Hi to everyone here, I've been absent a bit, trying to get a handle on my symptoms, pain, and this thing that is "spinal cord injury" and stenosis that I didn't know existed until about a year and two surgeries ago!
(sorry this is wordy, there is a very small part of the population that truly understand this.)
I had a question about pain relief and dosing...I was here a lot while trying to decide/find adequate pain releif and everyone was very helpful.
I had not tolerated the Fentanyl patches for some reason and became very sick on them, so in taking myself off them, I was in hell.
After "clearing" those, I tried Oxycontin, which is managing my pain, but I am still working on correct dose and times to dose.
My last trip to my doctor, I was raised in dose, (I am taking it twice a day,) and she talked to me about possibly needing it three times a day, and if I were honest, (I am afraid of pain med's) the pills do wear off at about 8 hours, sometimes earlier!
I have to see my doctor again in less that two weeks so we can, as she said, " Get me out of pain to the point that I can continue my life." She will talk to me about dosing 3 x a day...
My question is this:
Does anyone who uses Oxycontin and takes it three times a day care to share the time between the doses and some details on how it works for them? I am currently taking Percocet for breakthrough, but, of course she doesn't want me to require too much as it isn't good for your body. I was wondering how many hours between doses one would go, and would you wake in the night to take, for example the third?
As I said, I am a total "newbie," to this and I had terrible and chronic pain for almost 20 years until ONE MRI sent me into immediate surgery to correct severe stenosis, and other problems in my spine. I went from doctors telling me it was "stress," and to try NSAIDS, (which stopped working long ago,) to doctors knowing by my MRI's that I was suffering and in danger without surgery! All of this was a shock and I am trying to adjust, in fact my last surgery was only Aug. 26th of this year. I am told I will be in some pain for life, probably, unless something is discovered to help those like me. It is, of course, a shock to one's world.
I thank everyone for taking the time to read this and a big "HELLO," to NYmetroguy!
Ap
metronycguy
12-10-2004, 10:08 PM
hi AP, i am still here, i have a AFO now which helps with my walking quite a bit, also reduces pain, only problem is it only fits comfortable in my MBT sandals, so i am doing the European look sandals with wool socks!
actually with ultram every 3 hours i can walk and feel pretty fantastic!
nights are still evil. but thats a different neuropathic electric pain from the stenosis.
glad you are doing better
Kaprikorn1
12-14-2004, 04:12 PM
AP...what dose are you taking at each time?
I take 20 mg twice a day but if I have a busy day and am up and about all day and into the night I take a third pill (20mg) after dinner to get me through the evening.
Before I got raised to 20mg pills I was taking 10mg's 3 times a day and once in a while 4 times. At low doses like this there isn't a lot of risk of developing chemical dependency.
Kap
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Thank you for answering!
Metroguy, hello! Good to see you here and I'm so happy you are making progress! Anything that helps, I have found is worth every penny!
It is good to see that you are here, as I said, it gives me the feeling that there are people like yourself who can be counted on for support...I think of you often!
KapriKorn, (which is my "rising sign" thank you for your reply and interest. My pain is about 30 years old, and the end result of the problem of stenosis, and other minor problems that had developed in my neck, ended in causing me "Permanent damage," and my surgeon said I would be left with some pain. In reality, I have been in pain, which worsened and worsen before being dxed since an original injury at age 14 when I fractured the area that developed so many problems. ( I simple was not given an MRI, and I am told, that because I was an athlete, (ballet, jazz dancer,) and relatively young, no doctor could imagine it was the problem it was. Once dxed, with an MRI, I was given immediate surgery.)
I started on Fentanyl patches which I could not tolerate. I was started on 50mcg patches and I tried to tolerate them for about 8 months, but I was "worthless," meaning I could not return to work and they rendered me pretty helpless.
I had a second surgery, ( I was allergic to the metal used in my fusion,) in Aug. of this year, and took myself off Fentanyl which was a nightmare.
Still left with too much pain to function in a normal life, I had to try another opiod, and I am on the Oxy because of that history. My doctor started me on 20mg, twice a day, and I ended up on 40mg, twice a day. Now, my doctor would like to incorportate a third dose into my life as the medication wears off and I am simply in too much pain to even concentrate, or think clearly when it is not medicated. I am wary of a third dose, it took much convincing to talk me into trying another opiod as it was, after my experience with Fentanyl! I was wondering how I might set this up, my doctor is fairly flexable and given my age and lack of addictive problems in my life, she feels very confident in my using this kind of pain relif. I have adjusted to the fact that I need it...
I also use "TENS," and massage, but do not have to exercise much as I am already an athlete, but was given the special exercises to strenghen my back and help support my neck. I also, being a dancer, employ many yoga breathing techniques to help.
In reading your schedule and the flexability of it, I see that there are options that I did not know... I assumed that 8 hours must pass before each dose.
When I take my dose in the morning, it takes about an hour and TENS to releive the pain as I take not enough to last through the night, but don't wish to medicate extra in the night as it is not waking me up, (the pain.)
My dose starts to fail, (wear off,) and I need breakthough meds at about one or two in the afternoon, ( I usually take it at about 8 -9 am) It is this time, and the time between the second dose, (which I take about 7:30 pm,) that is the problem.
I need my neck to work, I am a national vocalist and choreographer, and I also choregraph couture fasion shows, so I am going back to work and taken some contracts. )It is great to feel I am "of use," again.)
I was thinking a much lower dose in the time that I mentioned when things start to wear off, perhaps 10mgs, or so? My doctor had suggested I take 40 three times, but I am lightweight, 5'8", 125lbs and I don't want to take that much. I know the Percocet I am taking for breakthrough is not good for me, so I want to cover that time with something affective, but not too much, if you now what I mean. Do you have suggestions? I, like you tried to avoid addiction to pain meds, but found out the hard way that all the doctors were right, (about three of them,) that for me, that was the way to go. However, I want to use the best possible plan to return to life, but not overly medicated.
Should I consider with my doctor the "as needed dose you mentioned? There are days when I must be more active than others and I certainly can feel it.
I am treated in Arizona, at the University Hospital which is highly rated in the country and I have good insurance, it seems it is up to me to find the right "recipe," to make my life as good as I can.
Again, thank you for responding, it is much appreciated, and I have found the most support and information here than anywhere, even doctors so I value this board greatly.
Hopefully awaiting a reply, (please pardon the typo's and spelling, although I am an educated women, often I am tired and do not use spellcheck! Hopefully you understand, =)
AP
JnWalker
12-26-2004, 12:24 AM
Well, I take Oxyc. 10mg twice a day and so far it is working pretty well. However i still get pain in between the doses so i take darvocet for breakthrough pain. What ive noticed is that the Oxyc. keeps the pain from sporadically spiking and going nuts. I have similar concerns in taking the darvocet for breakthrough pain but since it is working for me i dont want to mess with it. If things happen to change later on i will ask my Doc. to put me on 3 times a day. Suffering with chronic pain is such a horrible experience and difficult to cope with so i sincerely hope you can get that situated and have your pain under control. Good Luck and best wishes! http://sci.rutgers.edu/forum/images/smilies/smile.gif
Kaprikorn1
12-27-2004, 07:45 PM
AP...You should talk with your doctor and discuss all of the types, frequency and degree of your pain. It seems like she is very willing to work with you on coming to the correct med and the doses/frequency to take it. You may find that using the 20mg oxycontin regularly...say every 6-8 hours for the constant pain...then adding a 10mg for the times when you have severe breakthrough pain.
I also take 2400mg of neurontin (600mg @ 4X/day). This deals with the neuropathic pain I have constantly such as the burning feet, pin & needles, electric shock/stabbing pains. It works very well but I'm to the point where it is not handling all of my pain. I have elected to go the oxycontin supplementation route rather than increasing the neurontin anymore. I have found that this combo has been working the best.
There are so many combinations of pain medications out there that it does take some trial and error to get it right. At least you have a doctor who is very willing to work with you on finding the correct combo for you. If you read through these forums you'll find just about every combo imaginable. There just isn't any one right thing to take. One of my problems is that I have to stay away from any meds that adversely effect the liver as I have cirrhosis.
Good luck on getting the right combo...let us know how it goes.
Kap
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