Trying to cope with the diagnosis

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c_comardelle

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I don't even know how to start this. I just was diagnosed with epilepsy 2 weeks ago. Having had 3 grand mal seizures to date. The first time I thought I just passed out. The second was the scariest thing I have ever experienced. And now the third which happened saturday just has me thinking "What is wrong with me?" I have always struggled with depression and anxiety but now its through the roof. I feel so helpless and guess I just need to vent.
 
Now Im really freaked out, my neuro wants to discuss my eeg. Help I am panicking and need someone to talk to!
 
Your gonna be ok. I'm kinda going through a similar journey, after 3 years of doctors and tests my doctor is using the word epilepsy, for me it's kind of a relief to know I'm not crazy, but it's also scary not knowing when I'll have another episode, and adjusting to more meds and quitting alcohol, and knowing who I can tell and who not to tell.
You've come to the right place, the people here are nice and supportive, and usually someone can relate to your problem
 
Welcome comardelle, and first off please know you came to the right place.
Just breathe okay, there's many possibilities when it comes to an eeg, and a lot of times they're minor or they show nothing (very common even though you're having seizures). I've had 8 of them and the results are the same every time, roughly 95 per cent normal, with just one little blip.

I know, and sympathize with all my heart what you just experienced. An epilepsy diagnosis for most is one of the scariest. things. ever.
As a rule (but not always), the diagnosis is made after a second grand mal. Please know there is nothing wrong with you, it's just very unfortunate. Have they done an MRI? A lot of times that will help give answers more than anything, say if there's a lesion or some sort of damage from the past. Good to ask your parents or check history to find that out.
There are two things you can do at the beginning which will not only help doctors down the road, but also give you some feeling of control (very important with this condition).
1. Start keeping track every time you feel weird or anything new, and mark the date of every seizure. Doctors look for patterns and triggers and knowing these things can make a world of difference.
2. Research. If you have access to the net read up as much as you can. Be wary of which sites though, not all are reliable. Try WebMD, American Academy of Neurology, Epilepsy.com, Epilepsy.ca, EpilepsyFoundation.org, any university website that specializes in neurology, and of course, this site. It has a huge member base and Epilepsy sufferers/family members from all walks of life. If you need to know something there will be someone who can answer, and if we can't we try to help you figure it out.
The sooner you get to know what is happening and what E is all about, the less freaked out you will feel.

Please keep in touch and let us know how things are going, and remember this is open 24/7 if you need to vent, scream, laugh, cry... or pretty much anything. (((HUGS)))
 
Welcome c_comardelle

I agree with Abynorml. There really is no reason to be scared.

Personally I think you should be excited. Whatever is on your EEG has probably been there all your life. It very well might explain to you an awful lot of unknowns and that is always the first step in treatment.
 
Thanks for the reply, I just find myself obsessing over things that are out of my control. Like the no driving thing, I have 2 young kids, what if Im home alone when another one happens? I have no auras so I don't know when they are gonna happen.
 
qtowngirl said:
Welcome comardelle, and first off please know you came to the right place.
Just breathe okay, there's many possibilities when it comes to an eeg, and a lot of times they're minor or they show nothing (very common even though you're having seizures). I've had 8 of them and the results are the same every time, roughly 95 per cent normal, with just one little blip.

I know, and sympathize with all my heart what you just experienced. An epilepsy diagnosis for most is one of the scariest. things. ever.
As a rule (but not always), the diagnosis is made after a second grand mal. Please know there is nothing wrong with you, it's just very unfortunate. Have they done an MRI? A lot of times that will help give answers more than anything, say if there's a lesion or some sort of damage from the past. Good to ask your parents or check history to find that out.
There are two things you can do at the beginning which will not only help doctors down the road, but also give you some feeling of control (very important with this condition).
1. Start keeping track every time you feel weird or anything new, and mark the date of every seizure. Doctors look for patterns and triggers and knowing these things can make a world of difference.
2. Research. If you have access to the net read up as much as you can. Be wary of which sites though, not all are reliable. Try WebMD, American Academy of Neurology, Epilepsy.com, Epilepsy.ca, EpilepsyFoundation.org, any university website that specializes in neurology, and of course, this site. It has a huge member base and Epilepsy sufferers/family members from all walks of life. If you need to know something there will be someone who can answer, and if we can't we try to help you figure it out.
The sooner you get to know what is happening and what E is all about, the less freaked out you will feel.

Please keep in touch and let us know how things are going, and remember this is open 24/7 if you need to vent, scream, laugh, cry... or pretty much anything. (((HUGS)))
Click to expand...
Thanks Qtown girl... I did have and MRI and nothing abnormal. So thats a relief, however my bloodwork was a little wacky mostly to do with my rbc, platelets, CO 2, Alkaline Phosphatase, Anion Gap, HCT, and MCH. Which really is greek to me.
 
epileric said:
I agree with Abynorml. There really is no reason to be scared.

Personally I think you should be excited. Whatever is on your EEG has probably been there all your life. It very well might explain to you an awful lot of unknowns and that is always the first step in treatment.
Click to expand...
What can an abnormal EEG show?
 
Hi c-Comardelle'

I'm glad you found this forum.

You have already rec'ed some great advise form Epilec. and gtowngirl.

I have been diag. for over 41 years now.

It is scary to be told you have E. but it is going to be alright.

It was in this forum that I have learned so much of what to do, not to do.

I encorage you to look around into all the diff. post and I hope that you too will find answers like I did.
 
I know exactly how you feel. How far apart were your 3 seizures. When you say depressed, do you also feel physically tired all the time?
 
My first one was 6 months ago and then I just had 2 in 2 weeks all grand mals. I know people keep telling me that there is nothing to be scared of but this just came out of the blue at age 27. It's hard for me to think positive and not get depressed when I don't know what the hell my body is doing
 
Hi C Comardelle. You've come to the right place.
The depression, helplessness & inability to express one's self is common for me also. I've been dealing w/E for over 40+ years.
But after a while that feeling leaves; (it took over a month after last seizure on March 23) and you will return to yourself again.
Be sure to get a lot of sleep, take your meds, and stay away from caffiene.

There is a lot of good advice to be found here. Good night, & be well.
 
Hi c_comardelle, just wanted to add my welcome to the others!

My seizures came out of the blue when I was 35. So I know how strange and scary it can feel. It will get easier to comprehend. Information is your friend -- ask questions, write things down, ask some more questions. And be patient with yourself.

Best,
Nakamova
 
Welcome and hello!
It sounds like you've really been thrown for a loop and coming to grips with everything is really tough. It's scary.
But you sure aren't alone. So many people here can relate and have been down your exact path.
I hope that you have lots of support at home and someone you can really trust and talk to while you're going through all this.
You have two little ones? I have 3 aged 14 months, almost 3 and almost 6. My eldest has had the "talk" about 911 and I keep the number posted as a reminder and she knows to run to the neighbours for help but so far we haven't had to reach that point. We're learning too.
Plus I mainly get simple and complex partials so I believe you're dealing with a whole different ball game than me but children are incredibly resilient and adaptable. Especially when you talk to them and prepare them for different scenarios and give them "duties".

I had an EEG five weeks ago now and I'm on a cancellation list to see my epileptologist and that is a first for me. The rest of the EEGs (is it 3 or 4 now) I had the results given to me over the phone. But all I can do is wait. Just like you. Wait and wonder.
I hope you don't have any more grand mals lurking around the corner and that life will be kind to you as you wait for your visit to your neurologist. Take care of you!
 
It's torn apart so many dreams of mine but I'm STILL having trouble placing myself in your shoes.

This is how you know you're in the right place. :)

It's scary as all hell.

Things to consider: diet, sleep patterns, stress levels, stimulants (everything from blood sugar levels to caffeine), temperature, etc.

Just PLEASE be safe. Experiment with any given variable in your condition, in understanding you may get hurt in the process. But learning is part of overcoming. Understand your limitations and you will surpass them. We will be here for you too, there's a reason communities like this even exist.
 
Does anyone have any ideas of diets that I could try. Maybe organic idk anything that would make me feel better. Also last night I had another episode that was different from any of my previous ones. I felt very weak, nauseated, and just something was off. So I went eat at the restaurant and felt like I had just dosed off at the table. Then on the way home, my husband was talking to me and I could hear him but just not respond. Of course he got frustrated with me. Then I stumbled out of the truck and into the house and landed on the sofa. I told him that I felt drunk. My mom came over and helped me into the bedroom where I was too weak to do anything. I just laid there. Then I started feeling very euphoric. Laughing out loud and talking about fairies. Now I know this sounds so ridiculous. My mom left and I went from being extremely happy to angry. I stormed out of my backdoor and walked through the yard to my moms where I ran into a tree and tripped over something in my moms driveway. I was so disoriented. I got into the house and laid down til I fell asleep. Does this sound familiar to anyone here? I am so new to this, I have only ever dealt with tc's.
 
Hey. Thanks for posting about your experiences. You may be new to this and it all feels so uncertain and it must feel like you're losing your mind but I wanted to tell you that what you described is very familiar to me.
Sometimes people are talking and I know they are, and I can hear that they are but what they're saying doesn't really make sense. My brain is all fuzzy and things sort of feel like I'm experiencing them from underneath the water. I'm observing but not participating and my mouth grows slack and I feel so tired. I can't talk. I start to drool. But I can hear and I know I'm aware at the time but the details are kind of lost afterwards. I like to describe it like I'm Dorothy in the Wizard of Oz when she wakes up at the end. You were there and you were there too... I get a bit twitchy.
I also have gotten euphoric. Giggly but I would recite nursery rhymes rather than talk about fairies. I knew things weren't funny but EVERYTHING was funny. Fortunately five minutes later I had a seizure and slept it off.
I've walked around stumbling and faceplanted on the floor. I get a bit atonic at times. I've also gotten stuck scratching myself on the chest or face. I smack my mouth sometimes. It's cute hearing my kids imitate it. Try explaining scratch marks on your own face and saying, oh, I must have done it in my sleep. Or just on the office floor 30 minutes ago when I took a break!
They sound like partial seizures. You remember all the craziness after the fact when they are simple ones but your awareness is impaired when they are complex.
You do feel drunk. Sometimes even slurry. Sometimes dizzy.
I know some people's seizures are consistent and they know what to expect but my seizures are constantly surprising me. I know it's the meds and my brain adapting though. I think anyways!
I have heard people say that their seizures can make them angry too. Swearing after their seizures or being violent even when that is farthest thing from their true personality.
Nausea is very common for many.
And don't be surprised if one day you experience deja vu or things around you suddenly seem unfamiliar.

It's a wild ride and I'm sorry that you have now boarded it. Hang on tight and don't give up. It doesn't always make sense but I like to think of it as something that happens to me rather than it is something that I have become.

Some people swear by changing their diets...gluten free, caffeine free, dairy free, estrogen free, sugar free, msg free, alcohol free, organic and these can absolutely help. Check around the site and see what you can find. Keep track of things as time goes on and you may find that you do have triggers. Changing what we eat can help us feel in control and when so many things are beyond our control every little bit counts.
 
Does anyone have any ideas of diets that I could try.
Click to expand...
It's great to look for ways to be proactive about your overall health, but you might want to wait until you have a better idea of what's going on, and feel a tad more stable. Once you do, it can help to keep a food diary so that you can get a sense of what foods you eat, and what areas might need improvement. Generally speaking, it's a good idea to avoid or moderate your intake of caffeine, sodas, alcohol, and foods with aspartame and/or MSG. If you suspect you might have a food allergy or sensitivity (to gluten for instance), you should slowly ease into a gluten-free diet and be patient about results. Some folks have found that the Modified Atkins Diet can help control or reduce their seizures. More info here: http://www.atkinsforseizures.com/ Make sure you check with your doctor before making any major diet modifications.
 
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