Incontinence

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Barbie

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Lost a loved one
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How common is incontinence? and is this something more common at the end stages? and what about not even realizing that you've had an accident? could it be related to Ativan?
 
Yep incontinence of both bladder and bowels does happen for some PALS. Honest like all the progression stuff there isn't a true pattern.

Some PALS have issues from reasonably early and live with diapers for a long time. Some only start to have issues towards the end.

It's also quite common that they don't realise. I know it seems strange, but it's not an ALS thing it's an incontinence thing. It seems to be because they don't consciously 'go'.

Many PALS also have the opposite and have problems going of course.

I would not think it's related to the Ativan unless he is bombed out most of the time. Is he still taking this or did you get something else prescribed for him?

Does he use a urinal? You could try offering him the urinal every couple of hours?
 
we cut the Ativan back to 1/2 pill so he can function better. Xanax is on the way today, but is in the same family of drugs so may react the same as well.
 
Ask your doctor about Vesicare, while I don't have incontinence I do have times of "urgency" that will sneak up on me. They since abated but I have this in case they return.
 
My husband has urgency, and I do mean URGENT. I read somewhere it is because the nerve endings that signal the need to go are delayed. We keep a urinal in the car at all times because we have had accidents...then when you get where you're going you can't even get out of the car! He complains the diapers are too hot.
 
It doesn't sound to me like the problem Barbie is having with ken doll is urgency but incontinence ... she describes that he doesn't even realise he has done anything which is the opposite of urgency

I'm presuming she means bladder incontinence is that right Barbie?
 
yes.

not constant, but it is happening and that is something new.
 
Does it tend to happen when he is asleep or it happens when he is awake and he doesn't realise?
 
I don't know how common it is, but it started fairly early on with us. The rectal sphincter was affected and led to frequent small discharges, of which my PALS was unaware as they were occurring. That's the reason we went to adult diapers early on. She never experienced urinary incontinence.

One potential side effect of Ativan is diarrhea. Though Annie had no desire nor need of it, the hospice folks badgered her into taking some (mechanically following their protocol). After taking it for 4 days Annie had her one and only episode of diarrhea. Much more serious is the potential side effect of permanent muscle weakness. Coincident with her taking Ativan and the diarrhea episode was a precipitous, rapid loss of her remaining muscle strength. Up until her taking the Ativan she was spending several hours a day typing on this forum. Suddenly she could no longer use her hands - that's when I started typing for her. The diarrhea episode incited me to research the possible side effects of Ativan, and these two potential side effects were among many that I found. Perhaps they were both simple coincidences, but I'm inclined to think not.
-Phil
 
I don't know how common it is, but it started fairly early on with us. The rectal sphincter was affected and led to frequent small discharges, of which my PALS was unaware as they were occurring. That's the reason we went to adult diapers early on. She never experienced urinary incontinence.

One potential side effect of Ativan is diarrhea. Though Annie had no desire nor need of it, the hospice folks badgered her into taking some (mechanically following their protocol). After taking it for 4 days Annie had her one and only episode of diarrhea. Much more serious is the potential side effect of permanent muscle weakness. Coincident with her taking Ativan and the diarrhea episode was a precipitous, rapid loss of her remaining muscle strength. Up until her taking the Ativan she was spending several hours a day typing on this forum. Suddenly she could no longer use her hands - that's when I started typing for her. The diarrhea episode incited me to research the possible side effects of Ativan, and these two potential side effects were among many that I found. Perhaps they were both simple coincidences, but I'm inclined to think not.
-Phil

Sorry for your loss Phil.

Do you happen to have a reference link or links to that?

They have me on ativan and while I haven't had any side effects I would like to talk with my Doctor about it and have any relevant research at hand.

Thanks,
Brad
 
Sorry for your loss Phil.

Do you happen to have a reference link or links to that?

They have me on ativan and while I haven't had any side effects I would like to talk with my Doctor about it and have any relevant research at hand.

Thanks,
Brad

Sorry Brad, but that was 4 years ago and I don't recall the links where I read those potential side effects. I just remember being incredulous that a doctor would insist that an ALS patient who had no anxiety or air hunger take a drug that could potentially further diminish already seriously weakened muscle strength. I assumed it was information that he was unaware of. I do recall that it didn't take a great deal of searching before I ran across that info.

I would guess that if you've been on it a while with no side effects that it would be unlikely that you would have them in the future. If Annie's diarrhea and/or sudden diminishment of muscle strength was in fact a side effect, then it happened pretty soon after beginning to take it. I'm pretty sure that the potential for muscle weakness was listed as "rare" or some similar adjective, while the potential for diarrhea was significantly more common.
You have my best wishes.
-Phil
 
Thanks Phil and you're right about if it hasn't hit me yet it probably won't re: side effects.

My PCP had me on Xanax and my ALS doctor switched me to Ativan as she felt it does a better job of handling the fasciculations, etc... and I guess it's less potent than Xanax.

Take care,
Brad
 
Thanks Phil and you're right about if it hasn't hit me yet it probably won't re: side effects.

My PCP had me on Xanax and my ALS doctor switched me to Ativan as she felt it does a better job of handling the fasciculations, etc... and I guess it's less potent than Xanax.

Take care,
Brad


Brad, I just did some searching for "Ativan permanent muscle weakness" and a lot of hits came up. One is Common and Rare Side Effects for Ativan oral lists muscle weakness as common and severe.

Another is http://www.medsafe.govt.nz/profs/Datasheet/a/Ativantab.pdf which contains the statement "Ativan could increase the muscle weakness in myasthenia gravis and should be used with caution in this condition." I thought it was interesting that MG would be specifically called out - I would think the same caution would apply to ALS. Anyway, there are a lot of sites that show muscle weakness as a potential side effect. Many also warn about prescribing it to patients with depressed respiratory function.

I wish you well.
-Phil
 
Brad,
Given the many downsides to benzos, I would be using them as last resort for fascics. These days, tizanidine or baclofen at a low dose, or even a general muscle relaxant, would usually be tried first.

Coming off benzos, as you may want to do one day, can cause their own fascics, they change sleep architecture, are sedating, often create tolerance requiring higher doses for the same effect, etc. These are some of the reasons why drugs like Ambien were invented; formerly, benzos were used routinely as sleep aids. As for Ativan, it has a longer half life than Xanax, so should be a smoother level curve. But still, all of the above applies.

I know of no guidelines that favor benzos for this indication.
 
Barbie,
Although my pals wasn't incontinent until very recently, he hid have urinary and bowel urgency. 3 of the times I was getting up at night was so he could urinate. We got doctor prescribed self adhesive condom Caths and they are wonderful and saved me three of the get ups at night! Now using during the day as he falls asleep and doesn't realize he's going sometimes.
Sherry
 
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