What should i do?

[caelyn]

Hello everyone.My name is Caelyn.
I had seizures as a child and grew out of them when i got to be about eight years old. When i was sixteen they returned and i have had them ever since. I only have them about every three years and i will have one or two,sometimes three in one day,then be OK for another three years or so. Other than that i deal with what I've heard others describe as an aura. I'm not really sure yet what that's all about.
I'm here because i have been having some difficulties in a new relationship i just got into. I moved in with my boyfriend about a month ago. We've known each other since September. He's having problems with the way i interact with others. According to him i say things that are "off-the-wall" and have no relevance to the topic being discussed in a conversation. I think he's telling the truth because when i try to take part in a conversation i usually end up getting these looks from people from amused to annoyed and constantly it feels as if people are laughing at me.
I've taught myself to stay out of conversations and just listen while others speak. After a few minutes of this i will just space out and my eyes get glazed over.I've been told I'm odd,or antisocial but i can't help it.
When i'm trying to listen to a conversation i get the spaced out feeling because my mind will lock onto something someone says and then go off into another direction and a few minutes later it's like i "wake up" and try to reposition myself in the conversation. Is this epilepsy related or am i just nuts? lol. My boyfriend says i have brain damage and i have to learn to be functional and only i can know how to do that. I am so confused and scaired and angry that nobody can understand. :dontknow
What can i do to quit doing this???

 

[Meetz1064]

These are

other types of seizures going on, Caelyn, so you need to be re-evaluated by a neuro. Breakthrough seizures are something that happen to quite a number of us, so don't be upset about it. If you haven't had an EEG done lately, you need to.

Simple partials--which is what it sounds like you're having--can be a pain in the arse, and inconvenient. So, talk to the neuro, and document in a seizure journal what is going on. Have your boyfriend help you out--he can talk to the neuro, and give specific eyewitness accounts.

Welcome to CWE, btw. I'm sure you're going to like it here. Be sure to check out all of the nooks and crannies. There's plenty of them--and tons of information to be found, and friends as well.

Take care!

Meetz
:rock:

 

[caelyn]

Thanks...it's funny that this has been going on my entire life and noone has ever told me that there are different types of seizures besides grandmal and petimal. There are apparently many many more. I just went on youtube and watched some videos about what people with the simple partials experience and i realized i have the same experiences almost all the time. This is almost a constant feeling for me in such a way that when i actually feel clear-headed i notice that something is different. Kind of backwards huh? Why didn't my nuerologist tell me this? I've been seeing him for nine years and he never told me? For nine years i've thought i was nuts and doomed to be a social outcast. I feel really really angry right now=(

 

[caelyn]

Also i just realized i'm probably posting all this in the wrong section.Is there any way to move it? I am sorry...

 

[epileric]

Don't worry, you're exactly where you should be. Your introductory thread should be in the foyer.

If it were in the wrong place I or one of the other moderators would move it for you. No reason to stress about it.

Also welcome to CWE.

 

[caelyn]

Having a huge fight with my boyfriend. He says I'm talking in circles and don't know how to have a conversation. Like I'm talking in circles. Idk what to do when he gets so angry.

 

[Endless]

Caelyn,

Wow, does that sound familiar. That used to happen to me often, before anti-seizure medications. If you said something goofy and don't remember what you said, it could have been a complex partial seizure, probably in the right temporal lobe. In a complex partial seizure there is an impairment of consciousness or memory.

Being awake/conscious and noticing things are backwards could be a kind of simple partial seizure.

You are actually really lucky your boyfriend is telling you about your communication, and that you've figured out it is seizures. Nobody ever told me until it cost me my job.

Here's a link with all the different kinds of seizures. They are pretty general, though, and don't go into detail about what the seizures feel like. The best thing I did when I first found the forum is to read through as many of the strings as I could. I learned what all the different seizures look like. I discovered I was having a lot more seizures than I thought I was having.

Epilepsy Foundation - Types of Seizures

Wikipedia - Types of Seizures

Wikipedia - Temporal Lobe Epilepsy

It may help your boyfriend be less angry if he understands your seizure disorder. After doing some reading yourself and collecting your thoughts, it may help to talk it all over with him.

As for your neurologist - many of them just push pills. Think about getting a new doctor who actually communicates with you. I see a really good epi (seizure specialist) who communicates when he has time, but 10 minute appointments just isn't enough to exchange meaningful information.

It sounds like it's time to have your seizures re-evaluated. If you are having this many seizures you need something to change. Are you on medication?

Oh! Almost forgot. Most women tend to talk in circles and stories. It's the normal way we speak. It's the way we are wired. Most men tend to communicate in a linear fashion. It's the way they are wired. And many men assume their way of communicating is the right way, and we're just difficult. lol.... so no worries.

 

[Elsie]

I agree about the men/women conversation thing. DH gets so impatient with me when we talk, and I don't have E related conversation problems, except for the forgetting words part...which come to think of it annoys the heck out of him too.

Anyway, I'm glad you found us. Drs. don't give us information unless we specifically ask a question, and if we don't know the question to ask, well, they mostly just push us an Rx and send us on our way.

I didn't realize until I started reading around here the other types of seizures one could have. I too thought there was only Grand Mal and Petit Mal. I was surprised to learn that I'd had a few other things happen to me before I was diagnosed and a couple after that could have been classified something else...

So I hope as you start to recognize what you are going through you will be able to talk with a dr. and explain things better and get some good help. And hopefully if your boyfriend learns things too he will be less critical of you.

 

[caelyn]

Endless -"It may help your boyfriend be less angry if he understands your seizure disorder. After doing some reading yourself and collecting your thoughts, it may help to talk it all over with him.
"
I think part of my mistake last night is that i didn't have my thoughts gathered when i tried to talk with him so i made it worse. Also he was dissatisfied with the research i did since it wasn't from the ultimate authority on epilepsy. He said something about a Mayo clinic and the American something or other for E. Does anyone have things links?

 

[Endless]

Denial

Also he was dissatisfied with the research i did since it wasn't from the ultimate authority on epilepsy. He said something about a Mayo clinic and the American something or other for E. Does anyone have things links?

<<<<<hugs>>>>> I'm so sorry he's giving you a hard time. You have enough things in your life right now that are hard.

Wow. It sounds like your boyfriend is pretty deep in denial right now. Which is a pretty normal place to be, at least for awhile. But most people move beyond that in time.

Is he aware that the mayo clinic is not the definitive research institution for epilepsy? That the vast bulk of the research is done in the thousands of other hospitals around the world?

Well, if thoses sources are the only ones that he will listen to:

The mayo clinic has a brief patient info site. Not very indepth: http://www.mayoclinic.com/health/epilepsy/DS00342

Here's a link to the epilepsy foundation site. They have tons of info, both at the patient level, and if you want more details, look in the "professionals" section.
http://www.epilepsyfoundation.org/

Here's another website dedicated to epilepsy: www.epilepsy.com

The wikipedia site has scientific studies and textbooks referenced at the bottom of each article. Facts stated in the article are supported by the referenced footnotes. The wikipedia site just gathers all this information in one place, as opposed to having to dig out each scholarly research article, publication, and textbook separately.

If he's not ready to listen to the research from doctors and scientists, maybe he's not quite ready to listen at all yet???? It just seems to me that he's pretty resistant on this topic so far, and just rejects what you tell him. My family was like that at first, but now some of them are coming around. It took a lot of patient communication on my part. Some of them have never come around, and I guess I no longer expect them to.

Will you let us know how it goes with him? Also let us know if we can help.

 

[caelyn]

Thank you Endless. Well i don't know what exactly is going on so i guess i will drop the subject for now, while doing research on my own. I will probably be able to communicate better with him when we go to the my Nuerologist together in Januery. Otherwise right now i'm pretty much just keeping my mouth shut unless i'm absolutely sure what i'm saying will make sense to those around me and staying away from people when i get into my dark moods. Listening to emenem helps and going outside used to help and stairing at the stars till my mood went away but the neighborhood isn't safe so i can't do that. I can't hide my mood because he always knows when something is wrong.He has this sixth sense about knowing when something is bothering me and what he can't grasp is that it's nothing that is happenning and there is no reason for the mood-it just is.Talking about it is pointless and only exacerbates the situation. As bad as it sounds i just need to be left alone and eventually i will have a different mood.
Anyway thanks to everyone who has replied.It's nice to talk to someone who understands.=)

 

[sbncmo]

Hi caelyn. Welcome to CWE.

It sounds like you have your work cut out for you. We have some similarities. I strted having grand mal and absence seizures when I was a year old & they continued until I was 5, although my mother never told me until just this year. I went thru school okay, then when I started college, strange things started happening. I would be going to class & just stop, not knowing where I was, where I was going, nothing. They would last a few minutes & my memory would come back & I'd go on. I married 6 months later and the memory lapses continued in number & intensity. I couldn't remember how to get home. I kept being in near accidents from it. At first I was scared, but I learned how to calm down. In time I started losing consciousness. One time I passed out & came to just a second or two from driving off the road into a lake. My small son & nephew were with me. It scared me to death.

I think it was just before that incident that I had started seeing a neruo. He decided to run an EEG & told me I had a seizure disorder. He put me on some different meds to treat both my bipolar & seizures, and even ran another 2 EEG's over the 12 years I was being treated by him. But in all that time he never told me what seizure disorder meant. I eventually had to stop seeing him due to a lapse in insurance & weaned myself off Trileptal.

Within 6 months more strange things started happening. One was I felt like I was being shocked all over my body, repeatedly. I also would have spells where I would become rigid & I felt like my body would explode. Both of these were quite painful. My family doctor, not knowing I had been diagnosed with seizure disorder, thought I was having muscle spasms & gave me relaxants, which needless to say didn't work. After a year, still more oddities started happening. I went to my doctor & described it as sensory overload - everything too close, too bright, sounds distorted, etc. She said she thought I was having seizures & sent me to a new neuro.

This neuro tried to write me off from the get-go. He asked if I was losing consciousness. I told him I have in the past, but I don't remember any recently & he said if I wasn't losing consciousness, I wasn't having seizures. This was after I had told him about my previous neuro & 3 positive EEG's for seizure activities. So he went ahead & ordered another EEG. When I returned, he said I had highly active seizures, therefore I had a seizure disorder. But, as with the other neuro, he didn't explain anything. He put me on medicine that I reacted to immediately, but I stayed on it hoping I would get past that.

Then I came & did LOTS of research. When I went back, I was able to talk openly with him. 'Seizure disorder is the term used for epilepsy - yes. You don't tell a patient they have epilepsy because you are worried it will scare them & their family - yes.' I then went on to explain each symptom & it's name & he confirmed all of it. After that we had a good doctor/patient relationship. Our biggest problem has been his nurse - I left messages that she wouldn't deliver, he left messages that he wanted me in to see him that day & she wouldn't call me in until the next day, I told the nurse I was allergic to a medicine & she wouldn't tell him, I was in the ER with multiple seizures & she determined that he didn't want to see me anymore since he wanted me to see an epileptologist, yet when I called later, he does still want to see me, etc.

My family didn't take things too seriously until I ended up in the ER. Then they started asking me questions about each of my seizure types, wanting to know how to handle them, & watching me now like a hawk, my husband calling from work often to check on me, etc. It takes time, but your loved ones will come around & the websites that have been suggested for research are wonderful - just make sure your boyfriend is with you when you are reading them or print out the information & give it to him (that's what I did at first).

You do have one advantage - you seem to be able to know when you are going into a seizure with a aura. I have 8 seizure types & only one gives me a 30 second warning. I hope new tests will get you back on track with meds that work for you. Another disadvantage for me - I'm allergic to almost every AED, if not allergic, just non-responsive.

Yeah, those seizures where you wake up & don't know what you were doing or how you got somewhere or what you were saying, are pretty unsettling. Hang in there. Keep bringing information to your boyfriend. I'm glad he is going with you next month. Let us know how things turn out.

Shelia