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

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  • skershner3
    replied
    Sandy,
    I havent been on the message board for awhile and was just wondering how you are doing? I didnt do too hot on the Wellbutrin for the smoking. I tapered off of the Effexor and started the Wellbutrin and I got so jittery and anxious feeling. I called my pharmacist and doctor and considering that I had tried several antidepressants in order to find the right one that would help me and not give me alot of side effects it was easier to stay with what I was taking so I went back on the Effexor. With discontinuing the Ditropan and doing the catheter at bedtime I am sleeping better, not great but at least I am not up most nights until 4 or 5 in the morning. It was like that every night and now it is "now and then." I just had that happen after having sexual intercourse and spent the last two nights up until 4 and 5 and finally had to do a self catherization in the middle of the night. It was from spasms I think after having intercourse. It seems like over the winter my depression got so much worse but we had a hard winter here and it was hard to get out and do anything so I am hoping for spring. I have always worked and it has been hard to get used to not having to do so but I have gotten "comfortable being at home," and feel so much better physically because of it. Being in the medical field previously I miss not being able to help other people so I thought that maybe by coming to the message board I could help someone in some way and it would make me feel better about myself, which it does. Let me know how you are doing. Susan

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  • nippersmomma
    replied
    Wow, I have been reading all the posts, this is my first time on this site. I have had IC for almost 30 years. I wasn't diagnosed until after 10 years of suffering.I started with Elmiron when it was still experiemental, that and Hytrin changed my life from thoughts of suicide to being able to cope. I have had many experimental treatments, currently take hytrin, Elmiron, hydroxizine, and urised, cipro and hyosycomine and vicodin as needed. I also self-cath as needed. I am currently having a diffiuclt flare-up, but I want everyone to know that the most effective way of coping is through a positive attitude. I never give up and although I keep up on all research developments I do not focus on the disease. I know where every bathroom is in california, and some days have spent hours in them, I know more than my doctor, and knowing some much about the disease, the symptoms, related problems and treatments is very empowering and also helpful in seeking treatment.I have had back surgery due to damaged discs, this did not help my bladder as expected. The DMSO helped for a while, the heparin did not. I was sleep deprived until my docotr prescribed an antihistime at bedtime, I also have severe allergies, and lots of muscle pain. When it gets bad, I take a small amount of vicodin. Some mornings I go to work late because I need an extra hour of sleep. Most things I have tried have helped a little.I don't drink any alcohol or sodas, or eat onions, spice, or peppers, I have tried the ic diet with no change. You can learn to deal with anything and life can still be wonderful!

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  • andcohen
    replied
    I have been reading your post & understand fully where you are comming from. Although I am from Australia & not familuar with alot of the medications mentioned on this site I thought I would let you know about one that has been a saviour to me. Whilst listening to a current affairs program here a story caught my attention regarding a nasal spray used in young chidren(mainly) for bed wetting problems. The spray is designed to slow down the production of urine during the night. Althought I do have to have kidney test every 6mths the DR seams to think it's ok to use long term. I have been using this (MINIRIN NASAL SPRAY) for app 15mths. I still have to use sleeping tablets & pain Meds every night but this has reduced my once 15-30 trips to the loo to only about 5 a night.
    I am 33yrs old so I guesse for the right reason the can prescribe to any one.

    good luck hope this can be of help. let me know
    Andrea. hi

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  • skershner3
    replied
    Jenny,
    I take Atarax for mast cells at bedtime and it really helps with the sleeping and pain. I consider it one of the medicines that give me the best results for fighting IC. Susan

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  • Ginny
    replied
    I also have fibro so I know what it is like to get one thing under control to have the other flare. Some feel it is one illness. My Uro does.
    The one thing I did not see mention of is Elavil. A small amount before bed makes a difference. It is given for both illnesses.
    It is difficult to get started but we can help.
    Ginny

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  • skershner3
    replied
    Sandy,
    Thank you for taking the time to write back. I have tried several different types of antidepressants over the years and some just didnt do it for me or I had adverse reactions. I finally started taking the Effexor and I do very good on it and it makes me feel better. That is one reason I hate to go off of it but I also want to quit smoking so I am going to try the Wellbutrin and see what happens. If it doesnt work good for my depression I will go back on the Effexor. You can talk to your doctor about another antidepressant. I know alot of people (from working in health care before) that did well on Paxil. I thought that maybe your urologist would put you on some kind of antispasmotic or something for that retention. When are you going to have the hydrodistention, cysto and the instills done? Let me know how things are going. Bedtime is a bad time for me before I go to sleep too, too quiet and too much time for things to mull over in your mind. I started taking my meds to help me sleep a little before I go to bed so they have a little time to kick in before bedtime. Will talk to you soon. Susan

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  • YankeeCandle224
    replied
    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

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  • skershner3
    replied
    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

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  • havingsuccess
    replied
    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

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  • YankeeCandle224
    replied
    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

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  • skershner3
    replied
    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

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  • JAF
    replied
    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

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  • YankeeCandle224
    replied
    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

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  • JAF
    replied
    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

    Leave a comment:


  • Cali girl
    replied
    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

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