Help

[mouse]

Please tell me someone knows something I can take for frequency. I can not take medications for OAB makes my frequency worst. I've been on elmiron 400 mg for almost a year with no change. While PT has helped with the raw nerve ending feeling it has done nothing for frequency...And I have had no success with the IC diet or elavil....Please tell me someone knows of another option....The frequency is really driving me nuts!!!!:cussing:

[KarenAnne]

The treatment options are at the top of the page under "Patients". I had moderate relief with hydroxyzine & now more success with elavil. We all react so differently, but frequency & urgency are my main problems too. Maybe your dr. can change your meds or increase your elavil. Feel better soon.

[dyno]

I was going to say IC diet. You have to give the IC diet a good chance to work. I know for me diet is everything. I flared a little in the night last night and I am saying to myself this morning... what did I eat or drink that set me off.

How long has it been since you have discussed medication and treatment options with your Dr?

Also are you sure you don't have a UTI? It might be a good idea to get checked for one.

I am sending healing hugs and hope you are doing better soon.

[mouse]

I discussed my treatment options with the doc about 3 months ago and all he said we could do is increase the elmiron from 300 mg to 400 mg a day. I was on the IC diet with no success.... I am one of those rare and I guess lucky people who do not have food triggers . It doesn't matter what I eat or drink the freaquency is the same.....Right now I am on a gluteen free, dairy free, egg free and nightshade free diet (nightshades naturally cause inflammation in the body). I'm thinking of trying tibial nerve stimilation but my doctors partner, who does it, will not do it without me first having a urodynamics test....Which I am deadly afraid of because my ureathra is so sensitive. The minute she puts the cath in me I am going to have the sensation that I need to go to the bathroom!!! Besides I measure my urine output all the time (straining for kidney stones) and I know generally I only hold between 2 - 6 ounces of fluid!!!

[mouse]

Oh I forgot to mention....No UTI I have never had one!! Which amazes my docs because I all the kidney stones and iritation they can cause....Also this isn't a flare. this is how I live all the time!! I had urinary frequency since child hood but as I get older (i'm 38 now) it is progressively getting worst!

[ICNDonna]

You might talk with your doctor about trying a smooth muscle antispasmodic, such as hyoscyamine.

Donna

[elamar]

Have you tried ditropan xl yet? It worked great for me, I took the generic version. Over active bladder meds did nothing for me. Have you also looked into the meds that turn your urine blue - urelle, prosed or utira-c? How about pyridium - that's the one that turns urine orange. Those are the only ones that I know of. Good luck to you.

[mouse]

I've tried them all with no luck....Thanks for the suggestions.

[musiclover]

How long did you try the Elavil for? It may take a while to work. I have PFD and my main complaint is frequency like crazy. Not during a flare, just 24/7 everyday all the time. I think maybe the PT is helping just a bit, it has definitely helped the pain but not the frequency. That's why I think I may have centralized sensitization, so I just started Elavil hoping this will help. I took Nortryptiline for a short time a few months ago, and it did help with the frequency. But I don't like being on those drugs, so I quit taking it. This time I think I'll have to stick to the Elavil unfortunately.

[Briza]

Mouse I also do not suffer from UTIs, even when I have been cathed for weeks at a time I have not had a problem with those. It seems just some are and some aren't prone to that kind of infection...I count myself lucky that I do not suffer from those on top of IC!!

All the above suggestions posted are on the mark.
I will only add that I have read that some who cannot tolerate Elavil or do not get relief w/ Elavil for frequency and other symptoms CAN tolerate and get relief from frequency and other symptoms with Tofranil...it is in the same class of meds as Elavil and seems to work for the same symptoms, but may work better for some than Elavil without the side effects that Elavil may cause.

Elavil does work for my frequency very well, but avoiding my food and bev triggers also plays a big part in controlling my frequency...keeping very well hydrated with water does, too!

Mouse, you mention that you are not food sensitive, but I must ask:
When did you first experience IC symptoms?
How long was it from start of symptoms and diagnosis that you started the IC diet and how long did you stick with the diet?? (very important!!!!...cuz diet can many times take weeks to months to feel results and to be able to determine food/bev triggers!!....)
I really cannot stress how important it is to stick with diet...even if you aren't feeling immediate results, following IC diet and avoiding at LEAST the major classic triggers for a good period of time very likely is giving the bladder a long-overdue and well-deserved break from foods/bevs that can cause insult to ANY bladder, and ESP an IC bladder!!

Hope this is of help! There are links to the IC patient handbook (covers treatment options, among many other things) and the IC diet and are a great starting point and very much worth taking an in depth look at AND printing a hard copy for at hand reference.:) Many of us keep the IC diet cheatsheet posted on our fridge and also take a copy of it when we are dong our shopping...take care!