Hello! New to the forum.... Can I smell burning?!

[Tia Maria]

So I was recently diagnosed with TLE and in between making jokes about being able to smell awful things, mainly burning, I'm actually struggling to cope. Even just posting this I can feel my eyes welling up.

I've had simple seizures since I was 16 and now at 23 I finally have my diagnosis. I had a serious secondary generalised seizure that last over 6 minutes, temporarily lost my ability to speak properly and understand words. When I could speak I was saying all kinds of silly things like "I'm going to make a cup of kettle". I'd know there was something wrong with the sentence but not know what! I'm not sure what this diagnosis means. I feel very misunderstood by my family, especially my boyfriend who tells me to stop feeling sorry for myself. Some of friends seem to like the drama behind it too much, constantly fussing and telling everyone that will listen.

I've been taking tetregol and since then my mood has gone down. I'm in 200mg at the moment, will increase to 300 mg next week and then 400 in two or three weeks time.

My name is Tia!! Thank you for reading.

 

[Nakamova]

Hi Tia Maria, welcome to CWE!

I feel very misunderstood by my family, especially my boyfriend who tells me to stop feeling sorry for myself.

Okay, this is not cool, they need to be on your side. A recent diagnosis of TLE is scary and hard to cope with -- the folks around you should be supportive, not dismissive. Is there any way you can get your neurologist to explain to your family and boyfriend what is going on? And when you talk to your friends be firm and matter-of-fact about how they can help and how they may be hurting. If you want your friends to "shut up already" about the seizure, let them know. And when it feels like no one understands how you feel, come here and vent.

If the tegretol is making you depressed, make a note of it and tell your neuro. A lot of side effects go away once your brain has had time to adjust to the medication, but if the depression persists or escalates, then you need to try a different med.

Best,
Nakamova

 

[masterjen]

Hi Tia Maria and welcome!
I have always found it hugely helpful to have a family member come to my appointments, and I am older than you! Not only is it a second pair of ears to listen to the doctor and a second brain to remember what was said, other family members you talk to after the appointment seem to be more receptive of the information when two people are saying the same thing about the appointment. Also, many neurologists like to have a second person along to verify information, especially someone who may have witnessed a seizure.

 

[Pinkattitude]

Hello Tia Maria!
I'm glad you found this group and posted. I'm so sorry you're feeling misunderstood by your family - that's awful.

Nakamova is right on - they need to be on your side, and Masterjen has a wonderful suggestion in bringing them to your appointments.

Please feel free to vent here! At your age, I'm sure you really would like to be "like everybody else," and learning you have epilepsy is rather "not like everybody else." I'd bet it could bring up a lot of emotions. Come here, type and cry and let it out! I've done that before. It's great therapy.

Two things about those around you (family and friends):
1. They are also going through an emotional change and may be scared not understanding what epilepsy is. Perhaps your boyfriend is trying to minimize what you have because it terrifies him and he's scared for your well being. It's not an excuse for him to speak poorly to you, but this may be temporary until he learns more and sees your seizures become more controlled with meds.
2. If they just continue on the "just get over it" type of behavior and never come around to a place of compassion, you may have to change you friends eventually. But first give them a chance to understand what you have.
Our society doesn't do much to educate people about epilepsy, so all they think is what they see on tv shows (but that's a rant I won't go on here). Just cut them as much slack as you need them to cut for you, too.

It was 1966 when my parents learned I had epilepsy. There was will a TON of prejudice about it, so my mother never called them seizures and never told my brothers I had epilepsy. We called them dizzy spells, and I don't know what age I was when I consciously learned it was epilepsy. She was terrified that we would be ostracized and that people would not invite me over to play if they knew.

In 1979, when I was in college, I did a speech for my Speech Class on Epilepsy. I learned a ton, and talked really really fast because I had so much material and my prof had said "no more than 10 minutes". When I got my grade, he wrote on it, "should have talked longer." When I objected because of the 10 minute limit, he said, "oh, that's for the boring topics. This was interesting." Translated, I was really teaching them something they did not know anything about and wanted to understand.

So, welcome! Ask questions - read threads that interest you - tell us how you feel - stay in touch! :hugs:

 

[gbpackerfan]

Hi Tia and welcome. I'm sorry for what you're going through. I can relate. I had a depressed skull fracture at 10 months, started having seizures in my sleep at 19. Now I'm 34 and still find it very hard to describe to friends and family. In my twenties, I basically went through 10 years of severe depression and denial. Accept help from friends and family that want to be there for you, don't push them away like I did. I don't know what to say about your BF, but I know it is hard to get a diagnosis on paper, even when you've been suffering for so long. My experiences with different meds have been horrible. I tried zonisamide for 4 long months, hoping to adjust to it before I spoke to my Neuro and got off of it. Every person reacts differently to different meds, but even though I was seizure free for those 4 months, they were the worst 4 months of my life. Keep your head up, I hope you find something that works for you.

 

[Tia Maria]

Thanks

thank you for all the replies, I'm glad I have at least one place where I can not only vent but also confront my own worries and concerns without causing other people to worry. I think what is really upsetting me (and it sounds so silly) is I've been learning to drive for just over a year. In a slow learner and not confident but I had just booked my test for 15th of July. I was so ready and now I can't for 12 months. People say it doesn't matter but that was a big part of my future independence and freedom?

Sometimes it just feels like I can't breathe

 

[Pinkattitude]

Wow, Tia! I just posted a rant about this very issue. It IS a big issue :hugs:
I drove for over 30 years, am a mom and wife, and used to do all the household shopping. Now I rely on others for this.
Another personal issue is that my daughter is having a baby any day, and I worry that they will never trust me with her because of my e. All those independent things that I thought I might do with a grandchild - poof - gone.
So, when I read this, I do not think it sounds silly. It's a very valid reason to be sad!
I think it's in the "Attic" area of the forum, there's a great place to let go and just have a rant about whatever.

Hang in there!

 

[valeriedl]

Recently I've started having quite a few seizures, I think it's when I'm coming out of a complex partial, where I know what I'm doing but I know it just isn't right.

A few times I've gotten confused about the time. It might be 5 pm but I think it's 5 am. In my head I know it's not right but it just doesn't seem to want to sink in. I know what I'm doing but I know that I probably shouldn't be doing it.

During one of the last one's it was 7 pm but I thought it was 7 am and I started doing my morning things. I had it while I was laying on the couch and couldn't figure out why I was there at 7 am in my clothes instead of my pjs. I figured out that I must have fallen asleep on the couch and never made it to bed. I fed the cats and then started looking at the clocks in all the rooms trying to figure out if it was am or pm because I just couldn't figure it out. I was getting ready to take my meds then I realized what time it actually was.

During another one I started looking all over the house for my dad, in all the rooms and in the basement. I knew he wasn't in the house but I just couldn't stop looking for him. My husband told me that he wasn't there and I knew that but still kept trying to find him. My husband had to follow me all over because I wouldn't sit down and he didn't want me tripping down any of the stairs or going outside.

Having a supportive family is very important. A lot of times they don't realize that you don't realize what you are doing. Since you are up walking around and talking then you must be 'ok' but why are you doing all these stupid things? As said try to have someone go to the dr with you and have him explain what's going on. Hopefully they may realize it or at least understand it a little more.