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    Old 05-22-2006, 03:20 AM   #1
    Travis from MN
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    Eating problems

    I've posted about this before in passing, but my eating supression with TOPAMAX has become a major issue with me now. I went a day and a half without eating and mentally had to make a snack to eat, while I was still not hungry!!

    This issue with Topa is driving me up the wall. I brought it to my Dr, but he did NOT want to reduce it at the last appointment. Only the Keppra at that time.

    I am seriously thinking about seeing a dietician to see if they will have anything to say, but thats usually for the OTHER weight side. I am managing to hold my weight amazingly, not lose, but I'm sure I have lost muscle. I notice I can't lift as much as I could before.

    Have any other of you Topa patients come to this extreme? To the point where it's you find no desire to eat?

    I'm at 450/day of Topa (200 am, 250PM)
    600 AM and PM of Teg XR
    and 1125 AM and 1500PM of Keppra (using 750's)
    nothing else, nothing else planned thankfully (atleast additionally)

    The lack of eating (desire to eat) is what scares me. I know I need to eat, but that is what always triggered me to make meals in the past. You eat when you are hungry. Topa supresses the hunger from the mind. I seriously think this medication could cause people to become anorexic who never were.

    worried,

    --Travis

     
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    Old 05-22-2006, 02:00 PM   #2
    bettyst
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    Re: Eating problems

    Travis,
    Tripp had problems with weight loss when he was on Topomax and Zonegran. He is eating me out house and home now that he is off those! LOL
    Keppra seems to make him want to eat all the time. He needs to gain back all the weight he lost.
    Have you thought about thoes drinks that help you gain? Tripp took Ensure for a few weeks when he lost so much weight.
    Betty

     
    Old 05-22-2006, 03:33 PM   #3
    neurowreck
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    Re: Eating problems

    I've had problems with not eating with meds for 2 1/2 years- have been doing nasal supplements at night of either fluids or Pediasure (other pre-packaged drinks caused diarrhea), along with ProMod protein supplement...usually 4-5 nights/week. If I don't , I get dehydrated, and the seizures get worse. I know how to put the tubes down, as I've done this on patients, and the tubes are small, and I use a pump to regulate the flow. Mostly, it's an aversion to the sight, smell, and 'feel' of food in my mouth, along with not even bothering to think about eating. I don't know which med made it worse, though have some suspicions- but without the meds, I don't function at all....

     
    Old 05-23-2006, 09:47 AM   #4
    Travis from MN
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    Re: Eating problems

    I tried ensure, but couldn't handle the taste of it for some reason. I still have a sealed can of the powder. This was back when the Topa effects were first starting at 200/300mg and I was able to get over the hump and be able to force myself to eat.

    NOW the forcing myself to eat is getting harder and harder to do sadly. I never ate in morning, I would eat lunch, and a dinner if you look at my eating history. Recent months it has been two HALF meals a day usually

    Thats why I try to purchase easy to eat foods. Simple to make meals, etc. So I don't have to worry about the labor over cooking while still getting nutrition.

    --Travis

     
    Old 05-23-2006, 04:22 PM   #5
    neurowreck
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    Re: Eating problems

    If the Boost or Ensure was ice cold enough, and slugged down, it was easier, but still no picnic (no pun intended). It got so bad, that the tube was the only option for both hydration and nutrition purposes, and has actually helped get my guts used to some form of nutrition going through. With the tube, I have to dilute everything, to avoid the diarrhea, but that also gets water in (which I hate), so that's ok...with "fluid" nights, it's diluted gatorade.

    With the laryngeal swelling after last weeks' intubation attempt, my throat has been extremely intolerant of anything solid, so have been trying soups, sherbet pops, etc... still a battle. I'm at the point, that if the doc ever suggested a gastric tube (instead of the nose hose), I'd say yes, just to have it there, and easier than putting the nose tube in. It's not THAT bad, but still not pleasant. Fortunately, it's small, and if I set the rate on the pump to 6 oz or less/hour, I tolerate it ok, and it acts as an alarm clock when it's done !!

    I know it's hard- people don't realize how it can be such a battle to "just eat", and then when nutritional balance gets messed up, the focus becomes on eating issues, just like those WW2 experiments with starvation and re-feeding.

    Pediasure has been much easier to tolerate thru the tube- haven't tried drinking it, but it's less concentrated in some ways, while still having the calories and some vitamins (not adult level, but that's easy enough to fix with a multivitamin- I can't take the ones with all of the minerals, unless they're the chewables- taste them for days- making eating taste like a metal wad in my mouth).

    I'm nowhere near underweight, but have lost weight with this, then metabolism slowed down, and now, basically maintaining with what I'm doing. I'm trying to maintain strength to get moved in a little over 3 months, and it's hard when most days it's an effort just to get household junk done....

     
    Old 06-22-2006, 07:14 PM   #6
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    Re: Eating problems

    I also had eating problems with all the different meds that I've been on. With one combo I also would have to force myself to eat things. I would go days without even realizing that I hadent eaten until someone would ask me what I had for lunch.

    Then after a different combo of meds I couldn't stop eating. I would eat from when I woke up until I went to bed. My boyfriend was worried about it because he realized that I was putting on ALOT of weight and was concerned about me, so I stopped eating infront of him and would wait till he went to bed an eat a half gallon of ice cream with half a bottle of syrup on it (this is not an exeration)!

    Now the dr has changed my meds again in Dec and I have lost about 45 lbs. I'm eating but I know it's not like I should be. I'm not hungry all the time but I am being sure that I eat at least one decent meal a day and will snack on fruit or granola bars. I drink alot of fruit drinks and V8 and anything else that may be healthy for me. I'm very glad that I've lost this weight but I want to make sure that I don't end up like I was before.

     
    Old 06-23-2006, 09:10 PM   #7
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    Re: Eating problems

    There are bars that aren't bad (PM me if you want the name).... they've got a good source of protein, and don't taste like cardboard.....an idea.....and not a drink !!!

     
    Old 06-25-2006, 10:33 AM   #8
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    Re: Eating problems

    Quote:
    Originally Posted by Travis from MN
    I've posted about this before in passing, but my eating supression with TOPAMAX has become a major issue with me now. I went a day and a half without eating and mentally had to make a snack to eat, while I was still not hungry!!

    This issue with Topa is driving me up the wall. I brought it to my Dr, but he did NOT want to reduce it at the last appointment. Only the Keppra at that time.

    I am seriously thinking about seeing a dietician to see if they will have anything to say, but thats usually for the OTHER weight side. I am managing to hold my weight amazingly, not lose, but I'm sure I have lost muscle. I notice I can't lift as much as I could before.

    Have any other of you Topa patients come to this extreme? To the point where it's you find no desire to eat?

    I'm at 450/day of Topa (200 am, 250PM)
    600 AM and PM of Teg XR
    and 1125 AM and 1500PM of Keppra (using 750's)
    nothing else, nothing else planned thankfully (atleast additionally)

    The lack of eating (desire to eat) is what scares me. I know I need to eat, but that is what always triggered me to make meals in the past. You eat when you are hungry. Topa supresses the hunger from the mind. I seriously think this medication could cause people to become anorexic who never were.

    worried,

    --Travis
    you are right about the anorexic topamax i ended up being allergic but the keppra has been my suppresant and if i do eat i usallaly want to throw up about 30 mins later because it hurts .I got so bad that I went from165 two 93 pounds in less then 4 months the docter told me to treat food like medicen or i would die .what saved me was having my baby but it is getting so hard to eat agin. much support and love DragonPrincess

     
    Old 06-27-2006, 09:41 AM   #9
    Travis from MN
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    Re: Eating problems

    If I had more money to spend (don't we all wish) I find if I go to the deli counter and buy the Salads (pasta) or similar items then I'll eat those easy.

    However I can't efford to spend that type of budget on food. SO I'll buy one or two servings every week at the counter along with my shopping.

    I'm stilll getting by. Good to know that there are more of us out there with this problem related to Topa.

    --Travis

     
    Old 06-27-2006, 10:03 AM   #10
    neurowreck
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    Lightbulb Re: Eating problems

    Instant breakfast is cheaper,and tastes more like milkshakes than the prepackaged stuff, and has the same nutritional value.....just get the milk ice cold, and they're like chocolate milk, other flavors I've tried are vanilla and strawberry, and they were ok- much less 'rich and tinny' than the canned stuff.

     
    Old 06-27-2006, 07:20 PM   #11
    valeriedl
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    Re: Eating problems

    Another thing that I will do (but I don't know if it's healthy or not), is when I get a craving for something (like a grilled cheese sandwich, omlet, fruit etc...) I go out and eat it right then and there. If I wait (maybe only an hour) the craving may have gone and then I'm not hungry.

    I'm on a kick with the meds right now that I don't want to eat, where as before I would eat anything in sight and it didn't matter what it was (I was putting food combos together that you would have thought I was pregnet!)

    I've found that I've really liked the frozen dinners. I'm a vegitarian so I've got to watch what I'm eating and making sure that I'm getting enough of everything. Lean Cusine in pretty inexpensive and so far to me the food has tasted pretty good. This is what my dad gets too because he has diabeties and has to be careful with what he is eating. Carnation instant breakfast is really good I try to drink a glass of it every morning.

    don't know if this helps, but good luck!

     
    Old 06-27-2006, 08:25 PM   #12
    neurowreck
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    Re: Eating problems

    I've done that too= if the urge hits, eat it right then, go get it, order it, or whatever....otherwise, the desire fades, and forget it.

     
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