hate taking riluzole

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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
Just a rant. I'm not good at swallowing pills. It's hard for me to direct the liquid & pill in my mouth, it gets stuck in pockets near my cheeks, and when I finally do get it to the back of my mouth it is hard for me to swallow and sometimes takes several tries. Nudexta and my other medication are in capsules so they are easier, but I HATE the riluzole. It melts quickly and the substance, for whatever reason, numbs anywhere on my mouth that it sits. So when I struggle to swallow it fast enough I end up with a numb tongue, sides of cheek, and roof of my mouth. I hate it!!!

I know it's not a big deal in the larger scheme of things, but it really annoys me and I just needed to have a little rant over it after a particularly bad attempt just now left my whole freaking mouth numb. Grr.
 
Might it be easier if you crushed it in something?Probably still would get some numbness( normal) but if it went down quicker maybe less?
 
When my husband could still swallow I put his pills inside a gel capsule so could swallow them easier.
 
When my husband could still swallow I put his pills inside a gel capsule so could swallow them easier.

Oh, I didn't know you could buy empty capsules and do that. Where did you get them?
 
I tried crushing and it didn't work for me with my overactive gag reflex the taste had me gagging terribly. I used applesauce and it didn't disguise taste well at all. Maybe I could try again with something like pudding.
 
Chocolate pudding is frequently used by transplant patients, who take a lot of pills. I should also point out that you can get various flavors of applesauce; the more natural kinds, which have more apple flavor, and flavors like peach are worth trying. Yogurt is another option.

Of course, don't overdo caffeine or fat given the interactions.

Of note, Biohaven is developing a fast-melt form for this very reason.
 
After a Swallow Study, the technician taught my PALS how to swallow in a different manner. That might help.

I eat a lot of pills daily, some of which taste nasty. I've learned to fill my mouth with water, pop the pill in, keep the pill floating in the water so it doesn't touch any part of my mouth, and then I swallow, slamming the pill down so it never actually touches me until it hits my guts.
 
I've found that a straw helps me, otherwise definitely chocolate pudding or something
 
Thanks for all the suggestions. Orange juice with highest pulp is still working best for me, though sometimes a stray piece of pulp gets aspirated after which is no fun. It's ok though, this was more of a vent than anything.

Mike, what you describe requires a lot of oral motor coordination and muscle strength that I don't have. If I tried that the liquid would immediately leak out my lips. I can only take small sips otherwise it all leaks out. Add to that my crappy muscle coordination inside my mouth (hard to direct fluids with my tongue) and it just isn't an easy thing.
 
I get them from a local vitamin shop, helps them slide down easier.
 
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