Questioning my body....

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Autumn Breeze

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Before I begin, I want to apologize if at some point I stop making sense. My brain is still fuzzy from my last TC and concentration isn't really my thing right now.

I started having seizures about 10 months ago, I have had 3 episodes. At first we thought it was related to my cycle, but this last one makes us think that it is stress. Last winter I went to the hospital, they did an MRI, CT and EEG, everything was normal/inconclusive. Honestly, I don't even really remember the EEG and I haven't been able to get my records yet. So, everyone is saying that they're PNES and I just don't know.

Anyway, as I do more reading about types of seizures and triggers, etc I find myself questioning my body more often. Like...those floaters I see...I thought that was normal. And then there is the muscle twitching. Where it happens is kind of random, as is when it happens. It might twitch, rhythmically, anywhere from just long enough to notice to 30 minutes.

And I wonder how/if having a seizure in my sleep changes anything about my doctor's opinion on it being PNES? But I haven't heard back from him...
 
Sorry you are going through all the confusion. I think anyone who has seizures and gets an inconclusive EEG/MRI/CT has to go through the process of wondering what the seizures are. I would call someone to talk, whether it be an epilepsy nurse of the Neuro themselves to get a better understanding of what is going on. If not I would just keep track of seizure patterns and triggers as much as possible. That seems to always help in any situation. Good luck and I hope you start feeling better soon.
 
So, I've been keeping track the last couple days. Obviously my memory is crap now. It wasn't great before, especially when I was on Lamictal in the past. But throw in the seizures, and I have a really hard time with short term memories. It sucks.

I did notice that *all* of my seizures have happened on Wednesday.
 
Correct me if I'm wrong, but it seems like you're really letting it get to you with analyzing your body with such scrutiny. While it's good to recognize warning signs, you have to give yourself time to breath and relax. Try to stay positive and not obsessive. It will work itself out in time if you are strong, I promise :)
 
Thanks I appreciate the perspective. Obsessive is how I have to deal with it while it's fresh. The lack of communication from my GP is another reason. A third reason is the neuro that my GP suggested won't see me because my hospital records say PNES and he "doesn't treat PNES". So, because of all of that, and because this is all very new...I feel like the more information I can collect for myself, the more I can relax. I've done this after each seizure, and I always manage to reach a place where I feel like I can slow down and wait to see what brings itself to me. But I can't wait for studies and journals to find me, I need to find them.
 
I do the same thing. I had a weird episode last night, and I've been on here since then trying to find out information. I drive myself insane with the stress of not knowing.
 
It really isn't fair that the Doctors just leave you to float in the wind. They need to explain things better. Otherwise when my brain is my hazed I tend to think "worse case scenario" and all of this could be avoided for everyone if the doctors just gave patients more info. Whether they are epileptic or not.
 
Yep, for some of us it's normal.

I did the same thing when I found out I was pregnant. I drowned myself in pregnancy and birth and ended up teaching childbirth education and attending births as a doula. So...maybe there is some kind of awesome advocacy position for me in working with Epilepsy! The natural progression of my life's passions?
 
MuayThaiFighter said:
It really isn't fair that the Doctors just leave you to float in the wind. They need to explain things better. Otherwise when my brain is my hazed I tend to think "worse case scenario" and all of this could be avoided for everyone if the doctors just gave patients more info. Whether they are epileptic or not.
Click to expand...

Seriously!! My uncle recently passed away from brain cancer, and even though the presentations are completely different, I see "brain tumor" listed everywhere for adult onset epilepsy, and it just tends to scare the shit out of me. I try to ignore that one, and stick with the symptoms that I notice, and the way my husband describes my seizures.
 
I recently got checked for a tumor, and it would have bitter/sweet either way. One hand, I could have a tumor and that's the cause of my seizures. The other hand, I could not have a tumor and have no clue what's the cause. The latter was the outcome, and while I'm glad I don't need brain surgery, I'm uneasy that I don't know what's up.

As for doctors, there's so many doctors who automatically assume we won't understand, and it creates a gap between us and them. this loose idea of, "Daddy doctor is there to take care of us, and us kids don't need to know the reason, just to do it."
 
chargingbird said:
Seriously!! My uncle recently passed away from brain cancer, and even though the presentations are completely different, I see "brain tumor" listed everywhere for adult onset epilepsy, and it just tends to scare the shit out of me. I try to ignore that one, and stick with the symptoms that I notice, and the way my husband describes my seizures.
Click to expand...

Right! This is why people feel hopeless and try to find justification for theses seizures. Because time and time again Dr.s do not get on the level of their patients. Everyone wants to know what is affecting them, and I think that is a very reasonable request. Yet if you try to express this, Dr.s get very defensive.

So what good is a Dr. that can tell you what you don't have, but cannot alleviate something that is tearing your life to ribbons?
 
Havok said:
I recently got checked for a tumor, and it would have bitter/sweet either way. One hand, I could have a tumor and that's the cause of my seizures. The other hand, I could not have a tumor and have no clue what's the cause. The latter was the outcome, and while I'm glad I don't need brain surgery, I'm uneasy that I don't know what's up.

As for doctors, there's so many doctors who automatically assume we won't understand, and it creates a gap between us and them. this loose idea of, "Daddy doctor is there to take care of us, and us kids don't need to know the reason, just to do it."
Click to expand...

I am happy and sorry...and can completely understand your feelings both ways.

And you're right, and I thought I'd found a doc that was different. He doesn't accept insurance, has very reasonable fees, and even does house calls!! And at first, he listened.

MuayThaiFighter said:
Right! This is why people feel hopeless and try to find justification for theses seizures. Because time and time again Dr.s do not get on the level of their patients. Everyone wants to know what is affecting them, and I think that is a very reasonable request. Yet if you try to express this, Dr.s get very defensive.

So what good is a Dr. that can tell you what you don't have, but cannot alleviate something that is tearing your life to ribbons?
Click to expand...

:flowers: thanks you guys!! I love this place :D
 
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