Hi! OMG"026 I have been trying to log in for what seems like a MONTH! Every time I hit "reply" to this discussion, it makes me log in again, only to NOT let me reply. UGH. So, I have been able to READ you guys' discussions, but couldn't reply. I didn't disappear I swear. LOL
Of course, now I don't remember the things I wanted to respond to. haha But I have enjoyed seeing your progress. As far as eating healthy, you're doing better than I am, for sure! And I actually laughed out loud at your salt lick comment! I have said that SO many times, & gotten so many strange looks from people around here who have never even HEARD of a salt lick! LOL I'm from the south, & now living in New England"026 where there is hardly any hunting going on, so no one knows what a salt lick is used for. Although now I can't think of what else it is used for either, I'm sure it's used for other things too. But glad to know I'm not the only salt-oholic out there. The bad thing is, I have low blood pressure so my doc actually recommended MORE salt. And I told her she wouldn't say that if she saw how much salt I put on my food. haha So I'm going to go from low BP to hardened arteries in a snap"026 one of these days.
The other thing I wanted to comment on (that I remember-LOL), is that i want to check out the link you posted about potassium. I know that it's crucial for heart function, but I'm STILL learning what all can affect seizures since like you, I'm trying to make any adjustments I can make, the ones that are in our control anyway. And so I'm very curious about things I might be doing that's contributing to seizures. I know some of the things"026 like caffeine (a vice of mine--actually, it's the sugar b/c caffeine doesn't wake me up like other people"026I WISH it did!), alcohol (doesn't mean I don't have a drink (but I'm sure that with seizures, it should be Zero drinks), stress, diet, etc, etc. And I have been trying to do smoothies too, mainly b/c I don't eat breakfast (never have). And someone told me about adding spinach/kale to add vitamins/etc"026 and they told me you can't taste it. I call BS! LOL There is NO way that something that LOOKS nasty, doesn't TASTE nasty too! hahaha I joke, but I know they're healthy. I just don't know I could go that far. maybe a spinach LEAF. So let me know how it goes & MAYBE I'll try it.
One last thing I wanted to comment on, and I'm glad to hear that you're doing better in this department (or it sounds like it), is the depression part. I agree with Candi, even if there are no other factors besides seizures/health issues, that's enough in itself to cause depression & similar problems. Nevermind anything else going on in our lives that might contribute to it too. Any chronic health condition that requires so much management & medication "calibration" puts us at risk for that. I think a good support system, even if it's online, is huge! Not many people around us know how to deal with something like this, or anything chronic. I have chronic pain too & it's so misunderstood b/c no one can SEE its affect on our bodies. Same with seizures, so it's really easy to feel alone. I struggle with that myself. Some days are good, some days make you wonder how you can go forward. I can totally understand that. I try to tell myself that tomorrow the medication might kick in & start REALLY helping, so I'd regret giving up a day before. Or tomorrow, I might find something in my diet/habits that can be adjusted to fix the whole thing. Not likely, but you see what I mean. So, just wanted to say you're not alone in that department either, although I bet most of the people here can say the same at one point in their lives or another. Hope today is a good day"026 for everyone. ~KimView Thread
Hi! I just wanted to chime in also, even if it's just w/ my own experience. I'm like you, I'm 38 & only started having seizures 2 years ago. I have read all kinds of information online"026 some saying it's rare for seizures to start this late, & some saying the exact opposite. Some info online (and from doctors too) will say "No, it's rare for xyz to cause seizures". And when I see/hear "Well, it's rare for that to be a trigger", & I've heard the same for auras too "It's rare for that to be an aura". My first thought is "Well, 'rare' is not the same as 'never'!". I mean, "rare" means it CAN, and DOES, happen"026even if THEY have never seen it before. So many docs/people think that b/c THEY have never seen that symptom/trigger before, then it can't possibly happen. As for the bleach being a trigger, I think anything is possible. Even if you'd been around it before & had no effects, when something in your brain changed to start seizures (or make you susceptible to have seizures), then it could be sensitive to bleach, or caffeine, or chocolate, or having someone jump out & scare you. LOL Okay, not sure about that last one, but it proves my point"026 that what may trigger seizures for YOU, may not be a trigger for ANYONE else. I think Candi may have said this already, but this is where a diary or symptom log can be helpful. It might be the bleach, but it could also be something totally different that wouldn't have occurred to you"026 and might be a total coincidence that it happened the same day as your exposure to bleach. Maybe even keeping a food diary (which is a pain too-LOL), keeping track of whether or not you slept well, if there was anything particularly stressful that day, or the day before, or that WEEK even. Also, adding to that diary, any weird/odd sensations you might've felt that day"026 like feeling sick or weird when you were exposed to bleach"026 or fertilizer, or perfume"026 anything. I just realized that I'm leaving half of that stuff out of my OWN diary. hahaha I can't believe that hadn't occurred to me since I have no idea what my triggers are either. I was told to write down when I had the symptoms I'm aware of that they SAY can be an aura (smelling smoke, deja vu, b/c I have both of those), but I forgot that they also told me to write down how well i slept & whether I felt rested in the morning or not (b/c I usually feel tired in the mornings & like I didn't sleep well). I apologize for being so long-winded"026 it's a habit I'm trying to break. View Thread
Hi EB, I'm Kim. I don't know how much "technical" info I can offer, but just wanted to add my experience (the parts that are similar to yours). The thing that caught my eye in your post, is when you talked about the stream of thoughts that come to you & can't be stopped. I have had that a few times also. I honestly didn't even think to associate it w/ seizures, but that's also b/c I don't know what my triggers are yet (pretty new to the diagnosis myself). But I DO remember thinking "OMG, where is THAT coming from???". I have ADD also, so I'm used to my mind wandering &going off on random thought trails. But I have never had something like what you described, and you described it better than I could. The thoughts were intrusive, even though they were random & had nothing to do with each other"026 which is also how my "confusion spells" are"026 which I agree w/ Candi that they are some type of aura (and I think as many people that have seizures, there are as many possible auras out there for each one). These "thoughts", for me, came in as if a movie was playing in my mind but the "movie" was sped up so that I couldn't keep up with it & each "scene" was strung together in a random way so that none of it made sense. It was confusing b/c they weren't just thoughts, they were mixed w/ memories of actual events too"026 again, none of which were related to each other. They came like rapid fire from a gun"026 just boom-boom-boom-boom. And then it was like "WTH was THAT?!". LOL So, I agree with Candi, I definitely think it's an aura of some kind. It's good that you recognize it when it's happening too. I don't (yet), & it's only afterwards that I say "Ohhhh, now I see".
As for the alcoholism, I hate to keep saying I agree with Candi (LOL), but I agree there too"026 no judgements here. We all have unhealthy habits that are hard to break, things we know are unhealthy, and even things we know can make seizures worse. And don't be so hard on yourself, it sounds like your'e doing really well. And even though I'm not an alcoholic, I have friends that have had troubles in that area, & I honestly don't know how you do it, or how they EXPECT you to do it, when you've been in that pattern for so long"026 it's habit that hard to break. So I can imagine it takes a LOT of self-discipline & hard work"026 so with only a few relapses, as you mentioned, only a few over a few years"026 that's better than not trying at all. It takes time to break that kind of habit, but going in the right direction in huge!
I wish I had some advice on the doctor/overseas situation. I can't imagine it's easy to find a doctor over there. Especially when they are all giving you a different story. I think if there is a good doc/hospital in Bangkok, maybe you can find a doc there & explain the situation on it being too far to come for regular appointments & ask if there is a way to handle treatment while also minimizing cost AND travel. That has to be a tough situation to be in & I'm not really sure how I would handle it either"026 so I apologize if that advice isn't very helpful. I guess the main reason for my reply is to say you're not alone. And don't be so hard on yourself. ~KimView Thread
Oh man, I was out & about all day yesterday & completely forgot it was Epilepsy Awareness Day"026 I was going to post on my FB page too. Ugh!
And yeah, I'm glad I figured out that this is the group I had been to before. I know there are plenty of other groups out there, but having it HERE, on WebMD"026 where there is also a wealth of information of ALL sorts--medical info"026 is awesome.
On a totally random note"026 I keep having dreams that I'm still in the hospital (for the VEEG) with a camera watching me while I sleep. LOL Actually, I wake up thinking I am on camera still. Very weird. Hope you have a great day! ~KimView Thread
Hi Nancy, One of your comments just jumped out at me & I HAD to reply. When you said these random EEG findings made you feel like a fool"026.. I can totally relate! I had an obviously abnormal EEG, even though I wasn't having a seizure at the time (Or, I don't think I was"026 my aren't the grande mal type anyway, so most people don't even notice). And then I had the video EEG where they tried provoking a seizure, & nothing much showed up. It made me question if this is really seizures b/c it doesn't make sense for this to be so random & to have so many mixed results. The only thing my doc has told me was"026 "sometimes this happens & EEGs are inconsistent". I thought "Really??? That's your explanation???". LOL Although the other thing he was"026 that a normal EEG doesn't mean you DON'T have seizures/epilepsy, it just means you weren't having one at the time. But if you have an abnormal one, it is almost always indicative of seizures"026 even if you're not having a seizure at that moment. My very first "normal" EEG, they said some people still show "abnormal" activity even if they aren't having a seizure. And so that's why they assumed b/c there was NO activity at the time, the doc assumed it meant normal all the time. Then when i saw a specialist, he said some people have abnormal activity all the time, whether they're in seizure or not. And then some only have activity during a seizure & are "normal" every other time.
Not sure if I made sense"026 b/c I think I took the long way around to say what I was going to say. ~KimView Thread
I have to agree with everything Candi said. I'm fairly new to this myself (2yrs), but my doc did prescribe a seizure med on my very first visit"026 even though it was just to see if it helped. Because any further investigation wasn't going to happen within a week or 2, & like Candi said"026 he just wanted to make sure he was treating seizures while they were doing further investigations. It's better to be ON it & have it do nothing, than it would be to NEED to be on it & have a major episode b/c you WEREN'T on it.
The other thought I had about taking meds & the issues of driving. I have not given up my license at this point, mainly b/c even in my "absence seizures", I'm not unconscious"026 I continue to do whatever it is I was doing before the seizure. But yes, my doc continues to scold me about it"026 just "in case" he says. BUT"026 I live out in the middle of nowhere, so there isn't an option of public transportation. I would lose my MIND if I couldn't drive. SO, the side effects of meds are better than not having your license at ALL. I didn't find many side effects with Keppra or Lamictal (well, except that keppra was basically PMS in a bottle--LOL. But not all women have that reaction either). So if meds allowed you to be seizure free, it would save you from losing your license permanently. Most states in the US will allow you to drive after either 6months or 1 year seizure-free. Which reminds me of another reason why I still drive"026 b/c I don't have typical seizures, they can't say if/when I'm actually having a seizure"026 therefore, how can they know when I'm NOT. But, if you're having clear cut seizures, it's worth trying meds I would think. Even when you have obvious seizures, not all meds would work for you so they'd still have to do a trial & error sort of thing. Better to get started in the process of "trial & error" now, versus later.
And the last thing I will say, is that I'm also in a similar "boat" as you. My EEG was abnormal & showed seizure "activity" but they can't seem to catch it on EEG when they try to provoke one. So there again, it's like pin the tail on the donkey. And I agree with Candi also on the at-home EEG"026 don't let them try to get you to do the inpatient EEG where you're in the hospital for a week"026 they should do the at-hom EEG FIRST! LOL I won't even go into MY experience with that, since it was just 2 weeks ago & I'm STILL recovering from the mental "damage". haha (I'm kidding, but sort of serious too). I'm going to shut up no w 'cause I talk too much. lol ~KimView Thread
Hi Candi, I have been trying to reply to your last message since yesterday! WebMD kept telling me to log in, & then as soon as I clicked on "reply", it asked me to log in AGAIN. Ugh. LOL
Anywho"026 yes, I would love to help welcome newbies. You're right, it does help just knowing that you're not alone & hearing the experiences of someone else. Even though I'm usually a Google-holic (LOL), there are usually things that are just better off hearing from someone directly, than reading a medical article.
And I know what you mean about each person/seizure being different. I have found that out just in researching for myself & what things I have trouble with. I found out real quick, that there are some symptoms that are the "hallmark" of seizures, but not ALL people with seizures/epilepsy have all those symptoms"026 and they sometimes have symptoms that aren't part of the "typical" seizure description. For me, I have been lucky to find info here & there on the "weird" symptoms that I didn't think were related to seizures"026 until I found an article or something with someone having the exact same symptom, & they have documented seizures & a clear diagnosis. I am so glad to see there is such a group as this that can be an outlet for what people are going through, or to find info on the experiences of others. ~KimView Thread
LOL. You definitely get an A . Thanks for the great information. I forget there is such a wealth of info here on WebMD. I did know that for women, seizures could be worse or more frequent around that time of the month, but had no idea there was an entire group of seizures for it. Very interesting"026well, not for those who have them just at that time of the month.
And yeah, I do try to bring my notebook with me to my appts, of course I don't always remember. LOL And my doc did say that about the meds causing some memory issues"026 which is so weird to me b/c THAT'S my biggest issue with these things. LOL But I'm very glad I "found" you guys again, b/c I think the best information for anyone, is the info you learn from other people and their experiences. Oh man, did I say that already??? If so, I apologize for repeating it. Hope you all are having a great weekend"026 I'm going to go lurk around the other posts. ~KimView Thread
I thought I posted a reply to your comment Candi, but it disappeared I think. Ugh! Anywho"026 I will definitely do some reading on reflex epilepsy, I want to know all I can so I don't just have to take what the doc says & HOPE I know what's talking about. LOL And I was wondering if going of the lamictal so quick could cause that twitching. It's almost gone now that they put me back on it.
I think my main issue is that no one seems to say with 100% certainty that it IS seizures, so that made me a little curious about the VEEG. I thought for sure something would show up if it is in fact seizures. And I didn't think you could have one test be "abnormal" & then another be "normal", but seems like from my reading that it can happen that way"026even in people who have KNOWN seizures.
As for the VEEG, if you haven't had one, I don't recommend it. LOL I think the main issue is that I wasn't prepared for what it really entails. I took plenty of things to do to keep me busy, etc"026 but I wasn't prepared for being confined to the bed all day, with all the rails up & PADDED, & having to have a "chaperone" in the room before you went to the bathroom. It was isolating to say the least & I'm a talker so I wasn't fully prepared for that. It was the longest week that I can remember ever having. They didn't get much activity while I was there, which made the whole thing pointless to me. And THEN they told me about the ambulatory EEG that you can do at home. I had a feeling it had a lot to do with the fact that I was out of my normal environment & things like that"026 which they agreed can happen too. Oh, & I forgot to throw in the PMS that I was having the entire week too"026 I'm sure that didn't help matters either. haha But yeah, I really want to know that it's seizures, for sure, before trying other meds"026 like pin the tail on the donkey. But if there are meds that are geared more towards absence seizures, I'm very curious about those. Also, I call them "absence" seizures b/c I've never had a full on seizure.
Annnnnyway"026 I will definitely be around to learn all I can from you guys. It's good to have some sort of support system with people who have already been dealing with similar issues. I have googled a lot of things that I've noticed with myself (symptoms,e tc), but it's nice to talk with other people who might have the same issues b/c there is way more info through experience than there is from research articles. ~KimView Thread