My bladder doesn't like pain meds I think

[ICLori]

Guys, I know you all must think I'm insane, I wonder myself even.

Here's been my experience with Elavil and other tricyclics and Atarax - they work for a few days, but each dose "hits" my bladder and irritates it so that eventually the irritation causes so much pain that it greatly overrides the ability of the medicine to block pain. With Atarax, I can handle the smallest dose once a day but when I try to take a "normal" size dose I get increased pain.

I'm starting to be afraid that the same thing is happening to me with Percocet, the bladder irritation.

It was working great when I only took it at night or every other night. Then the first day I was on it, it was great. Yesterday I started feeling more bladder pain (complicated by the fact that I took Neurontin which was a very strong irritant to my bladder) and today more bladder pain (again the Neurontin complicates it, so that I can't yet tell if it's the Neurontin messing me up or the Percocet.)

So I don't know if my bladder is hurting despite Percocet because of the Neurontin slowly working its way out and irritating me as it goes, or if the Percocet itself is behaving the same way with my bladder that the Elavil and Pamelor did. And Atarax. Giving with one hand and taking away with the other. Giving pain relief on the one hand but irritating my bladder more and more with each dose so that finally the irritation and pain override the pain relief.

I don't understand at all why my bladder is doing this. Again, I don't know for certain if it's the Percocet doing this, or the Neurontin going out of my system, since I know for a fact that Neurontin tore up my bladder since I could feel it hitting my bladder like a bomb each time I took it (and that was WITH percocet, I still felt so much pain!)

Maybe I'm panicking for no good reason, but if Percocet turns out like Elavil - helping at first, but if used regularly, causing me greater pain than ever - what will I do then? I guess Interstim and then just learn to live with the pain.

I'm just freaking out tonight because all this afternoon and tonight, my percocet hasn't been helping the pain at all. My urethra is just in so much pain it's throbbing and hurts so bad when I touch it. As if that whole system, bladder and urethra, is more inflammed than normal. So here I am with my nice dose of Percocet in my system, and I still can't sleep because my bladder hurts and I feel like I have to pee all the time.

If I did bladder removal, at least then I wouldn't have to worry about Elavil or Percocet inflamming my bladder further. Of course I would have other problems.

Today I got the phone number and address of a compounding pharmacy near where I live. I am going to ask my Army docs to write me a handwritten prescription (normally they use the computer system) so that I can buy out of pocket, some compounded Elavil that does not have any fillers or dyes. Well, they have to have some filler, but they will use a filler that doesn't bother people. That way, I can maybe see if it's the fillers/dyes that are killing my bladder with these meds, or the meds themselves. I really need to know that. I am hoping against hope that if I try Elavil that is compounded without dyes/fillers, it will help me instead of hurt me. I know I am grasping at straws at this point.

What a pickle to be in, huh? I'm so afraid to even post this because I know you all must think I'm insane or imagining things. I know of some people who are sensitive to one or two meds, but a whole long list like I've got??? And Percocet as well, apparently???? I'm taking Prelief with each dose, so it can't be the acid...?

I was so hoping that I could go on pain meds and live happily ever after. I guess if they let me try the patch, I would be free of the fillers and dyes, but the stuff would still go through my bladder as it's being broken down....but then I would know, if I got an inflammed bladder, that it was from the medicine itself and not the fillers. I just don't know of any pain medication that doesn't end up going through the bladder to be eliminated. And if my bladder is so hypsersensitive that it can't deal with any of the pain meds, not Elavil, not Percocet, not anything - then what?

I know it's my decision but I'm just feeling very frustrated and mad at my bladder and need to kind of vent. Oh gee and how am I going to break this to my pain doctor, when I was practically begging to be put on pain meds around the clock??? "Gee, Doc, my bladder doesn't like the pain meds, I have to stop, sorry..."

I think I have to try Interstim. Maybe Interstim would get me out of this mess, maybe the elimination of the urgency/frequency would be enough so that I wouldn't be so miserable with IC anymore. Maybe I could deal with the pain if only the urgency/frequency were taken out of the picture.

I feel like such a freak. I don't know of any other IC patient who has had this many stupid problems with the bladder reacting badly to so many medications.

I am going to continue on the Percocet at least a few more days in case it is just the Neurontin messing me up, within a few days I would imagine the Neurontin would be all gone I hope since I won't take it anymore...but if it IS the Percocet itself causing me increased bladder irritation and pain, what on earth do I do??? How insane is this for a pain med to actually stop working because it makes the bladder so much more irritated??

Thanks for letting me rant here a bit. Oh I hope this will never happen to any other IC'ers out there.

Blessings, Lori

[Mishka]

Hello,

I feel your pain! I am in the same situation with Percocet. I have a feeling it causes flares. It also doesn't work that well.

I've had 3 doctors, including my uro, say that Percocet is one of the least effective drugs for this type of pain. Unfortunately it's all I have right now, but in the future I'm going to push for another option. Could you do the same?

It is very frustrating to have it help and cause pain at the same time! Ugh.

Hope you feel better.

[ICLori]

Thank you so much, Mishka. I am going to see what else can be done.

I also just read a post in the 50 and over section of the message board, entitled something like "meds bothering bladder" can't remember exactly, but one lady who posted listed Percocet as one of the things that bothered her bladder.

I'm glad you don't think I'm insane, LOL! I think my pain docs will think I am insane, though.

Blessings, Lori

[Indy]

I have been taking 3 prelief with my nightime meds (I know you can't do that with neurontin). I think that helps.

[ICLori]

Hi, Indy, thank you, I have been taking two Prelief with each dose of Percocet but I can go up to three, for certain...

Blessings, Lori

[Mishka]

Hi again :)

He shouldn't think you are crazy. Just because one medicine doesn't work doesn't mean you don't need them. People often have to try numerous medications before finding one that works for them.

For me, Neurontin didn't work, Elavil turned me into a sobbing emotional wreck, anti inflammatories had no effect and on and on..I'm still trying to find a good pain management system. Percocet also makes me horribly nauseated, I have to take a Gravol with every dose and eat a lot or I will throw it all up.

If you are one 24/hr a day pain control, ask about time released meds or patches. Drugs like percocet, regular morphine etc are best for shert term acute pain. Long acting ones have less side effects.

Good luck!

[ICLori]

Thank you, Mishka. My problem with almost all of the meds used to treat IC or treat pain, is I get flares from them. Eventually they cause so much irritation with each repeated dose that I end up in constant bladder pain in spite of the pain relieving properties.

Last night was a good example of that - Percocet turned into my enemy, not my friend in the battle against bladder pain.

I don't even know if it is worth it to try the patch or something else - they will probably just bother my bladder too, like Percocet does.

One lady who reacted badly to percocet and many other meds, said she did well with Ultram.

I wish you good luck with trying other pain meds, hopefully they will not bother your bladder so much.

Blessings, Lori

[haylee86]

HI i was just wondering what meds or treatments everyone is on?

[haylee86]

i also was wondering if anyone on this site was from australia?

[Pain]

Lori, I think perhaps you need to slow down a bit and try to isolate the spikes in your bladder pain. I know you read a couple of people say that Percocet which is OXYCODONE seemed to irritate their bladders but in the research other than retention, most narcotics are not usual irritants. Neurontin can be though and again Neurontin was never approved for pain relief though used for it as they were thinking it would slow down the nerve impulses sent. They are now "rethinking" that in the medical community some now as the side effects of Neurontin can be quite intense. If anything, it might be the Tylenol in Percocet and, I would, as mentioned above, consider moving onto a long acting "pure" pain med if you are in 24/7 pain. There are many pain meds available to try. Since you posted that for the most part you were OK on Percocet..at least initially...I think if it was to irritate your bladder, it would have done so within the first six or so hours as it is excreted by then...from the first dose. It is perhaps a number of other factors spiking your pain and/or tolerance to the pain med itself. In order to see what works and what does not for pain, it is important to try and isolate the effect of each medication. You can only do that by introducing one at a time for a period of a week or two at least and the same with removing some from your daily regiman. Best of luck to you.

[haylee86]

also is anyone on the new steriod injections and if so how are you going with it?

[ICLori]

Hi, Pain, you are probably right, it might be the Neurontin causing this greatly increased pain and no relief from Percocet. Could a bad reaction to Neurontin cause this much pain? I guess it could...

I will stick with the Percocet for the time being. It could very well be the Tylenol causing my problems. I go back to the pain clinic on the...I think the 18th of August, for percutaneous nerve stimulation, I think I will ask about going on to methadone at that time. (They want to put me on Methadone for long-term relief.)

Blessings, Lori
P.S. The problem with me is, I'm seldom irritated by the first dose of any medicine. It was only after almost a week that I developed the irritation reaction to Elavil - worked great the first several days. Then I got less and less pain relief and more and more pain. Finally, it is to the point that even after I stopped it completely, if I would try it again, I got intense pain. Almost like an allergic reaction only antihistamines don't do a thing to ameliorate it. Neurontin is the only med I can think of that caused immediate pain....

[ICLori]

Would I have increased tolerance so soon in the game??? OH that is horrible. I don't want to escalate up to a huge dose and then have it stop working for me anyways...

Blessings, Lori

[ICLori]

Well, I went ahead and took a Percocet an hour ago or so, and so far so good, nice pain relief, no irritation. I will wait and see what happens in a few hours....

Maybe it was all just from the Neurontin, I mean if something really sets your bladder off, you could have pain for several days, right, even maybe a few days after you stop taking it? And maybe that's what is happening, maybe it's that the Percocet wasn't strong enough to overcome the bladder irritation.

I don't know, I'm so jumpy these days, so afraid. I've had so many disappointments before with meds - Elavil, Pamelor, higher doses of Atarax all seemed so promising at first then "turned" on me. I'm worried it will happen again with pain meds so when I see what I think are signs of it happening I worry. But maybe it was all just due to that stupid Neurontin messing up my stupid bladder. Grrrr. I wish I knew for certain...but I will just keep taking the Percocet for now. Anyway I can't just stop on my own because I am under a pain contract so I'd need their permission to stop.

Blessings, Lori

[Pain]

No one can answer your question(s) specifically without having all your info, etc. but my guess would be that a lot of these are not "irritants" but rather just not the proper/enough treatment for your pain and hence you are still feeling it spike through the medications. Please do NOT just cease taking any medications without first speaking to your doctor, Neurontin included unless it was just one or two doses. Depending on the doses, how long you were taking it, etc. it can be dangerous to just suddenly stop taking a particular medication.

I have taken 68 different medications along my 4 1/2 year ride and never once have I been pain free. I've been on heavy duty pain meds for most of that time and again, never once pain free. But I do think you need to try one thing at a time and introduce it, give your body a few weeks to adjust to the medication (unless the side effects are serious) and then see how you do. With pain meds it is often necessary to titrate up to the appropriate dose to control your pain and/or with long term pain meds, also introduce a short acting one for break thru pain which is the regime most are put on.

I'm not saying all of these are not irritating your bladder but research doesn't seem to indicate that most of these are or can be bladder irritants. Each person is different for sure but it would be my guess that your bladder is just spiking in pain due to your disease more so than these particular meds. But the only way to tell that is to isolate the effect of each one. Even the inert additives in most narcotic pain meds are not "known" irritants to the bladder. By pain meds I mean opiate/opioids. That class does not include Elavil, Neurontin, etc.

An interesting note re: meds. Pyridium or Pyridium Plus always helped my pain back when I had just plain old infections or even flares which were simply due to sexual activity, etc. back in my 20's. Pyridium does absolutely nothing for the 24/7 pain I have now. Nothing at all. Which is fine by me because orange pee is not something I cherished. So my theory to my doctors is that the nerves sending the pain are far beneath the surface of the bladder which is where pyridium "numbs" as it goes through. Some take it over long periods. At one time there was much concern over potential kidney damage at doing so and it is NOT approved or should I say recommended for long term use though some here take it. Anyway...not sure if you're taken P Plus but it might be something to try and see if it helps the extra bad times. For me it does nothing because my pain must be coming from deeper within the walls of the bladder but for others it does help some.

Please be very careful making any changes to your medications without your doctors OK and supervision. Be especially careful with Neurontin and narcotic pain meds. These are not drugs to just start and stop abuptly. Speaking of Neurontin, just saw there is a class action suit now being launched against it/the medical community for it being prescribed for non approved uses and causing side effects and even worse.

There are many drugs today that are prescribed outside of their approved use but sometimes that can come back to haunt the manufacturer, the doctors and/or the patients. It never did anything for my pain but boy oh boy did it screw with my system overall...I was like a walking drunk with a short circuited brain LOL. And when you think about it, it was developed for SEIZURE disorders so indeed it affects the brain waves and nerve impulses throughout the body. Some take it successfully but as I say with all medications, always be your own best advocate. DO NOT go by what others tell you to do. Do your own research, be thorough and then work with your physicians and pharmacists. Pharmacists can often times be very helpful to discuss specific meds with...never should take the place of docs but can be helpful nonetheless.

I agree it is scary to increase doses of pain meds. With some, such as Oxycontin, there is no "ceiling" meaning that if need be, a doctor can keep increasing the dosage of a particular patient as necessary due to tolerance with no "max" they must stop it before "damage occurs". This info based on their clinical trials. But it is scary in that you are at the mercy of the medical industry and at any time they/DEA can decide...OK..you have to stop these medications now. That has always scared me...because withdrawal is not fun for anyone. Dependence is NOT the same as addiction but so many doctors because of the media just don't "get that". I know people who must take doses of narcotic pain meds so high they would kill an opiate naive patient but because they have taken them so long, their tolerance levels make it necessary. I have resisted up'ing my doses now but am suffering for it with almost back to square one pain as if I'm not taking ANY medications even though I am due to tolerance. Sad thing is for me, the SIDE EFFECTS NEVER GO AWAY..even after years and building up tolerance. So I'm "just lucky" that way I guess.

Best of luck!

[ICLori]

Hi, Pain, wow, thank you for the nice long message helping me!

I won't stop any meds without the doc's say so, believe me! I'm on a pain contract, LOL, don't want to mess up! I will not increase nor decrease any doses of anything they give me, without their approval. When I signed my pain contract, that's what I agreed to. I've been putting in several calls to the pain clinic....

The Neurontin was something that was just given to me this week to try. I had never taken it before in my life. Within half an hour after my first dose, I had extreme bladder pain that continued the next day. I took the second dose the second night, and again got horrible bladder pain, even worse than the day before. So I was pretty sure the Neurontin was causing bladder pain, and both days I left messages at the pain clinic asking my doctor for guidance. On the second day, A doc called me back, not MY doc because she was gone, but he told me to discontinue the Neurontin so that is what I did. He probably felt there was no problem just stopping it cold turkey since I had only taken it, at an extremely low dose, at night only, for two days total in my life.

I'm like you and find that pyridium does nothing for me. It used to, back when I had bladder infections, but like you, my pain must be coming from deeper layers now.

As far as I know, Elavil, Pamelor, Effexor, Atarax, Neurontin are not "known" irritants to the bladder but I have a bunch of "testimonies" from people who found these medicines greatly increased their bladder pain. Are they mistaken, or lying? I don't think so. I think the problem lies in the phrase "known irritants." Most research on whether or not a med affects a bladder is done on non-IC patients. If they did research on each medicine using only IC patients, they might find a whole bunch of meds irritate a whole bunch of us IC'ers.

Again, it seems to be a very individual thing with IC'ers. Some IC'ers can tolerate almost any medicine, and some of us get increased bladder pain with almost every medicine. I do not know if I am reacting to the medicine itself, the dyes (which ARE known irritants to bladders) or the fillers, but there is no mistaking the increased pain that happens.

Some IC'ers can eat and drink almost everything without increased pain. Some of us have a short list of no-no's for the bladder, and some of us have a terribly long list of no-no's for the bladder. I think it is the same situation with meds, for us IC'ers.

I hate to hear that you are still in pain despite so many meds. Do you feel they are doing you any good at all at this point? Do you think you might have exactly the same level of pain, if they discontued all your meds, or are they helping you some? And the side effects - yuck!

I am trying to figure out what I should ask for, at my pain clinic, if I end up developing tolerance. I think I would honestly prefer being weaned off meds for a period, a month or two or more, before starting them again. Would that be long enough to get rid of tolerance, I wonder, or is it like an alcoholic who, years after quitting drinking, starts again and the first day is back to a fifth of booze a day?

I do not want to increase my meds, I would rather go through bladder removal than go down that path.

I think you are right, I think that there is increased irritation still in my bladder because of the Neurontin nightmare, and it will take some time for my bladder to recover and maybe my Percocet, rather than irritating me, simply isn't helping enough because the pain is greater now. It's so hard to know for sure, you know? When the pain comes back, you wonder - is it because my bladder doesn't like this pain med? Or because the dose isn't high enough? Or because the Neurontin messed up my bladder temporarily (which it surely did, I could feel it hit my bladder like a bomb each night it was awful)?

Well the sensible thing to do is just continue on the Percocet for awhile until the pain clinic can help me figure this thing out....

Thank you for your message and all the help....hope you feel better soon...I hope and pray for all of us that the new research will quickly lead to a really effective treatment and then we can all go off pain meds and other stuff.

Blessings, Lori

[ICNDonna]

Have you telephoned your doctor's office to report your possible reaction to medications ordered? If not, I suggest you do so today. You need to be working with your physician on this one.

Warm encouraging hugs,
Donna

[ICLori]

Hi, ICDonna (I'm so glad you are back!) I DID call the pain clinic doctors (they are my doctors now) the very first morning after my bad reaction to Neurontin. (The pain clinic doc was the one who ordered the Neurontin for me.)

I didn't get an answer back that day, so I took the med again that next night, reacted badly again, put in another phone call the next morning to the same pain clinic.

This time, a doctor (not mine, she is gone somewhere, not sure if I'll ever see her again or not, you know how military health care is, they move around alot so you get a different doctor oftentimes each visit you go in for) from the pain clinic called me back and said to discontinue the Neurontin since I was having such a bad reaction to it. He had my records in front of him and was able to see that I had only been taking the Neurontin for 2 nights, so I wasn't dependent on it yet and could stop it cold turkey with no problems.

At this point in time, the pain clinic IS my only doctor. I do have an appointment to go see a urogyn to ask about Interstim on August 16th but he or she is not my doctor yet.

I figure when I have a problem with a med that the pain clinic doctors prescribe, it makes sense to call the doctors at that clinic to report adverse reactions since they are the ones prescribing the med(s) and they are the ones who will give me advice as to what to do, to raise the dose, lower the dose, discontinue etc.

If another doctor prescribes a different med, lets say my new urogyn prescribes estrogen cream and I get a rash from it, I would then call the urogyn who prescribed it to report my symptoms. At least I think that makes the most sense, LOL....

So don't worry everyone, I did exactly the right thing, I didn't take any action on my own, I called the docs who prescribed me the Neurontin, and described my symptoms, and then followed their advice to discontinue the medication.

The only thing I'm wondering is, should I report the breakthrough pain I am having or just leave it until my next visit/appointment with them...and I am leaning towards just telling them my next visit. Because maybe by then it will have resolved itself.

Blessings, Lori

[Mishka]

Hi Lori,

Methadone is also something I am going to talk to my doctor about. In a book I have that talks about different medications, it said that Methadone is one of the best for IC. Apparently you DON'T build up a tolerance to that medication. I may be wrong, but that's what it said. Ask your docs :)

[ICLori]

Thank you so much, Mishka. I'm just scared a bit of the side effects. I have heard of weight gain up to 70 lbs. a year reported, sedation so bad you can't work or drive a car or do normal activities, etc. Those don't sound too good to me and I am kind of afraid...

More motivation for me to take a chance on Interstim I think..
Blessings, Lori

[Babs RN]

Lori,
You are definitely not crazy or spastic about any of this. Everyone responds differently-for example, my mother in law cannot even take Prilosec for GERD because she is so sensitive to meds. I, on the other hand can take all sorts of stuff, and thanks to my cast iron GI tract. By the way, here's something to make you laugh--before I got canned at Nellis for being broken, I helped take care of one of the AMEDD recruiting batallions 1SG. I said in passing that I had been an Army nurse in the early 90's. He asked if there was anyway I would consider coming back on active duty--LOL. I told him my body has been a train wreck since I got out and that I had a bladder disoder that would not be :dizzy: conducive to living in a co-ed tent. He gave me his card and said we can work around it. HEE-HEE--right. You gotta love the military sometimes. I hope the pain behaves itself today. Hang in there sweetie.


Hugs and HOOAH(LOL, just trying to be funny),
Barb

[Pain]

Hi Lori...I do hope you find something that will help. I will say this...without pain meds I would be D-E-A-D. Not trying to be dramatic but it's the truth.

Weaning off of pain meds all together is not an option for me unless it's a six feet under option.

Just when I think they are not working anymore (as yes my tolerance has increased) as soon as they wear off completely I know they WERE working some still because of how severe it is when they totally wear off.

But...I do need to increase my dosages and will work with my pain doc to do so soon.

For me pain meds are the only option I have left. Not a fun place to be in considering I am only 45 years old and the thought of living like this, on these medications for another 20 years or more is bad but not as bad as trying to imagine living that long without them.

I am very senstive to them because of the car sickness nausea that almost everyone experiences for a few days/weeks when they first begin taking opiate/opioid meds...I still have severely after over four years straight on them. This frustrates my pain doc AND me both but we've tried everything. None of the anti-nausea drugs work..they even tried the ones given for severe chemo nausea on me.

As I posted elsewhere...it sucks to be me in that the nausea is due to middle ear and other damage to the receptors that pain meds attach to and therefore unlike most, the nausea for me will never go away though at least I don't barf 24/7 anymore. I cannot ride in a car for even a block without the same thing happening to me. I damaged my inner ear when I was 11 and since then it's been one nauseated lifetime.

So I do have to remain laying down much of the time. But without pain meds...it is much worse. My doctors have rated my pain as "end stage cancer pain" level which sounds about right to me.

My "working" diagnosis is still IC but since my pain is so contant and severe some, even myself, wonder at times if there isn't some more damage beyond typical IC.

I continue to monitor all medical journals, studies, etc. with hope but I also must accept this is my life for now. As my pain doctor said...he does not want to see me put my life on hold "waiting" for the miracle that may never happen.

Sad part is most of his patients lives are greatly improved with the meds. Mine is not because of my situation. It's hard on him just as it is me. Most people do not have the nausea if they take long acting pain meds over any period of time. I'm just "lucky" I guess.

But I will say this. IF a person is in CONSTANT SEVERE 24/7 PAIN, they should for sure be on a long acting pain med not short acting. Much better on the body and much better pain control as there are no ups and downs with it. And then something for breakthru if the long term doses wear off before 12 hours which for many, me included they do.

I "wish" I could just take pain meds "as needed". But my "as needed" is 24/7 so long acting is my miracle. There are plenty of options for long acting. Often times patients must try several to find the right medication for them. Though it's hard, if the side effects are not serious, you must try to "ride through them" for a few weeks to judge how the medication will work for you long term. As most of us "adjust" after that period of time.

Again..hang in there. Keep us posted and best of luck!

P.S. My anger increases every day that a handful of drug addicts and the over-dramatic media puts my "lifeline" at risk more as each day passes. I would like for them to walk in my PAIN shoes for just one day to see why these medications SAVE far more lives than they take. In fact, the medications do NOT take lives..the people taking them do! OK..off the soap box.

[kadi]

Tylenol is something I use very very rarely, because I took it once for a headache & my bladder hurt so bad I forgot about my head. I can "get away" with it if I take 4 Preliefs with 2 Tylenols, but don't think that's a good idea for regular use.

Please talk more with your doctor... I wish I had something to offer you!!!
Hugs,

[Pain]

Lori..I'm sure you're already aware of this but...Oxycontin is the same exact active pain medication that is in Percocet (Oxycodone) only it:

1) Is long acting - one dose every 12 hours

and

2) Does not contain any Tylenol

You can also obtain pure Oxycodone "short acting" without Tylenol commonly referred to as Oxy IR.

[BetsyJ]

I see a pain doctor- He has prescribed time release Oxycontin and percocet for breakthrough pain- It is the only way I can work (I only take percocet after I am home). I still have pain even with all that, but it is not unbearable and I can work- I wish there was something to make me feel close to normal. The side effects (major constipation) are difficult and I feel I am living from one pain pill to the next. But I feel like it has given me back half of my life- still searching for the other half (enjoying life, riding a bike, going on a trip, seeing friends etc.)

[mallenajolie]

This is the med that practically save my life! I was taking Norco and percocet with little relief.I guess they have come up with another durg for oxycontin without all the hoopla..luckily my uro treats my pain, but I am under pretty close watch...every month or so..if its acting up twice a month. Luckily this has been rare. It does make me a little tired, but I am trying to loose some weight. Not terribly overweight, but I would like to lose about 10 pounds.

[BetsyJ]

I am taking 20 mg. time release 3 times a day and I still have pain. What dose are you taking?

[Miki]

I am amazed at all the different answers to the way pain meds react.
I am now scared since the oxycontin (long acting) didn't work for me at all a few months ago, and the Lortabs stopped working also. I have been given percocets, and now I hear they are oxycontin. This scares me, so I am having a slight flare right now, and have decided to take one to see if it will help.
I would not usually take a med with this slight a flare, but I need to find out my reaction to the drug. I know it worked on me for my pain when I had carpel tunnel surgery. It seemed to be stronger then the lortabs which didn't even touch the pain.

We are all so different and it is so hard to be us! Can you imagine the doctors?
They hand out the meds, figuring that this is a normal good pain killer, and boom, no luck.
My next option is Dilaudid. I took that a long time ago for a hacking bronchitis cough. I thought it was fine. Then you hear how certain drugs are so "dangerous". I don't understand.
We are more of a danger to ourselves if we don't have pain relief.
I am so sick of hearing about how you will become an addict, etc etc. I get this from my high pain tolerance sister in law DR. She seems to feel that I am on too many drugs and that to get rid of a migraine 2 tylonal is all one needs. Wow, how I wish that were the case. When she got on my case, I was really upset. I know she was just being concerned, but she has no idea how low my pain tolerance is, and how high my tolerance to pain meds is. It is reverse proportions.
But, give me almost any other drug and I have to cut into 1/4's and it will react on me as if I were taking a full dose. My poor pain clinic people and my RX shrink who deals with my nutty mind.

I am surprised that many of you are not on anti-depressants. I think I have tried every one out that there is. Except the tri-cyl. (elavil etc). I did at one point ask shrink for the stuff, but since I used to fall asleep on like 5 mgs of the stuff, he didn't think it would be good for me.
Maybe I need to talk with him and the pain clinic about trying it again?
I am tired all the time. In bed most of the time now. Forget working, I never know when I will need to take more pain meds and sit on the heating pad.
I am also amazed by how young so many of you are. I have had this for over 22 years, and I don't even know now how I managed to deal with the pain for the years I was teaching. Maybe I had less pain, or maybe it has gotten worse over time.
Most probably the ans. is that I have gotten less tolerant of the disease.
I talked to the pain clinic about the real pump. Not the interstim which is just a tens unit put in your back. I hate tens units. The stupid zapping is worse to me than the pain. It doesn't take the pain away, it just zaps you so you feel a different type of annoying pain, and that takes your mind off the bladder. It must do something else too, since they use it for incontinence. I still don't understand that.

I still have my home tens unit from my knee surgery, and plantar facititis. (both indivdually killed my teaching for at least 6-9 months each. I was supposed to be ok in 6-8 weeks, forgetaboutit.) Anyway, somewhere on here, someone discribed how to use the tens unit for IC outside body. I think I may try that.

Thank you all for such interesting testimonies about the drugs you take, and how they affect you, or affected you.

My duregestic patch works for normal times. The flares are getting to be the problem now. They are coming more frequently than 6 months ago.
I guess it is all a crap shoot in this IC world. (If in fact I have Ic, since I can hold a lot in my bladder, but the main problem is my urethea and feeling like I have to pee constantly.)

miki

[carlav19]

Hey-
Just thought I'd let you know that I have been taking Uristat (over the counter bladder pain relief drug) for about 5 yrs now and it works for me. It is located by the condom and monitat things in Walgreens, other pharmacies and in most Walmarts. Try it and let me know how it works for you. I know I feel like this pain drug has saved my life and given me a chance to be slightly "normal" again. It doesn't cure anything...but when the pain gets too ruff and drinking a ton of water hasn't helped enough, pop these babies and within a few hours (after a couple doses) you should be feeling much better.

Carlav19

[Cheries]

ICLori- I have the same problem with meds!!!! I do not believe it is just your pain spiking through. There must be some common ingredient in these meds which FLARE the bladder! Until we find out what it is we will just continue having the same problem. I am trying to research it now and will be trying to speak with pharmacists to help me. I also reacted to neurontin. I tend to get a strange, horrible sensation in my bladder after certain meds and get terrible spasms. I am determined to find out what is causing this. Tell me what meds you have also had sensitivity to. Perhaps we can figure this out together somehow.

[Miki]

Lori:
These are the meds that have caused me to stop them:
Morphine, dauildid (sp), various antidepress. don't remember which., MScodine(sp), pseduophed,

I know I can take:
Fentanyl, lortab, vicodin, codine,neurtonin, zanaflex, flexeril, demerol, regular stuff (tylonal etc)
sometimes can take advil, but not regularly, it makes stomach bad. Same with Pyridium, makes stomach bad.
I use it on as needed basis.

Oxycontin has stopped working for me. I tried it last oct. and I got NO relief at all. The Duragestic patches work for me, but have to be careful with them, they make me tired.
Since I got my meniere's attack in Dec, which is just very slowly getting better, I can no longer drive. Between the meds, and the dizzies from the MM. I am very restricted in things that I can do.
But then I am restricted by how I feel anyway, just like the rest of us.

Today, I was ok, but felt like I had to pee, which is normal, I generally will ignore the feelings until I really have to go.
Today for the past hour I was getting spasms that were like major urgency...didn't wet or anything, just this sharp urge. I would move around, and it would disappear. Then it would come back. I was having this about every 10 mins. Finally, I went to the bathroom, and now it has been over a half hour and I am at my regular 2.5 feeling of always having to pee. Just not a sharp urge that hits and goes away. That is weird for me.

Usually if I get those pains, it means flare time. This time, I guess it was not the same. Who knows.
Between IC and MM. I get really angry. I have to try to calm myself because that will cause even worse problems.
Miki

[ICLori]

My doctors say that when patients exhibit this sensitivity to drugs, they are sensitive to almost all the drugs, so they move to a surgical solution right away without trying any other meds. Basically they push Interstim for anyone who, like me, has increased bladder pain with meds instead of decreased pain. They don't know why some of us have this problem, while others are helped, but they do know that some of us are like this, they've seen it before, and they know that for those of us who have this problem, we will flare with nearly all drugs.

Anyway, the list is soooo long of meds that have flared me...sigh. All antidepressants, including the tricyclic ones (especially those in fact!) All antihistamines, Neurontin, Percocet, all OTC pain relievers (except aspirin, I think aspirin actually helps me ever so slightly), pyridium or other meds like that, lidocaine, ditropan, Elmiron, most antibiotics...I'm sure there are more meds I've tried that have flared me instead of helping me but you get the picture. Basically nearly every medicine on the planet, gives me a flare instead of helping me. No matter what I take with it, no matter how I take it, no matter what dose, etc.

This is really a bad thing, for those of us who get flares from nearly all meds. It's very disappointing that the meds that help nearly everyone make us worse. And some doctors, who aren't experienced enough with IC, actually think we are lying or crazy when we try to report this!

But, anyway, no, you aren't alone in this. Some of us - a minority of IC patients - have this reaction. The doctors do not appear to know why. If you find out why...or how to stop this bad reaction...please share with us!

Blessings, Lori

[Greta Guns]

Lori- Get yourself some ice packs and place them between your legs or wherever the pain is. Its a life saver!

[ICLori]

Thank you, Greta. I have found though that ice makes my pain worse - only heat helps me. And I spent a lot of time with a hot water bottle between my legs, yeah, but that's no life.... :(

Blessings,
Lori

[sweetangel2080]

hi Lori,
how are you feeling now? Is the percocet helping? I think I remember you posting that ultram was okay - could you try that instead or did it not give enough pain relief?
am sorry you had to go off cyclosporine A, but it may be best for your kidneys - are they doing regular checks to see how they are when off cyclosporine A?

I hope you find the right pain relief soon- I know exactly how you feel, the only way I get a little relief is a heat pad between the legs!

[ICLori]

Hi, Sweetangel, thank you for asking! I know you are hurting now, it's kind of you to ask when you are hurting yourself. I hope you will feel better soon.

I'm having IC pain again. This lower dose is just not effective, unfortunately.

Ultram gives me excellent relief, and I could manage very well if I could find a doctor who would just write me a nice big prescription with lots of refills - or a new prescription every month - but every doctor I have ever met, does not want to prescribe me more than a few pain pills. They say pain pills of any type (except Elavil, or OTC pain meds, and those don't work for me, they increase my bladder pain) are bad for me. The pain management types want to put me on methadone, and have me on it 24/7 so they can control the dose and make sure I'm taking exactly what they say, and the other regular doctors want me on nothing. I don't want or need 24/7, I need pain relief mostly at night and occasionally during the day. But I can not find one doctor who will believe I am in pain, who will trust me enough to let me take pain meds as needed. Not one f-ing doctor. Not one.

I think I am going to go in to my doctor and ask for a hypogastric plexus block. That is the one thing I have not yet tried. It's very risky, I've heard, and I think very painful, but it might give me relief, and it's not a dreaded pain pill.

Sometimes I really hate the way doctors refuse to treat pain. Well, always I hate that.

Blessings,
Lori

[julie grace]

20 years ago I had symptoms of IC.. tho i didnt know it was that at the time. I just had unrelenting urgency, needing the bathroom day and night. Doctors treated me for cystitus with no success, so i had a bladder stretch after which the symptoms intensified including pain, spasms,and constant pressure. More treatment involved drugs to pacify the bladder spasm. The doctors looked inside my bladder and saw it was irritated, red and scarred. they injected the bladder wall with drugs to try and relax the bladder muscle as it was also in spasm. After treatment I always felt crippled. The walk home from the doctors was painful. my bladder could feel every step. My symptoms continued to intensify.. i could feel my footsteps and the bumps in the road when riding in a car. Nothing brought relief. The doctors wanted to give my bladder cauterization treatment. I refused. They predicted that i would lose the function of my bladder if i did not get treatment. i still refused and from that day i have not taken drugs nor medical treatment of any kind. It is the best decision i ever made. Slowly my bladder has been heealing itself. The body is its own healer if you give it the nutrients and help it needs. I still have IC but the severity of my symptoms have deminished to maneagle bouts of frequency. I make sure I drink plenty of fluids and keep to a healthy diet. At night if i have trouble sleeping i use a hot water bottle. The warmth seems to help. I also find that avoiding going until you really really have to helps the IC attack to go away sooner. Ive also noticed that if I don't buy into the whole 'anxiety' that comes with this condition, ie. remain mentally calm, breathe deeply, relax, then the physical symptoms deminish and the attack passes by. I might not be 100% better but at least i still have a fully functioning bladder, and my symptoms are maneagle, and i have found mental peace despite it.

[sueworld]

Well add me to the 'sensitive to all meds' list.

I've been like this for many years, slowly finding that more an more drugs irritated my bladder, until I ended up not being able to take anyhting. I can't breath fresh paint, nor touch anything that has oil based products in them, such as oil based clay, (I was a sculptor till I became too ill to work) or oil based hand creams.

I'm also on an extremely limited diet, and now can only eat carrots, chicken and few other vegetables.

Thing is I've recently been diagnosed with Hashimotos disease and I desperately need thyroxine, but I haven't found anything that doesn't result in giving me horrendous bladder pain and spasms.

I'm more ill now with the effects of my damaged thyroid then I am with my IC. I heal very slowly, get nerve pain all over my body, and feel so exhausted all the time that I can barely make it out of the house to get my food in. I simply don't know what to do, except let the Uro's 'pull me about' in varied painful ways (after my last cystoscopy I've managed to keep away from hospitals, and especially sadists calling themselves urologists!) and then push them to remove my bladder if I'm going to get any quality of life back. My doctor said that I probably only had a couple more years before my thyroid 'crashes' completely and then all hell will be let loose. *sigh*

What a disease eh? I feel so alone being like this, even amongst other IC sufferers as until now reading all your posts I'd hadn't found anybody who was as badly effected to chemicals as I.

Sometimes I just think it would be easier to let 'nature' take it's course and just lie down and die.

[julie grace]

have you tried going to a naturopath? Maybe there is a supplement that could help that you might be able to tolerate. I gave up on doctors 18 years ago and never looked back. Those first two years of I.C were hell and the visits to the doctors probing my bladder and giving me drugs only made it worse. Turning to naturopath and caring for my overall health, over time my bladder has healed and i have been able to tolerate more and more foods. I still have reactions at times but they are bearable.
The limited diet could leave you lacking in vital minerals and vitamins needed for the maintainance of the rest of your body. The stress of this illness could be exhausting your adrenals leaving you tired all the time.
Sometimes a corse of natural treatment...ie supplements or eating beneficial foods, might irritate the bladder but over time as your body gets healthier its possible that the bladder might also heal itself. A good naturopath will be able to dianose what your body needs. Seaweed,and kelp are really good sources of iodine, beneficial to the thyroid. It's possible your bladder will torlerate seaweed as it is also alkalising. Just my own hunch on the whole I.C delemma is that we lack minerals...calcium and magnesium... they help to buffer acidity and regulate water in our bodies (i think?) Blackstrap molasses. food yeast and lecithin are my own latest endeavours to conquer my I.C. Also drinking Dandelion coffee. And plenty of raw veges and sprouted seeds. Sprouted seeds have all your vitamins and minerals in them. So far I feel heaps healthier... I still suffer bladder fequency but im feeling positive that over time this will improve. My bladder capacity, has increased over the years, and this diet should help that to continue improving i hope. There are internet sites that recommend Glucossomine,and other supplements. I'm too poor to try all this stuff, but it sounds pretty good.
Also try Accupuncture... When I first left medical treatment, I went to an accupuncturist. They gave me a warm clay treatment which was really soothing and comforting. It sounds like you could do with something like that. Good luck.

[sueworld]

Thanks for the advice love, but all the foods in Iodine cause me to flare badly, which not a surprise really considering what Iodine does to an open wound. *g*

I ran out of money ages ago, and can't afford to see any other specialists. As it is I tried seeing a nutritionist to try and eat foods to help myself that way, but I reacted against all of them sadly.

It's catch 22 with a highly sensitive bladder. You need these foods, but your bladder doesn't! :lmao:

I tried acupuncture and it did nothing for me I'm afraid. All the supplements I've tried have caused me bladder problems too. I just don't know why I'm this sensitive!

I'm afraid I seem to fall into this small percentage of people who just can't be helped, which doesn't do much for my mental health I can tell you.

[thomp1214]

Elmiron, of course, UTA (stuff that turns your pee colors), advil and a very, very, very strict and plain diet that includes absolutely NO acid irritants whatsoever. Definitely do not take Vitamin C either. It sent me into a tailspin. Also, drink a lot of water.

[Michelle in KC]

I know that each of us react differently to different medications.

It must be frustrating for you. Trial and error is all you can do, unless you just stop taking all meds.

Prayers to you.
Michelle in AR

[SandyRN]

Just an FYI, this thread is from 2004.

[Fairycove1]

Hi. I have the same problem with pain meds. This started before I knew I had IC. I would only take half of the dose of my pain meds and after a few days, my bladder felt heavy and irritated. I usually drink a ton of water if I have to take meds. I'm not sure what IC feels like to others, but for me it's more of a heaviness that never goes away unless my bladder is somewhat full. I have to constantly drink water. On the days that I feel good, I try to get alot done because it's only a matter of time before "the old familiar feeling" sets in. It really affects me mentally too.. I wonder why I couldn't have been blessed with a good bladder. This all started about 8 years ago when i got alot of pressure and pain and was urinating blood. The doctor's always came back and said I didn't have a UTI so I knew smthing else was wrong. Each person is different and I had to finally listen to my body and find a good urogynecologist. I have alot to say about this condition and this is my first post.

[ChrisNes]

Hey, The doctor I went to in Bloomington Minneapolis Minnesota said I have PFD, a-long with all of my other pain...so the list goes on he wants me to do PFT with a PT . He had no problem giving me pain meds of Tramadahl s.p. 50mgs for 60 days. and then he tells me to have a trial interstim put in for IC, IBS, CPP, PFD, and CBackPain curv in spine. He tells me they are all linked through the spine and this Interstim will help, I have 3 months to decide. I have an appointment with the pain center here on the 8th and my first PT for PFD on the 11th. I also have bursitis in R-hip and knee, FMS, endometrosis, have had 2 posterier repairs, a burch, sling, and bladder tack, CFS and depression, TAH ...etc...
I hope I have some good news when I am finished with the pain cl...I have not heard any good things about this pain clinic in ND:bonk::bonk::bonk:

[Kari_Lynn]

Hey,

Im currently taking Atarax and Visteral*. Had two bladder distentions. (very very painful when you wake up but after a few days of pain it settles down and frequency is down)

Been at least one year since my last one...

Was ok but everything got really bad this weekend!!

Writing from my bathroom/Had to call into work/ Can't fuction let alone WORK.

Very depressing. Waiting to hear about good urologist in Michigan. Also going to talk to my current doctor about seeing pain mangament.

Ah been taking ibprophen religiously every few hours.

Just praying and hoping this flare will STOP soon, Please?!