I've cut my Oxymorphone/Dilaudid intake substantially. Dilaudid is down to zero, Oxymorphone steady at 10mg a day (pill divided into 2.5mg doses). I had a couple days of nasty and now I'm just sort of reeling in and out mentally, battling anxiety. I feel more coherent now, and a bit less depressed also.
Problem is that I'm feeling so much better now after those nasty days that my resolve to get completely off is waning a bit since I'm feeling fairly comfortable now at 10mg a day. Is this just a cop-out? Should I continue to cut down -and out?
Well I guess my first question is why are you ditching the meds? What about your pain? Do you have a plan in place with some other method of controlling it, or did you have surgery or something to take care of it?
If your pain is under control and you want to get off the drugs completely, then continue your taper. Don't rush it and don't just stop the Oxy, keep going down like you've been doing. You'll still have withdrawals but they won't be as bad. Don't fall into the trap of taking something else (anxiety meds, psych meds, etc.) to help with the withdrawals....you'll just get hooked on a diff med. A big part of the detox process is psychological, even after your body has adjusted to the physical aspect of not having the oxy in your system, your mind will screw with you and try to convince you that you really do need it....be strong, don't let it. For me, that part was always the hardest.
My pain has always been of the steady drumbeat (annoying) variety with episodes of severe cramping, vomiting, etc...
My job has always been an issue but lately it's been unbearable, and a real trigger for anxiety which ramps up everything. I spend a lot of time at worked camped out in distant restrooms hunched over the toilet with my head in my hands just trying to get enough of a grip to come out to face my coworkers. As a result my mental state has also tanked rapidly.
As per a previous post - Over the past year in order to combat my ailments and stay employed I've gradually allowed my Oxymorphone dose to creep up to 30mg/d, then added 4-8mg Dilaudid BT and more recently adding 0.5mg Klonopin to the mix. Well, we know how this story goes. Seemed to be almost working at first, then not so much, and as a few weeks ago not at all! I was just not functional. I was loopy, dizzy, dropping things, making mistakes, and most noticeably I was completely mental, a basketcase, a walking vegetable -on the verge of being fired I was sure....
It all came to a head week before last, told myself no more anything until the following day at noon (Arbitrary attempt at control). Of course by then I was in withdrawl at work which added even more stress to the situation. I just about cleared out my cubby and walked out.... I was looking for a bag, then a split second of distraction and I made it through. The next 3 days were more of the same with gradual improvement on a Friday, phew.
Now, I'm through the crisis. I'm cramped up and in pain, yes, but I'm coherent. The mental distress honestly, was more horrific than anything. When the mind goes too, all is lost I feel. I got real mad at pain meds, I got real mad at me. I'm more accustomed to being in physical pain and muddling through than anything else, so, I understand this state, and I can almost deal with it, for now.
Gotta say, even now at 10mg Oxy, I'm still unsteady and foggy. So, I'm in a full re-assessment mode. What to do? Stay at 10mg? Taper more? Taper completely? Cold turkey stop (I feel I could, and easily at this stage), or look for a new or different Pain med? That's where I'm at.
Iso, what does your gastro doc say about this? And have they ever offered meds besides narcotics? Generally for gastric pain they try and take it easy on the narcotics because they're so rough on the gut.
I am so sorry this has been such hell for you. I know how maddening it can be when it feels like its all falling apart and nothing helps, but as usual we're supposed to put a smile on and push through and it sucks!
I'm not sure if i'm lucky or just pathetic, i've been on these stupid meds for so many years, I don't even react to them any more. I take Morphine like normal people take advil. I honestly can't remember the last time a narcotic made me loopy or high.....
No, GI Docs are notoriously adverse to pain meds, but I found that they slowed my gut, stopped the spasms, and knocked down some of the ache of my chronic inflammatory processes. I don't know where the loopy came from, they used to feel more like 'normals' as you once said yourself. I used to feel a bit of calm mixed with nothing much more.... I assume the Klonopin? Maybe just my internal chemistry? Stress. Stress does funny things as you know. My mind has been such a mess that the synergy of it all made me go a bit nuts. I kid you not, when I was losing it a couple weeks ago, in addition to everything else that was going on I couldn't hardly see, my fingers couldn't feel, I couldn't hear the direction of sounds or filter the chaos for any sort of cognitive focus. It was a cosmic disabling. I don't know what it was that was going on, just life misery that went over the top. I've had several nervous breakdowns in this life, and that was very very close -thought I was going to tip all of the way into it. So..... Now what? Can I live without pain meds, sure I can. I thought I could make it all more bearable with them, but I guess it just doesn't work that way.
Last edited by Isotope; 04-21-2012 at 07:49 PM.
The following user gives a hug of support to Isotope: janiee08 (04-22-2012)
I totally hear you, after 25 years of Pain Management a total of 34 operations in that time and being BiPolar, trying to keep all the pain meds and psych meds playing well together and being one of those totally right brained idiots who like to torture themselves by having a couple of kids, thinking they had to get 3 college degrees and work full time at the super stressful career while juggling all the medical crap. I finally gave up about 2 years ago, I was literally killing myself. One nasty thing about us BP'ers, we tend to be over achievers who aren't capable of overachieving because are brain chemistry is tweaked!
As for the Klonopin, you were on a really low dose, that's another med that I've taken every day for years, it's designed to stop anxiety and stress, generally doesn't cause much loopiness. I imagine it was more the combo of stress, pain and pain meds that weren't working on the right receptors.
So I guess you're at a point where you have to decide what quality of life you can achieve at your current level of meds or without meds, and which is better, or are they the same. Personally if it were me, if I could achieve the same quality of life without pain meds, I'd be off them in a heartbeat. You've got it down to the bare minimum it sounds like and now it's just the "What's best for you" question that only you can answer.
Many thanks for all of your input. I read some of your blog posts and you've been dealt a really tough hand -my heart goes out to you. For me, I don't function well at the job I spent most of the last decade re-schooling and retraining for.... it's too stressful. When I'm not at work I lay in bed and dread going back.... Never thought I'd be here.... I even looked into SS Disability but I don't have enough 'work credits' due to being in school so long and not in the workforce paying into SS. Seems odd to me, how would a stay at home mom, never in the workforce ever have enough credits? So, I guess that's out. I have 21 credits and I need 30. I suppose that means I grind out 3 more years at my job when one day feels like an eternity.... Arggghhh.
Thanks again, you've been great.
btw -where is our buddy jonnstar?
I'm actually kinda surprised as an opiate tolerant patient you are still having symptoms of being dizzy, loopy, difficulty concentrating, etc, as those are more typically when you start a med or are being overdosed, not years into it at a dose which you describe is not actually helping much. I assume you've tried numerous other meds and doses?
Sometimes hyperalgesia can be to blame. Hyperalgesia means at a higher dose you aren't getting any more pain relief than at a lower dose, and it decreases your pain threshold. It manifests as tolerance. But, I think that term gets thrown around too much by doctors who think their patients are on too much of a dose and it is just tolerance. If when you increase the dose you get more pain relief, and when you decrease the dose you get less pain relief, that doesn't seem to be a good fit.
I commend you for wanting to taper off your meds as you realized the side effects were outweighing the benefit, but I wonder if you have any other good options. I also question why you are still getting such assumed side effects at such a reduced dose. I highly suggest you work with your doctor on this. Ask for suggestions of how you can get pain relief while still being functional at work. Maybe a lower dose of a different pain med plus re-trialing some adjunct meds like an anti seizure or anti depressant med (for their pain properties)?
I can use myself as an example and say that when my pain is too high, I have difficulty concentrating and generally feel out of it (loopy). When properly medicated I do much better. But, I guess I'm lucky in that I've never had the side effects like euphoria. I've always maintained functionality and have always been on the side of under-treated pain (less than 50% relief).
I don't see any problem with a 30mg daily dose of Oxymorphone if it was working and your doctor was comfortable with it (you said on your other thread you were mad at yourself for letting your dose get that high). Any chance your symptoms are not side effects of too high of a dose but symptoms of untreated pain? Some folks are just really sensitive though. I'm sorry you are dealing with this as no one should have to deal with out of control pain.
How did your pain do with the drop from 30mg to 10mg of Oxymorphone? Has your doctor ever mentioned trialing a pain pump to see if you can get relief with a lot less side effects? Although typically patients would be on much higher daily doses before considering that, if going off the meds doesn't turn out to be feasible, and you can't tolerate enough of a dose to remain functional, I would highly consider that. I know what you mean about how much a struggle every day at work is. Best wishes.
I've felt both under and over medicated at various times -at the same dose. My mind has been the wild card behind the curtain allowing me to be relatively pain free and coherent one day, or cramped up and breaking down the next... I've never really had a flat lined, consistent, predictable response. Last night I felt very good, low pain, low anxiety. This morning I awoke in a total panic, cramping and nearly backsliding on the meds.... I have no answers. Taking 10mg, 30mg, 50mg, it doesn't seem to actually help anything, it doesn't really touch the core of whatever my problem is- it just nibbles away at the edges of the pain while making me feel farther and farther from attaining any sort of control over my life.
All the while I've been rotating around the wheel with the Psy-Meds also... I feel like a car with a computer problem that needs to be plugged into a diagnostic tool. Probably would be best to get off of everything and see what my baseline functioning truly is.... but I worry I will completely devolve into a very bad place. Hello mental Illness, it's me!
I think I understand more now. I would urge you to work with your pain doctor to taper down on the pain meds to see what your baseline is, and work closely with your psych doctor to maintain stability there. If you are having such a tough time, may you do better with an in-patient med taper so they can give you any adjunct meds and make sure you are psychologically stable? Even if you had to take a week off work, if it gets you to a better place, it could very much be worth it. Hang in there! Best wishes.
The Following User Says Thank You to tortoisegirl For This Useful Post: Isotope (04-22-2012)
I'm not sure where Jonstar has dissapeared to. Every once in a while he goes off the board for awhile. I think he like all the rest of us long timers gets a little burned down and has to take a "time out" from the constant upload. I'm sure he'll be back around sooner or later, he usually doesn't stay away for too long.
Hang in there Iso, and remember to Breathe...go through times were things really suck and we can't see the answer through all the problems, but it's there. If you don't have faith and trust in your doc, if you don't believe that he/she is truly there to help you find a way to improve your quality of life in spite of your medical problems, then maybe it's time to look into a new Dr. and I know that's not an easy thing, but sometimes it's the best thing.
I'm around when you need to yak, just give a yell.
The Following User Says Thank You to katlin09 For This Useful Post: Isotope (04-22-2012)
I have another thought that I meant to mention earlier and it escaped my brain. I have IBS and while it probably doesn't compare to the verocity of your stomach pain, it can be pretty painful at times. One trick I use is Lamaze breathing, it's hard for your stomach to cramp up when your doing breathing excercises, and although it never did squat while having kids it does help with the gut pain. Of course men would never have reason to think of using it. It may not make a major dent in your problem, but it can help when your stuck in the bathroom just trying to get through the mindblowing pain.
I appreciate that. I do try to control my breathing (when possible) since I find that I'm usually panting like crazy, small little breaths, clenched up etc... Currently back on Prednisone, I seem to be in a constant state of inflammation which feels like a never ending flu, cold clammy, shaky, tired. Part of my GI cocktail is Cipro too, everyday, for several years now... I must be a training ground for some Super-Super Bugs. So far no C-Diff but it sure feels like it some days.
Iso, does your doc not rotate your anti-biotics so you don't get c-diff or become immune to certain bacterias? Generally when you have to take anti-biotics they rotate a few different ones so that your body does not build a tolerance to any nasty lil bugs. How long have you been with your doc?