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? ~KimView Thread
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. ~KimView Thread
I didn't know Michael Phelps had seizures!!! Wow! And they say you're not supposed to swim... so I don't feel so bad now for doing things they tell me not to. LOL
But to Leecee04... I am almost 38 & only recently found out I'm having seizures. Not sure if your recent seizure was the full-on "regular" seizure where you were convulsing (is that the one they call grand mal, I can;t remember?). But mine are absence seizures, so I just space out & almost no one (including me) knows I've had one.
But I just wanted to post to add to what everyone else has said, that you are NOT alone (sadly--LOL). But I have received TONS of great info from the people on this forum, the only 2 I can remember are Candi & Angie (I'm sure there are others, but my memory was the first thing to go with these dang seizures).
Also, don't be discouraged if they find no cause. They STILL don't have a cause for mine, but like you, I have a history of migraines (classic, with aura), AND have had a few "complicated migraines" where I thought I was having a stroke! Now, I wonder if they were really seizures. But migraines & seizures are very closely connected. I think migraines make you more susceptible? Or maybe that they sometimes occur together. Actually, I think I've read that migraines can also MIMIC seizures at times. But also like you, I have no history of a head injury, or stroke (unless my complicated migraines WERE actual strokes, but my MRI's were clean/normal). But there ARE seizures with no known cause, so if you don't get an answer in that department, don't fret. Sadly, things are not always as clear cut as they are on TV. LOL
I hope I'm not repeating things that were already said, just wanted to throw MY 2-cents in there, & mostly just say that you are not alone, for SURE! I actually came on here to ask another question, of the VERY knowledgable gals here. But hang in there, & hope you DO get some answers, AND some treatment if it IS seizures. Just be prepared for some trial & error on meds too...... that'sbeen the toughest for me to deal with. I want answers (and relief) like yesterday! LOL ~KimView Thread
Just out of curiosity, Nancy... are you on Lamictal/lamotragine by chance??? I have an overactive bladder, & was recently started on Detrol LA. It was working pretty good, until my neuro added lamictal, & my first dose last night seems to have rendered my Detrol ineffective. Maybe it's just coincidence, but I noticed that was the only change. So, thought I'd ask you. But I googled it, to see if Lamictal would do that to Detrol, & didn't find any info.
Also, not sure if the seizures could contribute to the bladder problems, I haven't looked THAT one up yet... but if you're having a lot of seizure symptoms AND bladder issues, could be related maybe? Again, I haven't looked that up yet to see if seizures can be connected to bladder problems. But if you're not taking a med for bladder issues, it might be a good idea to try. I know it's just another pill, but bladder problems are NO fun. Some things are worth putting up, to avoid taking another pill, but bladder problems are NOT one of them. LOL ~KimView Thread
Hahaha, Angie, when I first read your reply, I only glanced at your words & thought you referred to a frap as "coffee sunshine". LOL I don't particularly care for the frappachinos, but thought it was funny. Then I realized you said it was a coffee smoothie. I'm partial to caramel macchiato's myself.
The one thing I was going to respond to, before I thought I saw "coffee sunshine", was that I did NOT know this about Splenda! I am not an artificial sweetener fan...in fact, I'm against them completely. If you want something sweet, I think real sugar is better, unless you're diabetic, of course. But I did not realize Mio contained splenda until I was already hooked on it! LOL And it's the ONLY reason I drink water at ALL, so I couldn't just cut it out. I figured a LITTLE splenda wasn't too bad...but had NO idea it could cause seizures! Now, I'm not saying Mio could've STARTED mine... but could be that it made them worse, or at the very least isn't HELPING. I had NO idea! Gotta go research this now. ~KimView Thread
Thanks, Yeah I just looked at my calendar & saw my follow-up with the neuro isn't until July, so I'm going to call Monday & ask to have it moved up sooner. Sadly, I know that my request to increase the Keppra, or try a new med, or add a new med to the keppra, is probably going to prompt him to order the in-patient video EEG... you know, the 5-7 day thingy??? Although, I'm thinking to myself "what is this going to prove/solve/help???". Plenty of people with seizure have "normal" EEGs from what I've heard, so if it's "normal", it isn't going to help answer anything. So, is it going to be a big waste of time???
I actually came to reply with a question for you guys & now I can't remember the dang question! LOL UGH!!! Actually, one question I had for you guys, that I'm not sure if it was my original question or not, is whether or not you guys get confused easily... outside of your seizures. Or if that only happens DURING your seizures. I found an article on simple partial seizures that nearly describes me to a "T" (well that, & some of the temporal lobe symptoms... like smelling smoke). But certain symptoms of mine don't last for the brief periods that I've read they typically do. Like "auras", they say usually only last 30-60 seconds. Or that seizures themselves only last 30-60 seconds. When I smell smoke, I smell it almost ALL day. I guess my episodes of confusion could only last 30-60 seconds, & it just FEELS like it lasts longer. I don't know. But I was curious if others experience confusion... when reading or having a conversation & you think you're supposed to understand what's being said/read, & it suddenly makes NO sense. I'm not sure if that's something that happens DURING a seizure or that happens AFTER a seizure... I don't know the difference yet. Was just curious of others' experience.
OH! Also, the deja vu! I know that's a symptom, along with jamais vu (the opposite of something feeling familiar, it feels Unfamiliar). But not only do I find myself having deja vu a lot, but I also find that people/faces are familiar too... & happening so much taht I know it's impossible. if it was once in a while, I would think it was possible that I had actually met that person somewhere else before. But when it happens with 10 people in a row, in 10 different places, all separate from each other, I know the laws of probability are against it. LOL Again, is this an "aura" for most people, or is this something that happens DURING a seizure.
Sorry for all the questions. I DO google all this too... I just feel the information is an overload. And none of it sticks. Plus, I feel it's more important to know what people's personal experience is anyway...that means more than what some medical article says...b/c I know it's different for different people.
Anywho... hope you all are having a great weekend. OHHHH! I know what my question was! LOL It was on spiritual stuff. I have heard that that could be a symptom of seizures too......& was curious if anyone has had an increase in spirituality (forget what the actual symptom is called) as one of their symptoms. Thanks, & maybe I will start a NEW thread next time. Hahahaha ~KimView Thread
Candi, That's funny, b/c I just came across an article recently saying that some docs now think ADD/ADHD & EP could be comorbid... or more so than they thought. I knew migraines & epilepsy were very "closely related", but hadn't heard that about ADD until recently. But I'm not crazy about the idea of dietary changes! LOL I have had lots of people say I should get tested for gluten allergy/sensitivity, but I've never had allergy tests... although my nose DOES run year-round. That's my only real "allergy" symptom, so I never bothered with it. I use a, Rx nosespray, which is the only thing that ever stopped my runny nose.
Angie, I DO need to exercise too. I know it's good, all around... seizures or NOT. But now that I'm on Keppra, I just have NO energy. I thought I had little energy BEFORE. LOL Another interesting thing I've noticed, is that I've been getting more migraines too... not sure if it's a fluke, or the Keppra. I don't know how Keppra would cause migraines, but it's strange.
And yes, I've been on Keppra now for at least 6 weeks, maybe closer to 8 (I know I've refilled the medication once, & now about half way through, I think). And only in the last WEEK has the smell of smoke started to return, & "losing a day" here & there. But I thought I would have more time before even NEEDING to consider increasing the meds, or adding a new one. The only hesitation I have, is that he put me on Keppra b/c I don't have kids yet (even though I'm 37, we don't have kids). So, he didn't want to start me on a medication that I was just going to have to come off if/when we decided to start a family. But I'm ALREADY a zombie, I can't imagine INCREASING the Keppra already! LOL I'm a zombie, & wake up with a migraine almost every day for the last 2 weeks... I don't know about this! LOL
Hope everyone had a great weekend, & have a great week!!! ~KimView Thread
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. ~KimView Thread
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 SAY...so 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)View Thread