Shocked and scared.

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Shocked

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I cannot believe I really got the phone call from my nurse today that my EEG results were abnormal. I have had a ct scan of the brain, mri of brain and neck, EKG, echocardiogram and they all came back normal I thought was in the clear. I fact, I almost cancelled my EEG last week, because I thought it would be a waste of time.

Well, today at 3:30 I got the call that my eeg was abnormal. All she was able to tell me was that it showed epileptiform activity. Nothing else. I am meeting with the neurologist on Monday. I literally have no idea what this means.

I have not witnessed any seizures. Nor has my husband and family. I have had a big work up this year because of headaches, feeling "out of it", confused, dizzy, panicky and having random anxiety issues. I chalked it up to early menopause. Apparently not.

The uncertainty is killing me. Going to be a long, miserable weekend. If anyone has any input, etc I would love to have some support.

Thanks!
 
Oh I'm so sorry. : ( Hopefully its just some small ones......: /
I used to have some 5-17 second ones that would only show up on video.
lucky that you didnt cancel it!
 
Hi, shocked.

When I was diagnosed, it was similar. Abnormalities on the EEG, but everything else was normal. If a seizure wasn't noticed by someone, it would have continued until something bad happened.

I know it is not the easiest thing to think about or hear, but life will go on. It will be tough and confusing, but you'll get through it and life will go on. Remember to ask any questions you have here, because there will be many that can relate.
 
When you get a diagnosis it can seem as though something dramatic has changed in your life. Remember, though, that you have already experienced a life with whatever it is they tell you you have--the diagnosis is nothing more than a new understanding of what you've already gone through. It doesn't give you a new illness. Nothing about YOU has changed.

I'm not saying this because getting a diagnosis is easy. It feels earth shattering and all that fear and shock is appropriate. So I'm not saying this with the thought that it will make the diagnosis easy to hear, or easy to come to terms with. I'm just hoping that you'll see a different angle for a moment, and that that will make it just a tiny bit easier to cope with.
 
What are the next steps?

I want to prepare myself. What am I in for when I meet with the neuro on Monday? More tests? Medication start up? What kind. Can I drive ? I have 2 small children that depend on me. I am so scared
 
It's kind of tough to tell. You've been given a rather thorough workup, so I'd guess they wouldn't do any more tests. At this point, and I can only guess, they would probably start treating you with meds, but I don't know whether they're saying you have epilepsy or whether there's another problem. So I'm as much in the dark about it as you are. I'd also hazard a guess that since you're not losing consciousness, you wouldn't be barred from driving. Just remember that you've had all these tests because your doctors want to make you better. Even though it feels scary, a diagnosis is usually a step towards feeling better than you did before.
 
Also, when you find out you have a chronic condition, there is a grieving process that you go through, where you come to terms with what you imagined your life would be like. You might have thought your symptoms were temporary, or that they weren't serious. Now you're finding out that isn't the case. In the situation you're in now, there are a lot of feelings running around but it's hard to know where to direct them because everything feels so chaotic. It helped me to stay aware that those feelings were grief.
 
You are so amazing to walk me through this. Thank you. Monday can't come solo enough. I need more answers. Aside from seizures and epilepsy what else could it be?
 
I'm afraid I have no idea at all. I'm not sure if epileptiform activity always means epilepsy or if it can also mean something else. I do know that there are neurologists who specialise in headaches so presumably they can also have a neurological cause. That doesn't explain the rest of your symptoms...migraines are neurological. I wish I could tell you more about this but really, I'm just grasping at straws.
 
shocked and scared maybe your eeg told the doc were your sz's were coming from.
In my last EEG my sz's were so deep in the brain they didn't know were.

I do hope you get all your questions answered Monday.
 
One thing you can do to understand everything better is to get a copy of your medical records. There's a report that goes along with each test, and you can read them. Some of it might sound like gobbledygook, but you can still learn a lot. For example, the EEG report will tell you where the activity is. Then you can look it up and see what that part of the brain does. The records will also tell you stuff your doctor didn't tell you. Mostly you will be better informed, and better able to ask questions.
 
Thanks everyone. You all have been wonderful. Tomorrow can't come soon enough. I have been researching and researching but without truly knowing what was seen on my eeg, besides epileptiform activity. I don't recall ever having a seizure, convulsion, loss of consciousness, etc. So, I am trying hard not to worry too much. After all I have had normal MRI and CT Scan of head/brain. If I have a form of epilepsy (which I am sure I do based on epileptiform activity on eeg) I know it is treatable. I a ready.
Just Hoping it isn't something other than that.
Thanks again!
 
shocked,
to have a seizure it doesn't have to be convulsions and you don't always remember your seizure either, convulsion are just one kind of seizure you can have.:twocents::e:
 
Thanks. Just wondering if mine are simple partial/complex partial/ temporal lobe, etc.
Not that it really matters, I guess. I just want to make sure I treat them effectively with meds, etc, so as to do everything possible to avoid making it worse. Cross your fingers for me
 
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