Need some answers...

[Lafontaine_b]

Hi guys!

My name is Brittany, I am 21 years old and since Christmas week, I been having "episodes"....
During these episodes, I don't remember anything that happens but any friends nearby will tell me what they see.

The first time it happened, I was at work. I started to get a feeling in my stomach- that's honestly the only way I can describe it. I starting to feel sick, and white was appearing. I told someone that I felt as if I was going to pass out, they had me sit down. According to everyone, I couldn't talk. I would occasionally nod. I was burning up, hot and clammy, I become very pale. My eyes would roll to the back of my head and then occasionally go cross-eyed. People tell me it was like I wasn't really there. They say I move my lips as if I am trying to talk, but nothing comes out. My breathing changes. I was sent to ER and told it was syncope (fainting spells). Afterwards, I feel really tired, and weak, and almost always have a horrible headache. Since the first time, its happened atleast 8 more times at work. The second time it happened, I was told I was malingering, and having "fake seizures"/ pseudoseizures. They said it can be an onset of stress, which I had no stress in my life at the time....

People at work, tell me they feel like I am having seizures and i need to be put on anti-seizure meds. I have never - that i recall- had seizures before. but i know I am not faking it. I been feeling legitimately sick, and these "episodes" are becoming more frequent, where I will have them at night. I can tell when I had one, I just don't remember what happens during it. I was sent to an neurologist. I already had an MRI, and haven't seen my neurologist since- so I am assuming it came back normal since they never called me except to set up an EEG. I have an EEG for a week from now. I am worried it won't show anything. So I was hoping for maybe some advice? Do you guys think these are seizures? What can I do? When I first met with my neurologist, he said he doesn't think they are any form of seizures- including pseudoseizures. He said he thought it was syncope. but even with that, it doesn't explain why it takes me so long to "be normal" again. I really feel so lost because I feel like something is wrong, its not normal for me. But so far, for 3 months, I have had no answers.

PLEASE HELP?

 

[valeriedl]

Some of these same things happen to me when I have simple and complex partial seizures.

During a simple partial seizure (sometimes referred to as an aura) I'm aware of what's going on but I'm really confused. I don't feel right. Sometimes I'll be dizzy and my lips will tingle. Things in the room will look like they aren't in the right place. I can talk but I have problems thinking of words and answering questions. My husband says I will get very pale at times. Different things happen to different people and I know that others on here have said some of the things that you said have happened to them too.

During a complex partial I will completely blank out. Sometimes I may have a simple partial before it, so I know it's coming on. Other times I will just go right into it. I may just stare off into space until I come out of it but I have no clue what's going on or what I'm doing while I'm having it.

I may talk during it. The sentences I say might be right or they may just be mumbled things with a real word here and there. I may do actual things, I loaded the dishwasher once not knowing I did it at all. My husband said I like to play with my cell phone a lot and I won't give it up.

During a recent seizure I thought I was at my grandparents house and that my husband was my grandfather. I kept telling him that I needed to call home to let my husband know where I was. I don't remember a thing about doing it.

Again different people do different things during a complex partial. So just because this is what I do doesn't mean it's what you will do.

After almost all my complex partial seizures I'll have a horrible headache that will last for hours. I'm very tired and will sleep forever, I may even sleep the next day away. Depending on how bad and how long the seizure lasted the worse these are.

I don't think I have seizures in my sleep. My husband and I sleep in separate bedrooms so there's no one there to witness it if I'm having one. Other's can probably give you more info on sleep seizures.

I was diagnosed 11 years ago with epilepsy and they have no idea what caused it, and they still don't. I had a major tonic colonic, the type where you shake, completely out of the blue. There are a good many people here who have had problems figuring out if they have epilepsy or not because of results from their tests.

Give your neuro a call and find out what the results were from the MRI. Sometimes offices 'forget' to call with the results even if they are bad.

Keep a journal of when these happen, how long they lasted, what you did during them and what you felt like when it was over. This will help let your dr see what's going on.

Good luck and I hope you find some answers soon.

 

[Lafontaine_b]

valeriedl: Thanks for replying. It get so frustrating and overwhelming. Especially when you feel like something is wrong, and people tell you that you are faking it.... So you can you feel/tell when one is coming? My neurologist has told me that's not possible. But sometimes, i can tell something is off, and I make myself sit down, and then end up having an "episode", Other times, like you said, I will just go straight into it, with no heads up. And every once in a while, when I feel like its coming, it doesn't. I know that during the day, I usually have many blank stares as if I am not there. But they usually only last for a minute. People at work are aware of my "episodes" and get really concerned when I blank out. But just because I blank out, doesn't always end up in a full blown episode. Kinda like you were saying. I feel off, but I can still talk at that point, but it takes me a while to think of words... does that make sense? , If I am at that point, someone will sit with me and make me work on my breathing. I am finding that if I concentrate on my breathing, it doesn't "stop" it from happening, but it helps me get through them faster?? I had a headache that lasted for hours. And I can spend the full day sleeping. I used to be so active, but now I am constantly feeling weak, and tired. I just got my license 2 months ago, and can no longer drive, because sometimes my vision is just "off?" Some things will look closer, and other things further away then they actually are. I was walking to and from work up until last week, when I had one walking home. Does more physical activity seem to make it worse for you? Thanks again for your reply

 

[Lafontaine_b]

Also: have you had an EEG done? What is it like? Do they try to get you into a seizure? And if you don't have one then test shows you are negative for epilepsy? Is it possible to be epileptic and have a normal EEG?

 

[valeriedl]

Yes there are times when I can feel one coming on, there are a ton of people on here that can too, your dr is wrong about that. It's usually considered and aura or partial seizure, which are actual seizures. And there are the other times when I just go right into a complex partial, blanking out and not remembering anything, with no warning at all.

My seizures tend to last for a few minutes to over 10 minutes. If one goes on for a long time or if I have several in a row I'll go to the ER. I may have more than one seizure in a day that are hours apart, this happened a few weeks ago.

When a person who knows nothing about epilepsy hears the word 'seizure' they relate it to a tonic colonic, the type where you shake. They don't realize that there are several types. This could be why some of the people you work with think you are faking it.

When people are diagnosed with epilepsy they are usually unable to drive because they may have a seizure while doing it. I know this would happen to me.

If I over exert myself I may have a seizure, it has happened often. Also if I don't get enough sleep I'll have one.

 

[arnie]

Hello and welcome to CWE!
Some of the feelings you have seem a lot like what I have during my complex partial seizures, except I don't lose consciousness or awareness during mine. My consciousness is altered and I do things (like lip smacking) that I'm not aware of, but I can remember the whole episode. They are very fatiguing. I've had epilepsy for over 30 years (I'm 55), and do not have good seizure control with meds, unfortunately. As for the EEG, many of us here, myself included, have perfectly normal EEGs even though we definitely have epilepsy. An EEG can tell you if you HAVE it, but it can't tell you if you DON'T have it, if that makes sense. Epilepsy often has to be diagnosed by symptoms rather than by EEGs or MRIs or such. It's good that you are trying to learn as much as you can about epilepsy since you often have to advocate for yourself, and you need to be knowledgeable about it.
Please keep in touch with us here and let us know what's going on, OK?

Carry on!

 

[Lafontaine_b]

Thank you ! I am conscious during it, and can apparently hear people talk, because I respond with little nods. But I do lose awareness of whats going on.

Its kinda weird. I don't really know how to describe it. An out of body experience for sure; I remember going through it. I don't remember everything that happened during it.

The last time I had one at work, I remember everyone telling me to sit down, because I looked like I was gonna have one, but I didn't want to. It took 3 people telling me to sit down, before I finally listened. I remember being told to sit down, I don't remember not listening LOL. I remember small things during it.

The more I read, the more I feel like I am having Simple/Complex Partial Seizures. I just feel crazy because I never had any medical problems before!

Thank you everyone for the replies. It really helps. Sometimes I feel like I am all on my own during this. Good to know, there are people going through similar things.

 

[kirsten]

Hi and welcome to the forum. I just want to correct something your doctors seem to have confusion about: malingering and pseudoseizures are not the same thing. They don't even live in the same country. Malingering is making up or exaggerating symptoms as a bid for attention. Pseudoseizures would have the patient actually showing and experiencing every sign and symptom of a seizure--you would not be aware of what was happening and the goal would not be to gain attention. The only difference between seizures and pseudoseizures is that if you were hooked up to an EEG while they were happening, the seizure would show abnormal readings, while the pseudoseizure would not, and there would be no seizure focus, no physical reason for the pseudoseizure. In other words, the etiology of a pseudoseizure would not be there. People experience pseudoseizures, sometimes in tandem with conversion disorder or similar disorders, for reasons that require their own treatment. They might, for example, find it absolutely impossible to experience their own emotions and their bodies will, in response, convert those emotions into symptoms. Pseudoseizures are NOT pretense, and they are not selfish attention seeking behaviours. In fact, some epilepsy patients sometimes have pseudoseizures as well as epileptic seizures. A malingerer would go to the ER saying they'd had a seizure when they had not. Someone with pseudoseizures would go to the ER after a genuine convulsion or what ever, believing absolutely that they had indeed had a seizure. It's completely negligent to tell a patient they're having pseudoseizures without suggesting treatment for them. Conversions of that sort are serious and need to be treated as such.

Not that any of the above is relevant to you at this point, since to diagnose you with pseudoseizures, all physical diagnostic tests would need to first be done to rule out every other potential cause. It just points to a severe lack of knowledge on the part of the doctors you have seen in the ER. But at the very least, it does absolve you from that horrible label of 'malingering.'

I've found, with mysterious symptoms, that it's often useful to see a really great physician rather than a GP or specialist, because they have wide in-depth knowledge about so many different fields. Not saying it's a good idea to quit with the neurologist, but a physician might be able to help out if this problem is not caused by epilepsy.

 

[arnie]

The difference between pseudoseizures and malingering is critical, and kirsten is absolutely right in explaining that. One thing I would like to clarify about epilepsy diagnosis, though, is that, as I mentioned above, you can absolutely have normal EEGs, there can never be a definite seizure focus located, and you can still have epilepsy. I found an interesting article on EEGs which I strongly encourage you to read before you get your EEG so you can show the docs and techs that you have read up on things a little. The more they see that you know, the more information they will give you. Most medical people like it when their patients are proactive in getting good information and are wanting to have an active role in their care. That's especially important in a chronic condition like epilepsy.
Here's a quote from that article:

"It is crucial to recognise that a normal EEG does not exclude epilepsy, as around 10% of patients with epilepsy never show epileptiform discharges."

And here's the link to the article itself:

http://jnnp.bmj.com/content/76/suppl_2/ii2.full

Onward and upward!

 

[kirsten]

You know, in my day, 20 years ago when I was diagnosed with epilepsy, I did not need to go chasing after an answer. I never had to 'pass' any diagnostic tests. I had a few tonic clonic seizures, one of which was not even witnessed by anyone but that my doctor evidenced through the fact that I'd bitten my tongue so badly. After that, my GP informed me that this was not normal and that I probably had epilepsy. He sent me to a neurologist, who did the necessary tests to exclude malignant tumours and the like, and then put me onto anticonvulsants. As far as I know, the first time we really got an abnormal EEG reading was a couple of years later with an ambulatory EEG. I just don't understand these doctors today who are giving patients such a hard time with their seizures. It makes me so angry that people suffer from something very serious and scary, and are treated as though they are...I don't know...lying, when what they need is medical treatment. I don't get it.

 

[kirsten]

I've found a really great site about patient empowerment that might help you to get the care you need. These days, it seems that the system has changed and that we need, at times, to advocate quite strongly for ourselves in medical settings. I've seen studies where patients with chronic illness who were put on a short empowerment course had better medical outcomes than control groups. I always tell the story of my mom: a little over two years ago she suspected there was something wrong with her health but doctors were telling her there wasn't. A friend who is a cancer survivor suggested my mom insist on a PET scan even though my mom had tested negative for other tests for cancer. The PET scan showed that she did, indeed, have fourth stage breast cancer. She couldn't save her life but she was able to have treatments that have, thus far, extended her life by just over 18 months longer than her medical prognosis would have allowed. http://patients.about.com/od/empowermentbasics/a/wisepatient.htm

 

[MiaAlexandria]

Needs some answers

Hi Brittany, it sounds like you are having seizures. When you have a seizure, the first clue is that you don't remember anything. If you have an EEG (they usually start with a 20 min EEG) they will be able to detect a seizure clearly. If they don't see it in a 20 min EEG (which they don't always see in mine and I am clearly an epileptic) they you should ask to have a longer EEG. I hope this helps. Know that an EEG is completely painless but they can collect a lot of information from them. Let us know what happens.

 

[Lafontaine_b]

Hey guys! Just wanted to first say thank you to everyone who has taken the time to reply- it really has been so helpful to get that kind of support and advice.

Kirsten, I am so sorry to hear about your mom- I can't even begin to imagine how horrible that must have been to go through. I did read the link you posted though, and it is actually very helpful and i am gonna take note of it, and be sure to use those tips during my next appointment.

I don't think there is anything more frustrating than being told you are faking it, when you KNOW that something is wrong. And the way the ER's will treat you when they think that.... they are so rude. I would come home with a big bill, and in tears because not only did I not get answers, but the care I received was far from good. When they would hook me up to the machines, and my heart rate would change, the dr's did not take note. When friends asked why my eyes rolled to the back of my head, they just said "who knows" and left.... Now, I try to avoid the ER.


I did want to mention: I have done quite a bit of research since the first "episode" and I totally agree, there is a huge difference between pseudo seizures, and malingering. I feel horrible for people who face pseudo seizures, because that term gets thrown around it seems like, in a negative way. Where people are accused of faking seizures.

Malingering is totally different for sure, and I KNOW I am no malinger. I actually have a genuine fear of ER's and doctors and would avoid them at all costs (until now-haha). The first time it happened, I begged not to go, but I was not responding well enough, so they took me in...
So malingering is definitely not the issue.

Seems like there has been three other possibilities that have been listed around for me, which is pseudo-seizures, simple/complex partial seizures, or syncope.


So from what I have found and would like to share:

"SORRY- I CANT SHARE LINK"

This website explains that "50/52 patients with pseudoseizures closed their eyes during their "seizure," while 152/156 of actual epileptics opened their eyes during their seizures"

My eyes ARE open during it. I know that afterwards I get tired, and just want to sleep so I will close my eyes.

You guys have plenty of info on the actual seizure so I won't share any sites with you for that. Although my favorite website for information for that one has been:


CANT SHARE LINK

With syncope (or fainting spells) there is a lot that isn't explained. For example:
I don't technically lose consciousness.
I have only truly fallen a couple times, I usually sit down before then.
It usually takes me a while to return to normal.

CANT SHARE LINK

So: thats just kinda from what I have read. I am finding that my symptoms match more with the seizures than anything else. But we shall see. I did have another "episode" tonight- in the back of the car- WHICH btw, I don't know how many of u had one in the back of a car- but its very very uncomfortable. My friends were going on a hike though, and even though I knew I wasn't feeling great, I decided to go and it ended up with me having an episode afterwards. The hike was nice though

 

[kirsten]

I don't think there is anything more frustrating than being told you are faking it, when you KNOW that something is wrong. And the way the ER's will treat you when they think that.... they are so rude. I would come home with a big bill, and in tears because not only did I not get answers, but the care I received was far from good. When they would hook me up to the machines, and my heart rate would change, the dr's did not take note. When friends asked why my eyes rolled to the back of my head, they just said "who knows" and left.... Now, I try to avoid the ER.

This makes me want to cry. It's horrible; actually disgusting that they've treated you that way. :hugs: A huge part of advocating for myself has been to fire doctors when they're not helping me. Of course, you can't do that with ER staff, but if your neuro or other docs don't seem to be taking your symptoms seriously, you're well within your rights to find a better doctor, and doing so will likely go a very long way in helping you to get the treatment you need. It's difficult to view it this way but the fact of the matter is that you pay your doctor, and s/he works for you--you're his client. If he doesn't do his job, he has no power to keep you as a patient. The right of choice belongs to you alone. It would probably help a lot if you take a friend with you to your appointment who has been there during one of these incidents, because then the doc can ask pointed questions that you'd not be able to answer yourself.

New members' links don't show up in posts--it takes a certain number of posts before you can put links up but you can get around it by typing out the address like this: www dot website dot com.

 

[Lafontaine_b]

thanks Kirsten! I am gonna go to my appt next Friday with all this in mind!

couple questions: do your seizures tend to happen around the same time time of day? I have noticed my episodes usually (about 90%) of the time are after 5pm...

nothing crazy happened today. felt super sick all morning and afternoon, but no episodes. just kinda hard emotional day.... I almost feel embarrassed to hang out with anyone from work now. everyone wants to talk to me and are genuinely concerned and I will say hi and run the other direction.... I just don't know what to say to anyone right now.

I don't really know how to explain it, I just feel ashamed I guess... embarrassed that people see me like this.


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[masterjen]

Definitely search for a neurologist (preferably epileptologist) who is willing to listen and take you seriously if you are not happy with how Friday's appointment goes. Since the possibility of pseudoseizures has been thrown out there, that as a potential diagnosis can be difficult to get around especially if your doctor is one of those that believes EEGs and/or MRIs must be abnormal to be epileptic seizures.
Your doctor might suggest a neuropsychiatric exam to support or refute the psychogenic theory - don't shy away from this if it comes up at some point. Just make sure this neuropsych. has lots of experiencing dealing with patients with seizures. It will be another professional's input into what is going on, and he/she can be a potential referral source (an "in", so to speak) to a seizure specialist.
I hope you have a parent or other older adult you are close to who can go with you. As frustrating as it is, an older concerned individual can have the effect of legitimizing everything that is going on. I'm older than you, and having my mother accompany me can change the whole dynamic of the appointment in a positive way.
Good luck on Friday and keep us posted!

 

[Lafontaine_b]

it is gonna be difficult because my mom has been diagnosed with depression, ptsd, anxiety, and bipolar.... I am so lucky to not have that! I've gone through my bouts of depression- I think most people have. and generally these things run in the family. but I will definitely see a neuropsych if it is suggested. I wish there was someone who could go with me, unfortunately- I don't have any family around. I got a couple friends who have offered to come though but they are no older than me. thank you for all your help


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[valeriedl]

couple questions: do your seizures tend to happen around the same time time of day? I have noticed my episodes usually (about 90%) of the time are after 5pm...

nothing crazy happened today. felt super sick all morning and afternoon, but no episodes. just kinda hard emotional day.... I almost feel embarrassed to hang out with anyone from work now. everyone wants to talk to me and are genuinely concerned and I will say hi and run the other direction.... I just don't know what to say to anyone right now.

I don't really know how to explain it, I just feel ashamed I guess... embarrassed that people see me like this.


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Most of my seizures tend to happen in the evening but I do have them at any time of the day too. I don't know if I may have worn myself out during the day and that's what brings them on in the evening or not?

You could be having seizures in your sleep which is why you don't feel good in the morning. I don't think I have sleep seizures. There have been times however I'll wake up in the middle of the night sort of dizzy and feeling like crap. I don't know if I could be having a seizure or if it was just something that I could have been dreaming about. People who do have seizures in their sleep may be able to give you more answers to that.

DO NOT feel embarrassed that you have epilepsy!!!! Don't worry about how other people will see you!!!! It's something that you can't help that you have. I know this is a horrible example but it's sort of like when you have a huge zit on your face. You worry about people looking at it and can't stand it being there but it's just something that you can't help that it happened.

Having people wanting to talk to you is a great thing! They aren't scared of you so you shouldn't be scared of them. Since the people at work have seen you have a seizure is an even better thing. They know what will happen with you and realize why you are doing what you are doing. They aren't hiding from you so don't feel like you need to hide from them! Don't keep yourself holed up because that may make things even worse.

Don't worry about how old one of your friends are who want's to go with you on a dr visit. If they want to go, take them along. When you go with someone you both hear what the dr has to say. This way if you forget something the other person will hopefully remember. If the person has seen you have a seizure they could better describe to the dr what you do during one because generally you won't. They could even ask questions themselves.

Good luck and I hope things go well.

 

[Lafontaine_b]

Valeriedl: You have seriously been so extremely helpful... I kinda wish I joined this forum sooner!

I was thinking that was the same reason why I tend to have them in the evening time? I figured after a full day of working hard, or no sleep or whatever, I exhaust myself out.

I can't really tell if I had one at night or not, and still haven't found enough info on sleep seizures to tell, but I feel like its possible. And that would make a lot of sense, waking up feeling that way. I woke up feeling AMAZING today, and felt like I actually slept- and just refreshed? So i thought maybe it was because I didn't have any last night.

Thanks for all the advice on the emotional part of it.... I appreciate that more than you know! I decided instead of facing my appointment alone, I might as well bring my friend, who has offered to drive. Which is BTW, extremely helpful when you can't drive.

I am so scared to tell everyone I don't feel right... but thanks to your advice I told someone today. I had this strong smell of like a "burning tire??" and told someone, got sent to lunch, and ended going into one within 10 minutes...

I am lucky that my work has been so supportive. I worry that one day they will tell me I am too much of a liability, but every time I wake up, I just have all the supportive faces there- which between them and now this forum, its all I got. :hugs:

 

[Lafontaine_b]

so I had my EEG today.... that strobe light and hyperventilating exercise were like pure torture. had bad vertigo after the strobe light, and felt a little shaky but I didn't have a seizure. they won't read the results until Friday... I just want some answers.


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