Taking higher elavil dosages?

[megancolleen]

Is it typical to keep gradually increasing your dosage of Elavil?

I started out on 10 mgs, then moved it up to 20, and now a year later my symptoms have increased and my doctor doubled the dosage to 40 mgs. Fortunately it seems to be working...I only went to the bathroom 6 times today (amazing!) and am feeling better. I am a little concerned that my body is building up a tolerance and will need more and more quanities of the drug for the same affect, but at the same time, it's allowing me to urinate less often which will help prevent my bladder from shrinking. If you are on a higher dosage of Elavil (40 mgs and up) how do you and your doctor feel about it? Will you keep increasing it if your symptoms worsen in the future?

[ICLori]

Hi, Megancolleen, just wanted to reassure you that you have a very long ways to go before you reach the high levels of Elavil that traditionally have been used for treating depression. I would be very shocked if you ever actually needed that much Elavil. As far as I know, we don't build up a tolerance to Elavil as we do to narcotics. Most people have stayed on the same dose of Elavil (after the initial period of starting the drug slowly, then increasing) and it is increased only as the disease worsens and the pain increases, or increased for flares.

I wanted also to address a very common misconception about IC. We do not have smaller bladders (those of us who do, not all of us do) because we go to the bathroom frequently and do not store enough urine at one time; it is the other way around, really....we have an inflammatory process in our bladders that causes the bladder walls and base to form scar tissue over time. Scar tissue can not be stretched out - it is amazingly strong, like steel. It is not elastic like regular bladder tissue which is healthy. It can not be stretched out even during a hydrodistention - for instance, my bladder held 450cc at my last hydrodistention, only about 1/3 to 1/2 of a normal bladder. Even if my doctor had wanted to, he could not have forced more water into my bladder than that, no matter how much pressure the water was under (the water was forced into my bladder under pressure, I think 20 pounds per square inch, as it was.) He could not force my bladder to expand to the size of a normal bladder, even with water under pressure being forced in, because of the scar tissue. If he could not do that with a hose, what are the chances of me being able to force my bladder size to become larger simply by trying to hold more urine in my bladder? Zilch.

This is a common misconception because of the theory of bladder retraining. (BTW, none of my doctors have recommended this for me, because it works much better for Overactive Bladder, where there is no pain, rather than my type of IC, which involves pain.) The theory is, if you do not respond to your body's urge to void, you will train your body to not bother sending those "gotta go" (or bladder spasm) signals until it has reached the fullness you have set as your "this is reasonable" level.

So what you are doing in bladder retraining (hopefully) is achieving a larger FUNCTIONAL capacity (the capacity while you are awake - the amount of liquid your bladder will hold before the gotta-go feeling) but it is impossible for you to achieve a truly larger bladder in terms of sheer physical size (larger capacity under hydrodistention) because one, it is extremely painful for even a normal bladder to be full to the very top, that's why they use anesthesia for hydrodistentions, and, two, again, scar tissue will not stretch no matter how much pressure is applied.

With IC, however, in a person who has pain, those gotta go feelings come not from bladder spasms, but rather from pain. I never feel a normal gotta-go signal from my body - it is ALWAYS pain. That pain is signalling that the urine is seeping under my tissues to the nerves below, and causing more inflammation (and slowly, over time, my body is responding to the inflammation by creating more scar tissue, which stops my bladder from being able to expand properly, because healthy tissue expands like a balloon, but scar tissue is rigid and does not expand at all.) For me, holding the urine longer not only would result in more pain, but would actually be hastening the shrinking process of my bladder! So I suppose that is the reasons that doctors and books about this always recommend NEVER doing this unless you do not have bladder pain. And, actually, you DO have pain - you just don't FEEL it because Elavil interferes in the perception of pain signals.

In fact I often wonder about this - when people are medicated so they are not feeling the pain of the urine seeping through the torn lining of the bladder to the sensitive tissues below, they do not have to void nearly so often. So it seems like theoretically, the irritation from the urine sitting there longer, could cause more inflammation, which, in some individuals, could cause more scar tissue to be formed. (I think how we form scar tissue is a very individual thing.)


Blessings,
Lori
P.S. People often think their bladder is shrinking when they have to go void more often. This is not usually the case, although it is possible that their bladder is shrinking over time from scar tissue formation. What is happening more often is that there is more inflammation, more pain, as the disease progresses or when it flares, and therefore the signal to void is sent when a certain pain level is reached.

To give you an example, think of someone who, under anesthesia, has the completely normal, healthy capacity of 1,200 cc. That person then contracts a UTI which creates holes in the lining of the bladder and causes intense pain similar to IC. That person is in the bathroom every five minutes, and can not comfortably hold even a few drops of urine in their bladders. Has that person's bladder shrunk?

No. If you put that person under anesthesia, you would again see that their capacity (the physical size) of the bladder is normal. It is only the pain and inflammation (which is temporary with a bladder infection) causing the person to lose what is called FUNCTIONAL capacity (the capacity when awake, not the physical size of the bladder.) After the disease has gone away, the person again returns to their normal voiding patterns.