New, scared, confused...

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!

T

tbrosa66

New
Messages
9
Reaction score
0
Points
0
I had a grand mal seizure in September, 2008 due to a forced pain medicine overdose by my then husband. Since then I had what I call "glitches" every now and then, but this has changed in the last 6 months or so. Daily now, I wake with my jaw, not teeth clenching, but feeling stiff, to the point that I have to mentally make myself relax it, this goes on throughout the day. Also, while watching tv or whatever, I will look down and my hands and fingers will be stiff, to where I usually tuck my thumbs and make a fist so it will stop, also throughout the day. I sometimes smell things that aren't there, like strong odor of canteloupe, when there is none. I stumble over my words a few times a week, like I just can't say what I am thinking, I have short term memory, like I will turn off the coffee maker and a few minutes later cannot remember if it is on or off. When I go to bed at night, I will notice my body is stiffening and my head is no longer on the pillow, so I mentally make my head go back on the pillow and relax my body.
I am scared...is all of this from that seizure? Are these seizures? What should I do?
 
I'm sorry this is all going in with you. =( What a dreadful thing to go through with your ex--that is awful. =(

I think you should call your doctor and ask them what they think. Do you feel like you are able to control the episode once you are aware of it? I have partial seizures that I am awake for, but I have no control over them when they happen. They just happen and stop on their own.

Do the episodes seem to be triggered by anything?

I would write down when/where they happen and keep a detailed journal about any activities you were doing at the time, foods you ate, etc. When you visit the doctor, you can present this information to them.
 
I saw my doctor a couple months ago, and I asked her about the "glitches", she said they sounded like partial seizures and she wants to send me to a neurologist? I go see her again this coming Monday, so I guess I am getting scared. I always thought they were just something I had to deal with and that was that. I never know when it's gonna happen, no triggers that I know of. They last about 20 to 40 seconds, when I notice them I just mentally make myself try to relax whatever body part it is; hands, jaw, body.
 
Have you set up an appointment with the neurologist? I think you should definitely go and have some testing done--especially since your doctor recommends it. If they are seizures and the medication is helpful, it would be nice to not have to deal with them anymore, right? =) I hope they are able to find out what's going on. It's always nerve wracking when something is happening in your health and you don't know why. =( *hugs*
 
Hi tbrosa66, welcome to CWE!

Don't be scared about seeing the neurologist -- the idea is to find out what's happening, and make it stop, right? Your doctor and neurologist will help.

As jemsister says, it's a good idea to write down everything you can think of about your symptoms. Make a note of when they started, how many times a day they occur, how long they last, if they are changing over time (becoming more frequent, or taking a different form). This information will help the doctors, and may also reveal any patterns or triggers. The #1 trigger is fatigue, but they can take a wide variety of forms -- things like low blood sugar, food sensitivities, flashing lights, fluctuating hormones, infections -- anything that might stress your brain and body.

In the meantime, you might try taking a magnesium supplement. Magnesium plays a role in brain health, and can also help with muscle tensions throughout the body -- muscle spasms, stiffness, twitching, and even high blood pressure (heart muscle).

Best,
Nakamova
 
Hi nice to meet you,

I can not say if these are seizures are not. I know my are diff. from what you described. I do hope you will go to the Neur. and like the others before me mention--Keep a diary this will help both you and your dr.
 
Thank you all for the comments. I go to see my doctor on Monday, December 3rd and she's going to send me to a neurologist to check into my "glitches". It will be hard to keep a journal of when they happen, like when I am watching tv, I will just happen to look down and my hand is stiff, so I tuck my thumb so it cant do it. Also when watching tv, sometimes my whole body stiffens and I become aware of it cuz my back is no longer against the back of the couch, so I just push myself back. I don't know...I just want them to go away.
 
when you see your neurologist, please don't be afraid/nervous to question and it doesn't help to do a little background research on epilepsy [which I am sure you already have]--my first neurologist wasn't very good and i never really challenged/questioned anything he said b/c i was very scared [i was in college at at that time] and wanted it all to go away. as a result, i was put through a few meds that had bad side effects and left me forgetting most of college--always ask about side effects--. stay strong though, i don't want this to frighten you, and be positive!!
 
also, i sometimes smell weird things, and see little dots [which i have to kind of focus in order to make them go away] and i know what you mean about concentrating to make things go away--i have to do that sometimes with auras or when i get dizzy. unfortunately, i don't have the same body stiffness but everyone seems to have different signs. hope it all works out for you :)
 
I've had these "glitches" since early 2009, they started out so far apart I didn't really failed to notice them. But they are daily now. I really didn't think anything of them until the doctor said they could be partial seizures...then I got scared. But I will ask alot of questions n I am worried about side effects of medicine. In fact I had decided not to even go to a neurologist because of that fear. I figured I've been dealing with them this long so it didn't matter. But the other morning I woke up and I could not get my jaw to stop stiffening and it hurt so much all I could do was cry, so I decided to see a doctor to see if there was help.
 
And then there are those moments that I cant get my words right, like my first sentence above. When speaking, it gets worse, sometimes i try to say something and it just wont come out, I feel kind of a tightening in my head and have to pause to say what I was trying to say. I too smell weird things that aren't there...canteloupe, burnt wood, whiskey; it all smells like it is right under my nose, but it isn't. Also, I get tingling in my fingertips that hurts like hell, body stiffening, as well as jaw and hands. The scariest is when I forget what I am doing and cant remember how to do what I was doing.Does that make sense? Example: I was at work last season, inspecting books, a job I could do in my sleep, and suddenly I looked at the book and had no clue what I was supposed to do, I got so freaked out I ended up outside crying. Yea...I want this all to go away.
 
I guess it's almost always a question of choosing between seizures and side effects. For me, the side effects are very tolerable. Not everyone has bad experiences on the meds. You could try them (if the neurologist thinks it's a good idea), and if they don't work for you in one way or another you could always taper off, try something else, or stay med-free.
 
I just wanted to thank you all for taking the time to respond to me. I have no one to talk to about this, as my friends and family act like Im making it all up. when I stumble over my words and stuff, they laugh and usually I cry because they think Im just stupid or something, but I know it is my "glitch" because of the way it feels. So thank you all very much.
 
Because of the frequency of the "glitches" now, I am open to trying whatever the doctor may recommend, even meds. I just want it gone, if possible.
 
The "brain skips" are no fun, I know. And they are scary. I hope the doc can help -- perhaps he can help explain to your "friends" and family what's going on when your brain is misfiring. Good luck, let us know how things go.
 
Well I'm not sure how soon my appointment with the neurologist will be. I see my doc on Monday n she has to get me a referral to go see one. But for now, talking to you guys has helped ease my fears...I guess I don't feel so alone with this now. Thanks. I'll let you know how it goes.
 
Hey...I understand what you are going through...I’ve often have periods where it feels like some just shut off my brain. Doesn't matter if I’m speaking, reading, working or even just playing on the internet...I experience instances where it's like someone just flipped the switch and all information just stops and I’m just sitting there like "Uh......." Talking to my wife I explained it to here as if sometimes it's like my brain is a hard drive...when my brain is overworking, times when I have a million things running through my head it's like it freezes up, shuts down and reboots like I have Windows Vista in my head. I hope everything works out for you...I myself am just now really getting to know my condition as well since I was so young when I was diagnosed.
 
tbrosa66 said:
Example: I was at work last season, inspecting books, a job I could do in my sleep, and suddenly I looked at the book and had no clue what I was supposed to do, I got so freaked out I ended up outside crying. Yea...I want this all to go away.
Click to expand...

This same sort of thing happened to my cousin when she first started having seizures. She is well controlled now on medication. =) I hope they can get you in to see the neurologist quickly! Big hugs for you. =)
 
I'm so sorry, but don't be scared! I hate going to see doctors (I realize it's irrational and they have saved my life, but I hate appointments nonetheless), so I feel you when you say you're scared and are hesitant to go. But you'll feel so much better afterwards! I'm sorry about your friends and family...my family used to joke about it, thinking it would lighten the mood, but I had a sit down chat and they refrain from it now. Give them a swift kick to the shin :) haha jokes jokes. I am sorry, but you have people here now you can trust and vent to, so I hope we can help! Good luck with your appt! I hope our feedback helps and makes you feel more comfortable!
 
You must log in or register to reply here.
Back
Top Bottom