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Avatar universal

What is this?

A couple of months ago I had a seizure, and ever since then, my head hasn't been the same. I have these strange occurences approximately 1-3 times a week. This week, I didn't have it at all. It's a type of feeling when you cover your ears, which makes the room sound hollow, and all the voices in the room sound loud and jumbled. During this, I have difficulty hearing, and walking. The room becomes quite fuzzy. During the occurences, I used to be able to talk a bit, but now I am hardly able to. After the attacks, the words that come out of my mouth do not make sense. They are slured. I don't understand what I am having. Could I be having a Trensient Ischemic Attack? Could it be a sign of a stroke? I realize that I am very young, and I don't know if TIA or a stroke would apply to me. Could they be just Aura's? Or could they be psycological problems that resulted from the shock of having a seizure? Ever since the seizure occurence, I have been quite nervous, and very figity. I hope you can help me in solving my problem. Thank you in advance:)
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Avatar universal
Your symptoms are worrisome for a certain type of seizure called a complex partial seizure. Although you don't lose consciousness, it becomes impaired and you are unable to communicate effectively throughout the episode. A TIA is also a possibility as is complicated migraine, but these are less likely given the fact you just had a seizure couple months ago. Talk to your neurologist ASAP for appropriate management. An EEG is necessary and you may need an MRI (if one hasn't already done) and adjustment of your seizure medications. Good luck.
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jan
Here are a couple of Yahoo support clubs for epilepsy, if you are interested:

http://groups.yahoo.com/group/epilepsychat/message/3561

http://groups.yahoo.com/group/epilepsysupportgroup/message/5974
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Avatar universal
Thanks for the help, but I don't have epilepsy. I do not take any seizure medication. In my opinion, it is all psycological.
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Avatar universal
Thanks for the help, but I don't have epilepsy. I do not take any seizure medication. In my opinion, it is all psycological.
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Avatar universal
Hi Headproblemz,

I just want to point out that IF (and that's a big if since you'll need to undergo more testing to sort this out -- as the neuro here suggested,) Um...  where was I?  Oh yes, anyway...

If it turns out that you ARE experiencing repeated complex partial seizures, then, by defintion, that would mean that you have epilepsy.  As someone who has epilepsy (mine are simple partial and complex partial seizures) I agree with the doctor that this may very well be what you, too, are experiencing -- especially in light of your previous seizure and the fact that your symtpom profile "fits like a glove" with how a partial seizure would present itself.  

About your nervousness, being fidgity, etc. since having your first seizure:  it's worth mentioning that depending on what part of the brain that one's seizures originate, feelings of anxiety, depression, agitation, (or what have you,) are often associated with epilepsy due to the abnormal electrical activity going on (sometimes fairly chronically and subclinically) in the area of the brain where the problem is.

In addition to the on-line forums that Jan has mentioned, I wanted to mention www.braintalk.org.  If interested, you can go to the Epilepsy section and pick our brains.  (Er... so to speak.)  Or, if you don't want to go so far as to visit an epilepsy forum, know that Braintalk has TONS of forums for just about any neurological condition there is.  So, browse around.  You may get some of your questions answered.  There are even support sections there for emotional problems, etc.  

But, for what it's worth, if I were to put down some cash and place a bet, I'd put all my money that you have a seizure disorder (a.k.a. epilepsy.)  Take care.  I hope you find relief and answers soon.
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Avatar universal
jan
Hi Search,
I have been to brainchat and just recently, too.  It's funny, but I went there and to the 2 forums I mentioned, they were telling me it sounded like seizures. Actually they were saying, it was seizures, I just KNEW I wasn't having seizures, I just wanted to compare notes since dr's were considering that diagnoses. LOL  I have simple and complex partials, too.  After the first complex partial my head was messed up for MONTHS!!!!  It was incompacitating (sp)! Even after the last pronounced simple, (one similar to aura to the complex)my head was messed up for weeks.  How I hate that.
Maybe I will see you in brainchat, Search.

Anyway, good luck headproblemz.
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Avatar universal
Well, hello there, Jan!  Small world, huh?  ;o)  Do you go by the name "Jan" at Braintalk?  I ask because I have a different name I use at Braintalk, but I'm curious if we've posted to each other there before.  Like, maybe I'm the one who insisted that you were having seizures!  LOL

When I was first told that I was having seizures, I, too was a bit skeptical.  I had no idea that seizures could have such different presentations than the more "obvious" generalized seizures.  It wasn't until I found Brainchat 2 years ago that I fully started to understand my diagnosis and how it did truly explain what I had been going through for so many years prior to my diagnosis.

I'm glad you got your diagnosis sorted out, too!  :o)  It helps to know what it is, huh?  

I, too, feel "off" in my head for quite some time after my seizures (and for a day or two before I have one...,) espeicially if I'm going through a stint of having clusters of daily seizures.  The spacy, "off" feeling drastically affects my ability to think clearly and function normally.  So, needless to say, I'm always relieved when the fog clears for a while.  ;o)  And, so, I understand when you say that you hate that feeling!  Me, too!  

Well, take care, Jan.  See you at Brainchat....  um...  but, how will we "recognize" each other?
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Avatar universal
jan
Yes, I go as "jan".  Those chats are painstakingly slow!  I guess that is good for when our heads are a mess. LOL  I tried opening a Yahoo chat in the User rooms, but have no patience and so don't keep the room open long in hopes of others joining. LOL
I will try and visit brainchat a bit more.
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Avatar universal
I do not believe I have a seizure disorder. I don't know what these instances that I am having are. Can one of you please explain in GREAT detail what it feels like when you have these complex partial seizures.
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Avatar universal
BTW. I had an EEG, CT Scan, Blood Test, Complete Cardio tests All normal.
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jan
A simple partial and complex partial seizure is different for everybody because it depends on what part of the brain it effects.  I had 2 completely normal EEG's and one that just showed focal slowing, then my 4th was a 48hr. video/eeg and it showed sharp wave and spike wave activity.  
Check out those groups I listed and see if you can find out more that may help you.
I have had so many different feelings with simple partials, buzzing in head,buzzing with blackness and feeling like I was going to fall or blackout, dizziness and nausea, things seemingly moving closer over and over, a room full of people talking going to a cartoon like chatter and making me dizzy, goosebumps in one limb, etc, etc.
The complex, from what I remember...I had a buzzing feel'g and sound in the rt. side of my head, hallucinated a bee, felt like a darkness was overcoming me and felt fearful. This part I don't remember, but friend witnessed, I was staring ahead and waving my arms over my head as if fighting something off. I felt embarrassed as I came to. That is all I remember now.  It was quite fascinating to be honest.
Hope that helps.
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jan
P.S. An MRI is more helpful in looking for abnormalities.
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Avatar universal
Thanks for the explanation. However, my symptoms are nothing like at all.Cartoonchatter a bit, but not really. I really belive that I am having anxiety attacks. It seems to me that I can control when or when not I will have these so called "attacks". When I don't think about them, I don't have them for the majority of the time.
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Avatar universal
Hi Jan and Headproblemz...

Well, first of all (LOL), Jan, I only use the forums (discussion boards, NOT the chat rooms) at Braintalk, so that would explain why we haven't met yet.  ;)  (And, by the way, yes...  the chats there ARE slow, which is one reason why I don't use them.  LOL)

Headproblemz, sounds like you're having a real tough time with all that is happening to you.  I'm sorry.  I want to be careful to not be somehow insisting that what you're having are seizures, because this is just an on-line discussion of ideas - with people who do not know you and doctors who have not examined you.  So, what I write is not intended to sway you one way or the other in your beliefs, but to help inform you of the possibilities.  

I just wanted to add to Jan's comments that (she's so right) partials can be very different from one person to another.  It all depends on the part of the brain in which they're originating from, how far they spread, etc.  For example, my seizure presentation is very different from Jan's.  I experience only a few of the symptoms that she describes.  

Headproblemz, I don't want to sway you one way or the other (I'm not a Brainchat recruiter!  LOL) but, this CCF board tends to be more of a question/answer type of forum with the doctors, so I try to keep my "chattiness" brief here.  (This is the most I've ever written here.)  Yet, the Brainchat forum is a patient group in which you can freely go on and on and on and on about things....   ;o).  

So, I really do suggest that you bring your questions and observations to the Epilepsy discussion board at Brainchat.  The reason being is that there are hundreds of epilepsy patients there --  so, you if you ask (or do search) about partial seizure symptoms, diagnosis, etc., you're going to get a very wide range of responses from people with all sorts of different experiences (besides just Jan and I! LOL.)  I think this will help you understand seizures better and you will be better able to sort out your options and alternative routes to take in seeking a diagnosis and treatment (whatever your diagnosis may be.)  

I understand that you feel your issue may be a psychological problem.  Something to keep in mind is that some people with epileptic seizures also have what are known as "pseudo-seizures."  (Controversial subject for many!)  But, from what I understand, the incidence of pseudo-seizures is higher in people with epilepsy than in non-epileptics.  In other words, it's possible that you have BOTH a seizure disorder AND stress-induced episodes.    

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Avatar universal
I hope you are still around.

Your description of what you were experiencing sounded very much like transient ischemic attack or stroke related to me.  I would take the CCF docs word and see someone about it.  
THERE HAVE BEEN TIMES WHEN I WAS HAVING A TIA (tiny stroke) or STROKE  WHEN I HAD THE SYMPTOMS YOU HAVE.

I know you don't like the idea of seizures but here are my experiences and you can decide.  
***YOU DO NOT HAVE TO HAVE EPILEPSY TO HAVE SEIZURE ACTIVITY, in a techical sense.****

I have Temporo-Parietal Focal SEIZURES RESULTING FROM A STROKE.
They are sensory, only.  They affect my HEARING and TASTE to the greatest degree.

When they show up - usually the first thing I notice is that it seems like I am talking in an empty room.  There is a hollow sound to it.  My voice sometimes seems quiet but will often seem overly loud.  I can't think of a really good description.  The room quality is like listening into a seashell or walking into a room with no furniture or wall hangings and talking?
They will sometimes make me see things too brightly or as if the objects are far away.
Things taste BAAAAAD.  Very bitter.  Things also smell very bad or sharp.  I will throw out all kinds of food and my husband will think I'm crazy because they don't have a rancid smell to him.

When my medication (Dilantin) is too high or too low, the symptoms come back.  I take this for seizures.  Again, my seizures are not considered epilepsy by the doctors.

If it is seizure activity, you still need to have it attended to.  It is my understanding that if you don't get it treated when the seizure activity area is small, it can spread and you don't want the big ones.

I also don't think that YOU think that it's all in your head.  
Ohhhh, are you thinking that you know the problem is in your head, physically, and not, let's say in your limbs (as you would expect to see from a seizure?  If that is the case, as you can see from my story, the seizure activity results CAN only be in your head.  I have no jerking or spasms.  I do not pass out.

PLEASE GO TO THE DOC and have it checked out.  

They will sometimes run tests that don't show the cause right away and will tell you it is psychological...but it's not...You persevere and get your answers.
I had 3 strokes that they said were not and were.  One of them gave me the seizure activity.
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Avatar universal
Perhaps I didn't mention that I am 18.
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Avatar universal
Ok, that does make it more complicated.  I didn't realize you were so young.  Does it make it harder for you to go to the doctor's or to the hospital?  Are you out of school or do you have to depend on someone to get you there?  I guess those are the logistics of it.

Now, I'll address something that many doctors don't seem to know about and I only found out about it because I had 3 strokes (I was older than you, but...) and they kept telling me it was psychological.  I finally found the cause (and it was NOT psychological).  
There are a couple of blood tests you can take that might track this down.  The one that helped me was called the ACA - the Anticardiolipin test.  If you have high numbers of the IgG or IgM isotopes, you may have something called Antiphospholipid Antibody Syndrome (APS).  Fancy word - it just means that your blood is making clots for reasons it shouldn't.  If you have APS, it can cause stroke type symptoms for even a person as young as yourself.

I don't want to scare you. But if you are having those symptoms, you MUST see a doctor.  Either you should ask him/her or your parent or somebody should ask them to check on APS.  Not all doctors know about it and shrug young people such as yourself off as "not possibly having a ____"  I know, I got that reaction even at the age of 44 when I had my first stroke.  Many young people in their 20s come over to a site I go to (MGH was mentioned by someone above - only I go to the Stroke Board) and say, "What do I do?  I have these symptoms but the doctors say I'm not old enough."  Well, we need to educate the doctor, sometimes.

If you have APS, there is treatment for it.  Not a cure, but a treatment where you might not have any further problems.  But you do have to check it out.  I have paid a heavy price for ignorance (and my doctor's).  The Neurologist was directing you to seek help because it is important.  They don't usually do that.

Keep in touch.  I'm so sorry about how you are feeling.  It IS scary but you had the courage to come here and find this so I know you can go the next step.
kd
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Avatar universal
In my opinion, it is nothing. If I have the power to control when I will get these attacks, then it is not such a big deal. I was only unable to control myself once, and even then I was stressed out and thinking about having an aura.
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Avatar universal
okey dokey ...just realize that you are playing with fire if you are having seizures and don't medicate them; if you are saying words that don't make sense or not understanding words and don't investigate it further; or if you have multiple seizure episodes in a row.
I wouldn't make an issue of it but I've, as they say, been there, done that and the outcome has not been good.
Hope you don't have any more events.
Have a healthier day!  :)
Over and out.
kd
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Avatar universal
Headproblemz... um..  

You're the one who posted the question, so I would assume that (at some level) you feel it is worth discussing.  All I have to say is that whatever it is that you're experiencing, KD is right:  you're playing with fire if you let seizures go unmedicated.  

I was misdiagnosed for years as my symptoms being "psychologically based."  Like you, I was only 18 at the time and ended up in a psyche ward, being given strong meds which only made me worse since the real problems (seizures) was not being addressed.  (There are many antipsychotic, antidepressants, etc. which can actually lower the seizure threshold, so in an attempt to treat me for my supposed "mental health issue" they were making me sicker and sicker, thus resulting in me getting MORE meds for "mental illness," making me even sicker!  A viscious cycle.)

Anyway, whatever you condition may be, it will not get better on it's own, and most likley will get worse.  So, take it from someone who lost most of her late teen years and most of her twenties due to a misdiagnosis:  Don't let it happen to you!  When you hit 30 - and beyond - you'll be mourning the loss of those years.  

Good luck......
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Avatar universal
P.S.  Hi KD!  I recognize you from MGH.  ;o)  (I'd rather not say what my nickname is there, but "hi" to you, just the same.)
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Avatar universal
I only had one Grand Mal Seizure. Everyone is different. If you have a seizure, there is a 70% chance you'll never get one again in your life. These little episodes I'm having can very well be psycological because of the shock I had in getting a seizure for the first time. This is very likely the case. Unlike most of you, I can control these attacks. I was only unable to control it once. On 3 of these "attack" occasions, my voice was slured and I was unable to speak properly for around 10-15 seconds. I really do not believe that that is a sign of me having a seizure.
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Avatar universal
I only had one Grand Mal Seizure. Everyone is different. If you have a seizure, there is a 70% chance you'll never get one again in your life. These little episodes I'm having can very well be psycological because of the shock I had in getting a seizure for the first time. This is very likely the case. Unlike most of you, I can control these attacks. I was only unable to control it once. On 3 of these "attack" occasions, my voice was slured and I was unable to speak properly for around 10-15 seconds. I really do not believe that that is a sign of me having a seizure.
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Avatar universal
I give up, I'm back but will be gone after this.
Headproblemz,
Yow wrote with a problem and the doctor answered it.  In that section, you said you had a seizure but were concerned about these speech things that came with it.  
Doc says get it checked out.  
Some of us who have experienced similar things tried to give you some support and additional information.  
The thing is, in my opinion, you do not want it.  You want to convince yourself that you can control these things.  Well, you CANNOT control a TIA or a stroke.  A TIA may only be seconds long.  IF your speech difficulty was a TIA, you may have seemed like you could control it because it was short.  That doesn't mean it was something within your control.  It was just short. You were lucky.
If you have had a grand mal seizure, it doesn't mean you can't have other kinds of seizures.  My 3rd stroke was diagnosed after the seizure activity that resulted from it.  Sometimes vascular incidents and neural impulse incidents coincide.
I repeat, I think you are playing with fire.  But, maybe not.  You are the one who has to live her life.  
I hope you have a good one.
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