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Old 02-18-2010, 02:30 PM   #1
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Question....please help!

A little history...failed back syndrome (lumbar) with pain and permanent nerve damage and nerve pain radiating down the leg, post traumatic fibromyalgia with chronic pain and now diagnosed with osteoarthritis of my entire spine (note: we all get some OA as we age, but mine is three times the amt. you would expect of someone my age), plus 4 disc bulges (cervical and lumbar). I am very depressed now and I am already on an antidepressant. All of this new info has really blown me away.
My question is this...I was on Vicoden for about a year and it really wasn't helping and she switched me to Oxycontin 10 mg and I take it every 6 hours. I was taking it every 12 but had NO relief after about 5 hours. So she said everyones metabolism is different and I should take it every 6 hours. Still not much relief...she now wants to switch me to 20 mg every 6 hours and I tried it. It helps the pain but I sleep the first 3 hours after taking it. Does this go away with time? If so how long does it take? I can handle this for awhile if I know it is temporary, but I can't live my life sleeping 20 hours a day!!
Thanks for all your help!

Deb

 
Old 02-19-2010, 08:51 AM   #2
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Re: Question....please help!

Yes, you're body should adapt over time. You might consider taking it less often...Like every 8 or 10 hrs I don't mean to scare you, but one of the signs of taking too much med is over sedation. If you are sleeping 20 hrs per day, then you are probably taking too much. You might want to discuss all of this with your Dr.

Best of luck to you.

Regards,

Ex

 
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Old 02-19-2010, 09:00 AM   #3
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Re: Question....please help!

I agree with Ex...a little bit of fatigue getting used to a new medication can be normal..but this sounds like you are getting too much medication to cause that level to make you sleep so much...

May I ask what levels your pain goes to with the medicine? Are you taking other things such as muscle relaxers..anti-depression meds..and doing other modalities to help with your pain..ie..exercise, yoga, therapy, etc..

Keep in mind that with those of us with chronic pain...a level of 4-6 is considered acceptable for PM Dr.s...so sometimes we can expect a medicine to make us almost pain free which unfortunately is not going to happen..boy how I wish we could get back to that way of life again!!!

I would definitely call the Dr. immediately to tell him that you are sleeping/drowsy so much with this increase..

Also..making sure that we get the best amount, 7-8 hours, of sleep we can is crucial for us in chronic pain...

Ever since I started with taking Ambien...I not only sleep SO wonderfully at night..but take a lot less of any type of pain medication since I am refreshed the next day..so mentally able to handle the pain better as well as body has gotten to stage 4 sleep...There are also non prescription type things like melatonin and such that can really help..

Good luck..

Last edited by Ilovemycutedog; 02-19-2010 at 09:04 AM.

 
Old 02-19-2010, 09:39 AM   #4
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Re: Question....please help!

i toally agree with ex on this. while some of what you are currently feeling with the over tiredness and nodding off is kind of what i also experienced at first whenever they titrated me up? that will usually be adapted to over a bit more time. BUT taking this med every six hours is kind of like double dosing the second supossed "release" here too? since this drug supposedly releases at one hour after taking then another release around that six hour mark, you could just be getting a bit too much at the six hour dosing? when this was going on with me in not even close to having 12 hours of real solid relief, my PM dropped my dosing down to every 8 hours between doses, not down to when another release is kind of supposed to be delivered at kind of thing(thats just kind of an odd thing to do with actual oxycontin considering)? you just may wany to ask your doc about doing every 8 hours instead of the every six? it could make a much bigger difference in how YOU actually feel and not so sedated and tired? this would also be the more to err on the side of safety for the patient type thing too? just holding off those two hours along with it taking an hour to actually relaese itself may work better for YOU overall here. just ask your doc. i hope going to 8 may help you more than the six right now does with side effects. it did change alot for me and did still work really well at every 8. Marcia
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Old 02-19-2010, 11:21 AM   #5
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Re: Question....please help!

OK...talked to the doc...she wants me to either stay at 10 mg. every 6 hours or 20 mg every 8-12 hours. I can use Vicoden 10 mg. for breakthrough pain and if I am taking more than 4 Vicoden per day then we have to look at other long acting drug options. Unfortunately, I don't do well with Morphine drugs and that would be the next logical step according to her.

To answer some of your questions...I am on an anti-depressant, Lunesta 2 mg. to sleep (and I do sleep well), Motrin for an anti-inflammatory and Skelaxin for a muscle relaxer due to spasms from fibro. I take a "ageless, gentle" yoga class for those with health issues. I can't take any of the anti-seizure meds for nerve pain, like Lyrica and Neurontin (makes me a complete zombie even after weeks) and I tried Cymbalta and Savella. The Savella caused my BP to rise very high over my normal baseline.

I am a BIG WIMP when it comes to meds...usually the docs start me on pediatric doses...they gave me Morphine once after a surgery and I was totally apneic (stopped breathing). So I'm thinking that may be part of the problem with the Oxycontin and my sleepiness.

my pain level is never below a 5 with meds. On my really bad days when the fibro, back pain and nerve pain all kicks in...I can only get to about an 8 with meds. Those are the days I am pretty much incapacitated.

Hey Marcia...I haven't heard from you in awhile! Hope you are doing better! May I ask how much Oxy you are taking every 8 hours? Did you have a period of time where you had to get used to the drug? If so, how long was it?

Well, the 10 mg every 6 hours hasn't been working great so I think this weekend while hubby is home I will try 20 mg every 8-12 hours and see what that does.

Thanks,
Deb

Last edited by Administrator; 05-31-2011 at 02:36 PM.

 
Old 02-19-2010, 11:58 AM   #6
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Re: Question....please help!

Sounds like a good idea that your Dr. has decided on...Taking a larger dose of the Oxy at 6 hours, as others have said..is when the medicine releases it's second half of the dose so you are doubling up...

So the 8-12 hour mark is what most people do...

It's one of those things that with the 20mg of Oxy being one of the lower mgs...you may just want to try that for a few months at that dose to see where the pain levels out for you...it sounds like you have a good Dr. who wants your LA medicine to work well for you and to not have to take too many BT meds so that is a blessing with an understanding and caring Dr...

Hope this works better for you

Last edited by Ilovemycutedog; 02-19-2010 at 12:00 PM.

 
Old 02-19-2010, 08:23 PM   #7
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Re: Question....please help!

Hey Deb....I just wanted to add that it seems like you've got a great Doc....One who listens, is compassionate, and gives you some options....Can't ask for anything more quite frankly.

Best of luck with your new dosing strategy. Your body will tell you which is the "right" plan.

Take care,

Ex

 
Old 02-19-2010, 10:21 PM   #8
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Re: Question....please help!

Hello Deb, I just wanted to say that I have most of the problems you have except the med sensitivities. It's really hard to have that Fibro AND FBSS together; lots of suffering. I take Oxycontin 20 in the a.m. and 40 in the p.m. since my pain has been worse in the evening ever since I had my fusion in October of '07. I also take Percocet 5 twice a day as needed (and I need it). Well, just wanted to introduce myself and say hi ....janiee

 
Old 02-22-2010, 04:14 PM   #9
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Re: Question....please help!

Thank you for sharing and caring!

Yes, my doctor is an angel! When I was referred to her she wasn't taking anymore patients, but when my surgeon told her my story she took me on. She has been wonderful..I was really at the end of my rope..pain, not sleeping at all, depressed..you all know the story. She is considered the fibro expert in our area as well as one of the best PM's. She does give me the flexibility of trying different options..So I feel very blessed to have her!

Well, I tried the 20 mg about every 10 hours...I still sleep for the first 3 hours, then it starts to wear off about hour 6, gets better for about an hour once it releases again and then quickly decreases in effectiveness! So tomorrow I will try 20 mg every 8 hours...hoping that the drowsiness will get better after a few weeks. Is that realistic or does it take a few months?

What is the average pain level that most of you get WITH your meds?

Have a good evening!

Deb

 
Old 02-22-2010, 06:59 PM   #10
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Re: Question....please help!

Quote:
Originally Posted by deb53 View Post
So tomorrow I will try 20 mg every 8 hours...hoping that the drowsiness will get better after a few weeks. Is that realistic or does it take a few months?
Yes, a couple of weeks is reasonable. In fact, it probably won't take that long. I think you'll find that you'll slowly adapt. If it doesn't, there are meds out there that many PMers take for day time drowsiness....Meds like Nuvigil & etc. This would be something you would want to discuss with your Doc. But, I'd give it a bit of time first.


Quote:
Originally Posted by deb53 View Post
What is the average pain level that most of you get WITH your meds?

I would highly recommend you read the recent thread titled "Pain Scale." Here is the direct link. Not only does it explain the scale, but also gives you the expectations & etc. Please let me know if you have any questions after reading it.

http://www.healthboards.com/boards/showthread.php?t=733168&highlight=pain+s cale

Regards,

Ex

 
Old 02-23-2010, 07:12 AM   #11
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Re: Question....please help!

sorry i haven't been back here yet deb, i was helping a few different people on the boards here too. what ex just mentioned? ditto. you should be adapting to the changes here over time. i too was really having the old tiredness crap alot as we first titrated me up on my dose when i finally got to the PM back in 04. at that time, by the time i did feel some good relief in the areas that i had pain that actually DID respond at all to narcotics i was at 60-60-60. part of the underlying reason that i see now that i was up so high was this was still too close to when my spinal cord surgery took place and still kinda raw and suffering ALOT of very deep muscle damage then, along with also having a pain syndrome called central pain that was from damage to a particular spinal tract within my cord that got damaged(totally non responsive to ANY narcotics what so ever)? i was still not able to actually differentiate just what was my 'healing' incisionary pain, the muscle crap and the central pain since it was allll one big screaming nightmare up in my upper back and c spine areas. so it was very very hard to try and actually 'feel' the real relief til it was managed enough thru the central hell that i could actually 'feel' that difference at all. so i was up a bit to high then. but since that time, i only have had one 20mg raise in my OC at all and have been on a total daily intake of 200mgs for the last five years. the thing here is, when my pain like midday was really getting bad, all we really had to do was just take 20 from my night dose and switch that to the midday one and it helped alot since my night pain then was pretty okay. since then we have done the same thing at various times to better hit the way my pain has been depending upon surgeries and other progressive crappy things that just are all my pain crap. so currently i am at 70-70-60(we were trying to simply even out my overall blood plasma level). trying to switch meds around when you have been on the higher doses like i was started on instead of actually adding a new increase to someones meds really can work depending upon the overall way your pain actually is. then you do not always even need an actual increase. i totally lost ANY real level of actual tiredness or drowsiness quite a few years ago once i just got used to taking this stuff. i am really wondering here tho just given how you actually have described how your OC appears to be releasing based upon your really high level of the tiredness at the beginning here among other times too, if you may not be a 'hyper metabolizer like i am now? it just sounds like you are really getting one heck of a big wallop there at the very beginning, ya know what i mean? just something you might want to check into with your doc?

i also found an amazing therepy that has also helped TONS with some of my really awful pain from the muscle damage and the ongoing creation of trigger points from spinal nerves that are really inflammed in my c spine for various reasons? its called myofascial release, and it has been a freaking godsend for the worst muscle crap i have ever had to deal with. my therepist can drop my upper back and neck down for about a good five days after a good session. anyone who just has problems with severe muscle pain or the constant development of those horrid TPs can really benefit from this type of therepy too. my ins co has actually been paying for the therepy now for well over two years now? this therepy was actually highly recommended by my in rehab after the cord surgery PT person for the insane level of that muscle crap that gave me TPs that i kid you not were like if you just cut a softball in half then slid each side up under my skin? that is how freaking huge these were then. unfortunetly back in 2003 they denied the coverage for it. but now they actually cover it(this was the exact same ins co both times). so they must have finally enlightened themselves as to the huge benefits this therepy just has for some of us.

if you are having anything like i had and have deb, i would seriously see if you can find a good experienced myofascial release therepist in your area. my therepist has over 20 years of experience just doing this stuff and really does keep me running, i swear. this has just become a very crucial part of my pain management now. just something i wanted to let you know about to try that really does work for alot of muscle nightmares. i do hope things get better for you here soon with just hopefully adapting to this? you also just could be a bit more sensitive to oxy than the norm too. anything is just possible when we take meds, ya know? marcia
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Old 02-24-2010, 06:36 PM   #12
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Smile Re: Question....please help!

Quote:
Originally Posted by feelbad View Post
if you are having anything like i had and have deb, i would seriously see if you can find a good experienced myofascial release therepist in your area. my therepist has over 20 years of experience just doing this stuff and really does keep me running, i swear. this has just become a very crucial part of my pain management now. just something i wanted to let you know about to try that really does work for alot of muscle nightmares. i do hope things get better for you here soon with just hopefully adapting to this? you also just could be a bit more sensitive to oxy than the norm too. anything is just possible when we take meds, ya know? marcia
I just had my 4th and final quadrant of my back RFA sessions done yesterday... It was supposed to have happened on the 5th but I crashed my bike and screwed up my hip and knee so bad they "couldn't do the RFA with acute pain in other regions." Anyways they do have a myofascial release specialist and I have an appt in 3 wks (minimum wait time after RFAs) for my PT assessment and referral to the myofascial release specialist. Silly as it sounds I'm excited just about getting the assessment done and out of way so my treatment can begin.

On a side note they were very conservative with my upper back RFA treatments refusing to go above C6 so my neck and shoulders (C3-C5) over compensated. I posted in another thread on these boards about dermatomes... http://www.healthboards.com/boards/showthread.php?t=665989&page=4

I think its invaluable knowledge to have understanding which nerves innervated which areas of your body before considering any treatments but especially surgeries and the more foreknowledge you have going into the doctor's office the better discussion you can have about any procedure you are considering and how it should help you..

Excited for the future,
Michael

 
Old 02-25-2010, 07:17 PM   #13
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Cool Re: Question....please help!


I called today and was able to arrange to get my first myofascial release treatment 2 days after my initial physical therapy consult is scheduled next month!

Yay me!

 
Old 02-26-2010, 07:22 PM   #14
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Re: Question....please help!

Hi all,
Thanks so much for your input!

OK...I am now taking 20 mg of Oxycontin about every 9-10 hours. My pain level is the lowest it has ever been...about a 3-4!!!!! I am still extremely drowsy all the time, but I am hoping that will pass in time as you all have said. It is worth the drowsiness to have my pain levels so low!

My doc checked my vitamin D level and it was very low again...she put me back on a mega dose once a week and said I will need to stay on it forever. I am actually glad because now I have another treatment to give me some hope!

Another question...on average how often will doses have to be increased due to tolerance?

Deb

 
Old 02-27-2010, 04:04 AM   #15
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Re: Question....please help!

That's great news Deb!...The drowsiness should subside over the next weeks...

For me..living with chronic pain..I live with about a 5-6 pain level with my medications...and haven't had a med increase in years...I try to keep my tolerance level down as low as possible since I have many years ahead of me in pain...i actually asked for a decrease a bit ago since I was starting acupuncture...and wanted to get the full effect.

I just read a study that close to 85% of the population is low on Vitamin D..so glad that you are getting another round as that really helps with muscle pain/spasm..

So when I start to have extra pain for a day/bad week...I try to use other modalities besides more medicine to help with it and bring it back down again to my 'regular' number...

This way..I know that my tolerance is low and there is always room to go up if I have other health issues or surgeries later on..

That's just me though...

Again..so happy to hear that your pain levels are so low! Being a 3-4 is a fantastic number!

Take care,

 
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