Am I over thinking my epilepsy... has it changed?

[aggy84]

Right so back in 2012 this wonderful community guided me through my epilepsy diagnosis. It was confirmed as complex partial seizures by eeg. K would get a de ja vu, fear, swallowing lots. I was on keppra which made it worse so I was switched to lamotrigine. Things weren't perfect to start but seizures slowly decreased from 4 a day to less and less. All super as my nocturnal ones vanished apart fear of a seizure.

Now I am confused again. Basically I went for years without knowing I had epilepsy so what I thought was normal possibly wasn't. Now I don't experience exact same sensations or feelings as before, I get a weird feeling that I could have one but it never happens. I only get these feelings once in a while and is often when I am run down.

So I had one of these hiccups at work the other week. I had been poorly and just felt weird all morning. My mouth suddenly felt really dry, my face felt flushed and I started to feel a bit confused and overwhelmed almost by all the people around me and lots of information near me. I found staring at the wall or something that wasn't moving made me wind down. I didn't feel panicky just worried of embarrassment like I used to with my complex partials. I took myself out the room for some deep breathes and to relax but didnt have heavy breathing or anything. I went back to work but it took me about 15 minutes to be like 'woah that was odd'.

My main issue is that because my epilepsy isn't the same from my diagnosis am I imagining all this or maybe over thinking it all? I.e just because something feels similar I think it's epilepsy. I find I glaze over sometimes which I seem to do motr but I did that as a little girl so have no idea if that is connected either, plus othrr forums say thats anxiety? It's making me worry to be honest because I don't feel it's right but because it was dismissed so much before I don't know what is and what isn't epilepsy. To make matters worse it's all a bit hazy even though I am awake and able to carry on.

Any guidance or anyone else's experiences would be ace.

Xx

 

[Belinda5000]

aggy84

epilepsy may change for many with there seizures.
Some may have just one type of sz or they may be like me and have several kinds of seizures.

I usually have partial sz's but I can also have tonic-'clonic absence generalized.

My sz's change all the time.:twocents:

E has been all my life and many people think I shouldn't go out in public and I refuse to sit at home and hide.This is my life and I'll live it to the fullest.I have a dr's appointment tomorrow and I take the bus and subway by myself.
I have done it for years and I'll continue to I won't hide if I seize that's life.:soap:

 

[Nakamova]

Hi Aggy,

Anxiety and a simple partial seizure can have similar symptoms, so it's not always easy to distinguish between the two. But your feeling "weird" and confused makes me think the symptoms are more likely to be a partial seizure, perhaps triggered by feeling fatigued or run down. Probably the best thing to do is keep track of these episodes and discuss them with your neuro to help determine what's going on. Seizure types and medication tolerances can change over time, so it could be that your medication dose needs adjusting.

 

[JJR1956]

Hi aggy84,

Belinda is right. I started off with grand mals, then went to night seizures, (didn't even know I had them, but my tongue was all bite up and the wife told me I was shaking), then I started getting these blanks in memory, and now nothing. (Fingers crossed!)

Like Belinda, I go out a lot and don't let it stop me. Just look at all my hiking videos in my signature. With MY seizures, I would always get a days notice. A weird bang of a headache at the base of my skull and neck, and I would feel like crap too. It's hard to explain, but it always happened the day before a seizure.

Hope you feel better.

 

[acshuman]

Aggy84,
It is NOT out of the ordinary for a person w/E to have different types of feelings! I have had many different feelings during my 50 years of having E. The main thing that you have to do is NOT let these new feelings worry you so much that you take your mind off of living your life with E as part of that life! These new feelings may surprise you to the point of NOT understanding them, but that has to be dealt with the same way a person has to take however much time it takes to understand their E, when they have first been diagnosed. I know that many people have had these types of feelings, but they learned about them and by doing this they realized that these new feelings were also something that they COULD deal with without overthinking and causing themselves unnecessary stress that could cause more problems for them.
You just have to be willing to take on these new problems and NOT let them overtake YOU!

ACsHuman:twocents:

 

[acshuman]

Aggy84,

Dealing with these new occurrences will show you how you can be the type of person who can conquer these types of problems.
You may very well become a stronger person because of your being able to deal with things like this.
This type of self-confidence building can be very important to a person.
I know that I have seen myself become better able to deal with ALL problems that happen in my life(good or bad) because of facing problems and solving those problems!
Doing this can make you feel very good about yourself and want to help others!

ACsHuman

 

[Howll]

I personally think you may be over thinking it, because I do that a lot. Like I'll drive down a road I've driven down loads of times, remember driving down there before and think "oh, was that Deja vu?" Obviously not because it's a bloody memory.

I think your symptoms sound anxiety related, anxiety can also come in many forms and a panic attack doesn't always mean hyperventilating. I could be wrong, but I think if you have a seizure, regardless of how mild, there's a distinct difference.

 

[seagull]

Making diary of what's happening show your doc

 

[Porkette]

Hi Aggy84,
Take my word sz. can change over the yrs. I've had epilepsy for 44 yrs. and I started out with just absence sz. then 2 yrs. later complex partial sz. began also. Years later I started having simple parital (aura) sz. also. I have found that sometimes I will get a aura sz. that will lead right into a complex partial or absence sz. My Epileptologist told me this has happened because I've had sz. for so many yrs. and it caused more damage on my brain. I found that taking vitamin B12 1000 mcg. once a day was the best thing I ever did because it reduced my sz. greatly. You may want to give it a try. I wish you only the best of luck and May God Bless You!
Sue

 

[acshuman]

Vitamin D

Many people see an downturn in the number of seizures they have while the days are shorter, making getting enough Vitamin D from sunlight more difficult, when they take some additional Vitamin D, This can help to keep the levels of Vitamin D high enough even though a person may be getting less Vitamin D from the shorter days.
I know that the person to speak with about this is 'Porkette'. She is the person who made me aware of this a while ago, on eCommunities!

ACsHuman:twocents:

 

[valeriedl]

E has been all my life and many people think I shouldn't go out in public and I refuse to sit at home and hide.This is my life and I'll live it to the fullest.I have a dr's appointment tomorrow and I take the bus and subway by myself.

Same here!

I had my first seizure 13 years ago when I was 27. My family wouldn't let me do anything myself, wouldn't even let me out of their sight. When I took a shower my mom even sat in the bathroom!

I felt like I had a 'child leash' on me because when we went out I had to be right beside them at all times. It took a few years before they'd let me go to the grocery store and walk to the end of an aisle myself. I had to be in the same aisle with them though so they could see me.

A few more years later, depending who I went out with, I could finally get my own buggy and shop alone. My dad was the one first one to let me do this. I can remember when we went to the mall and he said he was going to go into Sears and sit in one of the display chairs and watch tv while I went around by myself. I felt like a 'big girl' again! He still called me on my cell every so often to make sure I was ok, didn't mind this though.

Even now some people don't want me wondering too far off, usually my husband.

I have done it for years and I'll continue to I won't hide if I seize that's life.:soap:

If I have a seizure in public I don't care. As you said I won't hide it!

 

[Howll]

I think that's quite nice Valerie. I mean, yes it's over bearing but it definitely shows that people love and care for you. I get the opposite, but not in a bad way. After my diagnosis last year, I started to recluse and stopped wanting to go out alone, even the bus journey to work brought me fear and panic. My boyfriend and family though, kept on at me to keep living my life as normal. The epilepsy was causing anxiety, and I was giving in to that anxiety. I've gotten better, I no longer have a massive panic attack on he bus. I do tend to do less alone though, I must admit.

 

[seagull]

I just say to me self think people out there walking about that don't know they got it.

 

[gnault]

Last fall I decided to ask the doctor filling for my family doctor if I was ever officially diagnosed with epilepsy. At first I thought right frontal lobe seizure disorder but I just reread it and it's right temporal lobe. Since being told that and reading over the neurologist's notice I find I am almost a bit obsessive with reading on the forum and getting information. I have scar tissue/a gliosis that I keep trying find information on. My wife tells me my memory socks, I woke up one night where my legs jer ked and smacked each other quite hard. I'll ask my pharmacist about this symptoms. It doesn't stop me from doing things but I keep researching. I want to see my neurologist to ask him questions on the gliosis though.

I try to do my reading/research discreetly though because I don't want my wife to worry. She already worries about the amount of sleep I get. This usually varies 5 and a half hours to seven hours a night.

For me it's hard not to think about it.

 

[seagull]

I got scar tissue aswell.YOU just taught me something gliosis which I to going research now..DOC SAID I got patches in brain I thought dewy spots no one said what they are I just assumed apparently that dementia or could be..My brain like dog food it very depressing you read posts see most of us send ourselves nuts with it.I cry more tears over memory than anything else no one seems understand how debiliting it is.
YOU doing right thing researching I do so do most on here..i have right and left and something else I get full gamet of e related things but it do not always mean it e related you could drive yourself nuts if you think every little jerk is e often it something simple like over tired.
When you first get diagnosed you can over analyse it humam nature but it better to be well informed sometimes it can pi88 doc off but that tough.
MY DAUGHTER and me both have it if did eeg on my daughter it comes back abnormal mri will show legions when she was 5 She have one after other body spasms jerks I would say thousands in course of a day she had to go bording school for kids with e as it became unbearable by time she was twenty all stopped so did medication.She may have odd one now but so simple and thought potent e medication not way to go.
Brain strange organ my daughters mri and eeg very abnormal yet others can have normall eeg and mri yet their sz be awful.
When she at school the school hospital which was high teck intensivecare would have kids who be in status for days on end and yet my daughters eeg and other brain function tests would be far more abnormal yet she was running around and those poor kids in status which frightening to watch..
I think still along way to go before they understand brain if ever so be well informed and forums I learn more about e on here than in books.You even get doc writing web address out for patients these days