Hello everyone! I'm new to all of this and can use some support & guidance. I'll tell you a little about myself. I'm 32 years old. I have 2 children. I have a history of anxiety that started in college. Right after my daughter was born I was walking up the steps in my house and had this overwhelming sense of deja vu. It's like I caught a glimpse of a t.v show in my head that was familiar to me but I couldn't place it. I had tingling throughout my body, smelled something unpleasant (again familiar but couldn't place it) and afterwards felt nauseous. Because I had nothing else to compare it to I thought it was anxiety related. Fast forward 4 years and I am still having them. They only last about 30 sec to a minute. I will have 3 of them in a weeks time and then nothing for a month or longer (I never recorded them b/c I thought they were anxiety related). I'm now pregnant with my 3rd child and had 4 episodes 2 weeks ago. I decided to write down all my symptoms to talk to my Dr. about it. I never brought it up before b/c I felt crazy saying "deja vu". I did an Internet search for anxiety with deja vu and it came up with a forum and a lady was describing her simple partial seizures that were misdiagnosed as anxiety and depression. I did a search for simple partial seizures and almost fainted when I seen all my symptoms matched. I made an appt. with a neurologist and she confirmed that she thinks I am also having them. I go for an EEG next week and she said I am not allowed to drive until we get them under control. I'm a stay at home mom in a rural area. I am having trouble getting my children to school, getting myself to all my dr. appts. (My husband works long hours). I am very scared and feeling a little lost. Any advice on meds, how long until I can drive again, what tests I can expect, if simple partial seizures always get worse or can they stay the same? Anything would be appreciated. Thank you for reading.
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Hi beanogirl, welcome to CWE!
It's normal to feel a little scared and lost when considering a possible epilepsy diagnosis. But you've come to a great place -- folks here can offer experience, feedback, advice, support and empathy. (And some great jokes, too.)
Now to the nitty-gritty: Your neurologist will make a diagnosis based on a combination of test results and clinical evidence (i.e. the symptoms you're experiencing). The usual tests are an EEG and sometimes an MRI as well. Simple partials can be tricky -- they don't always show up on an EEG, so any info you can provide about your deja vu episodes will be important. With the driving restriction, your neurologist is erring on the side of caution. It is true that if left untreated, seizures can progress over time -- but they don't for everyone. It's different for every person unfortunately, so it's tough to make predictions.
If your neurologist decides that you are having simple partials then the next question would be about medication or other treatment options. Since you are pregnant, and your seizures are relatively mild (and you don't lose consciousness during them), the conservative course would course would be to hold off on medication for now, while keeping an eye on the simple partials. Plenty of people have healthy babies while on anti-seizure meds, but it doesn't seem like there's a reason to rush you onto them. Any decision about medication should be made in conjunction with your OB-GYN.
Since your initial deja vu episodes occurred immediately after your first pregnancy and have escalated during your third pregnancy, you might want to ask your neurologist about the potential connection between fluctuating estrogen levels and simple partials. High estrogen and/or low progesterone levels can be a seizure trigger. Stress, fatigue, and low blood sugar can also be triggers, so do your best to be proactive about your overall health right now. (I know, I know, you've got two kids, and another on the way - you're probably stressed all the time!).
One of the best things you can do is to write everything down. Write down questions you have for the doc, and write down the answers too. Write down anytime you have the deja vu episodes or similar symptoms. Write down things that might be triggers. And please feel free to check in here with any questions you might have. Let us know how things go with the EEG next week.
Best,
Nakamova
It's normal to feel a little scared and lost when considering a possible epilepsy diagnosis. But you've come to a great place -- folks here can offer experience, feedback, advice, support and empathy. (And some great jokes, too.)
Now to the nitty-gritty: Your neurologist will make a diagnosis based on a combination of test results and clinical evidence (i.e. the symptoms you're experiencing). The usual tests are an EEG and sometimes an MRI as well. Simple partials can be tricky -- they don't always show up on an EEG, so any info you can provide about your deja vu episodes will be important. With the driving restriction, your neurologist is erring on the side of caution. It is true that if left untreated, seizures can progress over time -- but they don't for everyone. It's different for every person unfortunately, so it's tough to make predictions.
If your neurologist decides that you are having simple partials then the next question would be about medication or other treatment options. Since you are pregnant, and your seizures are relatively mild (and you don't lose consciousness during them), the conservative course would course would be to hold off on medication for now, while keeping an eye on the simple partials. Plenty of people have healthy babies while on anti-seizure meds, but it doesn't seem like there's a reason to rush you onto them. Any decision about medication should be made in conjunction with your OB-GYN.
Since your initial deja vu episodes occurred immediately after your first pregnancy and have escalated during your third pregnancy, you might want to ask your neurologist about the potential connection between fluctuating estrogen levels and simple partials. High estrogen and/or low progesterone levels can be a seizure trigger. Stress, fatigue, and low blood sugar can also be triggers, so do your best to be proactive about your overall health right now. (I know, I know, you've got two kids, and another on the way - you're probably stressed all the time!).
One of the best things you can do is to write everything down. Write down questions you have for the doc, and write down the answers too. Write down anytime you have the deja vu episodes or similar symptoms. Write down things that might be triggers. And please feel free to check in here with any questions you might have. Let us know how things go with the EEG next week.
Best,
Nakamova
Endless
Even Keel
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Hi, Beanogirl,
Welcome to the forum!
I'm so sorry about your seizures. Your symptoms sure do sound like simple partial temporal lobe seizures. If you read through the posts in here I think you'll find you may have had even more seizures than you think - you just didn't recognize it or know that it was a seizure.
It's good you are getting an EEG. Since you are pregnant they may wait to do an MRI until after the baby is born. They will definitely wait on a CAT scan.
It's a good idea to start a seizure journal, to help track your seizures, your meds, and any possible triggers. It helps identify any patterns in your seizures and/or triggers. It's how I found out most of mine are at night, come in clusters, and that my major triggers are caffeine, alcohol, stress, and lack of sleep.
Look at this thread for lots of pre-made seizure formats:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/
As for driving. Are you in the united states? What state do you live in? Laws vary by state. I'm surprised she said no driving when you haven't had an altered consciousness seizure. That's usually what's used in the criteria. Our state says "seizure" but my epi (seizure specialist) says that means altered consciousness.
Here's a link where you can find the driving laws for your state:
http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm
If you are in the UK, look here: http://www.epilepsy.org.uk/info/driving/law-epilepsy
If you are in the United States:
Some states are mandated reporting (your doc has to inform the state), some aren't mandated reporting. In a non-mandated state, most docs don't notify the state licensing agency.
If you are in a NON mandated reporting state, many of us have found it helpful to not turn in our license, but just use it for ID purposes and voluntarily not drive. It's very difficult to get your license back once turned in, and the process can be long and full of paperwork. If you retain it, when it's legal you can just start driving again, no hassles. You can also adjust your insurance during this time. You don't tell them you have epilepsy. Just get the rate/price for a parked car. Tell them you are now taking the bus. If you cancel your car insurance it may be harder to get insurance again.
<<<hugs>>> Everything is going to be okay.
Welcome to the forum!
I'm so sorry about your seizures. Your symptoms sure do sound like simple partial temporal lobe seizures. If you read through the posts in here I think you'll find you may have had even more seizures than you think - you just didn't recognize it or know that it was a seizure.
It's good you are getting an EEG. Since you are pregnant they may wait to do an MRI until after the baby is born. They will definitely wait on a CAT scan.
It's a good idea to start a seizure journal, to help track your seizures, your meds, and any possible triggers. It helps identify any patterns in your seizures and/or triggers. It's how I found out most of mine are at night, come in clusters, and that my major triggers are caffeine, alcohol, stress, and lack of sleep.
Look at this thread for lots of pre-made seizure formats:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/
As for driving. Are you in the united states? What state do you live in? Laws vary by state. I'm surprised she said no driving when you haven't had an altered consciousness seizure. That's usually what's used in the criteria. Our state says "seizure" but my epi (seizure specialist) says that means altered consciousness.
Here's a link where you can find the driving laws for your state:
http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm
If you are in the UK, look here: http://www.epilepsy.org.uk/info/driving/law-epilepsy
If you are in the United States:
Some states are mandated reporting (your doc has to inform the state), some aren't mandated reporting. In a non-mandated state, most docs don't notify the state licensing agency.
If you are in a NON mandated reporting state, many of us have found it helpful to not turn in our license, but just use it for ID purposes and voluntarily not drive. It's very difficult to get your license back once turned in, and the process can be long and full of paperwork. If you retain it, when it's legal you can just start driving again, no hassles. You can also adjust your insurance during this time. You don't tell them you have epilepsy. Just get the rate/price for a parked car. Tell them you are now taking the bus. If you cancel your car insurance it may be harder to get insurance again.
<<<hugs>>> Everything is going to be okay.
Thank you so much for responding. I have been feeling so lonely and lost throughout all of this. My family is being supportive but I have so many questions that need answered and they can't help with that. My dr. called and they had a cancellation so my EEG is scheduled for later today. I'm nervous but hopeful I will get some answers.
I live in the U.S in Pennsylvania so I will have to check out the driving laws here. My Dr. asked if I can talk during an episode and answer questions. I never tried. I think she doesn't want me to drive until we see if I can respond during the seizure. I always thought I was having some sort of weird anxiety attack so I just stopped what I was doing and waited it out. I know it happened while I was at the gym before and kept exercising on the elliptical. I also remember being in a meeting and this one lady had a very thick accent and spoke very, very slowly. I felt like it triggered an attack. At the time I was thinking anxiety so I kept telling myself someones voice can not cause an anxiety attack. Now looking back I'm wondering if it could trigger a seizure. Any thoughts?
Again thank you so much for your response.
I live in the U.S in Pennsylvania so I will have to check out the driving laws here. My Dr. asked if I can talk during an episode and answer questions. I never tried. I think she doesn't want me to drive until we see if I can respond during the seizure. I always thought I was having some sort of weird anxiety attack so I just stopped what I was doing and waited it out. I know it happened while I was at the gym before and kept exercising on the elliptical. I also remember being in a meeting and this one lady had a very thick accent and spoke very, very slowly. I felt like it triggered an attack. At the time I was thinking anxiety so I kept telling myself someones voice can not cause an anxiety attack. Now looking back I'm wondering if it could trigger a seizure. Any thoughts?
Again thank you so much for your response.
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Often the brain starts getting "ready" to have a seizure a few hours before the seizure actually occurs. So while it could be the lady's voice that triggered your attack, it could also be something that occurred earlier, or something cumulative. It could be fatigue or low blood sugar kicking in. It could be something you ate for breakfast, or the diet soda you had at lunch. It could be the fluorescent lights in your office. (Those trigger a lot of folks. You wouldn't believe how many people have seizures at WalMart!) Do your attacks occur at a certain time of day? That can be a clue too.
I hope your EEG goes well this afternoon -- let us know!
I hope your EEG goes well this afternoon -- let us know!
My anxiety has always been horrible at Walmart.......or at least I always thought it was my anxiety. I'm wondering if something else was off and that is why I felt anxious. I'm also a diet soda junkie. I guess I'll be kicking that habit soon. I only allow myself one now b/c I'm pregnant but before I drank several a day. I never recorded when the episodes happened but I am starting to now. From the ones that I can remember they happened at different times during the day. Not sure what else was going on before they happened. Thank you so much for responding.
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The Aspartame (Nutrasweet) in diet sodas can be a trigger for some people because it's the same as "aspartic acid", a neurotransmitter in the brain that excites the brain. MSG has a similar effect on some people (glutamate is similar to glutamic acid, another neurotransmitter that revs up the brain).
When I had my first seizures, I had virtually nothing for a few days, but I had been consuming many, many diet sodas. I think the aspartame played a big role in pushing me over the edge.
When I had my first seizures, I had virtually nothing for a few days, but I had been consuming many, many diet sodas. I think the aspartame played a big role in pushing me over the edge.
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I live in PA too and you have to be 6 months seizure free before you can drive. I don't know if this relates to all types of seizure or not.
I know when I go out into public I get alot of anxiety. I can't deal with what some of the people do around me and how they act. My husband and I have started going places at times when we know the store will not be busy. Children bother me alot too so if we go out to the movies or things like that then we try to pick a time when there will be the least ammount of children there.
I know when I go out into public I get alot of anxiety. I can't deal with what some of the people do around me and how they act. My husband and I have started going places at times when we know the store will not be busy. Children bother me alot too so if we go out to the movies or things like that then we try to pick a time when there will be the least ammount of children there.
jragonfly
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Hi Beanogirl, I am new to simple partial seizures too, thanks for sharing your story! I live in NJ and the laws are similar, doctors are required to report to the DMV.
I also agree that you should try removing artificial sweeteners and msg from your diet. I used to be addicted to aspartame in gum and have been wondering if there is a connection.
Also take note of whether there are fluorescent lights around when you get attacks of anxiety, especially CFLs. Your attacks in Walmart sound very similar to mine, where I get terrible anxiety and almost panic for no reason, which is part of my aura and I usually have a bad seizure afterwards. You could be photosensitive.
I also agree that you should try removing artificial sweeteners and msg from your diet. I used to be addicted to aspartame in gum and have been wondering if there is a connection.
Also take note of whether there are fluorescent lights around when you get attacks of anxiety, especially CFLs. Your attacks in Walmart sound very similar to mine, where I get terrible anxiety and almost panic for no reason, which is part of my aura and I usually have a bad seizure afterwards. You could be photosensitive.
Thank you for responding. I had my first EEG and it came back normal. They want to wait on further testing and meds b/c I am 10 weeks pregnant. My neurologist said she isn't ruling out seizures but she wants to wait and see. I'm suppose to keep a journal and I go back in June. They happen in clusters and I will go a month or longer without anything so right now I feel like I am just waiting for the next one to come on. I wish there was a test to give you a yes or no answer instead of all this waiting and wondering what is going on in my head.
jragonfly, do you only have simple partial seizures and no other kind? I was just wondering if simple partial seizures always turn into a different kind of seizure. What other tests have you gone through?
jragonfly, do you only have simple partial seizures and no other kind? I was just wondering if simple partial seizures always turn into a different kind of seizure. What other tests have you gone through?
jragonfly
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Yes I only have simple partial seizures. The seizures themselves have changed over time in terms of symptoms, but I have never had a complex or generalized seizure. I have heard of simple partial seizures leading to complex partial seizures, but I don't know how likely that is to happen.
I actually have not gone through any tests yet myself. I'd be curious to know what an MRI would show, because I suspect I have a brain lesion on one side.
I'm curious how the EEG test goes...how long is it? What sorts of things does it entail?
I guess it would be completely normal unless you had a seizure during the test.
I highly recommend keeping the journal, seems to be more reliable than tests for some people, and it worked for me well, that's how I realized I was photosensitive. I write down everyday how I am feeling, and if I have a seizure I write as many details as I can remember about what happened before it.
I actually have not gone through any tests yet myself. I'd be curious to know what an MRI would show, because I suspect I have a brain lesion on one side.
I'm curious how the EEG test goes...how long is it? What sorts of things does it entail?
I guess it would be completely normal unless you had a seizure during the test.
I highly recommend keeping the journal, seems to be more reliable than tests for some people, and it worked for me well, that's how I realized I was photosensitive. I write down everyday how I am feeling, and if I have a seizure I write as many details as I can remember about what happened before it.
BlueSkies2220
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Absolutely! When you find your trigger its almost a relief cause then you know how to handle yourself in that situation or how to avoid putting yourself into a situation that could trigger it. I read that there are over 40 different types of seizures. Sometimes even with tests they can't find the cause but that does not mean that it's not treatable
I had simple partials for years until they started to generalize because they happened so often and I went for so long without treating them. combine that with a poor diet and a stressful environment. They would come and go with no apparent rhyme or reason [ie, not hormonally related]. i suppose after letting my brain fire off in that way for so many years, my seizures started to generalize. it happened slowly though, where simple complex became partial complex..and then it would generalize. Its not the same for everyone and each of us has had our own unique battle with this condition. The brain is a complex thing.
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Hello! I saw your post and wanted to say hi. Im a mom of 3 little boys, ages 7, 6, and 4 yrs old. I have had Epilepsy my whole life. I was on seizure medications with all three of my pregnancies. I was on Keppra and carbatrol. All of my children was healthy and happy when they were born. I was very blessed to not have any complications while taking my seizure medications during my pregnancies. I have had complex partial seizures and grand mal seizures growing up, but this year, after doing a Video EEG, and taking me off both the seizure medications, I started having simple partial seizures. I am taking Keppra XR for the seizures, that are controlled with it.
The symptoms I get with my simple partial seizures are the following:
Tingling in my left side of my body
feeling of fear or sadness
"off" feeling before the seizure begins
My heart begins to beat faster
My head begins to turn to the right
my body stiffens up
I get jerking on my right side of my body
Im consious throughout the seizure
I can hear people, and I try to communicate to them, but depending on how severe the seizure symptoms are, I usually have to wait til after the seizure is over to respond to them.
The tingling starts out in my left foot and hand, and spreads up my entire body, to the face, where the roof of my mouth feels like a million needles are attacking it.
My seizures last for a minute or two. I feel really weak and tired afterwords and have a headache.
If you have any questions, please ask me anything! Were all here to help!
The symptoms I get with my simple partial seizures are the following:
Tingling in my left side of my body
feeling of fear or sadness
"off" feeling before the seizure begins
My heart begins to beat faster
My head begins to turn to the right
my body stiffens up
I get jerking on my right side of my body
Im consious throughout the seizure
I can hear people, and I try to communicate to them, but depending on how severe the seizure symptoms are, I usually have to wait til after the seizure is over to respond to them.
The tingling starts out in my left foot and hand, and spreads up my entire body, to the face, where the roof of my mouth feels like a million needles are attacking it.
My seizures last for a minute or two. I feel really weak and tired afterwords and have a headache.
If you have any questions, please ask me anything! Were all here to help!
A lot has changed since I first posted. I'm now 35 weeks pregnant and counting down the days until baby #3 is here. I had my video eeg done in May and it confirmed that I have epilepsy. My seizures are in the right temporal lobe. I'm still not on medication for the seizures but I did have to go on anxiety/anti depressant medication in July. I was feeling so overwhelmed and lost that my depression and anxiety took over. When the baby is born they want to start me on Keppra. I'm nervous b/c I've heard so many horror stories about it. My seizures are still coming in clusters. I haven't had one this month yet so I'm waiting for it to come. I hate that I think like that and can't just go on with my life and not think about it. I don't want to make plans b/c I don't know when it is going to strike. I am so tired after they happen and since I am already exhausted being pregnant and taking care of 2kids it's hard to function. Thank you everyone for your replies.
Mom of 3 boys, I am so nervous to be home alone with my newborn b/c of the seizures. How did you cope?
Mom of 3 boys, I am so nervous to be home alone with my newborn b/c of the seizures. How did you cope?
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Well, it was hard at first. I had our first son in June 2004, and I had alot of help from my mom. I found out I was then again pregnant two months later, and our second son was born in May 2005. I had a seizure a couple of months after he was born, due to lack of sleep I was getting with two kids under the age of 1. So thats when my mom stepped in and started to come over on nights to help me out with the little one. She made sure I wasnt sleep deprived and got the sleep I needed so a seizure wouldnt come. We had our third son in November 2006, and luckly I didnt have a seizure after he was born. When he was born, I had a 2 1/2 yr old, and 18 month old. Again, I had alot of support and help from my mom and aunt. Whenever I needed a break, they were there to help with the kids. My best advise, Is just to take it easy, ( i know easier said than done) but if times comes about and you feel like youre just so overwhelmed, try to get a friend or family member to give you a break. It helped me out a ton!
As for Keppra, I have heard alot of people tell me how it made them have the "kepprage"... being frustrated and irritable. In November 2010, when my dr switched me over to the Keppra XR, he asked if I was taking a Complex B vitamin? I said no. I didnt even know about it til he told me that by taking a vitamin, it will help with the "kepprage" that keppra can bring on. For me, the Keppra has been a lifesaver for my seizures. I was on Keppra and Carbatrol starting at around the age of 18, and went for 12 years with hardly no seizures. This year, they took me off the Carbatrol, and Im on 3000mgs of the Keppra XR. Ive been doing great since!
Hi beanogirl, I know the feeling about the deja vu feelings etc. I have complex partial. (I'm 26) It was caused from a misdiagosis of a cold about 16yrs ago. My body had a "fritz" and a few weeks after that and I was diagnosed with diabetes. I was dianosed with E almost 6yrs ago. (type 1 diabetes-16 yrs ago). My seizures have lessened with the meds I'm on (even though my train of thought goes sooooo slow). My lovely mum checked out if I could have surgery (some people can) but if I do I will go blond. Waaaah! I'll stick with the siezures. I've had several EEG to see what's happening. At the moment I'm like you and live in a tiny town away from nearly everything (in NSW Australia though) and I can't drive. My parents are fine with being taxi. Chin up. There is plenty of support here
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MadameJ
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Hello, I read your post and bc of you, I joined the team! Our stories are very similar and so are our ages.
I too just discovered that I am epileptic with the same seizures as you, partial seizure. I too thought it was anxiety. However, it took a generalized seizure for me to discover this disorder. I guess I was a time bomb. So, yeah It can happen!!
I have a 3 mth old and a 2 yr old baby and am currently taking meds. Although, I have lived with it for 10 yrs before knowing this, the dr said that once your brain knows how to have a generalized seizure, there is a 97% chance of it coming back. However, now I know and when I feel an aura, I know to put babies in a safe place and ride it out. Of course, haven't had one yet.
I too just discovered that I am epileptic with the same seizures as you, partial seizure. I too thought it was anxiety. However, it took a generalized seizure for me to discover this disorder. I guess I was a time bomb. So, yeah It can happen!!
I have a 3 mth old and a 2 yr old baby and am currently taking meds. Although, I have lived with it for 10 yrs before knowing this, the dr said that once your brain knows how to have a generalized seizure, there is a 97% chance of it coming back. However, now I know and when I feel an aura, I know to put babies in a safe place and ride it out. Of course, haven't had one yet.
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hi beano girl, i can get that could be walking somewhere and i will get a sense of deja vu but mines always about my past.when you get this deja vu feeling do you feel sick as well as tingling? and your stomach feels funny to? i was diagnosed with anxiety and depression years ago before all this started, my seizures only happen in my sleep i have no recognition of them, the only way i know i have had 1 is because my dad has witnessed them and theres blood on my pillow and my tounge is swollen and bruised, i also have a headache which is like a hangover, my seizures only really happen roughly the same time every month, my neuroligist hasnt actually diagnosed me with epilepsy or what type of seizures im having, they refuse to do a night e.e.g as its to much hassle for them. what does your deja vu feel like? im wondering if it could be the same as mine.