So Many Questions

[WorriedAlways]

Hello I'm new to this fancy place, I hope you all don't mind if I ask a few questions about my personal experience.. I'm feeling so lost about what happened to me.

I had 1 grand mal seizure (that we know of) when I was 22. The reason I say "we know of" is because around this time I could count maybe 3-4 other episodes where things werent right.. I may have had seizures then but this 1 was the only one that I was found having.

I had the EEG tests, I was told I didnt need an MRI because I looked "normal".? the first eeg test came back with "abnormal activity" so I had another that I was sleep deprived for, also came back with "abnormal activity" (I can find the specifics of the abnormalness if it helps with my questions)

Now where I'm confused.. I got these results in a letter, that simply told me I have "Generalized Epilepsy" and that if I generally take care of myself.. it won't happen again. Thats it. No meds. No info. Nothing. I'm left thinking.. but my results were abnormal? I was very nervous having my tests, the nurse even had to stop and ask if I was really nervous.. could that affect it?

This was over 2 years ago now, no such seizures since (I do get more sleep now, when I had my seizure I was staying up very late.. however I am a bad sleeper, especially because of this) But that doesn't take the fear away. Its the first thing I think of in the morning, last thing I think of at night. 2 years on.

I was thinking maybe if I got some proper information or opinions it could put a bit of closure on this, I know theres always a chance of another.. but I'm not living my life because of this. Thank you for any responses

 

[masterjen]

Hi, and welcome to CWE!
Generally epilepsy is diagnosed after 2 or more unprovoked seizures, so if your doctors are saying you have technically only had one seizure then you do not have epilepsy. An EEG can have "abnormal activity" without the abnormality necessarily being seizure-related, but you need to get clarification on this by speaking with your neurologist. Some neurologists prescribe medication if EEG activity is consistent with seizure activity and the person has had only one seizure; seems to depend in part on the doctor, and what is felt to have triggered the seizure (eg. alcohol, lack of sleep, extreme and unusual stress versus no known trigger). If your doctor feels your condition can be managed without medication, that's great! But, doesn't ease the worrying that's for sure. You may have a reduced seizure threshold, so avoid/minimize potential seizure triggers like lack of sleep, excessive alcohol, caffeine, stress and hopefully you will continue to avoid the need for medication. I would suggest requesting an MRI to rule out any structural issues in the brain that may be causing the abnormal electrical activity.

 

[WorriedAlways]

Thank you for your reply! As far as talking to a neurologist, I never had anyone to speak to after I had my EEGs (maybe this is normal) I think this is what has left me feeling so lost, nothing was explained about the activity they found. I'll look into that. I do wish I had an MRI, if you hadn't noticed I'm a bit of a worrier!

 

[Howll]

It's hard, but I'd try and roll with it for now. I'm still not convinced my seizures are epileptic, since they're so few and far between and I'm not on meds, but the epileptologist seems to think otherwise.
I know how you feel though, I'm constantly thinking about it, every time I leave the house or I'm alone I think all of the "what ifs?" In the book.
I'm trying to tell myself though that it's fine, if it happens it happens, and there are always people around that will and want to help.
It would be good for you to get clarification, set up another appointment just to get some more information on it all. It's so daunting, I know.
I've not even had an EEG or MRI yet and I was still diagnosed, when I had he appointment he just got an account of what happened, did a reflex test and sent me on my way with the diagnosis.

 

[gnault]

I have a good family doctor that listens. I shared my concerns and issues recently and she made not of them all. When she called my neurologist he didn't think any of my recent issues were medication or epilepsy related. I guess I'm saying this to encourage you to get an appointment with at least your family doctor to document all your worries and concerns.

I had numerous partial seizures of various types that I more or less ignored for my own reasons of not wanting to accept that I had a medical issue/problem. I then had what appears to be my only generalized tonic-clonic seizure. My first MRI showed what was originally thought to be a brain tumor, likeily it wasn't.I've had four MRIs in total over the last eight years to make sure that there are no issues. They have determine that is likely scar tissue. Because of the scar tissue and the unknown cause I am medication indefinitely.

I recently decided to keep track of things that come up that I am concerned about, but unless serious enough I won't panic about them. The issue of another seizure always concerns, sometimes more so my wife, can't stop me from enjoying things. I'm almost 50 so I can't let it stop me. I'm heading for Israel with my 15 yr old in a few days. Concerned about a 6 hr time difference, medication, fatigue, dehydration, eating enough? I am just trying to be aware of the issues but not let it control my enjoyment.

You might want to express that you need more of an explanation to your diagnosis. My neurologist sat down and talked to me about my diagnosis and it felt like I was sitting down with one of my closest friends. He was that down to earth and easy to talk to. We even talked about our convertibles and life in general.

Good luck and keep everything in perspective.

Gilles

 

[masterjen]

I've not even had an EEG or MRI yet and I was still diagnosed, when I had he appointment he just got an account of what happened, did a reflex test and sent me on my way with the diagnosis.

Perhaps if you requested some more detailed testing it would put your mind at ease? And if the EEG showed abnormalities consistent with seizure activity, being on medication may also help you to worry less.

 

[Howll]

Yeah, I've been referred but the NHS here in the Uk aren't the fastest healthcare providers. I had both back when I had my first seizure at 15, nothing there, but since there was such a large gap between seizures (6 years) they're sending me for another

 

[Nakamova]

As far as talking to a neurologist, I never had anyone to speak to after I had my EEGs (maybe this is normal) I think this is what has left me feeling so lost, nothing was explained about the activity they found. I'll look into that. I do wish I had an MRI, if you hadn't noticed I'm a bit of a worrier!

An MRI is often done after someone has had a seizure in order to rule out some structural cause of the seizure such as a lesion or tumor. In most cases they come up negative. Since you haven't had a seizure in the two years since the EEGs, that's a good sign that there is nothing structural going on. I hope that will help set your mind at ease a bit.

In terms of standard medical practice, however, it's completely inappropriate that the reason given for bypassing the MRI was that you "looked normal". The whole point of an MRI is to look for issues that can't be seen by the naked eye. It makes me wonder if they were trying to avoid the MRI for things like scheduling or financial issues.

I hope you are able to see a neuro to provide more clarity about the EEG results and tohelp put your mind at ease. Two years seizure-free while unmedicated is a very positive sign, and I hope you can feel more informed and confident moving forward.

 

[WorriedAlways]

@Gnalt I have considered going to my doctor (and probably will be the first place I go), however I do feel a little silly going in and saying "So that thing that happened 2 years ago..". Thou I realise its a perfectly normal thing to ask about!

@Nakamova
Yes I always wondered about the MRI, its what worries me the most. He did do a few basic tests on me first, feeling around my head, having me follow his finger with my eyes and pulling on his fingers (that seemed an odd one). The whole thing seemed a bit odd. And then said I looked normal. Could it be that he meant it wasnt urgent and that I should have EEG first? Can EEGs rule out the need of an MRI? Sorry for so many questions

I am slightly nervous now that I have missed an important test that seems to be standard for most people, I wonder if I could even get one this many years later.

But thank you all for the replies, this is the first I've talked to about any of my concerns, it does make me feel better!

 

[Nakamova]

Yes I always wondered about the MRI, its what worries me the most. He did do a few basic tests on me first, feeling around my head, having me follow his finger with my eyes and pulling on his fingers (that seemed an odd one). The whole thing seemed a bit odd. And then said I looked normal.

TBH, since you haven't had symptoms for two years, I don't think you need to worry too much anything that would have shown up on MRI. Still, to set your mind at ease, it can't hurt to ask to ask your doctor about it.

The other things the doctor did were standard neurological tests: He felt your head to check for swelling. The eye test helps check the optic nerve and rule out things like tumor. Tugging on your fingers is a way of looking for any unusual weakness on one side or the other.

 

[gnault]

I was asked by somebody I work with why I was released from the military and I told them I had a grand mal seizure. They said "oh you have epilepsy". I thought to myself that after 12 yrs I didn't remember actually being told that I was diagnosed with epilepsy. Next time I was at my doctor's office I decided to ask questions and she actually gave me a copy of the neurologist's note to my family doctor explaining the diagnosis. It's never too late to ask you doctor questions if there are lingering questions in your mind that you have. I am on medication for the rest of my life as they do not know what the possible trigger for my seizure was and they found what they believe to be scar tissue on my brain.

There is no harm in a question(s) that can lead to peace of mind or treatment options that weren't thought of or pursued.

Gilles

 

[AlohaBird]

I had the EEG tests, I was told I didnt need an MRI because I looked "normal".? the first eeg test came back with "abnormal activity" so I had another that I was sleep deprived for, also came back with "abnormal activity" (I can find the specifics of the abnormalness if it helps with my questions)

Now where I'm confused.. I got these results in a letter, that simply told me I have "Generalized Epilepsy" and that if I generally take care of myself.. it won't happen again. Thats it. No meds. No info. Nothing. I'm left thinking.. but my results were abnormal? I was very nervous having my tests, the nurse even had to stop and ask if I was really nervous.. could that affect it?

This was over 2 years ago now, no such seizures since (I do get more sleep now, when I had my seizure I was staying up very late.. however I am a bad sleeper, especially because of this)

I was thinking maybe if I got some proper information or opinions it could put a bit of closure on this, I know theres always a chance of another.. but I'm not living my life because of this. Thank you for any responses

The basic difference between an MRI and an EEG is that the MRI is a structural analysis. It looks for things like tumors, scar tissue from old head injuries, blood vessel abnormalities and such. As Nak said, if you have gone 2 years without any more seizures, you are probably fine on these issues.

The EEG on the other hand is a functional analysis. It records the electrical activity in your brain. It can show that abnormal activity is concentrated in one particular area of your brain but that doesn't sound like this is the case for you given that they labeled yours "generalized".

The neuro not giving you enough information to feel comfortable is rotten. The fact that he/she is being conservative about medicating you when there is no reason to think that you really need it is AWESOME!!! I so wish I had had your neurologist when I was 22.

All medications including AEDs come with side effects which over time can be worse for your health than the condition they are prescribed to "fix". If you can manage without meds, that is great.

Yes, being stressed out can definitely be a contributing factor and getting enough sleep as well. Diet and lifestyle factors such as staying away from the junk food, booze, and coffee and making sure to get some exercise are also ways to keep yourself seizure free.

Not every case of epilepsy needs to be medicated.

 

[iiris]

I can totally relate to this! I'm 22 and had my first grand mal in May and haven't had any confirmed seizures since. The MRI was fine but the EEG was abnormal. The neurologist was surprised that I hadn't had more seizures and seemed to believe that it would happen eventually. I didn't get an official diagnosis and refused to start medication. But now I find myself in this weird limbo where I don't know if I'll have another seizure or not. It's for example affecting my plans for the future because I can't move anywhere where I'd need a car because I'm afraid I'd get another seizure and suddenly not be allowed to drive. I've become slightly hypochondriac and keep trying to notice other symptoms like jerks or weird sensations. In a way I wish I'd just have another grand mal so that I'd know that I have epilepsy but of course I'd rather be healthy... It's just such a confusing situation and bothers me almost daily...

 

[AlohaBird]

iiris, look at it this way. Even if you did have another seizure and get officially "confirmed" as having epilepsy and got medicated, there is no guarantee that the meds would even work. They do for some people and not for others. Many people have to try a lot of different meds before finding some combination of most effective and least horrible side effects they can tolerate. You really don't want to go down that road if you don't need to.

Work on your overall health. Make sure to eat right, get your sleep, exercise, and try your best to manage the stress that comes with being your age and don't add any more to it by stressing out about the "what ifs".