Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
AusSue
Hi I am new to this. I have quite a few other diseases/conditions & now it looks like I may have seizures/epilepsy. For about the last 12 months I have been having "blank outs" where I just stop what I am doing & stare vacantly. I get a jolt/shake feeling through my body & then confused about where I am or what I am doing. I have told Dr's & they have not seemed concerned & don't investigate it.
I also do things like I just typed up this with details, didn't click submit & then must have clicked x to close without saving. Hubby said I looked like I had fallen asleep.
Anyway I was ignoring these blank outs as Dr's didn't seem concerned & too much else going on health wise ESP with ms.
Wednesday I was at work & had the worst one ever. I had felt a bit out of it before lunch but after I ate felt fine. I remember about 2pm thinking I am going to take a break soon & get a drink etc. Next thing was a colleague came up to me & started talking, I could hear the voice, see she was talking but not understand anything. I suddenly jerked a lot & asked what she wanted. She said I had been staring at computer then her. She takes over from me when I finish as I am part time & she works the days I don't so we usually tell each other what we are up to workload, I looked at the work on my desk & some was face up, some face down & out of order, on the screen some had been completed & some hadn't. I was totally confused, didn't know what I had done & hadn't. I almost cried. It was 3pm which is my finish time & I don't know where that time went or what I did, It was a very scary feeling.
When I went to stand up I felt like I was out of my body or out of control of it. I struggled to walk as my legs would not move when I told them to. I thought that was ms but I still couldn't put two thoughts together or make sense when I spoke. That night I could not stay awake & kept dozing off all the time. I was totally exhausted.
The next day I got up & it took me forever to get organised to go to physio, I got there & was ok, it is a group for people with ms. We have coffee after in the coffee shop & I was talking to a couple of them about the previous day & they said it sounds like epilepsy. My foot/leg/arm/hands also jerk, numb etc which I thought was ms. One of them has epilepsy & said it is the same as what happens to her. Later as I was chatting to one of the others I (apparently stared blank, ) at her, then I shook myself & went to continue our conversation form a few minutes before. She stopped me & told me what had happened, exchanged a look with the girl opposite me who then said I had just had another seizure & told me what I had done.
This is getting very scary as I don't know its happening & get very confused & it is happening more often. I spoke to Dr who was not concerned. I am seeing my neurologist on 22nd so will ask him about them.
I know you aren't Dr's but does this sound like epilepsy to any of you & what should I do when I go to the neurologist, like ask etc.
Any & all help or advice would be appreciated.
Thanks, Sue
I also do things like I just typed up this with details, didn't click submit & then must have clicked x to close without saving. Hubby said I looked like I had fallen asleep.
Anyway I was ignoring these blank outs as Dr's didn't seem concerned & too much else going on health wise ESP with ms.
Wednesday I was at work & had the worst one ever. I had felt a bit out of it before lunch but after I ate felt fine. I remember about 2pm thinking I am going to take a break soon & get a drink etc. Next thing was a colleague came up to me & started talking, I could hear the voice, see she was talking but not understand anything. I suddenly jerked a lot & asked what she wanted. She said I had been staring at computer then her. She takes over from me when I finish as I am part time & she works the days I don't so we usually tell each other what we are up to workload, I looked at the work on my desk & some was face up, some face down & out of order, on the screen some had been completed & some hadn't. I was totally confused, didn't know what I had done & hadn't. I almost cried. It was 3pm which is my finish time & I don't know where that time went or what I did, It was a very scary feeling.
When I went to stand up I felt like I was out of my body or out of control of it. I struggled to walk as my legs would not move when I told them to. I thought that was ms but I still couldn't put two thoughts together or make sense when I spoke. That night I could not stay awake & kept dozing off all the time. I was totally exhausted.
The next day I got up & it took me forever to get organised to go to physio, I got there & was ok, it is a group for people with ms. We have coffee after in the coffee shop & I was talking to a couple of them about the previous day & they said it sounds like epilepsy. My foot/leg/arm/hands also jerk, numb etc which I thought was ms. One of them has epilepsy & said it is the same as what happens to her. Later as I was chatting to one of the others I (apparently stared blank, ) at her, then I shook myself & went to continue our conversation form a few minutes before. She stopped me & told me what had happened, exchanged a look with the girl opposite me who then said I had just had another seizure & told me what I had done.
This is getting very scary as I don't know its happening & get very confused & it is happening more often. I spoke to Dr who was not concerned. I am seeing my neurologist on 22nd so will ask him about them.
I know you aren't Dr's but does this sound like epilepsy to any of you & what should I do when I go to the neurologist, like ask etc.
Any & all help or advice would be appreciated.
Thanks, Sue
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Keep a detailed diary noting when you have the seizures and the form they take. Your Dr will then be able to see any links between them and it may make it easier for him/her to make a diagnosis. Mr seizures are complex partial - different from yours - but it sounds like epilepsy to me. I'm no expert though. Best of luck.
Thank you all so much for opening up to me & helping me know what to do.
Today I gave myself the biggest scare ever (I think). I had gone into the local health centre & got new hearing aids then on to get new glasses.
Somehow when I parked at the back, I reverse in I hit the accelarator instead of brake & went into the back of the building. A lot of damage to the car & also looks like some damage to the building. I was scared & shaking afterwards. I went & got my gllasses & had them fit them (I am going to have to go back as one arm is hurting).
I was ok till I got home & rang hubby & told him. Then I started shaking & crying more (had been since I got home & looked at the car). I rang several friends & got one home who came over & sat with me for a while & made coffee etc.
I am afraid I may have had another blank out as I dont remember how I did that as thought I had parked & then bang very loud. Is it possible that I could have had a small fit of some description?
I am too scared to drive now which is really going to limit me getting about. At least it is only next week I see neurologist.
Thanks for listening.
By the next day my back has been hurting & my left hand is very swollen & painful. Ended up at the hospital yesterday & had hand xray from what they can tell under swelling nothing broken just badly sprained. had to take all my rings off & one got cut off. I put wedding ring back on last night but it was painful this morning so i got it off & put on neck chain. I am wearing a stretch type bandage & splint type protector from hospital. hand has swollen more overnight too.
I dont remember banging hand at all.
Could this have been a blank out/seizure? Should i drive as i am scared of something happening again, what if i hit someone, that would be the worst.
Sorry if I keep asking same/similar but I am scared & dont know who else to ask.
Thanks in advance
He also checked my ms stuff & concerned about right side problems now too.
Thanks for the hints on what to write down.
Hugs to all, Sue
Got a phone call yesterday & my eeg has been moved fwd to this coming Thursday, unheard of that quick, & results 2 weeks later.
I used my scooter to get into where my dr & physio etc are & that will take me about 1sunbhr each waeamy so that is doable insd of driving. Forgot sunburn cream so got burnt arms, will have to get them all out again as it is spring, only 20'c too but sun was nice.
The same happens to me....seizures aren't just the grand mal episodes that I always thought they were.
My heart goes out to you because I know how you feel and I know how people sometimes don't understand.
Hopefully you can find something that works for you.
I had a bad experience with meds so I just deal with the seizures and the confusing moments.
It helps to have support and I'm glad I have it from my family and the few friends I have left.
I'll be thinking about you and I hope everything works out well
*hugs*
Had the eeg & struggled with the lights for sure & could barely open my eyes at the end of the test. Dont know if that means anything or not.
I get the results thurs week so will be glad to know if it shows anything.
Thanks again everyone.
I am new to DS, but, an old 'pro' w/ EP. :) What you have described sounds like 'absence seizures'. Here is a link that describes the various types of szs.
http://www.faqs.org/faqs/medicine/epilepsy-faq/
Questions for DR:
http://www.nomoreseizures.com/
Please educate yourself about Epilepsy & all it's aspects, including treatments & alternative treatments. ie: medications, neurofeedback & diets. There are lots of links posted at WebMD support Group, if you need more. :)
It's good that you do keep a Journal/diary. It is usually the first thing I tell anyone w/ suspected seizure activity. Foods, activities, seizure activity (time of, length of, recovery period) even your mthly., need to be included.
About your EEG. Are you aware that seizure activity MUST be present to show on these tests? If yours comes back 'normal' (from what you said I doubt it will) insist on a 24-48hr portable EEG.
Keep us posted. Know I care. HUGS!
Love Candi
Thanks also about the info on eeg, I didnt know they ger ones if nothing shows. One benefit I have is that he did one a few years ago & it showed nothing so this should show changes (I hope in a way as I want to know what is causing it & how to treat it). It is scarier not knowing.
I do have trust & faith in my neuro as he is thorough & listens. Will keep you updated .
I cant thank you all enough for your help.
Thanks for all your support. I am relieved that it isnt ms but knowing what is wrong.
Please consider getting a second or third or more opinions if your symptoms persist. Insist on a portable 24-48 hr EEG. If those tests come back 'normal' & you STILL have symptoms then seek an epileptologist (seizure specialist), Usually found in the larger hospitals or 'teaching' hospitals.
Honey, I trust my neuro, also. But, ALL my EEG's have been normal, except the last one. Which was the portable.
Love Candi