I’m Back on the MS ‘Bladder Coaster’
I thought I finally had this bladder thing licked.
After years of urinary urgency and frequency, I’d been doing much better. I was sleeping at least seven hours a night without having to go to the bathroom, and bathroom trips were less frequent in the daytime, too.
When traveling by car, the once common question “How long to the next rest area?” became less of a concern. During our annual 1,000-mile drive from Maryland to Florida a couple weeks ago, I only had to stop twice while driving each day.
Yet despite all of this, a few days ago, my “bladder coaster” looped a loop again.
Medications helped to a point
For decades, I’d used Ditropan XL (oxybutynin) to help ease my bladder problems. After a while, though, its efficacy seemed to wane.
I’d started with the brand-name medication, but switched to a generic version after a few years. As I’ve written before, generic medications don’t always do as well for me as brand-name ones.
I’d heard of a more effective medication called Myrbetriq (mirabegron), and after using it for two months, it seemed to be making a difference. While it’s expensive, I thought it was worth the cost. Was I wrong?
A diet change also helped
I love coffee, strong and black. One mug in the morning had started my day for as long as I can remember. But caffeine is a bladder irritant that leads to frequency and urgency. The same can be said of orange juice, chocolate, ice cream, and several other things, though it varies by person.
In early November, I gave up coffee and orange juice, which I think helped. There was no way I was giving up chocolate or ice cream, though.
Up and down
A few days ago, the urgency and frequency returned, waking me up at least twice a night. I was also rushing to the bathroom during the day. So, what happened?
I’d had some wine for the first time in quite a while, and I’d also been snacking on mini candy bars more than I should have.
Then, after two days of experiencing these problems, my “bladder coaster” swung back around again. I was able to sleep through the night again and didn’t need to rush to the bathroom during the day. I feel like I can take a long car trip again.
My pendulum-like experiences with my bladder have prompted several questions, such as what changed to cause all of this? Was stress to blame? Was it the weather? Was I tired because of our car trip? Could alcohol or chocolate have been the culprit?
I’m betting it was either the food or the fact that this MS “bladder coaster” I’m riding comes with a lifetime ticket.
You’re invited to visit my personal blog at www.themswire.com.
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Comments
Leanne Broughton
I am on and off the roller coaster. I do know what causes it - coffee, tea, carbonated beverages and alcohol. I have stopped using these items but I can not eliminate coffee, I drink one cup in the morning. If I have another coffee, which I sometimes do, I must suffer the consequences. I use Vesicare daily, mostly effective for nightime. That leaves me drinking Water only.. I have a new appreciation for it. This disease is ever changing, once you think you can manage something, it changes.
Kit Minden
It's a constant battle for so many of us. We keep giving up the pleasures of adult life but still can swing back to a weaker state in one area or another. MS is a bear at the end of winter - mangy, starving, and on the hunt. Sometimes it's hard to make peace with that at all.
Debbie W
I too was on oxybutynin and changed to Myrbetriq. Some days I think it is a miracle drug and others I'm back to the same urgency issues. I have tried to analyze my diet, my stress levels, how much exercise I've done, and can't seem to pinpoint any one trigger for sure. I guess, for now I will continue to ride the merry go round. All aboard!
Ed Tobias
Hi Debbie,
Thanks for the comments.
Merry go round or roller coaster, I guess we're in the same amusement park.
Ed
Ellen Lerner
Hi Ed , I read an article about Oxybutynin that said there were warnings and side effects that were not very positive. I got rid of my leftover pills. Most meds have some kind of warning but I wasn’t happy about that one.I did take it for a while, and it didn’t do much for my bladder urgency issue. Then I read an article that has info that works for me. I get two prescriptions one is for generic Vesicare called Solfinicin (sp?) and the other is for Myrbetriq. Taking them singly which I did, Was not all that helpful, yet when I saw this article it said take those two drugs and rotate them every other day. It made a big difference. My bladder situation is so much better now. Not perfect but much much better. You might have to convince your doctor that it’s OK to give you both drugs and that you will not be taking them on the same day but on alternate days.. The article did mention however taking them in the same day was OK but I doubt most doctors or pharmacists would agree with it. The two drugs last longer if you’re doc is OK with it especially since Myrbetriq is brand name and somewhere expensive. 90days last 180 days taking each every other day. If you can find that article online print it out and give it to your doctor.
You did not mention it so I assume that some of your urinary issues are not related to prostate issues as well?
I hope it works for you If you try it. I look up at these two drugs online and there was some very positive feedback about them and helping urinary frequency.
Ed Tobias
Hi Ellen,
Thanks for the info. I'm happy with Myrbetriq and will investigate the possibility of alternating it with Vesicare. I don't think there's a prostate issue...at least my primary care doc has told me, as recently as last month, all is well with it.
Ed
Herb Leifer
Ed, like you I have been on that bladder coaster as well. Two things have practically eliminated my problems. First, I had a minimally invasive procedure called Uro-Lift. Relatively new, it is a fabulous procedure that reduces the pressure placed on the urethra by an oversized prostate. . Most men over 65 have enlarged prostates. I still had some urgency problems after the procedure, so I was given a medication called Toviaz. Toviaz works specifically to regulate signals that the brain sends to the bladder. Two weeks after starting this medication, my urgency problems have virtually disappeared. Toviaz is expensive, but it is a Pfizer drug and they do offer the drug free to those who qualify for their Patient Assistance Program. Hope this info helps those who battle the same problems.
Ed Tobias
Hi Herb,
Thanks for the Uro-Lift and Toviaz tips. I'll investigate both. Meanwhile, the coaster has settled down the past few days/nights. I have no idea why, but I'll take what I can get.
Ed
Jennifer Montgomery
Great column and I am glad you are improving! I have gotten up at least 2x per night (sometimes 3) ever since I was a small child. I have mastered the art of essentially sleepwalking to the toilet and then returning to bed as if I never left……
Ed Tobias
Hi Jennifer,
I've glad you liked the column. Also glad you can get right back to sleep after you get up. Sometimes I can, sometimes I can't. Before I retired I was a manager at the Associated Press news organization and was frequently awakened by middle-of-the-night phone calls, so I'm used to getting up, with or without bladder problems.
Ed
Michelle
Ed, I am glad you are back to an acceptable level with your bladder. After trying numerous medications for my bladder, I gave in and had a suprapubic catheter placed. Sleep for hours at night. Wonderful! Unfortunately, now my bowel function is causing major interruptions in my daily life.
Ed Tobias
Hi Michelle,
Well, for the first time in many years I returned to bowels that are almost everyday regular a couple of months ago. Is that due to my Lemtrada treatments, a change in diet, trying to drink more water? Who knows?
Ed
Lisa
Have you tried Botox on your bladder? It has changed my world!
Ed Tobias
Hi Lisa,
I've thought about it but I just can see myself self-cathing. My neuro says that's not necessary but everything I've read suggest it probably is. What's been your experience?
Ed
Tom Anderson
Hi Ed- I tried the oxybutynin years ago and didn't like it because I could always "feel" I was on it. I didn't seem to do anything for me anyway. It's a hassle especially as one gets older because you have prostrate changes and the concerns that go along with that...what really is making the bladder not function well when you're old and have MS? Certainly don't like the idea of "tubing" myself- that's not gonna happen unless there is absolutely no other choice. So then, it's just timing and being aware of self and bathroom locations in public spaces, and especially, wearing a diaper. It is so easy to do when out, and no side effects, and no fear of embarrassment. But does the fact I know I am wearing a "diaper" (65 cents each in large quantities on Amazon), make me think I am not a "man"? erhh,... no, it doesn't.
Ed Tobias
Hi Tom,
You're right, it's sometimes hard to tell what problems are due to age and what are due to MS. For one reason or the other I, too, buy in bulk from Amazon.
My coaster has been behaving, again, the past few days. Who knows why?
Ed
MARY ELIZABETH GAIN
I have the opposite problem. I can-t go. Diagnosed in 1984 but know that I had MS before that time.
Ed Tobias
I'm sorry to hear that. I hope you've talked with your neuro, or a urologist, about this to try to solve that problem.
Ed
Bruce Pollard
I self cath 4 times a day. It solved a lot of embarrassing problems.
For me I think it is the best solution - otherwise my bladder was always full until the last moment.
We did lots of ultrasound and dynamics studies to see if there was another solution.
Non of the drugs worked.
Ed Tobias
Hi Bruce,
I'm trying to put off self-cathing as long as possible...hopefully forever. Right now the coaster has been behaving again, so fingers crossed.
Ed
Bruce Pollard
Every case of MS is different. Sounds like you are lucky on the bladder sphincter muscle control.
Keep writing. Your voyage is the most interesting and well written I have seen.
Bruce
Ed Tobias
Thanks, Bruce. I'm glad you enjoy what I write and I hope you find info that's useful to you.
Ed
Dori Rocco
Try AZO Go Less. It's amazing!!
Ed Tobias
Dori - Thanks for the suggestion. I never heard of this.
Ed
Judlyne Lilly Gibson
I'm saying HELLO to Ed Tobias who might remember me from the good (bad?) old days in DC Radio and TV.
I'm reading this article because I'm married to a man who has MS. And I watch him struggle with it every day.
I hope is well with you and your family. If you'd care to, send me an email at my aol address as I don't read this newsletter as often as I should.
Ed Tobias
Judlyne - I sent you an email.
Ed