A lil scared

Hello all, I am hoping that someone can help me. I was diagnosed with seizures about a year ago, Mri did not show anything abnormal but  my symtoms were related to having seizures  a nuro and my primary both said that they think I am having them, My symtoms were weird smells and nausa and I would space out  I cant call it a black out because I was consious just non resposive, My doctors put me on Neuoton ( spelling?) about 9 months ago and I have been doing well untill recently, I have this new thing where my whole body will jerk violently, I am coherant when this happens and it will jerk so violently that It will nearly through me off the sofa if I am lying down, I was recently diagnosed with Lupus and my rhumy says thats not related, I am going in for a physical in Oct. and I am going to bring it up to my Doctor. just wanted to get you're thoughts, its a lil scarey.

Thanks!

Kat10

Hello Kat10

*hugs* I understand how you feel. I'm 20 years old, and as far as I know, I've never had a seizure in my life. Then last month I "wake up" in ER. I started asking what was going on and people were giving me weird looks and told me that I had just been talking to them for the past 30 minutes. It turned out, I had a seizure at my brother's house and they called 911 (my whole body was seizing and I was having trouble breathing for about 2 minutes). Right afterward, I was confused, but conscious. When the ambulance came, I was talking to them like normal, and they said all that was wrong with me was I was tachycardic (my pulse was 180 something). They brought me into the hospital, and I guess it was about a half hour later that I actually became aware of things, because I have no memory of that entire incident (that was all told to me by family and doctors). It was extremely scary to wake up in the ER and not know what's going on. And in my case, the doctors didn't believe I had had a seizure (they were being rude to my family and saying things like "most people don't know what a real seizure looks like") then awhile later I had another one in front of them, so they said it definitely was a seizure (again, I was awake afterwards, but I didn't really become aware until 20-30 minutes later).

I can't give advice on what to do, because I'm still trying to find out what's wrong with me, but I can relate and tell you that you're not alone. You said you've had an MRI, was it regular and with contrast, or just regular? If you didn't have if with contrast, you may want to, it couldn't hurt. Also, have you had and EEGs?


~Liz

kat10

I get an "aura" before a seizure comes. This is a warning for me that a seizure is comming.
Some ppl just have an aura and no seizure. If you are on meds and just have auras, that's usually a sign that the meds are working and preventing a full blown seizure from happening.

An "aura" can come in many forms such as light headedness or as in my case:

Sometimes I'll be in the middle of reading something or writting and all of a sudden, all the words will become garbled or if someone is speaking to me, I'll "freeze" I know what's going on but I can't respond.


I also get this thing (daily) where I find it very difficult to form my words when I speak, it seems to get more frequent as I get older. Other people don't even have to think about foming their words b/c it comes naturally, but for me, I have to concentrate on the formation of every word, even the simple ones. If I don't, I slurr my speach and everybody thinks I'm drunk or totally spaced out.

My Neorologist calls this a "speech arrest"

You really take your speach for granted.

This is a side affect from the meds but if I don't take my meds, I risk a seizure. Usually by the time I figure out what word to use and form it, everybody else in the room is on the next subject.

It can be very frustrating and/or embarassing. (especially in my case because I was an Administrative supervisor and had to deal with my staff)

Maureen ~ all ppl with EP have different types of auras.

I don't believe there is any way to prevent an aura.

Re: your MRI ~ it is not uncommon for your MRI to not show anything.
The seizure activity could be located DEEP in the brain and an MRI may not pick it up.
You may need other tests as well.


Randy

Hello Kat10,

I know what you mean. When you're already used to one form of seizures, when it changes, it is really scary. Usually I have no aura or any clue when I'm about to seize, but when I was in the hospital (hours after the first seizure) my legs started twitching a lot, and then I went into a seizure. Last week, I was standing at my kitchen sink getting some water when my legs started twitching really bad, I thought that I might have a seizure, so to be safe I tried to move to the couch to sit or lay down. I lifted one leg up to walk and then it was like my legs were paralyzed....I couldn't move any further. Realizing this was bad, I pretty much had to used my arm muscles on the counter to lower myself to the floor...the next thing I know, my grandfather (who lives with us) was waking me up and asking if I was okay. And because his health isn't too well, I didn't want to scare him, so I tried to act normal and I was "Yeah, I'm fine, I just got really tired." And I tried to get up to go to my bedroom and realized that my legs weren't working right....it was like my weight was too much for them to hold (I've described it as a newborn colt trying to walk for the first time, stumbling around and falling all the time). It really scared me, I've been limping ever since then (my legs are just finally starting to feel stronger, but it almost feels like I'm a lazy person who hasn't exercised in 5 years and suddenly decided to run 10 miles without stopping).

I understand how scared you are Kat, I'm right there with you. I hope everything goes alright with the neuro and you find out what's wrong (and don't get hurt in the meantime).

Best wishes,
~Liz

Hey Kat,

You're right, I was terrified. Every seizure causes me to become more fearful of everything because I'm starting to see everything as a danger. (I can't take a bath, because I could drown if I had a seizure there, I have to avoid stairs as much as possible, I'm afraid to cook, which is something I love, and I try to avoid crowds because I don't want people staring at me, or being afraid so I have to be on an anti-anxiety medication every day). The specialist I'm seeing has me on topomax, but it doesn't seem to be helping and I don't see her again until December.

I know what you mean about it being nice knowing that you're not the only one going through all of this. Even though you wish no one would ever have to experience that feeling, it helps knowing that you're not alone and that there are others that can understand what you are going through. Sometimes it's nice to talk to other people that understand (that's why I joined this forum, I was originally just on the migraine one).

My parents and brother and sister support me, because they have all seen it (and so has an ER doctor who said it was definitely a seizure), so they support me as much as they can, but like you said, they don't seem to understand how much a seizure affects you. They don't know why all I want to do is sleep all day afterwards and why I get really emotional. And then my extended family either thinks I'm faking it for attention, or that I'm overdosing on pain medications or weight loss pills (I take pain meds maybe once a day, and never more than the recommended dose, and I don't take weight loss pills, I just started losing weight because I started eating healthier). So that hurts so much, even though I know they are wrong, it hurts knowing that they would rather think that I'm the cause of this rather than be concerned, so I completely understand what you're going through with your family.

I'm so glad I decided to check out the seizure forum on this website...this website has helped me through so much with my migraines, and now talking to other people with seizures is very helpful. I don't feel so alone anymore.

I just went to a massage therapist who said that my neck muscles are extremely tight and it's cutting off oxygen supply to my brain, which could be causing the seizures (and he really seems to believe that, because he's willing to see me at a discount price, and every other visit is free. He said if he thinks there's something that he can fix that will keep me from having seizures, he's not going to let something like a lack of money stand in the way). If it works, maybe you could look into it....can't hurt, right?

I hope all is going well for you,
~Liz

Well I wen to see my neuro and he said  Iam suffering from temporal lobe epilepsy, he put me on Keppra, hopefully that will control the seizures. I aslo hav an eeg scheduled in november, with me luck that these meds work!

Kat10

Wishing you all the best! Kat I have right temporal lobe epilepsy, but thankfully it has been under control with brain surgery to remove scare tissue and I'm still taking lamictal. It's been a long journey and I've learned alot about myself through it all. My problem is chronic migraines now. Just got out of the hospital (UVA in Charlottesvill VA) I went through a iv treatment called DHE...well it worked for about 5 days now I'm back to where I started. Live can be frustrating, but God is good!!

My prayers go out to you both!

Mercyme

Hello Gr33nrose, Seizures can be a very scary thing, and I am no expert but have been told by my nuro that the Auras can change, my auras started out with weird smells I would smell something and then get dizzy and it would happen ( felt kinda like head floating dizzy) and then the last couple seizures I had no weird smells but my body started to twitch and jerk. the only thing I can offer that has helped me is to keep a journal and write in it every time you have a seizure and what you felt like befor it, strange smells, voices, body twitches, what ever it may be or even it if dosent seem relevant because it will help you know and be more aware when you are about to have one. And do you have a Neurologist? If you dont I would get in to see one, Good luck too you. You in my prayers.

Kat

   Hello Gr33nrose, please  let me know how you appt went? hope all goes well, and the journal really dose help, good luck to you, You are in my thoughts, keep strong!

Kat