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    Keppra question/appetite
    ktexas1026 posted:
    Hi there!
    It's been a while since I've checked in here, so I hope everyone is doing okay. I just had a quick question, if anyone has experience with Keppra. Of course, I did a little research as soon as I was put on it. It took 2-3 weeks to get "up to therapeutic dosage", but I've now been at that level for a month or 6wks...I forget. The smell of smoke that I've had, HAS seemed to have disappeared 99% of the way (hoping it's not just an "off phase", b/c I am enjoying NOT smelling stale cigarette smoke constantly!). LOL

    But in my research, I read that Keppra can DECREASE your appetite...which made me think "Oh great! I already have NO appetite, how low can it go???". And then I thought it was a fluke that after the FIRST dose of keppra, I woke up with a RAGING appetite. And I have NEVER been a breakfast takes me a good several hours for stomach to "wake up", so I usually just wait for lunch...since I was a KID. But after my first dose of keppra, I woke up starving! Same thing the next morning, & the morning after that, etc, etc. Then as my dosage increased, my appetite became more consistent, instead of just being in the morning (since I was taking my first doses only at bedtime). Now, I feel like I am fine one second, & STARVING the next! I'm not complaining, by any means, b/c at least now I'm eating. But I haven't found ANY information as to why this might occur with keppra, b/c everything I've read says the exact opposite. So, I'm just curious if anyone else has had this bizarre side effect.
    Hope everyone is doing well! Thanks for any insight!
    dancer86442 responded:
    Hi Kim,

    Good to see you again. I asked my daughter about her experience on Keppra. Unfortunately she was on 2 other meds w/ Keppra, so couldn't give me any Insight about your 'problem'. But, she did say it was a Good thing that it increased your appetite. So, I am just gonna assume that since meds affect everyone different due to their systems, this is 'unique' unto you. She did recommend that since you are now eating breakfast, that you load up on Protein (eggs) and then for the rest of the day try to eat small portions every few hrs. Which is what WebMD recommends for those w/ weight issues. I know it may be 'tough' to adapt to a New eating regimen, but, it would be for the Best.

    You Forget how long you have been on your meds? This is Why you need to keep up w/ your Daily Journal.

    I'm glad to hear the Keppra is working for you. Whoohoo! You have made it past the 'trial & error' phase, so it Should continue to work for you.

    Keep us updated. I will be here for you.

    Hugs! Love Candi
    jenbayly17 responded:
    I am fairly new to this community so I will introduce myself, My name is Jen. You and I have been going through a Keppra change at the same time basically. I am also on Gabapentin and Dilantin which I am starting to taper away the Dilantin this week. Anyways the appetite issue you are mentioning sounds familiar at this point for me, but my time of day is afternoon. In the morning I am not that hungry, but I am really trying to get back to my normal eating routine so I still eat a small breakfast. I have been on the keppra now for 3 weeks. I know I am on other meds now as well so our reactions may differ a little. I agree with Candi though as to break up your eating through the day but that also is how I have been doing it for a while because of a weight program I was on before, I had previously been on a medicine that made me gain weight and I didn't exercise regularly so I ended up having to lose 120 pounds to get myself back to a healthy weight. I have also read a lot about keppra and also others stories in this community about keppra and it seems it is not just you and I going through this because I have seen some stories about gaining weight. It took me almost 2 years to lose the weight I did so I know adjusting your normal eating habits can be hard but if it is going to keep you healthy and make your medicine work better potentially it is worth a try. We will both get adjusted to our new appetites or anything else that comes up. The trial and error period is bizarre sometimes. I hope all is going well otherwise and hope to hear back from you soon.

    saxofone1 responded:
    Hi Kim,

    Welcome back! I never had the appetite problem with Keppra. Like Candi's daughter I was also on addditonal meds. And I always had a big appetite but could never gain weight. The inability to gain weight was most likely due to one of my meds. One of the other meds was Topomax which has a side effect of low body wieght. Here we go countering meds again.

    My stomach growls/rumbles constantly but I'm not always hungry. My doctor said it could be a case of unsettled nerves. Just a thought to throw out at you.

    If you haven't already, do get that daily journal started up again.

    Have I ever mentioned that I was part of the Keppra research group when I lived in Mpls. It was then known as "LO59". I think Dana(clarinet2) may have participated in it also. I'll have to ask her next time we talk.

    Good to see you hanging in there with us, Jen.

    Wish everyone a good day. Enjoy the weekend.

    ktexas1026 replied to saxofone1's response:
    Hi everyone~
    I'm not even sure my doc TOLD me to get a journal. I mean, he did say he needed to have some way to quantify, or prove, the Keppra was working or not. My indication was the smell of cigarette smoke (which has been coming back, off & on, since I wrote the first discussion comment up top). My memory is also "better", but taht isn't saying much, I don't think. But so for THOSE reason, I think it's "helping". I have read of so many people on multiple meds... is that for severe seizures only, or just any/every type??? Mine are temporal lobe & I have never had a "full on seizure", just the absence seizures, or losing time. And the smell of smoke, & deja vu, etc. But obviously, I don't want to be a walking zombie, but do they just put you on something like Keppra until it stops working & then add another???

    As for the hunger, I've been lucky so far seeing as how I'd lost about 20 pounds BEFORE going on the Keppra. No idea why I had zero appetite for nearly TWO years, but the morning after the first Keppra dose, I was starving! So, of course, now that I'm eating more normal, I know I need to exercise & stay ata healthy weight...but I don't seem to be putting any back on... so far. That's why it's bizarre to me. As little as I was eating before, I should be putting it back on at least. But oh well.

    As for the journal, I'm not sure what I'm supposed to be keeping track of, b/c now I can't even remember if he DID tell me about it. LOL I realize, writing down meds/doses. That's easy... it's everything else that will be a pain. If I have a bad memory day, I might not remember later to write it down. When do you guys write things down in your journals??? Throughout the day? or at the end of the day?

    Thanks for all your input, you have no idea how helpful that is!
    ktexas1026 replied to ktexas1026's response:
    Oh, not to keep on about the appetite thing (it's just really puzzling to me--LOL), but I'm not hungry 100% of the time. It's more like one second I'm "sorta hungry", & then all of a sudden it feels like (what I imagine...) my blood sugar bottoms out & I'm shaking & can't think about anything but how to get FOOD in my mouth... of ANY kind! LOL And I'm a pretty petite person, who had ZERO appetite for nearly 2 years, so it's kind a weird. Fine one second, a tazmanian devil the next! Hahaha, I don't know why that image cracks me up so much. And people used to think I had an AVERSION to food or something, but I've always just been the type "I'll eat when I'm hungry, & I won't eat when I'm NOT"... but that often led to me not eating til late afternoon or dinner, even. But to the person who said I need to make sure I eat smaller, more frequent meals, you're right! THat's exactly what I'm trying to do, b/c now I'm hungry every 2-3 hours, like if I had hypoglycemia or something. It's insane! But I love the tip on eating proteins (eggs) in the morning...b/c not being a breakfast eater, I need to do my research on what is best to eat first thing in the morning. Being from the south, that would either be poptarts, or bacon, homefries, eggs & biscuits! I want some fried potatoes & BACON!

    So, please tell me my "journal" doesn't mean I also have to write down everythign I EAT too?????? LOL I never kept a food diary for very long when I was a teenager & had terrible migraines, I doubt I could do it NOW. But meds, maybe random symptoms here & there... maybe.
    dancer86442 replied to ktexas1026's response:
    Journal Info is under Tips. Yes, food is to be included. Especially when titrating onto a seizure medication. Drs Don't tell you This! Just like they 'Forget' to tell you a lot of other things concerning Epilepsy. Ever have a DR explain proper Seizure First Aide? I haven't! Ever have a DR discuss SUDEP (Sudden Unexpected Death Due to Epilepsy)? I Haven't! Ever have a DR explain Epilepsy in terms we Can Understand?? Nope! The List Goes On! If you don't know the Rite Questions to Ask, you don't get Told! Sometimes, even if you Ask Questions, especially about your meds, They Don't Know! You learn from People w/ Epilepsy, who Have Been There, Done That! Who did their 'Homework' or actually Did have a DR who cared enough to do his Own Homework. And cared enough to Share the Info w/ Others'.

    Did you know there are Apps on Cell Phones that make Journals easier to keep? has a Calender/Journal that one of our ex members does the art work on. Angie, that would be MY.

    Yes, Low Blood sugars can cause them tremors. Have you ever been tested for Diabetes or Low Blood Sugars & other causes? Some of our meds are the Cause of High or Low Blood sugars. Something in the chemical composition of our meds can do weird stuff. Some of the meds, Keppra may be one, are coated w/ Aspartame, which is Bad for us. Sorry for ramblin, here. I am glad our replies have Helped. Remember: The More you Share, the More we Know. And Others' in the future will Benefit from you Sharing! Hugs.

    Love Candi
    jenbayly17 replied to ktexas1026's response:
    I know it is over overwhelming to start that journal. I do mine throughout the day so I don't forget anything. A good place to get ideas of what to take down is in the Tips area of this epilepsy community. You can search journal but the name of the thread is "journals posted by meetz." It has a lot of suggested things to journal. your post above about the breakfast foods made me smile. I get the same way but mostly in the afternoon with snacky foods. I have not experienced the smoke smell but I get dry mouth several times a day.

    I have usually been on one or two meds. So it depends on the medicine and how it reacts with the person individually. I am going through a med change now but the goal is to be on one med or two in the end. I am sorry that may not be what you are wanting to hear. but I have learned the more the doctor knows about your symptoms, daily activities, how you feel, what you eat, and how much you sleep can help the doctor find the right path to making your seizures manageable and help you live more a more comfortable life. I realize your doctor didn't tell you about the journal but sometimes we as patients have to be proactive.

    Even though our health is a definite priority keep laughing. that laughing can relax your body and when we are relaxing it is less likely for us to have those pesky seizures.

    Keep coming back and chatting and let us know how you are doing. We all learn from each other. Have a good weekend!

    saxofone1 replied to ktexas1026's response:
    Hey Kim,,

    The Tasmanian Devil is one of favorite characters. He is true to himself and goes his own way...Independent Thinker.

    Have you ever thought about the egg substitutes for breakfast? My general doc suggested them to me cuz my chloresterol was a bit elevated. I'm an egg freak too. Onions, bell pepper, cheese, or ham and you won't know the difference. Try turkey bacon so that you don't all that fat from the bacon we grew up with. I'm not from the south but my mom is. I know what you mean about the breakfast foods.

    A journal becomes second nature once you get the hang of it. Years ago, it helped me notice my high intake of sugar. I also saw a connection with that high sugar diet and seizure activity I eventually swithched to yogurts, teas, and sparkling waters. Ido cheat every now and then.

    Does your doctor have a seizure calendar that might help you with this? I never had a daily entry. I would simply record my seizures, and the activity and foods I ate within the past 36 hrs of rhem. Happy faces went on the days that there were no seizures. A simple pocket calendar will also work.

    This calendar is also beneficial to your doctor. Foods and meds can disagree also. Always something, isn't it?!!!!

    If I've rambled on or simply repeated what Candi or Jen have said, now they have backup.

    As Candi has said, doctors talk in a language we don't understand. I'm still playing catch-up with last yrs technology. Ask the doctors to break it down as if it was your first day in med school. Simple terms.

    Best wishes to all of you for a good day.
    aaannnjay!!!! LOL
    ktexas1026 replied to saxofone1's response:
    Wow, everything you guys have said makes a lot of sense. It is very frustrating to know a doc may not tell me all I need to know... although I'm a google-freak anyway. I google everything, maybe b/c I don't trust them enough to tell me all I need to know. But I remember reading about keeping a journal, but I thought that was mainly for people with actual convulsions. Because I have no idea when I've had a seizure...that's the problem. And I can't tell how LONG I might've had one either. That's why I might've just assumed the journal didn't apply to me. But I did see that there are some apps, so I'm going to try that & see how that goes. I did see this cool app for those who DO have convulsions... if the phone is in your pocket, it can detect movement outside of "regular movement" & can notify someone if/when you have a seizure! That is GENIUS!!! LOL Unfortunately for me, that wouldn't help me at all.

    That's been the toughest thing, I think ,is navigating all this when my "diagnosis" is more of a diagnosis of exclusion, & b/c several of my symptoms DO match temporal lobe absence seizures, so I feel like there's still a SMALL question of whether it's something ELSE. Even though there isn't anything else that fits all the symptoms.

    SO... I will start the journal, especially now that the smell of smoke is coming back, so that might mean an increase is Keppra is needed, or possibly an additional medication.

    Thankfully, I am also in the process of starting my own business (which is a healing business, & includes teaching a meditation class), so there couldn't be a better time for me to be involved in some regular de-stressing! I'm taking everything with a grain of salt & just going with the flow (b/c I know stressing about it will make it worse...especially seizures!), & realize that I can think of 1,000 OTHER things that I'm thankful I DON'T have...but I just have a million questions. And I know I'll learn, & SO thankful to have come across you guys, & would love to put together a database or something where everyone shares their beginning symptoms (what sent them to the doc the first time), & what they're ongoing symptoms are now...maybe what type of epilepsy they have, & what meds have helped most, & what meds they've tried. Or for those of you who are parents of someone with seizures, you can obviously give YOUR take. What do you guys think of that? It could even be anonymous if people preferred? I'm still learning about temporal lobe epilepsy, etc, & that certain meds are better for it, & that certain meds are also better for certain SYMPTOMS too. And I think newbies might find that helpful, to look on the list to see who has "their type" of seizures, how long they've had it, & how long it took them to find the right meds, etc. Even though, it is still different for every person...but what works for ONE person with TLE & phantosmia, MIGHT be a good first-try for someone just finding out they have that same thing. I don't know, I'm thinking out loud. LOL

    And now I'm rambling. Which brings me to another question...I've read about "hypergraphia", & when asked if I write a lot, or write in a journal, my answer was "no". But when I really looked up the word, it said it could mean that you just have a lot to it can come out in EMAIL too, not just handwriting...... or in posts in an epilepsy forum like right now. But then I have to wonder if that's just my ADD too. yes, I have ADD too..... yay me! LOL I talk a lot, & I ramble (so I sincerely apologize!), whether it's an email, or text, or whatever, & no matter HOW hard I try to make it short... I just CAN'T. So, I was curious if that could a form of hypergraphia, or is it just my ADD? hahaha

    Now I really AM going to shut up! Thank you guys for "listening"... and for your responses! I am going to try to post more often, even if just to say hi. And I might work on creating that file in Google files or something (if they still have that)
    ktexas1026 replied to ktexas1026's response:
    HOLY CRAP!!!!!! I am SO sorry for that ridiculously long reply!!! I was on a roll with my thought process & just kept going, I suppose! LOL I am SOOOOOOOO sorry!
    ~Kim xo
    jenbayly17 replied to ktexas1026's response:
    I love your entries, they make me smile. You have a great sense of humor. about the journal piece, I honestly didn't start a daily one until this med change otherwise, like Angie I have a listing/calendar of the seizures I have had. Your idea about the database seems really ingenious but I am not sure how much people will actually put out there. I am pretty open with my history just to let people be informed around me especially so they know what is going on if I were to have a seizure. However there are sometimes that people find out this type of information and they treat you with a white glove or believe that it means you are not able to be accomplish the things the next person can. So I am not sure how it could work out but it sounds like something that doctors could even benefit from. HIPAA laws and everything combined with that is the only thing that comes to my mind that may shoot down your good intentions.

    Good luck with your business you are starting as well. It sounds interesting and also sounds like it will benefit you health wise when it is up and going. but yes do be careful to not stress to much if things are just getting started.

    Keep up the chatting!

    ktexas1026 replied to jenbayly17's response:
    Oh yeah, I didn't think about that, Jen. But that might be a good reason to keep it anonymous, & you don't know who's adding what. Although, I haven't worked out in my mind how to keep it 100% anonymous. LOL Just maybe the basics... like for me, my docs only thought of seizures after bouts of memory loss, history of migraines (& complicated migraines), deja vu, smell of cigarette smoke...hmm, what else? And b/c of my symptoms, they have labeled it as TLE. And then Keppra's the only med I've tried, but let's say I tried topamax first, & had no improvement, then Keppra worked for a while, then they added Dilantin. That would be MY "contribution". And I could keep my name, sex, & age out of it. But I don't know how that would work, & how people could ADD info while remaining anonymous. Although, like you, I don't mind people knowing that stuff. I don't consider that "personal", & if they DO consider too personal, they don't have to share. I'm going to have to think on that a while.
    dancer86442 replied to ktexas1026's response:
    Hi Kim,

    Please, do not worry about how much you 'ramble'. I know I get on a Roll sometimes, also. Kim, If you have been Googling Info, then by now you should Know that some Foods/additives can be responsible for Seizure activity &/or ADD. And That is W/Out medications. Gluten, MSG, even food coloring, to name a few.

    See, Your Ramblin just gave us another Fact about your health issues. ADD. I am sure there are several Past conversations on this, too. But, since I have been on Facebook, I have noted over & over how many People are affected by Both EP & ADD/ADHD. I am beginning to think they should be considered co-morbid. One disorder that is common w/ another &/or affects the other. Like Headaches/Migraines & Epilepsy.

    I Like your database Idea. But, unfortunately, w/ our medications/treatments, it's more like: What works for one may Not work for another. No matter what Type of seizure activity/symptom, It is truly 'trial & error' for each of us. Plus, any Neuro w/ any Knowledge of seizures already knows what meds to try for different Types of seizures. He/she just doesn't know How any Individual will react to any certain med or treatment.

    Increase in meds? Has it been over 6 weeks since you started Keppra? You do realize that seizure activity can continue & sometimes even Increase when being introduced to an AED (anti_epilepsy drug)? Meds are now Assumed to Work w/in 2 weeks, but, I still say: Give it 6.

    Meditation Classes. Good Idea! You are on track w/ that! It IS considered an 'alternative' treatment for seizure control, too. A few Other 'alternatives': Diet, Yoga, neurofeedback, Chiropractic or acupuncture. All 'trial & error' treatments that may work for some. But, I truly Believe everyone should be evaluated for Chiropractic problems. After reading Info & Listening to my Mom & Sis, it Does seem to be a Very Viable reason for EP & Should be ruled out or in as 'possible cause'. We don't remember/think about how much our Spine is abused from Birth to infants/toddlers/kids/adults. But, that holds true for Diet, also.

    OK, enough said for now. Hugs

    Love Candi

    dancer86442 replied to ktexas1026's response:
    Wow! I would say you have a Dang Good Neuro, if he associated your Migraines w/ EP. Most DRS Don't realize that EP & Migraines can be co-morbid. Another Piece to your Puzzle!

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