Antihistamines

[Richard.N]

Does anyone find that antihistamines help with general or additional symptoms?

[webslave]

Yes. See my posting on sinusitis under Success Stories.

[Richard.N]

Webmaster - I read with interest the postings on sinusitus but I was thinking that if both Elmiron and quercetin are anti-histamines, has anyone had success with high doses of OTC anti-hiamine pills? Richard.

[webslave]

I haven't tried them, and don't need to, but I know of a few women who have had success with Vistaril, a potent antihistamine. (I suppose you could regard quercetin as a sort of antihistamine because it protects mast cells.)

Here's one antihistamine success story:

My IC began just a few years after I finished graduate school when I was in a chemical accident. I regularly swam several hours a week at my local swimming pool. One unfortunate day in 1992, the club staff "bombed" the pool with massive levels of acid and chlorine. Unfortunately, they forgot to put the "closed" sign up. I swam just a few hours later and my bladder symptoms began that night.

I will say that I had a history of bladder sensitivity. In junior high school, I developed frequency that, after two years or so, resolved. In high school and college, I had no symptoms and was healthy enough to compete as a professional tennis player. I also have a strong family connection with bladder problems. My Grandmother, Aunt, Mother, Sister, Cousin and other assorted relatives have all had various bladder problems, though only my Grandmother and I ever received a diagnosis of IC. The others were told that they had "honeymoon cystitis" or "very sensitive bladders."

My first diagnosis after the pool incident was "chemical cystitis." Yet, over the following year, I had more and more flares. First once, then twice a month. It quickly became weekly and then, finally, progressed to daily symptoms. It became a struggle to work and just driving in the car would leave me in tears. Like so many of you, I didn't understand what was wrong with me. I had no idea that the bladder could hurt so badly and was worried that it was cancer. I felt alone and isolated, as if noone else could possibly understand the pain and despair that I was feeling, especially in the middle of the night when I was unable to sleep and cried buckets of tears. I was so scared and overwhelmed. It was a devastating period of my life. But, in the Summer of 1993, I experienced hope when I finally met another IC patient.

This is worth saying several times. Talking with other IC patients is so important. It reminds us that we're not alone and it can tap into a body of knowledge and coping skills that some care providers may not be familiar with. For example, my first IC friend told me about the IC diet and how important it was for me to protect my bladder by NOT introducing irritating acidic foods, like coffee, cranberry or soda. I drank cranberry juice by the gallon that first year. Arrghh! No wonder I got worse. I was pouring acid on the wounds in my bladder every single day. By stopping that alone, I was able to reduce my dietary flares dramatically.

The second thing that she gave me was permission to stop and rest. I was forcing myself to walk, to exercise (Did I say that I was an exercise nut?) and to be with family or friends, despite the fact that, many times, it exacerbated my pain. Why? I didn't want the IC to "win." I pushed and pushed and cried and cried. But, as she said, pain is a signal to our bodies that something is wrong. We would never run a marathon on a broken leg, so why do we try to run a marathon on a broken bladder. I realized that I had never stopped and just rested. I finally gave myself permission to say "No" if my bladder hurt. What a concept.

These two pearls of wisdom helped me survive and gave me the chance to see that there was hope. Believe me, I needed it. It just seemed that 1993 was not the year for me. Despite my position as a fund raising manager with a major non-profit, my boss didn't believe that I was sick. I was told that I came from "weak stock" (she really said that!) and that I didn't "look sick." I was constantly defending my need for doctors visits, especially those weekly DMSO treatments. That summer, I lost my job in a downsizing which targeted only disabled employees. Long story but I'll give you the end result. I filed several disability discrimination complaints, testified up in Sacramento on the status of our state's Dept. of Fair Employment and Housing, and finally settled the case five years later. Oh, did I mention that my boyfriend left! He had lost his mother to cancer and just couldn't cope with having a sick girlfriend.

Yet, in the face of this adversity, a lot of really good things happened to me. My family became closer than ever before. My parents are my heroes. Both retired, they helped in so many ways... mostly just encouraging words, hugs and patience. On the days when I could barely walk, they always drove me to the doctor. They didn't pressure me to attend family events, holidays or parties. They gave me time and let me heal. I will never be able to pay back to them the support and love that they gave to me.

I was also blessed with an outstanding team of doctors. The first urologist that I saw, Dr. Mark Klein, not only believed in IC (yes, I was really lucky!), but was pretty up to date on therapies and treatments. We tried lots of different treatments and even made a referral to a UCSF Medical Center for an experimental program run by Dr. Marshall Stoller. I did get better slowly and steadily as we found the therapies that worked for me.

A big part of my recovery was doing a voiding diary. For most of 1993, I did a daily voiding diary to help me track how I was feeling. By doing that, I was able to see my normal monthly flares and to stop worrying about them. For example, I learned that I usually flared when I ovulated and before my period. But, I could also see that those flares always resolved and that they weren't worth a frantic call to my doctor every month.

My voiding diary also gave me the chance to see which treatments worked and which didn't. DMSO, for example, did nothing for me.. but hydroxyzine slowly and steadily decreased my night time voids, flares and frequency. One of the best parts about doing a voiding diary was that it made a case for having some pain care. Doctors usually can't prescribe pain medication without first documenting the need for it in a patients medical records. A voiding and pain diary is an excellent way to do this.

It's now 2005, and thirteen years since the onset of my IC. My life is good. Yes, I still have symptoms on occasion. As long as I watch my diet, pace myself AND catch flares early, IC rarely interferes. The biggest limitation that I have is that I'm not a fan of riding in a car over a long period of time but I finally found the perfect IC car, a Buick Rendezvous, with such a smooth suspension that it rarely aggravates my IC. I found a used 2004 CXPlus that saved me more than $10,000 off the list price.

[Ralph]

A word of caution to those who may want to try anti-histamines. They all have some degree of anticholenergic action. That means they WILL cause urinary retention. Some are better than others, but they will make it harder to pee. Benadryl works very well for me. It also helps me sleep, but more the 50mg............. you can time how long it takes me to pee with an hour glass. On the bright side, antihistamines are usually very safe drugs with a high therapeutic index. That means you have to take a lot before you die. Just be sure you don't have glaucoma or an arrythmia called heart block. Antihistamines will exacerbate these conditions.