Please!!! Someone who has had positive results in reducing frequency..share some tips

[jena55]

I am becoming desperate for hope. I don't think I can live the rest of my life like this. I have been following the diet as best I can the past week and will continue to do so, but my frequency is simply out of control... especially during the day. Please, if anyone has had success with controlling frequency, I would love to hear how! I need to hear how!

Thanks,
Jena

[Quinn24]

Try Elavil or Tofranil, they both work at reducing frequency.

[leelee88]

I agree with Quinn, The Tofranil is what has helped me alot starting off then I added the Atarax. My fequency went from 20-25 times a day to 7-8. And now only 1 trip at night unless I am flaring.

[yvette]

Hi Jena: Have you tried Pyrdium Tab Plus? There were times that it saved my butt...especially those days I have to get stuff done. You could try and split it and see how you do with a little a first...or ask your uro about it...There's similar drugs out there too.

It's not a long term solution, but perhaps once you can get diet and some lifestyle changes under control you might not need it so much.

I hardly ever take it except when I have a UTI, which thankfully have been at a minimum...I used to average 1-2 per month...yeeesh!

y. :)

[Smokey]

firstly you need to work out why you have frequency it could be from a number of things including small bladder, OAB, PFD, retention???

have you tried ditropan or a small dose of valium? how about bicarb in water?

[jena55]

What is bicarb in water?

I have been trying to find out where my frequency comes for for the last 7 years. My dr finally diagnosed me with IC after exhausting several other tests. I have tried Enablex, Vesicare and Detrol with no luck. I dont think I have tried detropan, isnt it the same as one of those?? Believe me, I am doing all kinds of research trying to figure out what I can do and if this is truly IC.

I was thinking maybe I should try an OAB medicine again now that I have commited to giving up caffeine. Before, I was still drinking caffeineted soda everyday. Do you think that might make a difference? I feel like my world would reopen if I could tackle this problem and feel more normal again.

[kadi]

Just 10mg of Elavil dropped my frequency from 60x a day down to 20. Increasing to 20mg of Elavil dropped my frequency down to 12-15x.

Home bladder instillations of Marcaine, Heparin, Sodium Bicarbonate, have further reduced my frequency down to usually around 8x a day.

All the things listed under my name have been very helpful & I now have most of my old life back.

Wishing you success in what you decide to try next & wishing you better days soon!

[izazen]

A non medical approach is to lift your lower stomach up in your hands for a while - as long as you want - and release. The urge should be gone by then. You can repeat as often as you like.

Another non med is to tighten up your perineal and vaginal area for a few seconds and release s l o w l y.

[lan]

Elavil helps reduce my frequency. I forgot to take my dosage a few nights ago and my frequency went back up - so I am convinced that the Elavil is working for me. I hope you find something that works for you. Linda

[Annie2]

We are all different and respond to meds differently. In the beginning, Detrol LA helped me tremendously (I could even sleep through the night). I would take it in the evening so I would get the most benefit from it at night and could get some rest. Sometimes my frequency would start going up again as I neared the time for my next day's dose (in the late afternoon), but I could deal with that as long as I was able to sleep well. It didn't do a darned thing for me if I didn't follow the diet, however. One trigger food ingested would send my frequency right back up there. For me, getting relief totally centered on the diet and once I got that under control, my meds worked much better. Some people can't tolerate Detrol, others have no luck with it and others find other OAB meds help them. Adding Elavil helped me, too. You have been given lots of good tips. I really hope one of them works for you! Oh, I'd like to add I also took Elmiron. I started feeling a little better after being on it for 3 months, but it took a full 9 months before I received the full benefits from it. Later, I was able to stop the Detrol LA. I started having hesitancy in getting a flow started (not really retention) and my uro and I figured out that once the Elmiron became fully effective, the Detrol was no longer needed and was then too much for my system. I stopped it and the hesitancy immediately went away and my frequency did not go back up because Elmiron was doing the job.

[jjt001]

I'm another for whom Elavil made all the difference. I was voiding 35+ times/day (and often every hour at night) and now I think I'm pretty normal -- it still surprises me when someone else has to go before I do! I even sit through movies now without getting up, though I laughed over Christmas because we were going to a theater that assigned seats and my husband was worried that I couldn't get an aisle seat. I have him well trained.

However, even with the Elavil a caffeinated soda per day would have me in the bathroom much more. I am not terribly diet sensitive, but I have found that if I have grapes or plums my frequency goes up like crazy. So, I still have to watch my diet, even though the Elavil has helped tremendously (I currently take 25 mg/day).

[Smokey]

you need to get rid of caffeine from your diet completely. even with people who do not have ic, run to toilet after having a coffee or a coke. decaffeineted coffee can be more acidic that normal coffee.

[bjcov]

JJT, Were you up to a higher dose of Elavil and went back down to 25mg. I am currently on 25mg (only for 5 days) and I am not seeing a releif in the "gotta go feeling" I am still groggy in the morning but would be willing to raise the dose if I thought it might start working? Any suggestions? I am strictly on the IC diet, no change.

[elamar]

I used to take 3 doses a day of ditropan xl (none of the others worked for me that you mentioned) along with urimar-t. I took the generic versions of both. After a few weeks, I was able to reduce the ditropan to twice and day and then once per night. It will dry you out terribly on the higher doses, but it did seem to break that horrible urgency cycle for me. I still have twinges of that feeling in the background, but nothing like what it started out like.

[jena55]

Something I have always kinda wondered...

Does the drying out effect of the OAB meds cause sexual problems, if you know what I mean???

[Pensive Girl]

ditropan and it's generic dried me out TERRIBLY. i'm a runner, and i noticed how dry i was when i ran 4 miles and didn't sweat. not a drop. detrol LA is less drying and works for me. and yes, the really drying ones dry out EVERYTHING. eyes, nose, throat, skin and down there.
:evilsmile

[Claredale]

It's been a long time since I took any OAB meds since they caused major retention for me, but I don't remember it having that side effect. The only "drying" effect I had was that I was always thirsty, which didn't help that I was thirsty, but couldn't pee.

T83

[Stephp1]

Elavil worked great for me for sometime...(25mg at night)..slept through night, or at most got up once/twice. Was great as before I was getting up around 8-10 times, which was driving me crazy! Had a great few months, great mood etc, but now it´s stopped working. Gonna try 50mg instead. I felt groggy for a few days, but then it wore off and I felt fine.

Good luck. Keep us updated on any success stories with frequency...of course with any others too.

[bjcov]

Stephp1, is the 50mg Elavil working any better? I am just moving up to 25mg + 1/2 a pill. I hope it works. I did seem to feel better during my period which is annoying. I was to have a PST test done today but told the doc that I have been doing ok and didn't want to risk getting worse. So we are waiting 3 wks. But that was this morning and the "gotta go feeling" is actually worse today, should've done the test. I feel stupid now.

[karen10]

Here's another idea and something that worked for me, going to a strict elimination diet (even if you've done it before) and start from there to see what you can tolerate. Not everyone is this way, but I'm very diet sensitive and that makes a HUGE difference for me. I started with a huge variety of veges (both raw and cooked to make sure to get enough nutrition), meats, lots of good water (not tap water for sure!), and only rice products, rice pasta, regular rice, rice roll ups (like tortillas--I find at an Asian market), rice cakes and crackers. Rice is supposed to be hypo-allergenic. You're supposed to do this diet until you are noticing a reduction in symptoms (it took about 3 weeks for me). Then every 3 days you're supposed to add in a new food, only one every 3 days to see how you tolerate it. Yes, it's time consuming and I'm eating fish or chicken with rice for breakfast some mornings! :) but it's been worth it to me.
Another thing that worked for a friend of mine was the nerve stimulator which is attached at the ankle. I don't know the actual name of this procedure, but it has helped some with the frequency and urgency. I know it's difficult, hang in there!! :pray:

[bjcov]

Karen, you always have great advice. I am struggling w/ the urge to pee but I have trained myself to only go about every 3 hrs. But the urge is always there, even when I get up off the potty.

Wondering, what do you season your chicken and rice with?

[karen10]

bjcov,
I replied to your other post about the pst also -- it wasn't so bad for me and I'm a big chicken!! I hope it goes as well for you!

For me, the worst symptom I can have above almost anything is a sense of urgency. I wasn't going to live that way. I was able to stop working for a few months and I spent time researching, tracking down EVERY piece of info (well ok not all probably :)) that I could to deal with that symptom. For me, the long term solution comes down to diet. I'm not going to take meds when I can fix the problem with eating right. Why would I want to do that to my liver, when I can become healthier by eating food that agrees with me??? I have lots of food intolerances. I also believe there's much value in the leaky gut syndrome--this has been very valid for my life. I can't speak for others.

I don't season my chicken with much. I use sea salt, I can also do black pepper, and always garlic (which if you can tolerate it, is very good for you). I also cook in olive oil which adds flavor (which is the one you should use for heating, the others break down when heating). I'm also in a degree program studying nutritional therapy because I believe in it so much.

And I'm taking both the Desert Harvest aloe and CystoProtek. They are both natural. In addition to eating properly for me, I needed to give my bladder some help in healing the damage already done. Those products had the best research and results.

Hope you find what works for you very, very soon!! :pray: