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  1. #1
    ICN Member
    Join Date
    Apr 2000
    New York, NY

    Overly Sensitive Nerves?

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    I wasn't sure which thread to post this in....I suffer from horrible nocturia - I wake up to go to the bathroom every 2 hours for the last 15 years of my life. No matter what I try, I still get up. I am extremely convinced that my problem lies within my nerves being overly sensitive. Sleep medication doesn't help...I've tried tons of the various meds prescribed for IC.....the only thing that ever worked for me was the Interstim trial (which was followed by Interstim implant which never got around to working due to moving wires etc and I had it removed). My doc asks me to try and hold the urine to retrain my bladder, but when I hold it, I end up in pain from having to go to the bathroom so badly. Whenever I have had a procedure that involved me going under anesthesia, I wake up having to urinate so badly I want to cry. So, my doc is convinced it's my nerves also. I've tried amitriptylin (sp) but it made me way too tired and still didn't stop me from waking up.

    I was curious if anyone has taken anything, outside of nerve devices, that has seemed to have helped overactive nerves in the bladder. I'm not sure if anyone else feels that this is their primary problem.

    Thanks so much.


  2. #2
    ICN Member Trishann's Avatar
    Join Date
    Apr 2006
    To be honest with you and I might be jumping to a wrong conclusion, but I truly don't know why doctors tells you to retrain your bladder by holding the urine in. To me, it is just making the bladder lining worse, because the bladder lining is damaged and because of that, the urine is irritating it. There might be a answer to that and maybe someone else can explain it.

    Detrol La does help me but many people cannot take it. But I also take a pain pill at night. But I still get up early in the mornings and have to get up to go.

    I hope you can find something that will work for you, and find some comfort and relief.

    Hugs, Trishann

  3. #3
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    Bladder retraining can sometimes be very helpful for IC. It's done by very gradually extending the time between emptying your bladder. Some people wait just five minutes after they feel the urge at first. Bladder retraining should be done under the supervision of a physician and should not be attempted when you are in pain.

    What dose of amitryptiline (SP) did you try? It comes in as low as 5mg; you may have taken too large a dosage.

    Have you checked the ICN Shop? for US & Canada for all others

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool

  4. #4
    ICN Member
    Join Date
    Apr 2000
    New York, NY
    I started at 25 mgs a day. That made me too tired (was sleeping until well into the afternoon). I then started cutting them in half at 12.5 mgs and saw no effect.


  5. #5
    ICN Member Silverfox's Avatar
    Join Date
    Apr 2003
    Dana, I join you in finding my nerves are the cause of my bladder distress!
    I was always found to have a normal looking bladder, and never been diagnosed with IC. In fact a top European Doctor told me I absolutely did not have IC.

    Not long after that, I was diagnosed with a disease that my Doctors told me caused my nerve pain sensations. They informed me that this nerve damage is throughout my body, causing many varied complaints. Bladder symtoms was the most distressing of all of them, and many other complaints were very bad.

    I have had this beginning as a small child and gradually getting worse, and trying over the years most of the IC treatments. I have tried many medications. Nothing really helps the painful bladder nervess very much. Once nerves are damaged they are difficult to treat the pain sensations. I went many decades untreated, so my Doctor says the nerve damage is worse and hard to regenerate. Early diagnosis and treatment would have been most beneficial for good recovery. They are working on some new drugs to help patients with painful nerves (neuropathy) I think there is one that is available in the UK, Europe, and Canada, and it is from the marijuana plant.
    They call it Sativex, I believe. Montel uses this for his MS nerve pains.
    I like to think it would be helpful for all of us in the US who suffer nerve pain but I think it will not be available for many years in the US. It might help many who have nerve diseases, like MS, Diabetes, hypothyroidism, and several other diseases that affect the nerves. Some typical nerve damage is axonal degeneration, demyelination, excessive glocogen in the schwann cells.
    The sensory nerves are the ones that cause the most pain when affected by a disease process. There are many sensory nerves in the bladder and urethra, and throughout the body.

    My Doctor told me I was so rare, yet he later changed his opinion reading newer research. Strangely, I have suffered with the same burning pains in my hands, fingers, and soles of feet that occur in my bladder, even the same intensity.

    For further info on diseases that cause nerve pains check out the neuropathy association.

    I am always trying new medications for symptoms and I take klonopin at night for sleep and lyrica for nerve pains.

    Hope you find something that helps you! Hugs, Silverfox

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