medication

[LBUSH49]

I am so tired of taking medication I've been on 13-15 medications a day what else can one do after 23 operations 7 of them being back operations , and still having cronic pain . I've had cronic pain since I got hurt 21 years ago , I've been on these medications for almost 4 years now and they don't seem to be working like they did before ,what does one do next ,I still need 2 knee replacements and still have back pain , I am ready to give up and throw in the towel and just give up , cronic pain how can one live with it .

[NetoAnAstro]

I ended up giving up most of my medications by accident. A doctor suggested that I give up a particular drug for a few days. After all, the medication effects were 10% of what they originally were. Apparently, the body gets used to medications and its effects are lowered. He said I would suffer a few days and would get much better relief once I left it a week. The pain seems harder and after a day or so, it feels less. I would start the medication again with good results for a few weeks again and redo the same pain process. Eventually I started going for a few weeks longer without them until I left them for good.

[LBUSH49]

here is a list of the medications I'm on Depakote 500 MG 3x's Carbamazepine 200 MG 3x's Oxycodone 5/325 1 @ 6 hrs. Furosemide 20 MG 1x Cymbalta 60MG 1x Methenamine MD 1GM Diazepam 10 MG 3 x's lipitor 40MG 1 x oxycontin 20 MG 3 x's Amitriptyline 75 MG 1 x babyasprin and fishoil 1000MG 2x's some of these after being on them for almost 4 years I'll need help to get off of and I just had a Bladder bypass (ILEAL CONDUIT) so my bladder no longer functions they took a piece of my intestien and went from my Kidney to a bag on the outside of my belly and I have to empty this bag when ever it is full and I have to change this bag system every 3 days and I'm still having Kidney problemsand still need to have both knee replaced so I'm in a no win situation and very frustrated . this is a list of some poweful drugs and I would probably have to go to a rehab , but I can't until they get my body fixed up so I can live some what of a normal life .

[LaMemChose]

Back off the opiates and benzos Larry. Part of the point of your recent surgery was also due to pain, not just leaking probs.

You barely mentioned your knee pain until after the recent ileit surgery. In one post you said you hurt when you walked up stairs. From what I understand, you recently moved so stairs wouldn't/shouldn't be an issue.

NetoAstro is right. Back off the opiates and benzos. You'll feel it the first few days, but given a little time you may well be surprised what good a clearer head will do you.

[NetoAnAstro]

here is a list of the medications I'm on Depakote 500 MG 3x's Carbamazepine 200 MG 3x's Oxycodone 5/325 1 @ 6 hrs. Furosemide 20 MG 1x Cymbalta 60MG 1x Methenamine MD 1GM Diazepam 10 MG 3 x's lipitor 40MG 1 x oxycontin 20 MG 3 x's Amitriptyline 75 MG 1 x babyasprin and fishoil 1000MG 2x's some of these after being on them for almost 4 years I'll need help to get off of and I just had a Bladder bypass (ILEAL CONDUIT) so my bladder no longer functions they took a piece of my intestien and went from my Kidney to a bag on the outside of my belly and I have to empty this bag when ever it is full and I have to change this bag system every 3 days and I'm still having Kidney problemsand still need to have both knee replaced so I'm in a no win situation and very frustrated . this is a list of some poweful drugs and I would probably have to go to a rehab , but I can't until they get my body fixed up so I can live some what of a normal life .

LBUSH49, I feel for you because it brought back memories of taking 10 or more pills every 8 hours minus the ones that I took every 6 hours. Honestly, in my case some of those were not necessary. They give you some to cheer you up but I still felt depressed. I got one to make me want to eat. I gave that one up by eating at a specific time whether or not I was hungry. Plus others for similar functions, plus the ones to keep one drug from interfering with another drug, and some to keep from irritating my stomache, only kept the ones for pain. I try to slowly illiminate one pill and usally ment that I no longer had to take another one since one was ment to commpliment the other one. I tried to just keep the ones for pain.

[LBUSH49]

my knees have been an issue since my 2nd back operation but it's like if your foot hurts and you hit your thumb with a hammer that is going to hurt more than your foot , I had one of my knees operated on back in 1996 , and that one is worse than the other on they have to Drain my left kne 3-4 times a year and I get 5-6 corutazone shots and 3-4 in the left leg ,but the back pain over takes the knee pain . do you understand what i mean? I also have a seizure disorder too . Also the Dr' that is at the pain clinic , different DR. than my primary said I'll always be on the OXYCONTIN 20MG 3X's a day that's 2 different DR.'s ,and I still have to find out why my right kidney is still hurting ,come on you think I like being cut open , my day will end very soon if i have to live like this.

[NetoAnAstro]

my knees have been an issue since my 2nd back operation but it's like if your foot hurts and you hit your thumb with a hammer that is going to hurt more than your foot , I had one of my knees operated on back in 1996 , and that one is worse than the other on they have to Drain my left kne 3-4 times a year and I get 5-6 corutazone shots and 3-4 in the left leg ,but the back pain over takes the knee pain . do you understand what i mean? I also have a seizure disorder too . Also the Dr' that is at the pain clinic , different DR. than my primary said I'll always be on the OXYCONTIN 20MG 3X's a day that's 2 different DR.'s ,and I still have to find out why my right kidney is still hurting ,come on you think I like being cut open , my day will end very soon if i have to live like this.

You defenitly have more problems to deal with than me. I thought it was just the SCI. I still went thru a lot of days I didn't even know I excisted when trying to drop a pill. Sometimes I just gave up a kept taking the pills. But your pains are more than the ones I dealt and deal with. I was scared to damage my stomache and kidneys and that's the reason I opted to minumize the use of the large amounts. Hopefully someone has an answer that may help you at least with some of the pain.

[LBUSH49]

I have the worse luck anyway yesterday I woke up with what I thought was a bug bite , today I woke up my whole ankle is all swollen and I can't put to much weight on it , I once told my DR.if it wasn't for bad luck I wouldn't have any luck at all ,any ideas on my ankle yesterday I kept it up and put ice on it also read my post in care about my sore back I thought it was my air conditioner ,again my left Kidney is still sore , but today I'm going to hold off on pain meds. until after my urologist apointment

[LBUSH49]

As if I'm not on enough medication today they put me on INDOMETHACIN 50 MG 3X'S for GOUT and then I found out I have to have a ultra sound every 4 months to make sure my left Kidney is still working ok , I almost lost that during my last operation due to built up scar tissue , things for me are getting worse instead of better!

[LBUSH49]

Hi David , could you please give me your output on this , this is after 23 operations since 1985

[firesmurf]

just wondering LB,but between the depakote and the lipitor an having the kidney issue,i am hoping that your doc is regularly doing labs on your liver and the kidney functions??i know that lipitor and depakote can both raise your liver enzymes,thats why i am asking.just gotta be careful.

you know,I can soo relate to the ongoing kidney crap.mine just decided to do a huge "shift'?just because of the size they are at right now(both are approx around 19CMs)because of the polycystic kidney disease i was blessed with having.they got soo big that the right one is actully now,well part of it is up under my ribcage with about two inches of it running outside and along the ribcage and on down into the hip area?the L one is partially in the front of my abdomen(their still trying to find my spleen) and runs thru in between the hip and the bottom rib and ends up sitting right behind my left lung now.unbelievable but believe it or not(knock on wood here)all my labs are still within good normal ranges.i am soo thankful for that part,but this new pain I have now from all of the pressure that is pushing upwards is really getting to become a major issue,where it was just kind of actively annoying before.and there is nothing i can do but realistically just treat the pain.oh yippie.

I hope your kidney stabilizes for you soon and at least one of your issues gets layed to rest.one thing you can check off that 'list' anyways.i too have my ongoing 'list'O fun.god life sucks.good luck LB,marcia

[LBUSH49]

Hi Marcia , I had a Bladder Bypass , they took a part of my INTESTIENS and have them going from my Kidney to a bag on my belly and I drain when it's full (no more Bladder ) they do blood work every 4 months and a ultra sound on my Kidneys . There is another medication but rarely use only if the pain is so bad that I can't take it it is called HYDROMORPHON 2 MG THIS KNOCKS ME ON MY BUTT

[LBUSH49]

my knees hurt even when getting out of chairs , the weather and even walkin with my walker

[teena]

Larry,

You're in my prayers...feel better soon!

[LBUSH49]

The problems I have being on all this medication is I forget things all the time and another problem I have is I repeat myself all the time too ,but people don't know what it's like taking all this medication , if I gave them just one pill they would find out and be asleep in 1/2 hour but they don't understand, my wife is always saying you just tolld me that or I just told you yesterday ,they just don't understand. Even on Care Cure I find I reapeat my self , ask the nurses they know ,. but I have no control over it ; LBUSH

[LBUSH49]

As if I'm not on enough medication they put me on another one yesterday Bactrim , this is a new one forr me how well does it work , does anyone know? It's supposed to be for a U.T.I. , but they aren;t sure if it's that or Kidney stones I'm still waiting for the results.

[firesmurf]

hey LB,its another one?geez.my son takes bactrim twice a week prophalacticly(now I know I spelled THAT wrong)to try and prevent the pneuomocystis pneumonia that can pop up in immunosuppressed people.its just part of the many meds he takes for his transplant.how long do you have to stay on it?i do believe just because of my sons situation,he is on it twice a week for life.

as far as will it work or not,all i can say is honestly,my son has had his new liver for ,it was seven years in the beginning of june,and he appears to be as healthy as a horse.myself,and my hubby and our other son seem to get sick much more often than the one with the Tx.the only actual 'illness' he has had in seven years was the CMV virus about a year post Tx and that was cleared up with IV gancyclovier that we gave him twice a day at home.so the bactrim must really work rather well.and just so you know,i am in way shape or form any sort of "germaphobe".if you saw my house,you would most definitely see the dust bunnies mating in the corners of every room.

hopefully this will take care of your problem.good luck LB,let us know how things go,marcia

[LBUSH49]

Yesterday I got the results of my Cat Scan they were normal , my Urologist thinks it's back related , when we moved I did lift something heavy my wife said I shouldn't be lifting that , after I had to sit down and called it a day for me and that was also around the time my back pain started and I already know I have bulging discs at L3-L2 so now I go see my DR. at the pain management clinic , that would be all I need my discs kepp herniating , as I have degenitive disc disease

[LBUSH49]

Does anyone have any Ideas on what medication I can take for flank pain ?????????;LBUSH

[firesmurf]

hey LB. you know the only med i have ever taken that helped with my flank pain is not a med,its the lido patch.normally aleeve would do the trick but because of my aneurysm coiling i am now on baby aspirin for life and i see you are too,so that may also be out for you too. but when things flare up back there and believe me,since the shifting of my kidneys and also some disc problems in my lumbar area,and the L kidney intermittantly will shift onto my sciatic nerve,we are not having a great time here at all.i am sure you can relate to that.but the lido really IS the only thing that really offers me any sort of relief from that particular pain.i am currently on 80-80-40 or oxycontin a day and it really doesn't do a whole lot for that particular pain at all.the lido tho does give me a notch or two reduction when things really decide to hit the fan again.and they always do.

with all the meds you are already on,i would at least maybe give the lido a try if you have insurance.if not,it can be pretty spendy.hopefully you can at least give this a shot.although its not the "perfect cure" it DOES help to take the edge off enough so i can move around without wanting to die.i can also lift my L leg while wearing the patch and cannot when this crap flares(the sciatic thing?) so thats pretty huge for me.

there are also some topicals out there that can work for this too.i was just reading thru the new thread about how menthol thats contained in things like ben gay really DO help with certain types of pain so i know this was not all in my head.i also have tried heat/cold depending on whatever happens to feel good on that particular day.it does change from time to time and that I have no clue as to just why,i just do what my body likes that day ya know?

I sure hope you can find something to knock that pain down,i know that sucks.

just a question here as I suffer two really strong seperate areas of pain and was wondering if you had noticed this too.between my knee pain and the central pain in my arm thru my shoulderblades,i have noticed something rather bizarre,i have found that when both pain areas are really flaring at their worst,somehow for some reason,it is actually much easier to deal with as opposed to having only one particular area that is flaring?? do you know what I mean/its really freaky but it just seems like when the two are going at it,its like they are fighting each other? and since they are both at about the same level at that particular time,they seem to equalize each other or something and kind of 'leave me out of it"?it just seems like its easier to actually cope and deal with when they are both flaring as opposed to having just that one area that is screaming at me.i don't know if anyone understands what i mean or not,it wouldn't be the first time,lol.but this really is freaky.it just seems much more tolerable in my head.

good luck LB and of course keep us posted on things.marcia

[LBUSH49]

I still have 2 boxes left in my closet at first they seemed to help but I was getting injections , right now I take oxycontin 20mg 3x's percocet 2every 4-6 hours and valium 10 mg 3 x's but it's been 4 years this Oct. without any increase and that might be my whole problem , I see my primary DR. this Friday .thanks LBUSH

[angel7]

Larry,

Have you tried a pain management center?

Deb

[angel7]

Well never mind my silly question - I just read the meds you are on.

Deb

[LBUSH49]

yes the DR.at the pain management clinic wants to take over my medications instead of my primary DR. since that is his field , He did the spinal stimulator operation on me and it worked wonders no bottom pain and no pain shooting down my legs , he said it would probably only take care of the pain in one leg but it got rid of pain in both legs other than my knees but that is a different issue . LBUSH

[angel7]

I'd like to hear what Dr. Young has to say regarding Larry's pain problems. I do think it's a good idea to have your pain management doctor take over all your pain meds.

Deb

[alan]

Have you discussed a pain pump with your doctor? A trial would indicate if having one implanted would help relieve your pain.

[LBUSH49]

Hi alan < I'll talk to my DR. about that , and I get the feeling DR Young doesn't like me that much due to me repeating myself but I have no control over that ,I also forget things all the time , my hands shake and my body twiches , and lately I've been dropping things a lot , even in the hospital ,even the nurses made coments about my hands twiching , sometimes my wife will say I told her that 5 times now , and that's why neither of my Daughters don't want to visit with me I'm living a very lonely life and I think that's why none of my old friends come by anymore , I have a seziure disorder , I don't know if that's the reason or why this is happening to me , I very nervous about all of this ,I have enough problems I don't need anymore ; LBUSH

[Karla523]

Larry,
I noticed that what you had to say regarding the spinal stim operation was very positive! I have been very down and negative before and it's not a fun place to be. I still struggle daily with being a big Eeyore, but I try not to be :) You said that nothing good ever happens to you, etc. I just wanted to point out that you mentioned one *wonderful* thing that happened for you. I am sure there are more good things to come for you, if you are open to it.

yes the DR.at the pain management clinic wants to take over my medications instead of my primary DR. since that is his field , He did the spinal stimulator operation on me and it worked wonders no bottom pain and no pain shooting down my legs , he said it would probably only take care of the pain in one leg but it got rid of pain in both legs other than my knees but that is a different issue . LBUSH

[Wise Young]

Hi alan < I'll talk to my DR. about that , and I get the feeling DR Young doesn't like me that much due to me repeating myself but I have no control over that ,I also forget things all the time , my hands shake and my body twiches , and lately I've been dropping things a lot , even in the hospital ,even the nurses made coments about my hands twiching , sometimes my wife will say I told her that 5 times now , and that's why neither of my Daughters don't want to visit with me I'm living a very lonely life and I think that's why none of my old friends come by anymore , I have a seziure disorder , I don't know if that's the reason or why this is happening to me , I very nervous about all of this ,I have enough problems I don't need anymore ; LBUSH

LBush, I like you. When I have nothing to add to a discussion, I don't post. Your problems are well beyond my experience.

Wise.

[dejerine]

LBush,
Could you please post that again. I am having trouble remembering it. Just kidding.

I am not liked very well around here by certain ones who do not share my sense of humor (or possibly suspect I don't have one), so I had decided not to post. However, your problem is near and dear to my heart. Namely, not remembering.

I have considered all sorts of things, medications being the most popular reason, particularly now that the truth is out that one of my drugs, klonopin, is little more than rohypnol diluted about twenty times. However, I had the memory problem from the inception of my injury. Being a little familiar with anatomy, I considered a neck injury not capable of causing memory problems.

Therefore, since none of my doctors had heard of central pain and didn't believe my symptoms anyway, I especially avoided mentioning memory loss. Then, lo and behold, one of Bogduk's students in New Zealand showed that CP patients have short term memory loss.

I was not familiar with precisely what that meant, but was only too glad to see it in print, and since then I have not been ashamed to mention it to my doctor. Bogduk is considered the greatest spinal anatomist in the world, even if he is down under in New Zealand. He is most famous for elucidating the innervation of the spinal facets, which have been coming on strong as a possible cause of neck/headache pain in patients with puzzling neck pain.

To get back to the story, I have since read a great deal about what memory experts mean by "short term memory". It is basically defined by standardized tests. However, my own careful analysis of the tests I think reveals our memory loss is a little different. I believe our memory loss is due to the inability of a damaged thalamus to prioritize, and conventional testing for short term memory loss is aimed at something related, but not identical.

Therefore, I am sympathetic to your memory changes. The problem for me is the trembling. Mild spasticity can cause trembling, but so can lots of other things. I measured the periodicity of my trembling and have found it to have changed over time, ie how many trembles per second. I can elicit it best by trying to put my thumb over the hose when spraying water. My thumb beats with a definite rhythmicity.

I have other positive physical exams for upper motor neuron injury (Hoffman's test), and I have some other manifestations of spasticity I cannot describe. Still, I do not know if all you experience is due to cord injury. I never could figure out why cord injury should cause memory loss. It seems only explainable via some related/consequential brain changes.

Now, as to Dr. Young. I assure you he likes you. He likes me and I am way more obnoxious than you. Seriously, anyone willing to listen to pain patients complain and even run a website to help them, cares a great deal. Doctors are just terribly busy and in this case, Dr. Young is humble and careful to reserve comments to areas where HE and MEDICINE are on solid grounds. It is amateurs like me who are free to speculate. When I think of what it takes for Dr. Young to deal with such a massive issue as SCI and pain, I cannot bear to hear anyone interpret his quietude as not liking them. He is actually showing that he cares by NOT speculating, I feel certain. And I am showing caring by speculating. That is the difference between amateurs and professionals. Dr. Young sits in boring meetings just for the chance to advocate for SCI and try to increase funding for studying our problem. That is caring that actually leads to cures, and we are all beneficiaries of his ability to endure sitting in public awareness and funding meetings.

It is understandable that pain patients are touchy, especially if the family is not right there behind you. However, we must not misread the reactions of others. People often care more about us than we realize, but actually, it is so hard to comfort someone in pain. Often as not, we step on toes when we attempt to help. I had this nice little cocker spaniel once, the sweetest dog you ever saw who got some gasoline on him and when I tried to grab him to wash it off, he bit me really hard and deep. Pain patients are sort of similar. That is why not so many doctors like that line of work. So rest easy, Dr. Young probably cares about SCI patients as much as anyone in the world, including about you. Doctors need a little emotional distance from patients just so they can think clearly and scientifically. If they broke down all the time, they couldn't care for anyone. Competency is so much more valuable than hand holding, although the latter feels better. I really think Dr. Young does a good balance of both. So don't feel alone. We are all with you, it is just that sometimes diagnoses are very difficult, and symptoms not yet put in their legitimate place by science. Doctors don't know what to make of certain things.

Your family seems to be having a problem understanding you, or perhaps you are having severe depression. I would talk to your doctor about this latter problem. Depression distorts reality. A family therapist might help the family reset itself in accordance with your injury, if you could afford such couseling. Of course, the therapist would have to believe in your credibility.

Best wishes to you and LOL. We will tremble and forget together. Now what was your post about?

P.S. I have always enjoyed reading your thoughtful posts LBush and hope you will continue.

[LBUSH49]

Today I went to my primary DR. and he increased my Oxycontin from 20MG 3X's to 30 MG 3 X'S and he thinks it's best for the pain managment clinic to handle my pain issues , and he also thinks that the REIKI treatment will help with my nerves and the shaking , he told me if I don't get any relief from this he will put me on a different antidepressant and I didn't talk to my primary DR. about any pain pump I'll wait till I go and start treatment at the pain management clinic thanks all who replied to this thread ; LBUSH