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If you forget ONE dose???
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ktexas1026 posted:
Hi guys! (or gals, I should say)
How have you all been... I feel like I haven't been here in forever. I blame it on my sense of time being "off". But I had a quick question, & thought you guys were the best group of people to ask (since I know no one else who has to deal with seizures, & I think I would have to go through tons of info online to find anything CLOSE to answer).

But it's a meds question. I know that it can take several weeks for the meds to build up in your system enough to start working. So, I'd assume that missing ONE dose, shouldn't allow you to have a seizure. I mean, I still notice "episodes" since I'm still slowly increasing the dosage of lamictal (while still on Keppra, which hadn't really helped a whole lot AND started causing mood swings). So, I'm only halfway to the recommended dosage of lamictal. But I noticed that I was a few hours later than usual in taking my morning dose, & I suddenly started smelling smoke (which is either an aura for me, or an actual seizure, I don't know which). But I was like "geez, it's only a few hours late". I think maybe I would've smelled the smoke anyway, but wondered if it could be connected to a late-dose. Just curious.

Hope you all are doing well, & hope to come around more often.
~Kim
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dancer86442 responded:
Good Morning Kim,

Personal Experience: Miss one dose & convulsions. There is a Reason taking meds on Time is Highly Recommended. I Wonder Why? But, you didn't 'miss' the dose, you Did take it a few hrs later? So, it's a 'Maybe' possible cause, It may have happened due to the fact that the Lamictal hasn't reached it's therapeutic level, since you have been experiencing other Episodes. Plus, when titrating onto a new med, more seizure activity is to be expected. So, pick a choice.

Note it in your Journal, Girlfriend. Now, I probably asked this B4, but, is your DR gonna wean you Off Keppra, soon? He should have already started.

I Hope to see more of you, too. If everyone who has joined in the past few weeks would Continue to Visit, we would have the makings of a 'Family' again. Hugs!

Love Candi
 
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ktexas1026 replied to dancer86442's response:
Hi Candi!
Thanks for your reply! My doc has not started weening me off Keppra yet, but he did say he was going to. But I don't know if he was going to wait until I was on the full dose of lamictal, or maybe "closer" to the desired dosage. I'm not sure. I am supposed to see him soon though, so maybe he was planning on doing that at that point. He STILL hasn't mentioned me keeping a journal, and I need to look up how to do that. Because I don't know what I'm supposed to be keeping track of if I don't have clear-cut seizures. The only thing I know to write down, is my med dosage, etc... & if/when I smell smoke, or have a "bad memory day". There's nothing else for me to keep track of. Plus, I'm about to try an elimination diet (mostly b/c of stomach issues & a constant runny nose... but also to see if anything in particular triggers seizures/memory symptoms). So, I suppose I'll be keeping track of everything at that point too.

I definitely have had fewer episodes since starting the lamictal (well, only after the first 2-3 weeks...& I am tapering up VERY slowly). Keppra did almost nothing for me, so I worry lamictal won't be enough of an improvement to warrant staying on it either. UGH... maybe I'm just being a pessimist right now.

But I actually haven't smelled smoke very much in the last few weeks. But a few days ago, I WAS several hours late in taking my evening dose (like SIX hours late), & I did have really bad memory issues that night...until I went to take my sleep meds, & saw my evening dose still there. But this morning, I was only like 2-3hrs later than usual. So I didn't know if that short of a time period could cause that. Or if people can be THAT sensitive to not missing a dose. I DID forget that they recommend you take the meds at the same time every day (even multiple doses, each at the same time every morning/night).

anywho... now I'm just rambling. LOL Which I DID read somewhere could be a symptom of temporal lobe seizures too. hahaha

So, last question... Candi, is it you or your daughter who has seizures? I can't remember... I thought I remembered one of you guys who had a child with seizures. But back to my "last question" (LOL), do you notice other "changes", or maybe you've had seizures long enough that you don't remember any changes? Personality/emotionally, I mean?
~Kim
 
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ktexas1026 replied to ktexas1026's response:
Oh my! I am SO sorry my message was so long! I REALLY do ramble!
~Kim
 
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dancer86442 replied to ktexas1026's response:
Ramblin is Good, Kim! Makes me feel like 'family'. I enjoy 'listening'. We have Journal Info under Helpful Tips. Clik, See All if it ain't showing. Keeping a Journal is Very Important for You. I have Never had a Dr suggest doing so. I do so becuz I want to be my Own Best Advocate! It may seem like a Lot at First, but, everything, anything that Helps is Good!

Kim, It is Me, My Little Sister (4 yrs younger) My Daughter, My Mom & now maybe my brother. Suspect an Older Niece. And Newest addition, Newborn Great-Niece. She was on Phenobarbital for 6 mths. Seizure Free. So, her Mom & my Daughter Insisted she be weaned off. So far, so good.

BTW: Nancy had 2 Daughters w/ Seizures, also. She just lost one daughter to Seizures. SUDEP.

Changes: Personality, mood swings, due to meds. Mild Depression comes & goes. Sleep Patterns, have changed since peri-meno 20 yrs ago. Untreated seizures can lead to more severe Depression in the Future. Yes, your journey w/ meds &/or treatments May havew just begun. Or maybe, hopefully, your new med/dose will work for you. But, it's up to you. Eat Healthy! Think Positive! It is a Journey for each of us. But, we are Not Alone!

Hugs!

Love Candi
 
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saxofone1 replied to ktexas1026's response:
Hi Kim,

Ramble whenever you need to. Too many hold in their thoughts and questions/concerns go unnoticed/unsolved.

Have you questioned your doctor about how to handle a missed dose?

My present and past docs have told me to take the missed dose immediately unless it is time to take the next dose. It has been suggested that I take the missed dose two hours later. Some dosages do depend on time whereas others might are okay as long as you get the daily dose. One time I missed my morning meds and didn't realize it unitl the evening. I called my doc who told me to split the missed dose by taking half with the evening and the other missed half with my morning dose.

Do you use a pill box or have a timer that would help you remember?

In regards to a journal, I have been keeping one since '75. A pocket calender or an appt book(my choice) can aid you in starting yours. Keeping your notes in one place is very helpful. I have noted seizures, sensations, menses, med increases/decreases, tests, etc.

Remember to note that you were a couple hrs late with one dose. When meds get off balance, seizures can happen.

Keep rambling with us.

angie
 
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ktexas1026 replied to saxofone1's response:
Thanks for being okay with my rambling. LOL But I'll keep this one short. I was trying to think of some of the specific things I've noticed that have changed, but now I can't remember half of them. LOL

But have you guys ever heard of people with seizures "losing" their sense of humor (to a certain degree)? It sounds weird, but I don't know if it's b/c I'm easily confused these days, & so jokes are just confusing to me, but a lot of the time I find that I don't see the joke...even with people I know I have a similar sense of humor to. It's almost like someone says "Listen up, I'm about to tell you the funniest joke ever!", & then they say "You know what??? All stop signs are red! Hahaha, isn't that the funniest thing you've ever heard?!". And I'm like "Uhhh, I don't get what's funny". LOL I don't know if it's just ME, or if that could be symptom of seizures. Sounds weird, I know.

The only other one I can remember I wanted to ask you guys... and this one DOES sound weird. I want to research what parts of the brain are responsible for what (b/c I know some of the things the temporal lobe are responsible for). But I've noticed that I don't count on my fingers the same way I used to. And no one I know counts like I do now. I used to count the "American way", where if you're listing things & counting them on your fingers, you start #1 with your index finger... right? Well, now I've noticed I do it the "European way", or "French way", I'm not sure...but I start with my thumb as #1, THEN my index finger. I really feel like that is off teh wall to ask, but no one I know counts with their thumb first, so it's not like I picked it up from someone.

If I remember the other things I was curious about, I'll post them later, but those are the first two I could think of.
Hope you guys are doing well, & enjoying the weekend!
~Kim
 
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dancer86442 replied to ktexas1026's response:
Kim,

I do believe we Share a similar trait. I Hate Jokes! And the Only ones I seem to 'get' are those that are making fun of me. And even some of them I don't 'get'. But, yes, most jokes/cartoons, sitcom/movie comedies, I find Humorless. I Smile to be 'Polite' if everyone else is Laughing. Odd the way the brain works & processes Info. Can't say if it's seizure related or not. I have had seizures since I was 2/3 yrs & don't recall to many 'laughing' moments. I don't recall laughing at any cartoons or Three Stooges & such, which Everyone laughed at back when. Finger counting?? Jeez, lady, I gave up! I use a calculator now. I But, yes, that is 'curious'. But, as long as you are 'aware' of both 'curious' events, it most likely ain't seizure related.

Love Candi
 
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ktexas1026 replied to dancer86442's response:
Yeah, I just wondered about "brain changes" being the cause of these changes. I know if you have seizures for a while & they aren't treated, it could change things in your brain, or if the electrical signals are getting messed up in certain areas, it could cause these changes. And I don't mean that I count on my fingers anymore (LOL), but if I'm having a conversation with someone & I'm listing 3-4 things, I use my fingers to say "okay, 1-I don't need to, 2-I don't want to, and 3-I don't WANT to". That kind of counting on your fingers. And i noticed that I don't start that on my index finger anymore, I start with my thumb, which most Americans start with their index finger. I just thought it was weird. LOL I DO have a lot of the "typical" temporal lobe symptoms, & some of it correlates to either damage to that area of the brain, or the signals constantly getting "crossed" in that area. So, these days, I wonder how many of the "little things" are even related.

OH, that does remind me of one other question. I've read that a lot of people get an "aura" of a strange sensation in their stomach/chest. Any of you have experience with that? I do have acid reflux, so I always chalked up the weird "spasm things" in my upper abdomen, then my chest, to a spasm of some sort related to my acid reflux. But I've never heard anyone describe that feeling in their chest/stomach before. So, again, I was just curious.

I WILL say, that I have stopped drinking Mio water flavoring, after seeing you guys mention that Splenda is a big trigger. Mio is the ONLY thing I knowingly eat that has spenda in it. I am against artificial sweeteners, so I was devastated when I found out its sweetener was splenda. LOL But now I'm re-evaluating my entire diet too...hence the elimination diet. Maybe I will find certain foods/etc that make my memory/episodes worse

Anywho... I'm doing it again... rambling. LOL I'll hush now & see if I can get some work done! HOpe you all are having a great weekend!
~Kim
 
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saxofone1 replied to ktexas1026's response:
Ah Kim, keep rambling. I love your stories.

I wouldn't worry about how you count As long as you can still balance that checkbook it shouldn't matter. Maybe you counted that way as a kid.

The "aura" you descriped sounds very familiar. Prior to a seizure, I would often have a butterfly feeling in my stomach that travelled up my chest and ended with a bad taste in my throat. Sometimes I simply had the bad taste. We have so many similiarities with just as many differences.

A friend told me awhil ago about the Spenda. It is always something, isn't it? I've watched my sweet intake since the 70s. I saw a connection between my diet and the number of seizures. I don't think I'll ever give up Starbucks. We must give ourselves a treat occaasionally.

BTW, doesn't "thumps up" usually mean things are good? So I'm sending you a "thumps up" for a good day. Simply continue being you. Look forward to your next ramble.

Having a great weekend. Take care.
angie
 
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lckyedd responded:
Hi Kim,WOW SOMEONE ELSE who experience same as me. Held very good Job/Career till new Dr. switch Med from Dilantin to Keppra-SEIZURE,1st one in 25 yrs. Lost job/career,Drive privelage;Applied for Disability but turned down. Now what? Guess i will have to start sending BILLS to Dr. ED
 
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lckyedd replied to ktexas1026's response:
TRY reading my messages-MILE LONG. ED
 
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lckyedd replied to saxofone1's response:
New Dr. switch me from Dilantin-taking 30 yrs to Keppra-1st seizure in very very long time. Lose job/career,Drive license and BEST of ALL-DONT QUALIFY for DISABILITY!! Guess i start send bills to Dr. Ed
 
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ktexas1026 replied to lckyedd's response:
Wow, Ed!
I am so sorry to hear that! Did he just stop your Dilantin & THEN put you on Keppra??? I was under the impression you should never stop ONE medication until you've tapered up on the new one. But maybe dilantin w/ keppra doesn't work that way, I don't know. That's why I'm still on keppra, while my doctor slowly increases my dosage of Lamictal.

I agree though, if you can't drive/work, you SHOULD be able to get disability. I say you should find a new lawyer, one that is used to dealing with cases of disability being denied. Thankfully, I don't have full-on grand mal/convulsive seizures... and thankfully, I don't live in a state that requires doctors to report someone's seizure diagnosis to the DMV/RMV, b/c I just started my own business & can't stop driving at this point. Let me be clear though, i do NOT advocate doing that! LOL But I would think if they get your seizures under control, you should be able to drive, & work... no? I don't know how all that works though.
Hope they figure out your meds soon!!!
~Kim
 
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saxofone1 replied to ktexas1026's response:
Hi everyone,

Icky, how long ago was that switch to Keppra? It is possible that your seizure is a reaction to the change-over. I've been on Kep since its introduction in this country. I was on Dilantin back in the 70s and had problems with gum swelling. The med roller coaster was harder for me than the seizures. Good luck.

I believe you should qualify for disability. The gov will use any excuse not to grant you. Find a lawyer/advocate and fight. I have heard that many are denied the first time, somtimes the second time. Don't quit!!! Find an EFA near you for advice.

Kim, I hope you're not still worrying about rambling. Did you notice Ed's note to you?

good day to all,
angie


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