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Medical Forum / Diseases and Disorders / Epilepsy / September 2004Mouth sores and Dilantin??
Hi. I am new here due the fact that mother is (77 years old) has started to have seizures within the last couple of years and after trying a couple of different drugs (Tegretol was one) with bad side effects she has ended up on Dilantin. Now she has started getting these bad mouth and tongue sore that are bad enough to prevent her from eating. Could this be because of the Dilantin ? Does anyone have similar experiences? Her doctor just says he doesn't know what the problem is and "see ya later." He is an idiot who couldn't care less about his patients but in Canada (at least New Brunswick province) our health care system is so poor that you can't switch doctors. And if you are really ill you'll be dead before you get to see a specialist. Around here if a rich person gets sick they fly to the US immediately! Any help would be appreciated as things are very hard for her now. Thanks. - Rob McFee hmcfeen628@rogers.com > Hi. I am new here due the fact that mother is (77 years old) has started > to have seizures within the last couple of years and after trying a couple [quoted text clipped - 3 lines] > enough to prevent her from eating. Could this be because of the Dilantin ? > Does anyone have similar experiences? Hi Rob I'm sitting here with a sore spot on my tongue and another one on the inside of my right cheek. They were both caused by accidentally biting them while I was chewing my food. I've been doing that a lot lately and it didn't used to happen this frequently before my epileptic condition showed up. Perhaps your mother has donee the same thing and may not remember biting herself? I've just switched over to Dilantin from another drug and I might? be biting myself more frequently than before. The drugs + eepilepsy combine to make it happen. > Her doctor just says he doesn't know what the problem is and "see ya > later." In my case it's 3 months. > He is an idiot who couldn't care less about his patients but in > Canada (at least New Brunswick province) our health care system is so poor [quoted text clipped - 3 lines] > Any help would be appreciated as things are very hard for her now. > Thanks. - Rob McFee hmcfeen628@rogers.com It's no different in the US, believe me. Bob I can't find anything about canker sores as a side effect of Dilantin. My son used to get horrible, horrible mouth sores. We started using lysine (a herbal supplement), and he's never had another one. If your mother's are causing a lot of pain, you can ask the doctor or a dentist for lidocaine to numb them. > I can't find anything about canker sores as a side effect of Dilantin. > [quoted text clipped - 3 lines] > If your mother's are causing a lot of pain, you can ask the doctor or a > dentist for lidocaine to numb them. Gum "overgrowth" is a known side effect of Dilantin. I took Dilantin for over 25 years and often bit the sides of my mouth due to this. As for biting the tongue, that usually happens during seizures. If you have no memory of a seizure, you can often tell AFTER you've had one b/c your tongue is sore. Do a Google search of this NG for this subject & you'll find several posts on it. I'm sure others will direct you to Web sites as well. I have had a few mouth sores since starting on Clobazam. (Sorry, I have no experience with Dilantin.) > Hi. I am new here due the fact that mother is (77 years old) has started > to have seizures within the last couple of years and after trying a couple [quoted text clipped - 11 lines] > Any help would be appreciated as things are very hard for her now. > Thanks. - Rob McFee hmcfeen628@rogers.com Maybe a dentist would be more helpful - he might have more experience with this type of problem. > Hi. I am new here due the fact that mother is (77 years old) has started > to have seizures within the last couple of years and after trying a couple [quoted text clipped - 11 lines] > Any help would be appreciated as things are very hard for her now. > Thanks. - Rob McFee hmcfeen628@rogers.com > Hi. I am new here due the fact that mother is (77 years old) has started > to have seizures within the last couple of years and after trying a couple [quoted text clipped - 11 lines] > Any help would be appreciated as things are very hard for her now. > Thanks. - Rob McFee hmcfeen628@rogers.com Hi. Do you know if she's swallowing the tablets Whole with milk, food or juice? I think that was listed on mine during the ~6 months I was able to use it. (Same is listed for my Tegretol). If the tablets are dissolving before she swallows them, they may be irritating her mouth. I *think there may be a Liquid form now? (not sure -- the Pharmacist could likely tell you), that might be easier for her to use if there is. There may be something under the Medications Glossary of the Ep. Foundation of America (U.S.) site http://efa.org . Also if you're near a town that might have a Local Chapter of an Epilepsy Association it would be listed in your phone book. They might have a Doctor 'on call' as part of their operation who could give an opinion. My first thought was it could be an allergic reaction until I read the other 4-6 people who already responded to you. In my case I started on the Dilantin, and when it didn't control things, moved up to Tegretol (so my comments at top). My Dr. said that Dilantin is often prescribed first as it's Older, Longer studied and if it will give control, the prescription costs are significantly lower than e.g. Tegretol. Last (for now), do you know if it was a Time Released type Tegretol (either XR or CR on prescription bottle)? The main thing with those is it's important to take the rate prescribed, not Missing or Forgetting doses. If there might be any risk of that (because of her age, even with the Dilantin), drugstores carry a 7 day Pill Case that can be PreLoaded, so that she doesn't accidentally take *2 doses by mistake, and can tell if she's taken whichever dose she was supposed to. (My initial prescription called for 2 each Morning, and 1, later 2 at night. With my keeping a paper 'log' of time I took the dose, and using that pill case, there was no risk of my Forgetting a Dose OR (as bad) taking *2 doses by mistake. G./ Thanks everyone so much for this info. I have been opening the Dilantin caps for my mother so she can mix the powder with applesuace since she has a problem swallowing pills. - Rob > Thanks everyone so much for this info. > I have been opening the Dilantin caps for my mother so she can mix the > powder with applesuace since she has a problem swallowing pills. - Rob I'd speak to her Pharmacist (usually on the Prescription bottle). You *might be able to do that and e.g. dissolve it in Apple *Juice for her to drink, then follow with the applesauce (It works with less stomach upset if taken with Food or Juice). *OR they might have a Liquid version for her (that was what I wasn't sure about and thought someone else or your Pharmacy could tell you). Dilantin has been used since about 1930 or so--> that's why I assumed there might be multiple versions available for Exactly your type of needs. G./ > Thanks everyone so much for this info. > I have been opening the Dilantin caps for my mother so she can mix the > powder with applesuace since she has a problem swallowing pills. - Rob This website may help you http://www.epilepsy.com/medications/b_dilantin_intro.html It says "The most common form is capsules, which must be swallowed whole, not chewed or opened." and "Swallow each capsule whole. Don't bite it or break it open." Perhaps her doctor could switch her over to the chewable or liquid form? if that would work for her. Considering the fact that there are a chewable & liquid forms and that Dilantin can be taken with or without food, I somewhat doubt that it is causing mouth sores. Bob > > Thanks everyone so much for this info. > > I have been opening the Dilantin caps for my mother so she can mix the [quoted text clipped - 13 lines] > > Bob I have taken Dilantin two different times and have had the sores and gum overgrowth. I always just swallowed the capsules I took with a lump full of food, then washed it down with milk. If I didn't, I would experience a burning sensation as it went down slowly through the esophagus. My mother has taken Dilantin for 40 years straight and only has the gum overgrowth problem. She just washes it down (capsules) after eating a couple of crackers. A friend of mine is so tough (lol) that he swallows his Dilantin capsules straight without liquid or anything. Eric > > > Thanks everyone so much for this info. > > > I have been opening the Dilantin caps for my mother so she can mix the [quoted text clipped - 15 lines] > > I have taken Dilantin two different times and have had the sores I'm curious about what type of sores those were and the other person didn't say either in regard to his mother. Are they lesions? lumps? I realize the difficulties in seeing them even if one is looking into a mirror or into another person's mouth although one of those small dental mirrors might help. I haven't been doing well at all myself since I started on Dilantin and have been biting the inside of my mouth & tongue quite frequently. It's not as though I'd never done that in the past, but it happens often now with Dilantin. > gum overgrowth. I always just swallowed the capsules I took with a > lump full of food, then washed it down with milk. If I didn't, I > would experience a burning sensation as it went down slowly through > the esophagus. I find that strange because it takes a while for the capsule to dissolve and your esophagus would not be exposed to the capsule's chemical contents until it did dissolve. Did any of your food cause a burning sensation also? > My mother has taken Dilantin for 40 years straight and only has the > gum overgrowth problem. She just washes it down (capsules) after > eating a couple of crackers. I simply take a drink of plain water with all of my AED's. > A friend of mine is so tough (lol) that he swallows his Dilantin > capsules straight without liquid or anything. He must salivate profusely. The capsules would simply stick to the inside of his throat otherwise. Bob > > > > Thanks everyone so much for this info. > > > > I have been opening the Dilantin caps for my mother so she can mix the [quoted text clipped - 47 lines] > > Bob Bob, The problem didn't occur with food and milk, it occurred without it. > > I always just swallowed the capsules I took with a > > lump full of food, then washed it down with milk. If I didn't, I > > would experience a burning sensation as it went down slowly through > > the esophagus. (This was just with water) Dilantin goes slowly down the esophagus if you don't drink enough liquid of course. Then it will start to dissolve in the esophagus. I swallowed alot of Dilantin dry while in a hurry in my late teens, it just gives you a great amount of heart-burn, so to speak. Someone with a dry-mouth and throat would have problems though, but never salivating unless they were taking enough to choke a horse. As I am, my friend is 40 years old. He has been on Dilantin since he was knee-high to a short duck. It is nothing for him just to pop it and swallow and forget about it. For most people, Dilantin capsules will go straight down with food and liquid, it isn't as though it were hydrochloric acid with everybody. Once past your esophagus is when it dissolves then, and then there is no problem as long as food is in your stomach. It is just having it pass through the esophagus being the main problem for many people on Dilantin capsules. I took Dilantin first in August of '82, and have been taken off, put back on, and then discontinued again. Taking Dilantin capsules without food is really ill-advised by most doctors, as are many other meds. Eric I haven't been doing well at all myself since I started on Dilantin and have been biting the inside of my mouth & tongue quite frequently. It's not as though I'd never done that in the past, but it happens often now with Dilantin. Bob, Dilantin didn't work well for me, as I have other types of seizures it won't control. If you are biting the inside of your mouth and tongue, make sure it isn't from seizures you don't remember, like ones I would have in my sleep. Your jaws can clamp tightly in your sleep, for instance, and you would never know it. Hope you get over it, because it haunted me for nearly two decades before new medication got it under control. Eric > I haven't been doing well at all myself since I started on Dilantin > and have been biting the inside of my mouth & tongue quite frequently. [quoted text clipped - 5 lines] > Dilantin didn't work well for me, as I have other types of seizures it > won't control. Eric, This is my first time on Dilantin and all signs so far are that it isn't going to work for me. > If you are biting the inside of your mouth and tongue, > make sure it isn't from seizures you don't remember, like ones I would > have in my sleep. These incidents all occur at mealtime and I am painfully conscious of them. > Your jaws can clamp tightly in your sleep, for > instance, and you would never know it. Hope you get over it, because > it haunted me for nearly two decades before new medication got it > under control. What have been clamping tightly on me at night at night are my hands. They clamp so tightly that all the muscles, joints, & tendons are overstrained and my hands are sore all day and I am unable to fully close them. The Phenobarbital that I was taking was thought to be the cause and that's why I switched to Dilantin. It isn't working plus I am now stumbling all over the place and getting double vision.when I look at small type. Bob > Thanks everyone so much for this info. > I have been opening the Dilantin caps for my mother so she can mix the > powder with applesuace since she has a problem swallowing pills. - Rob Here's some additional information I located while searching on the side effects of Dilantin. Go to the website <http://www.drugdigest.org/DD/DVH/Uses/0,3915,542%7CDilantin+Kapseals,00.html#top> and click on the link "What side effects may I notice . . . " You'll see where it says What side effects may I notice from taking phenytoin? (Back to top) Side effects that you should report to your prescriber or health care professional as soon as possible: . mouth ulcers That makes it sound as though it doesn't matter how the Dilantin gets into the body, but it is apparently a known possible side effect of Dilantin. You might want to print out that list and present it to the doctor. Your mother probably should be given a different AED than Dilantin. Bob |
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