallway without bouncing from wall to wall.

i know that nobody here is a Dr (or maybe there is) but any opinions? Should we go back to one patch? or is there another medication that can control nerve pain? I really think its the neurontin thats making her so loopy and she absolutely hates it

Im going to call her oncologist in a bit so just wanted some alternative ideas to run by him before we speak

Hi Emily

As an ex nurse (a very long time ago) I can tell you that, yes, there are other drugs that are good for nerve pain. However, it is very complicated and the person or team who helps you need to consider a lot of things before making decisions.

For this reason I would suggest you go straight to the doctor or pain management team who will have some ideas.

The doctors may think a different dose will help or a different medicine or combination of medicines. They also need to know about your Mother's other health conditions such as blood pressure or diabetes and even illnesses she has had in the past like depression or migraine in order to make the best decisions. Some medicines can't be mixed together whilst some shouldn't be used in people with certain health conditions.

Sometimes even age will have an effect how drugs affect people. Sometimes the medicine's bad effects only last for a few days and lessen or go away once the body gets used to it.

I would get on the phone to your Doctor for help as the best person to deal with this is your doctor in consultation with your Mother and yourself.

A word of warning: Neurontin is usually withdrawn slowly unless the dose is very low or the patient hasn't been on it very long, so your Mother should not stop taking it without advice from a qualified professional first.

I know this isn't exactly what you wanted to hear but the faster you get to the doctor the sooner you can start on fixing the problem.

Good luck

Hi again Emily

I have just found your other posts re your Mum and realised my own previous post may be a bit "suck eggs" and be (mis)interpreted as patronising. Unintended so please accept my apology - was just trying to let you know there are options. As our own cancer co-ordinator is fond of saying "unless you are a masochist, there is no good reason to be in pain" and to add from my own experience - there is always a way to make side effects more tolerable (we just haven't found some of them yet).

Good on you for sorting your doctors out, your Mum must be very proud to have someone with your grit in her corner.

Karen

Hey Em,

Karen makes great points in her posts, she's a wise gal. Understanding that the use of these drugs can/will affect motor functions etc until a tolerance is built a bit...especially fentanyl. Of course some studies of morphine actually shows improvement in reaction times, I really wouldn't trust her driving or operating heavy machinery!

Fentanyl will reduce the heart rate, sometimes to dangerously low levels. If your mom is getting up after long periods of rest, walking is going to be an issue. I've been carted off to the ER several times due to really low BP...not enough blood getting to where it needs to go before racing my walker...bad deal!

Of course Karen was spot on...talk to her MO or pain management team, they're the experts.

I didnt know neurontin came in a patch. That medicine is used to make the mind trick the body into not feeling muscle pain. I take it in liquid form 2x per day.

Same goes for morphine, I wasnt aware it came in patch form. Ive had the fentanyl patch which is a huge help. It comes in 25, 50, 75, 100, 150mg. This is a medication to be very very careful with. Do not suddenly stop taking it, your mom must be weaned off it when she no longer needs it. Patches cant be bent, folded, or cut or the dosage could be off and she could get a much higher dose than its intended to be. She should also not take very hot showers as extra medication is released from the heat. Im not talking about normal temp. showers, Im talking scalding hot ones are the type to not take. Make sure you are very careful with disposing of the wrapping and old patch. A pet could get a hold of it and it is too potent for a small animal or child. The best thing about pain patches is that the meds last for 72 hrs so that you dont have to constantly take medication. Only need pain meds for breakthru pain.

Its good to hear she isnt in pain any longer and you dont have to push her to take pain meds now. She will adjust to the neurontin. Thats one medicine that has worked very very well for me.

Keep up the good work

She has finally adjusted. I was really worried for a while. Shes also developed a cough, i think because of the fistula on her neck. I think its irritating so shes started taking some childresn mucinex in liquid form. She only coughs when shes laying down so the mucinex has helped her stay asleep for at least a few hours.

It will help to prop up the top part of her bed so she is lying on an incline. My son set mine up for me and its a foot higher at the top than the bottom, it probably should be even higher. Thats necessary for the nightly tube feedings.

Hope today is a good day for your mom.