Help it's been awhile

[patricia1]

Hello everyone it's been quite awhile since I have posted anything on here..I am on FB alot more..But I need help...

I started a new with a new Pain Management doctor on Saturday...I was taking lortabs and Ultram to manage my pain..For me the Ultram is the best thing to help with my bladder pain and the lortabs helped the back pain..So anyways he switched me to MS-Cotin 15mg 12 hour release tablets..I can still use my Ultram but he didnt give me a new prescirption and my Ultram ran out Sunday morning..I started the Ms-Cotin today and I am MISERABLE I am not sure if its because I ran out of Ultram or the other is not strong enough or what..I wont hear anything back from the PM office till after 5 today..Has or is anyone else on this for their IC pain

[Jessica12974]

Hi! I was on MS Contin 15 mg in the past and it was useless! Did nothing for the pain just made me very drowsy! At that time I was on the 15 mg MS Contin 3 times a day with Norcos 4 X a day for break-thru pain. The Norcos were way more effective than the MS Contin. The MS Contin alone did nothing. A 5 mg percocet worked better for me than that. For others it works great but I read that some people just dont respond to morphine and i think i am one of those people. During past hospitalisations i was given IV morphine 5 mg at a time and it did nothing for me and was in major pain. But a simple Vicodin or percocet make a difference. MS Contin might not be for you. Good luck in finding something that works for you! Im in a dilemma cause ive had the same pain Dr for 2 years and have had a "normal" life with the meds that I am on and have been doing fine but now he says it is time to do the Interstim surgery(which i read is NOT for IC pain) or come off the meds. So i feel like my life as i know it is over and i dont know what i will do. Praying that Dr Moldwin can help me. i have an appt with him at the end of this month. Take care and good luck! Wishing you pain free days! Hugs!

Jessica

My current meds:
Oxycontin 20 mg 3x
Percocet 10 mg 2x break-thru pain
Metformin 500 mg 3x (Diabetes)
Synthroid 88 mcg (thyroid)
Xanax (when needed)

[Jessica12974]

Hi again! I just read and realised that you had the Interstim implanted and removed! my Dr is "forcing" me to get it or go off meds and suffer. I KNOW for a fact that the surgery is very expensive and he only cares about his pockets. Were you talked into getting the Interstim or lied to that it would be the miracle for your IC pain? i have read horror stories of patients who have had it done and it caused them more pain and had to remove it or adjust it several times cause it was faulty or did not work right. Read that it can cause nerve damage amongst other things.

[patricia1]

Thanks for the reply on the medicine...I appreciate it

As for the Stim I had my first one implanted in 2001...At that time it was still rather new on the market for IC and I was like my doctors 4 patient..At first it did help with my freg and urgency (NEVER DID HELP MY PAIN) but when I first had it implanted and awoke without the feeling of having to go to the bathroom I was elated..It worked for about 6 months then I had 2 car wrecks in the same day and the wires moved but bc I lost my health insurance this doctor wanted nothing to do with me..And I was having some serious issues with the InterStim itself...I finally found a doctor who was willing to help we did a removal and implanted a 2nd one in 2005 it still did not work right..Only 2 out of the 4 leads would work so in 2007 we just choose complete removal...The one thing it never helped with was my pain pelvic and back..It did help witht the urgency and freq pain but not the other...And depending on what type of pain you have is whether or not it will help..I get mad at doctors who push this on their patients..I say there are long term effects with this..its not like a medicine you can stop if it doesnt help plus after awhile the battery runs down and it must be replaced..I lost my health insurance and no one wanted to help when I had problems with mine...I would not be happy if my doctor was wanting to push this on me and compl. stop my meds..Oh I had nerve problems but once I had the unit removed that stop and I did not have any life threating or continuning problems after..But I do know of some people who use to be on here that did have nerve problems

[ICNDonna]

Jessica, I suggest a second opinion --- plus a lot of research --- before you make a decision about the interstim.

Sending warm hugs,
Donna

[patricia1]

I agree with Donna on the second opinion...

Also I finally talked to PM nurse after not getting a call back yesterday (not happy at all about that) but she says it takes about a week for the Ms-Cotin to get in your system...They are gonna call in my refill for Ultram which is why I think I got so sick...For me thats the one drug that helps calm my bladder down..And yesterday I found that out for sure it was a bad day for me real bad..Leaving in a minute to get my script..

Blessings for everyone that deals with this disease

[Mothergoose]

I have been told before it can take time for your body to adjust to long acting meds as they take time to build up in your system, they should have had you take both kids for a bit then ween down on the short acting, you should have break through pain meds anyways.

MG

[patricia1]

This is my 2nd PM doctor in 6 months...The first one I started seeing in May of 2010 she saw me for 5 months then in Oct on my 3rd visit dropped me like it was nothing I was so mad..I did everything like I should have so I didnt get it..Took me till this past Saturday to get into another dr..While sitting in the office waiting found out there were 5 other patients of the first PM doctor there to she dropped them in Oct to...I am guessing he thought I had enough Ultram to get through till I go back next week but I told him I only had 2 left and I took them Sunday morning..I am not sure if he is using this for the breakthrough pain or what..But for me Ultram works great for my bladder problems not so much for the back pain I have or the other pain though...I hate starting out new with a new doctor..they tend to do what they want without really listening to the patients..dont have many choices for PM where I live and this was the only one who would take my case...Its just aggrevating to say the least...I am not real keen on the morphine and you would think being that it would help but I am seeing alot of people with IC that it doesnt..

The nurse told me if its not helping by Friday to call her back and the would adjust my meds...

[vanilla]

Ms Contin

I think you're right about MS Contin not working for IC. I switched from Percocet to MS Contin for a week and could not believe morphine would not work better than Percocet. I was in pain, could not get out of bed, and constantly had to pee. My doctor quickly changed me back to Percocet, and again had to change my prescription to Percocet after a disastrous round with Dilaudid. I don't know what it is about me and Percocet, but it's the only thing that works. And I mean it really works. I'm fully functional on it.

[Mothergoose]

I know what you mean I had really bad migraines, I was given a rx for demerol, I am allergic to morphine and codine. The demerol did nothing at all, it did not touch the pain. My Dr. switched me to percocet and it worked. Go figure I think from what I have read it is how our bodies metabolize it.

Good Luck

[Jessica12974]

Re

Thank you Patricia and Donna for your responses! Patricia: I am happy for you that you finally got the meds that help your IC. Also thanks for the info on the Interstim and for sharing your story. My mind is made up! No interstim for me! Donna: You are right about doing alot of research! I have! And have come up with alot of scary stories online of patients w failed Interstim surgeries. I am consulting with Dr Moldwin on jan 1st of this month and praying that he can help me or give me advice. I wish I could take something like Ultram for pain! It actually did take the edge off for me. But unfortunitely gave me incapacitating migraines I find that most Drs are willing to prescribe it for pain more oftten than they will prescribe narcotic pain meds. Being on these narcotics is such a headache because they dont want to keep patients on them for long periods of time. And also one is a prisoner to them. I always suffer with the pain also the withdrawal when my Dr goes away or cancels his appointments short notice. My Pain Dr is not the nicest Dr! I dont have too many options or choices of pain clinics around here that treat IC. I dont want to suffer in pain but tired of needing these meds! Wish there was something else! What a shame in 2011 still no medical break-thrus for IC! Praying for a cure or solution in the near future! Anyway, wishing everyone pain-free days! Hugs!

Jessica

[patricia1]

Jessica I am sorry that the Ultram gave you such horrible headaches...One thing about that drug (as with most IC meds) I have seen that it may work for some and not at all for others...I guess they are more willing to prescribe it because its listed as non-narcotic pain med..but they need to warn their patients that have been on for along time if you stop it you will have withdrawl symptoms similar to the other opiod medicines..

Also I feel you on the PM doctor..After being rudely dropped by my first one this was the only other doctor who would take my case..There are a couple others in the areas but deal with back issues only and wont touch bladder and pelvic pain...

[Mothergoose]

Hi

Just my expirence, after much convinceing from my dr. got me to try Ponstan I think called Ponstel? in the US real name metfemic acid, don't let then name scare you off. It is a NSAID which I do know most icer's can't tolerate, but it seems to be different, when I tried to get something simular I asked at a lot of pharmacies and was told there is nothing on the market simular.

It is an older NSAID so needs to be taken every 4 hours, but is not as expensive as the newer time released ones. The thing is it is made to target pelvis pain. I did not end up haveing any problems taking it, I didn't think it did much for me, but my Dr. feels pain meds work better when taken in combo of reg pain and an NSAID.

Last winter there was a manufacturer shortage of this med and within a week I knew what it had done for me, I tired other NSAIDS to replace it, but they caused too many IC problems. It is now available again and helpping me a lot.

I had been told previously NSAIDS can take a few weeks to get full effect,and this one is the same, it does help some right away but get better over time.

Just my expirence, I don't think on it's own it would be enough but it definatly addes to my relief, and most Dr. will rx it with out too much fuss as it is not a narcotic.

MG

[ICNDonna]

I believe Ponstel is usually prescribed for menstrual cramps.

Donna

[vanilla]

Jessica, you take a lot of painkillers. When I ask my doctor for more, and I don't take nearly as much you, my doctor says, "No the DEA will be after me."
Are you in the US?