Nocturia getting worse.........meds not working

[YankeeCandle224]

When this mess started I would get up once or twice a night to go urinate, now its 3-4 times, usually 4, and last night when I felt like I would NEVER empty, and sat there spasming like crazy, I put my head between my knees and actually fell asleep!!!

I'm on ditropan xl (which really isnt helping yet), pyridium and I take an extra pill before bedtime as ok'd by tne RN at the uro's office, and Levsin 2 x a day, sometimes 3.

It's so miserable....my house is so quiet, everyone is sound asleep, and I'm in the bathroom making noises that I didnt even know I could make.

Why the increase in this? Progression in the disease at this early stage (assuming it IS IC, which I think everyone believes it is), the increase in the pins and needles sticking my poor urethra and the spasming, despite the meds.

I go to the uro again tomorrow, hoping he can give me something else to help me. I take hydrocodone for fibro pain, but it does help the IC pain somewhat as well and I'm going to run out early so I'm hoping my pain doc and the uro will talk so that they both understand why I may need my RX filled earlier or have my alloted amount of pills per day increased.

I have never had pain like this with all the ailments, and its so scary. And to see it somewhat progress so soon is making me nuts.

Anyone have any thoughts on this? It's a catch 22, I drink a lot of water now, try to cut back a couple hours before bedtime, and the result is waking up in pain more and more.

Helppppppppppppppppppp. Love, Sandy

[vm]

What is the second pill that you mentioned taking at bedtime? Did you start doing that before or after the nocturia increased? And how new is the ditropan to your regimen?

[YankeeCandle224]

Hi,

I take Levsin/hycosamine, 3 pyridum, and I take the ditropan in the morning. The levsin is an antispasmotic for gastro and urinary problems. I also take supplements at bedtime I've been taking for years, along with a muscle relaxer for the fibro, Zanaflex, and an occasional Ambien I save for those really bad nights. Even with the sleeping pill I stumble into the bathroom very often. Oh, and the ditropan was started on Tuesday.

Any thoughts?

Thanks for answering! Sandy

[DanaW]

You may have to cut out the suppliments for a while and see if your pain eases up. I can't take any vitamins or herbs. Also, you may want to check to see if you have a bladder infection. When the pain gets super bad, that may be the case. Good luck

[YankeeCandle224]

Hi Dana,

I really hate to cut out the supplements because they do help with the fibro pain and symptoms. I can now walk down my stairs in the morning without walking sideways and hanging on the railing for dear life. Maybe I should at least start taking them ata different time. I take them at night because they make me nauseated......like I said in another post, seems my whole life is about to change!

Thank you for the idea, I'm going to give it a try, by at least changing the time of day I take them. If that doesnt help then I'll just have to stop some of them. I only take 4 which are supposed to help the cognitive parts of fibro, and the rest are for joint and muscle pain.

Sandy

[vm]

Did the "up more often at night" stuff start when you started the Ditropan?

[Cali girl]

I was put on Detrol LA before I was diagnosed. And that helped me a lot. But it took time. I slowly got better over a two month period. But then I stopped improving. Then my uro suggested she look further to see what could be wrong with me. And of course two months later I have IC.

Cali

[dyno]

Hi,
I was also going to mentioned the supplements, I can't take anything in combination and only a few by themselves.

I have also been on Ditropan and Detrol. I can still take Detrol but a very low dose and not the 24 hour formulation. I would have spasms and retention with too large a dose.

Before my Dr. started me on Vistaril(Hydroxyzine) my nighttime frequency was very similar to your. This medication with Elmiron, and really watching my diet, using prelief when necessary has really changed things for me. I ocassionaly will use the Detrol if I am having a bad flare but even then cannot use it too close to when I am taking my Hydroxyzine or I will have retention problems.

I hope you can find a combination soon that will help and I would really look at the supplements as a possible trigger for your IC.

Good Luck,

Jolene

[YankeeCandle224]

Thanks everyone,

The nighttime trips to the bathroom have increased over this week yes. I didnt really relate them to the ditropan as that is supposed to help me and he did a retention cath after I voided in the office to see if I retained too much urine post void to take the ditropan. I guess it could be the cause, but at this point I dont know anything, just full of questions.

I see him tomorrow cause i cant live in this way for long.

I used to take vistaril for hives, its a great drug, and helps with so many things....Perhaps he'll put me on that, but I take so many other things, who knows.

I will look at the supplements with the doc tomorrow and see what he says about them as well, I wrote out an entire list of my meds, both RX and OTC that I take.

Thank you so much, all of you. Sandy

[dyno]

Sandy,
I don't know if you have read any of the guest lecture series on this board but there are some good ones. Here is the link to one from Dr. Parsons about Hydroxyzine and treatment with it.

http://www.ic-network.com/guestlectu...ranscript.html

It might be worth even copying some of this to take with you to the Dr.

Jolene

[skershner3]

Sandy,
I went through the same thing that you are going through now months ago (shoot - still going through it but not as bad). Anyway, it seemed like it just gradually got worse but I was up until about 4:00 am or so making trips back and forth from the bedroom to the bathroom, dribble a little urine, go back to bed, back up again. I would get up, walk around, sit back down and try to pee, dribble, went to sleep on the commode, straining, which only made things worse, etc. I called my urologist and they suggested that I cut my Imipramine (Tofranil 25 mg.) doseage down by 25 mg. at bedtime. I did and my pain got soo much worse, I went back on it. I had a three month follow up with my urologist, did a urine, had 700 cc's of residual urine in my bladder. He discontinued my Ditropan XL completely and sent me home with catheters, etc. and I have had to do self catherization for the last three months every four hours and keep records of my outputs. Some of them have been ok, some high, as high as 1,000 cc's the other night so I am really concerned that I will have to continue this catheter. Also, I have had several nights, like last night where I had to do a catheter at 2:30 in the morning and got 300 cc's of residual. Just couldnt sleep. I drink alot of water too, all of the time and feel that it helps to ward off other things, illnesses, etc. that I dont get. Anyway, I have since cut back down on the Tofranil and the pain has gotten worse so I dont know what to do. I hate to go back to trying to find the right combination of meds. I go back to the urologist tomorrow and will try to check back in with you to see what kind of report you get and I will try to let you know what is going on on this end. I am pretty upset over this and just dragging around during the day from no sleep. Good luck tomorrow. Susan

[YankeeCandle224]

Joleen, I plan on asking the doc for vistaril tomorrow. I know it can also help the anxiety and relax me so that maybe I wont be so freaked every time I go to pee. Thanks so much.

Susan, I'm sorry you were/are going through the same thing I am. It's horrible enough to have to pee all day long, but I used to sleep straight through the night up until a couple weeks ago. This started before the ditropan, but has gotten worse this week since starting it.

I'm at such a loss as to what to do. I know my meds need to be fine tuned. I just get my fibro meds fine tuned and helping for the most part and feel miserable knowing I have to go through the same thing for this urinary tract thing. There are some nights I'd rather give birth to my biggest baby of almost 9 lbs without anesthesia then try and pee. It's the most horrible feeling . Kind of like pouring alcohol on an open wound then spasms that words cant even really describe.

Thank you both for your time. Sandy

[havingsuccess]

Levsin is also called hysocyamine. My uro gave it to me for my bladder and i stopped it when I started the antibiotic therapy. I have been having a flare of IBS and looked it up and it was also called levsin which is given also for IBS. It is supposed to relax the smooth muscle so they give it for both. I retained horribly on ditropan and had to stop it in a few days. I don't think your getting worse, progressing I mean, I just think it's a nasty, stinkin, flare. For me every flare is different. May be try valium 2mg 3 times a day to relax the bladder, ditropan can relax to much, valium relaxes the muscles not the entire bladder. Also try lying down flat and pulling your legs up like a frog and massagin from your hip bone down in a diagonol motion. This will help relax those probably tense muscles. My husband massages me every night. It helps the bladder empty completely. For those really bad night I keep a few very small catheters around and drain it our if it won't come out on it's own. Hope this helps some!

Success

[skershner3]

Sandy,
I went to the urologist today and it turned out pretty good. I did my urinalysis and still had 150 cc's of residual. Dr. Fort had originally said that I would still have to continue to do self catherization if my residuals werent 100 or below. I went back, voided 100 more cc's of urine and he was ok with that. He told me that I would not be happy with him. He suggested that I continue to do the self catherization every night just before I go to bed and when needed. I told him that I didnt have a problem with that at all that I had actually decided that doing this would be a good idea whether he has suggested it or not. He said that I was suffering from sleep deprivation. I had been to my family physician last week and had blood work done (which turned out ok)because I was so fatigued. Dr. Fort decided to spread my Tofranil doseages out. I was taking 25 mg. twice a day. Now I will be taking the 25 mg. at bedtime but 10 mg. three times a day to spread it out hoping that this would help the pain that I am experiencing. I was so afraid that he would discontinue it but I had told him that it really helps my pain, that and Atarax seem to be the two medicines that help me the most. He also upped my Elmiron from one capsule twice daily to two capsules twice daily. I tried higher doses before but it causes alot of stomach upset but I was taking Nexium then and now I am taking Prilosec and it seems to work so much better - we decided to give it another shot. He also told me to continue to drink plenty of water like I was but to cut down on my intake after 6 PM so hopefully with all of these steps and the self catherization right before bedtime I can get a good nights sleep. I had some questions about my future with a chronic illness, how much my husband will tolerate this, etc. and we both decided that I will talk to my family doctor about this because he is really, really good at counseling. I am also going to start taking Wellbutrin instead of Effexor for depression because I do some about seven cigarettes a day, not a great amount but enough that it causes irritation to the bladder and makes me have shortness of breath, etc. so I am going to try to stop smoking cigarettes and the Wellbutrin is supposed to help. Anyway, before I went to the doctor I made copies of my output notes and wrote him a letter stating how I was feeling, how the catherization was affecting me, medicine changes, etc. in a letter. He said to do this on every visit if I could because it helped him so much to understand what was going on and there might be something that he forgot to ask or I would forget to tell him so he was very appreciative of that. Just not having to do the self catherization every four hours has made me feel like the weight of the world has been lifted from my shoulders. I am sooo happy I dont have to do that every day, I can handle night time. I hope that your visit went as well. Let me know. I am thinking about you. He told me that "it is not fun putting up with IC." No kiddin. Let me know what happens. Susan

[YankeeCandle224]

Hi susan,

Sorry, I did not see this til tonight, when I SHOULD be in bed but my mind will not let me sleep yet.

I have updates all over the board and dont want to take up anymore space here for that.

I do want to say good for you with the wellbutrin. I just asked my GP for Zoloft 2 months ago and it is helping, but I have this feeling of doom and gloom on occasion (like tonight) that will not go away.

My doc didnt put me on the vistaril though. He said we'd get through the first cysto/hydro/elmiron instill and see what happens and form a plan then.

I have Ambien for sleep if I need it, but I still wake up to pee, the urge and pain is too great and I hobble in there, go, yelp in pain, and hobble back to bed usually waiting on the spasms to stop before I fall asleep about 10-15 minutes later.

Anyhow, thank you for writing. I hope you're doing better today.

Sandy