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dackb posted:
I am a 35yr old female and just had my first seizure last week. I have never had any major illnesses or diseases, no food or drug allergies, never used any illegal substances, very rarely take any medication other than advil or tylenol, hardly drink, and other than common colds or flu I am rarely ever sick. I have one child, 9 months old. I don't eat super healthy, but I get most of the major food groups. I know a lot of things can trigger seizures so what I'm trying to do is pinpoint what may have caused my seizure. I love my caffeine and chocolate and from what I've read they can both be triggers, however my intake has not changed for the past year or longer. I have not changed anything in my daily routine or diet for at least the past 6mos. The only thing new that I can possibly think of is I had to start using a special powdered bleach at work last week. I have used bleach thousands of times and never had any serious problems however I do tend to get severe headaches and get a little dizzy after using liquid bleach. This was my first time using the powder. It is used in a hog facility. I used on an outdoor chute obviously well ventilated being outside but the wind was blowing it into my face. I had a bad headache and felt really crappy all day and night. I had been exposed to it more that week but not as bad as I was on Monday. On Thursday morning I was around it for a little bit but I didn't have my seizure until late afternoon. I am on Keppra and before realizing what might have caused it, I exposed myself to the bleach again. I did not have a seizure but I felt very sick. I have researched this and found some people claim that chlorine has caused them to have seizures, but I'm looking for firm information to prove my theory. Has anyone ever heard of this happening or know where to find some good information?
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dancer86442 responded:
Hello dackb,


I am sad to hear this. But, I do have an article that may be of use to you. Helpful Hints: clik see more: Scroll down till you see Phylis Feiner Johnson posts. Clik her link www.epilepsytalk.com . Oh well, it just popped up in blue. Try that First. No need to join to read her articles. Her Menu may already have the article listed. Weird Triggers. If not, use the Search Tool in her Menu. The Info you seek to confirm is listed. Although Not Chlorine, specifically, but, same concept. All resources she used are listed at the bottom of each article.


Please, call your DR ASAP w/ this Info about the bleach! It's possible you may not need the medication. Have him do an MRI & EEG to confirm no abnormalities or abnormal electrical activity in the brain.


Note in Tips our Daily Journal. Please, start keeping one. Try drinking some de-tox solutions. My fav: 2 qts of water w/ 1 sliced apple & 1 cinnamon stick. Let it sit 24 hrs & keep drinking it. Make some more. You can use the apple/cin several times, b4 replacing.. It can Help!


Please keep us posted/updated. I would appreciate it.


Hugs & Love, Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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dackb replied to dancer86442's response:
Thank you for the info. I did contact the Dr office once I came up with the idea of the bleach, they however do not think it is likely because it's not a "normal" trigger. They will look into it before I go in for my follow up appt on the 21st. I don't understand exactly how all of this works so please correct me if I'm wrong. Irregardless of what the trigger is, if I'm exposed to the triggering agent while on the keppra I shouldn't have a seizure but my EEG would still show the short circuit? If I'm no longer exposed to the trigger then the EEG should come back normal even if I'm not on the keppra? So when I go in for my appt if the EEG isn't showing anything unusual but I expose myself to the chlorine would it instantly show activity or would it take awhile before they would be able to link the trigger?
 
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dancer86442 replied to dackb's response:
OK, First, there is no guarantee your Keppra will control any further activity. Your DR may know which meds to put you on for specific types of seizures, but, not specific triggers. If you continue to expose yourself to the chemical, it could induce further seizures. The trick is to Avoid our Triggers! But, Only way to confirm the chlorine was the trigger is by repeated exposure w/ repeated reaction/Seizures. I don't think I would Chance That! Tip: Avoid inhaling 'poison', Wear a Safety Mask! I'm sure drugstores would have them. Protective gloves? Change clothes Immediately, after exposure &/or b4 removing mask. Soap & water.


EEG will Only show mis-firing IF seizure activity IS present at the time of test. even if seizures aren't apparent. But, Another reason activity may not record: The Focus (beginning) of where seizure takes place in your brain, may be too deep for EEG to detect. But, You or witnesses will know it, if seizures occur in between tests. If you have been seizure free for 6 mths & want to come off the Keppra, then Insist, if tests should come back 'normal' But, don't stop Keppra, w/out DRs Help!


You can clik on my Pic or ID to read more of my History.


I would say it will take Time. A detailed Journal can Help! Unfortunately, seizures do not discriminate as to when they will occur, again. Minutes, hrs, days, mths, yrs. ! to 100's of episodes in 1 day, depending on the individual. Everyone is 'unique' it seems. Which is why it's sooo hard for Any Dr to Know exactly What's What. Plus, not all neuros specialize in Epilepsy. They specialize in sleep disorders or brain tumors. We wind up 'teaching' them. But, we do have Drs/Neuros who have specialized & continued schooling for 2 extra yrs, learning about Epilepsy. Phylis has Many interesting articles. Did you note the 'Comprehensive Guide to Neuros, Epileptologists....' ?


Not sure what you know. :0 Fact 1 out of ten people are diagnosed w/ Epilepsy, every yr. 65% are 'unknown cause'. Anyone, can have 1 seizure in their Lifetime. But, 2 or more similar/same incidents=Seizure Disorder/Epilepsy. There are over 40 types of Epilepsy. Over 2000 causes.


I hope I answered your questions. I know it doesn't make sense. But, hang in there. I'm Hoping all comes together, sooner than later. BTW: Add b6 to your vitamin regimen. This is a preventive vitamin. Can eliminate possible Keppra Rage. A Well Known Side Effect of Keppra. ;( Also, start some D3. Start w/ 1000IU a day & increase to 2000Iu w/in a week if necessary. Nutrition plays an Important part in controlling med side effects & Seizures. Use our Resources ^ tips & Keep Learning.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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saxofone1 responded:
Hi dackb and welcome to the family,

Candi has shared with you what general info I could give you right now. So I simply say "TAKE HER WORDS SERIOUSLY".

My seizures came out of nowhere 39 yrs ago. It was a shock to the family. The docs made a connection of meningitis to the appearance of my seizures. I had meningitis as an infant.

Your mention of bleach reminded me of an episode I had a few times with a McDonalds' fishburger. Shortly after I had eaten it, I had a seizure. Was it the fish, tartar sauce, or just a coincidence? The second incidence was similiar to the first but yrs apart. I simply mentioned it and keep moving foreward.

My seizures were real(and witnessed by family/friends/docs but nothing showed on the tests for about 2 yrs. As Candi said, timing can be an issue when searching for answers.

Good luck with this new journey. Do keep us posted on how you're doing...this includes your emotions too. Rant when you need to. Always ask questions.

angie
 
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ktexas1026 responded:
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.
 
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ktexas1026 responded:
I also don't know why my reply keeps adding "026" to my paragraph. I know it's the tail end of my username, but it just pops in there randomly. LOL
 
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saxofone1 replied to ktexas1026's response:
Hi ktex,

I had a reaction to cigarette one day. I was visiting a neighbor who happened to be a chain-smoker. I became very nauseated and had a bad headache later. One or two days later, I had a seizure. I mentioned this to my nurse who said that the smoke likely caused an interruption of oxygen to the brain. This interference most likely caused the seizure.

Like you said, "anything is possible". I simply logged that episode in my book and avoid smoke as much as possible.

angie
 
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dackb replied to ktexas1026's response:
The more information the better. I've read multiple sites but I haven't found anything solid that can prove my theories. The only reason I suspect the bleach was because I was writing down everything I had been doing and eating all week and that was the only real difference that week. I've used liquid bleach before and had severe headaches from the fumes but this powdered stuff was actually used outside so it was blown on me and inhaled unintentionally. If this is in fact the trigger, I had more contact/exposure to it in that one week than what I've ever had with any liquid bleach. I thought back to when I was younger and I would go swimming all day, I'd be out all night because I would get such a bad headache. My parents always thought it was just too much sun.

Has anyone here had tests run to see what your triggers might be and how did they do the tests?

I washed all the powdered residue away and wore a mask while I was doing it and I plan on taking 3 days in a row off from work hoping that I won't be exposed to anything that might trigger a reaction. I was in the military for 10 years, I was around some very potent hazmat and never had any issues. I haven't been a big water drinker since highschool, even when we were in the gulf in 200 degree weather I was always drinking pop or beer if we were in port, I never had a problem even when everyone else was dropping like flies from dehydration. I've always loved chocolate and have never had any issues there either. Common sense would tell me that the fact that I drink pretty much the same amount of pop and eat a lot of the same foods every week and have been for months even years that caffeine and chocolate aren't the triggers, dehydration was ruled out at the hospital and so was pretty much everything else. I've read the info that Candi found on weird triggers and I plan on taking that and any other research with me to the DR office and hope she can get it figured out right away! Thanks for all the info.
 
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saxofone1 replied to dackb's response:
Hi dackb, seems like you've been doing some deep detailing of events that might be your seizure triggers. Some of what we think might be a trigger could simply be a one-time event.

Drop in on some other discussions whenever you can. A new perspective is always helpful. Thanks for the update. Hope you continue sharing.

angie
 
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dancer86442 replied to dackb's response:
Good Morning dackb,


How are you today? I'm glad you printed up the info. Did you read her other article on triggers, too? You were exposed to Hasmet? Oh Dear. I wonder if That could be Part of the Issue, also. I know that there isn't much Research, but, have you ever noted or been warned that it, too, may cause seizures? I realize it's been 10 yrs, but, I Would still consider the Possibility. After all, some ppl can go yrs after exposure to 'chemicals' b4 showing signs of seizures. Then again, it may have Lowered your Seizure Threshold (yes, everyone has a threshold! Fact: 1 out of 10 will have at least one seizure in their lifetime. 1 out of 26 develop Epilepsy) & the powdered bleach put you over the edge. Personally, I would discuss both exposures w/ your DR & ask to be removed off Keppra. IF seizures return, promise you Will go back on medication or an alternative treatment.


Trigger detections/tests. Most can be done by blood work. Others' are a process of elimination & re-adding. Pain in Butt, but ya do what ya gotta do.


Being that you are Female, please ask to have your Hormone Levels checked Too! More info on Catamenial Seizures in our Resources or visit Epilepsy Health Center. Note blue letters under our posts.


Don't count on anything being found out right away. Epilepsy is definitely a hurry up & wait Disorder. Time & Patience. Like it or not! But, if you can go seizure-free for 6 mths to a yr, you can see a light at the end of the tunnel. Hugs!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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dackb replied to dancer86442's response:
So I went to the DR today. I have to say that now I'm left with more questions than answers. First I was under the impression I was getting an EEG today but I did not get one. I have to wait 3 months from the day of my seizure before I can get the EEG.
So to start, I had apparently missed the conversation in the hospital where the DR told me that this was a very severe, life threatening seizure. Now with that in mind, she was not very willing to just stop the medication unless I'm willing to get a babysitter for 3 months for myself. Now I brought up all my research and everything everyone on here has had to say but she said that there's no way to test any of those theories. The bleach idea is not a viable explanation because nowadays they test chemicals so much. She did say it was not hormones. So now my one of my questions is HAS ANYONE BEEN TESTED TO FIND OUT WHAT YOUR TRIGGER IS AND HOW DID THEY TEST YOU? I'm not giving up! According to my husband I am always right and always have to prove my point, so I fully intend to prove this. I still have the strong belief that it was the bleach just simply because I'm big on common sense. Common sense tells me that nothing was wrong with me before, then I use the new chemical, get a massive amount of exposure to it, and then another exposure to it a couple days later and then SEIZURE!!! According to what she said and what some of you have said, I'm not safe even on medication, so if I can't find out what my trigger is I am always going to have to worry whether or not I'm going to have another episode. I was 20 mins from having my seizure while taking my daughter to daycare and my husband is freaked out really bad after seeing it happen to me so I would really like to get an answer.
Now keep in mind this DR comes highly recommended and is very well respected so she's not an idiot but she is much better at other aspects of her job, and she's not much of a risk taker. So anyone have any ideas on my next option? She did offer to set me up with an epitologist, is that a better option, could they tell me more than what she could? Has anyone been through a "one time" episode, and then have issues after being taken off medication? She did make the comment that just because my EEG comes back normal doesn't mean I'm cured so anyone know what is the best route to go as far as your experiences?
 
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dancer86442 replied to dackb's response:
Hi dackb,


OK, no EEG. I don't understand the Wait part. That ain't rite! Take her up on her offer to see an epileptologist! Yes, they are trained for 2 yrs after neuro school specifically in matters concerning Epilepsy. So, they would know More!


As I said B4, certain triggers can be tested. Those related to Foods/additives are easy enough. Same w/ Hormones. Which your DR did do. Others' ain't so easy. If you read both articles on epilepsy talk, then you should have already guessed that. Rite Now, your Daily Journal will have to be your Tool for discovery of Triggers. Problem: ya got to have more seizures, too.


I Agree that the chemical you used may have been a trigger. And I always go w/ my Gut & Common Sense, too. My Gut Instincts have been rite about many an Issue. Common Sense told me things about My Epilepsy & meds that DRs said Nay to & then yrs later Researchers say, Guess what WE figured out? I say: Well, you should have asked me!


But, I would Never quit taking my meds on a 'gut feeling'. Especially after having a severe episode. You
haven't had any more 'episodes' & it may be becuz of the meds. So, hang in there. Wait till you see a New DR & get another opinion.


Yes, others' have had one time episodes & the episodes continued after meds were removed. Others' have had no issues after coming off meds. Danged if you do, danged if ya don't. It is Not something I would want to Chance trying w/out a 'babysitter' & definitely not w/out a DRS supervision.


I know how you feel. You want answers Now. But, w/ over 40 seizure Types & over 2000 causes & always the possibility of 'no known cause' an Answer Now just isn't going to happen. Best Advice I can give you, is Patience! Plus, do what it takes to ensure you & your family are Safe.


Go see your Epileptologist. get that 'second' or third or more Opinion!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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saxofone1 replied to dancer86442's response:
Hi ladies,

how are you doing?

High sugar? Definitely. Years ago, somewherre in the late 70 or early 80s, my psychiatrist made a connection with my diet( ice cream, chocolate, sodas) and my seizure frequency. Elimating about 95% of that did decrease my frequency for quite some time. But we all know that all good things don't last forever.

As for meds, I understand!!!!!! Finding the right one or combination takes much patience. Add in willpower and belief in your med team as well as yourself.

Don't stop asking questions or requesting answers/explanations. Do seek an epileptologist. DO NOT QUIT ON YOURSELF.

ANGIE


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