Running out of options - very scared. - Pain Management Message Board

antoinettev3 · 08-17-2005, 09:04 PM

I don’t know if anyone can really help me with this problem but I just need to vent. I am a 43 year old mesothelioma (asbestos cancer) patient and have been experiencing increasing pain despite all scans showing stable disease. I had been on Decadron for 3 months and started weaning off the drug because of side effects. I was using low dose Vicodin for BT pain and had adjusted well to the side effects.

I experienced severe flare in pain once I got down to ½ mg per day of the steroid and have had to up the Vicodin from 5mg every 6 hours to every 3-4 hours. Unfortunately the side effects seem to be getting worse. I’m nauseated almost all the time, I get so woozy and dizzy that all I can do is lay still and pray for sleep. The pain isn’t even being managed that well and I often need to take an additional 5 mg. an hour after the first dose. My prescription is written for 10mg every 3-4 hours max 6 per day.

I don’t tolerate opiates well or other pain meds for that matter and have tried Dialudid, Methadose, Ultram, and Neurontin. All of them had various problems and did little or nothing for the pain. Higher doses might have worked but the more I take the sicker I get.

I’m truly at my wit’s end. I’m scared and fear that there will be no pain relief for me. I’ve been very lucky over the past 10 years of dealing with my cancer on and off that my pain management has been easy. Vioxx and Celebrex worked great and Tylenol took care of what they couldn’t. Now even the stuff that seemed to work is now turning against me.

My radiation onc wants me to try the Duragesic patch but I have very sensitive skin and know that there will be problems with using the patch. I’ve also read a lot of posts on here of people getting pretty sick from the patch and since I’m prone to that I don’t think this is going to be a viable option for me.

My pain doc is tearing her hair out trying to alleviate my pain. She’s a wonderful woman who calls me from her vacation and days off to check on me. She said her job would be a lot easier if I had an addictive personality.

All of this would be a lot easier to tolerate if I could catch a buzz from any of these drugs but I get none. All I get is sick and dizzy. I don’t even get good and sleepy so I can get through the night. The only positive effects there are is minimal pain relief for 2 hours if I'm lucky.

Has anyone else out there been through this? Is there anything anyone can suggest? I’ve gone from being fully functional and working out 5 days a week to dragging myself out of bed in the morning long enough to get to my radiation treatment and back home to sleep. I just don’t know what to do. I also find myself being incredibly emotional on the higher doses of the Vicodin. Is this typical? My pain doc seems to think that it is to blame and has suggested anti-depressants. The thought of taking yet another mind altering pill is just too much. I just want my old brain back.

I apologize for being such a whimpering idiot. This is not what I’m normally like. Most people know me for being a rock. These drugs and the pain have reduced me to this.

Thanks for letting me vent.

Antoinette

feelbad · 08-18-2005, 06:02 AM

I am so sorry for what you are going through.And by the way, we all can be whimpering idiots at times,lol.i don't see that you have tried any of the long acting meds like oxycontin or mscontin,is there a reason for that or has this never been suggested to you by your doc?i really DO think that you should at least give these a try before going on the patch.i really did not have any sort of control over my pain until I was started on the oxycontin that i have been on now for about a year and a half.you could possibly have the same sort of reaction to the LA meds as you are having with the hydro,but it could also be the best thing you ever did.Has your doc ever Rxed any type of anti nausea med for you to try?this could also make a big difference.

you really do need to try the long acting meds instead of any more short acting as the coverage is sooo much better.You don't have that roller coaster of pain coming and going all day long like you would with the hydro. i hope you can find something that really works for you.i do think that trying the OC would really be a great idea.It has really helped me alot with certain pain generators,but unfortunetly not all,but at this point i will take what I can get you know?Hang in there.i am certain that the others will come along soon with many more suggestions for you.let me know how it all goes,K?marcia

Shoreline · 08-18-2005, 10:19 AM

HIgh antoinetee, Part of the advantage of long acting meds is they don'thave a rapid onset which causes more unpleaseant side effects. For most folks unpleaseant side effects will deminsih as you become more used to the medication, untill then thewir are plenty of options for nausea. The also came out with a 12.5ugh duragesic patch this year, half of theold starting strength wich may make adjusting to the med much easier.

You reallyhave to try to get over the hump of side effects because they wil deminish long before the pain relief these meds provide.

I do understand that some folks are just more sensative to side effects but 90% of the population can manage them and don't have alergies. hat your describing is just side effects which can be delt with untill you get used to these meds. Sen****ve skin doesn't necessarilly mean you couldn't benefit from a patch, If you can tolerate a bandaid, you could probably tolerate the patches. Also spraying a steroidal inhaler for sinus or asthma on the area of skin prior to placing the patch can reduce some of the irritation and inflamation from the adhesive.

Tylenol makes some folks sick to thei stomach and they do make oxycodone without apap in t. The also make stronger versonsof Vicodin with less apap. Norco comes in 5/325, 7.5/325 and 10/325 the first number being the hydrocodone , the second being the apap. It does tak alot of trial and error to find relief from chronic pain. None are side effect free, so It's a matter of fnding one with the least side effects and allowing your body to get used to them and let the side efects deminsih and treat them before you move up in strength to manage pain.

Good luck and keep us posted. Take care, Dave

MKS · 08-19-2005, 11:17 PM

Antoinette, I'm so sorry for your situation. Please don't be so hard on yourself - nothing wrong with reaching out for a little help, right?
Anyway, I realize that of course people respond differently to medication, but just thought I might tell you that I have had serious nausea issues with my pain meds, too, and Duragesic was probably the worst for me. I switched to oxycontin, which has been far more effective for pain control, and is significantly easier on my tummy, too.

I've tried about half a dozen or so different anti-nausea meds, and have found Anzemet to be truly helpful. It is indicated for chemotherapy and post-operative nausea, but it certainly helps my narcotic-related nausea. It is absurdly expensive - between $80 to $90 per tablet (100mg), but if you have prescription coverage, it might be worth checking out. I seriously resent paying that much money for medication, but just decided that it was nutty for me to suffer with nausea and vomiting on top of chronic pain, since at least I could actually do something about the nausea!

Please keep us posted, okay? And, by the way, I'm thrilled for you (envious too) that you have found a doctor who is so invested in your care! So many chronic pain patients would give their eyetooth for a physician with such compassion! Take care, Antoinette, and let us know how you're doing!

Michelle

trowftd3 · 08-20-2005, 01:30 PM

I just want to chime in....I, too, am taking oxycontin and even though it gets a bad rap and some docs are afraid to prescribe it, it works great for me. Like Dave said it's the sudden upswing in serum levels from the short acting meds like vicodin or percocet that causes the majority of side effects. I can really tell the difference between the long acting and short acting. The only side effect I have from oxycontin is an increase in energy. Darn!LOL
Good luck with whatever you choose. Maybe the 12.5 duragesic patch will work for you. Listen to Dave. He knows of which he speaks!!
Take care. ~Mush