New here

[luvmygirls]

Hi. My name is Melinda and I am new to the board. I am hoping to get advice, insight and support. Just a little about myself...I am 40 y/o and I started having tonic-clonic seizures about 7 years ago. However, I did fracture my skull when I was 18 months old after falling out of a 2 story apt building and had seizures for approximately 2 years before those ended for many years. That is why it came as a surprise when my seizures returned. I think it is also important to note that my mom, as well as two of her sisters had seizures as children that stopped then returned in their 40's and 50's. To this day, they are not sure what causes my seizures, if it's my history of head trauma or genetics.

I am dealing now with an increase in seizure activity, a change in auras (I can't tell now with a seizure is about to occur and as a result, I have fallen and hurt myself on several occasions. I currently have severe neck pain and awaiting a doctor appt this week to be checked out), an increase in fear and anxiety and trying to deal with ways to ease the fears my young daughters experience when they witness my seizures (I am a single mom). As I mentioned, I live in increased fear and panic of having more seizures now and I am afraid of going out in public until I am more stable. Life is so scary because I no longer feel I recognize when a seizure is about to occur. I guess now I need to become more familiar with new aura symptoms???? (Recently I have been more anxious, fearful, sounds have been more amplified, ringing ears...I guess these are auras??).

I am sorry this is so long. I guess life is SO upside down for me right now. I no longer feel my meds are helpful (Topomax). Stress is SOOOO high and I have no support. So I appreciate all the feedback you can give me. Sorry so long winded. Thank you!!

 

[popcorn]

Hi Melinda, I am Brandi. I am new here too. I can certainly understand your fears when you are having seizures like this with no warnings. Also can understand you daughter's fears and your worry over that. I don't have any advice as I haven't even been diagnosed yet, but I wanted you to receive a warm welcome, so

*hugs*

and

welcome

 

[Chaz1]

Warm welcome to CWE forum,

Not everyone gets a warning that can be truly recognized (or caught in time), the anxiety you feel may be the worry of when another seizure will hit (responsible job as single parent and u take it serious).

Everything out of ordinary YOU feel should be noted in a diary/on a simple block note book…ready for the specialist (neurologist) visit, which you should schedule ASAP if you can.

With your family genetics, in my humble opinion would warrant a good analysis. When are you due to see your specialist again?

How much med do you take? The CWE wonderful members will no doubt be able to advise you better in your med question, my Son has Epilepsy, not me.

 

[valeriedl]

I'm 35 and 9 years ago I had my first seizure. The dr's still don't know what brought it on.

With alot of my seizures I have no warning/aura that it's going to happen. Sometimes I will fill a little dizzy and my lips will tingle, but I usually don't put two and two together until after the seizure happened.

As Chaz1 said, try keeping a diary of how you feel before and after a seizure. This might help you understand more of when a seizure might be coming on. If there is a history of seizures/epilepsy in your family then there is more of a chance that you can have it too.

Stress is a huge seizure trigger for me. When I'm stressed out about something I will usually have a seizure in the very near future.

When you leave the house is there any way that you can have someone go with you? This way if you have a seizure there is someone there that can help you.

Can you take one of your daughters to your dr appt with you? Since they've seen you have a seizure they might beable to answer some of the questions that the dr asks that you might not beable to answer.

Good luck. You'll get lots of help and support on here.

 

[Nakamova]

Hi Melinda, welcome to CWE!

Like you, I had a head injury when I was small (5 years old) that may or may not have led to a lowered seizure threshold and initial onset seizures later in life (when I was 35).

Unlike you, though, I've never had any warning auras before my seizures. That may make it easier for me to be "used to" the not knowing. I've never felt particularly anxious about seizing in public. I hope you can find a way to handle the anxiety about having a seizure so that it doesn't prevent you from enjoying life. Definitely discuss the possibility of changing meds when you see your neurologist. There are quite a few meds out there; I've been seizure-free for a while now on Lamictal -- may be that or another med will make a difference for you.

The more stable you feel in coping with your epilepsy, the more stable your daughters will feel as well. Kids are amazingly resilient, and although no one would choose to expose them to the illness or injury of a parent, they can often handle much more than you might think. There are some books that might help them as well -- check out the Library section for some possibilities: http://www.coping-with-epilepsy.com/forums/f40/

Best,
Nakamova