There is something abnormal about my brain but they don't know what!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

W

Wobblez

New
Messages
655
Reaction score
0
Points
0
So as an off shoot to my current thread, the neuro said they can see definite abnormal activity on my EEG (I'm currently on day 5 of a 2 week in hospital EEG monitoring) but he doesn't think its of an epileptic nature. The abnormalities didn't show up during the seizure activity, but they did show up during a small fleeting feeling in which I reported feeling spaced out and vague.

The neurologist who is treating me recognizes my seizures as something legitimate, but he said that generally epileptic seizures have a clear beginning and an ending, whereas I describe the gradual build up and feel like they come in waves. Isn't it common for seizures to cluster? And we all talk about the "build up" ? I struggle with the phrase "Its not typical of epilepsy". I'm here to get an accurate diagnosis, whatever it is, so I'm not upset that he's reluctant to class this as epilepsy (or at least in isolation of a secondary problem) but I did think my seizures were pretty typical. And if its not epilepsy, what is it? This bit is a little scary, i think epilepsy feels "safe" because I know what I'm up against. I have you guys! I don't know of a support group for "abnormal brain activity of some description". I hope i get some answers before I leave. If I don't, I'll feel more unsettled than before I came in! Nakamova, i'm keenly awaiting your knowledgeable response =) xxx
 
Just had a one minute partial. i rang the bell then couldn't talk for about 30 seconds. That was witnessed and recorded by the nurses so lets hope the EEG caught it.
 
I'm going to give my 2 cents about these tests and take it with a grain of salt. I find that when a Neuro says, "its not typical of epilepsy" that is a really shitty cop out. It reminded me of my situation. I had my seizures under control, just dealing with the, "what is wrong with me." Any human wants answers and most importantly results.

I heard the same stuff in my EEG. And the truth is they really don't know or they would be far more definite. All anyone has to do is read the countless posts from people on CWE to figure that things aren't "easy" with E. They do and can cluster. The epilepsy foundation has tons of info in regards to auras/simple partials.

I mean I have to wonder why neurology has such conflicting info. I figure if something came up on the EEG don't walk out of that test without your Dr. actually explaining what it was.

I'm sorry things haven't come out crystal clear yet and I hope that they can just find a "typical seizure". I really with they had better tact with people, instead of making patients confused or worried.

Wishing you the best Wobblez.
 
Hey MTF,


I can totally relate. I was listening to myself tell the doctor what I experience, and I felt like I was a criminal trying to defend myself! Like I had to state my case! And he is very approachable and kind, yet it still feels like we have to try so hard to "convince" doctors of what we feel.

I've just pressed the seizure button 3 times in the past 15 minutes because i'm getting strong sensations that they want to mark on the EEG. The nurses are great but i still feel guilty haha.

I actually respect the doctor for admitting he doesn't know what it is. I just hope he does by the time I am discharged.
 
I am so sorry that you have to deal with this. I had the same issue when I was in for my week long EEG. The floating doc came in and said "It appears that you have had a 'spell' of some type, while we caught it on tape, it did not show up on the read out" What is that supposed to mean? I had never seen this guy before, so I really didn't care what he had to say. My doc came in later and said that she studied the read out and definately saw seizure activity. Then another time I was feeling okay and the nurse came running in to see if I was alright. I said yeah and she told me that my read out had spiked. The whole thing is very stressful. Sounds like you are taking this all very well. I just wish that neurology was more set in stone. Since everyone's brain works differently, it is so hard to pin point some of these activities. Hang in there! Big (((HUGS)))
 
The EEG is so unreliable that it floors me with all of this technology they haven't invented something better. I agree with MTF its a cop out by the neurolgist. Remember Qtown and I had a very heated discussion about this! only you know how they feel. Don't let him walk in and say well they must be pseudo because they are not like they were taught they are supposed to be.
Sorry Wobblez This subject kinda gets my knickers in a twitt:) I hope the partial you had shows

Good luck,
 
Hi guys,

Sorry if i've given you all the wrong impression, but I don't think the doctor necessarily thinks they are pseudos, he just doesn't necessarily think they are epilepsy related either. He said he's staying open minded to all possibilities so I guess that's a good thing. It is a long frustrating journey though, regardless!

Huskymom, what was the story with the spike that you didn't even feel? That seems so illogical doesn't it!??
 
What bothers me is what COULD be wrong with me. Brain abnormalities other than epilepsy cause me fear of the unknown...
 
I find that when a neurologist says, "its not typical of epilepsy" that is a really shitty cop out.
Click to expand...
I agree with MTF. Epilepsy is such a loose term for such a broad category of experiences and prognoses, that looking for what's "typical" has its limits as a diagnostic tool. The lazy/inexperienced/incompetent neurologist may rely on a small number of markers to make the diagnosis, but the skilled neurologist shouldn't be automatically dismissive of symptoms that don't fit his/her narrow definition.

I found a recent study (2011) which notes that "a clear classification of partial seizures onset features is not yet established." In other words, a clear beginning and ending point would be helpful, but no, it is not definitive of partial seizures. In addition, I would think that it's very possible that seizures resulting from abrupt cessation of meds might have different patterns than in other circumstances, due to the brain's struggle to respond and re-establish equilibrium with the various levels of neurotransmitters.
 
BTW -- complex partial seizures are more likely to have a gradual onset and a gradual ending, so what's "typical" for simple partials or tonic-clonics, may not be typical for CPs.
 
Nakamova said:
I agree with MTF. Epilepsy is such a loose term for such a broad category of experiences and prognoses, that looking for what's "typical" has its limits as a diagnostic tool. The lazy/inexperienced/incompetent neurologist may rely on a small number of markers to make the diagnosis, but the skilled neurologist shouldn't be automatically dismissive of symptoms that don't fit his/her narrow definition.

I found a recent study (2011) which notes that "a clear classification of partial seizures onset features is not yet established." In other words, a clear beginning and ending point would be helpful, but no, it is not definitive of partial seizures. In addition, I would think that it's very possible that seizures resulting from abrupt cessation of meds might have different patterns than in other circumstances, due to the brain's struggle to respond and re-establish equilibrium with the various levels of neurotransmitters.
Click to expand...

:agree: Over the years, my docs have labeled me as a "challenging patient" because I didn't fit in with the "typical" diagnostic tools. I've had SP, CP and TC seizures, so having a mixture of seizures makes it more difficult to diagnose.
 
Thanks everyone, i agree with you all. I don't see why i have to be "typical" either because from my experience, everyone is different. I am really looking forward to hearing what the doc says when he comes in to discuss the last 24 hours worth of button presses. The latest occurences have been different to what I experience when I'm on medication. It starts with a sudden headache on back and left hand side of my head that radiates up and down my neck and my head. I feel like I'm hungry, like my tummy is rumbling, and then i get a hot rising sensation and my chest feels tight. Then i get the metallic taste and i feel really spacey, like I'm not quite with it. Everything feels like hard work and sometimes i can't find my words. I get flushed and my lips tingle. Sometimes my right arm aches, which is a very normal thing for me when I have seizures. This may last a minute or two but it ebbs and flows, and its hard to know when its completely finished because it comes and goes. I've been feeling like this all morning.

Last night it was more severe, and I couldn't talk or i'd get "stuck" and I couldn't respond. My friends were with me and i had to work hard to keep my eyes open. I wasn't tired as such, I was just battling whatever was happening. I'd get half way through listening to someone speak, and by the time they'd finished, i'd forgotten what they had started with so I couldn't piece it all together. I'm praying we get somewhere...
 
Everyone is different, and I would make sure you let the Dr.s know whatever you feel. The more info will help them to piece things together. I felt the same way in my EEG, it was hellish to say the least. That rise and fall feeling, ugh not a fun time.

So you have my thoughts and best regards and i'm sure they are going to get you some clear answers.

Here is a corny joke that has some Australian flavor. Maybe it'll cheer you up a bit.

What do you call a boomerang that doesn't come back...

A stick!
 
LOL MTF that is terrible!! Ok, here's an aussie slang exam for you...tell me what this means...

"Geez, she's got a few kangaroos loose in her top paddock!"
or
"I'm flat out like a lizard drinking mate!"
 
Depending on where someone comes from in Australia I can't understand their slang haha.

I honestly don't know, most of what I learned was from Chopper Read, I assume he's a Australian comedian. Pretty funny stuff.

Does flat out like a lizard drinking mean, really wasted? Thats my guess!
 
MuayThaiFighter said:
Depending on where someone comes from in Australia I can't understand their slang haha.

I honestly don't know, most of what I learned was from Chopper Read, I assume he's a Australian comedian. Pretty funny stuff.
Click to expand...
LOL Muay,
Mark 'Chopper' Read is an Aussie criminal but there was a movie made about him.
http://en.wikipedia.org/wiki/Chopper_Read

MuayThaiFighter said:
Does flat out like a lizard drinking mean, really wasted? Thats my guess!
Click to expand...
LMAO Flat out like a lizard drinking is an Aussie saying for when you are really busy.
Heres a good site with some of the Aussie slang words http://www.koalanet.com.au/australian-slang.html#G
 
Last edited:
MTF here are some of Chopper Read's clips. [ame="http://www.google.com.au/search?q=chopper+read+youtube&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a"]chopper read youtube - Google Search[/ame]

CQ, you're not supposed to tell him all the answers!!
 
What?! haha I was way off.

I just burst out laughing when I realized chopper read was a real person, no clue. Not many Americans have heard of the sketch comedy. I was just shown this by a friend and figured you might know it. I need to harden the $%#! up obviously. (only the Aussies are going to understand that)
 
You must log in or register to reply here.
Back
Top Bottom