Hello

[Aicila]

Hello everyone. I have been browsing through here the past few weeks and decided to post and say hi.

Basically, here is my story...

Around 2002 I started to have complex partial seizures, only I didn't know they were that. They always happened the same way with deja vu then it was like someone dimmed the lights, I would get a 'tightness' (only word I can use that partly describes it) in my chest. I would be a little confused about what just happened and I would be tired for a while. They are a little more in depth, but you get the idea. Anyhow, I honestly thought it was just deja vu and that my deja vu was just weird compared to everyone else. It would be over and I would be like 'whoa, that was weird'. They happened anywhere from having one a week to 2 months in between. More often then not it would be about 1 a month. Nothing too dramatic and it didn't hinder any part of my life. About 3 months ago they kind of changed. The process from start to finish has not changed but the intensity has. The deja vu feeling gets a little weird and it turns into a scary feeling like I am losing control of my conscience mind. It kind of feels like I am going into some dream state trying to figure out why I just had a deja vu feeling. I don't remember any of the thoughts I had but I have a sort of residual emotion or feeling that lingers and I can usually remember that. They also started happening more often. I had them 3 days in a row, then 2 days later I had 2. I haven't ever had more than one a day and never more than 2 in a week before that. I decided to make an appointment. I called and gave the appointment line a brief synopsis of my symptoms. I had a physical training appointment later that afternoon and while I was running I got a call back with a voice mail. I called the nurse back and she said the doc ordered some blood tests, a CT and an MRI for me but didn't say why or give me any potential reasons. I was a little freaked out (actually a lot). He also pushed my appointment up from a week out to the next day. I went to see him and he took a ton of notes and referred me to the neuro. I had googled some stuff by the time I went to see the neuro and was a little more prepared and kind of figured I knew what he was going to tell me. I have had two different EEG's and I think that's all the tests I will have scheduled. I don't have my follow up with the neuro until June 1st. He has already all but written down that I have epilepsy but does not want to make a diagnoses because I am in the military and he wanted to get all the tests done to try and find out more information before I go through a medical board. The seizures have slowed down, they happen more often then they did before, maybe one every other week, but not nearly what they were when I made my first appointment.

So, basically my life is about to drastically change. I was weighing my options to get out of the military at my separation date anyhow, so this could just make the decision for me. Some days though, I sort of wish I kept my mouth shut. I know its important to find these problems because they can escalate (which it kind of seems it already has), but I'm not good with change and this is really scary. I know I didn't do anything but I do feel embarrassed when I mention it to someone. I feel like I am being judged.

On a side note, I have been married for 8.5 years and we have a wonderful 4 year old daughter named Taylor. She is absolutely awesome.

Ok, enough of my rambling. Hi everyone :hello:

 

[Nakamova]

Hi Aicila --

Welcome to CWE! There are a number of folks here who have been in the military, so you may hear from them.

It is very hard when you are first diagnosed to get a handle on what's going on. Aside from the strangeness of the actual seizures, there's all the weight that comes with the word "epilepsy". It's still a scary word unfortunately, and there's a lot of misinformation out there about it. The kind of seizures you've been having are actually more common than than the tonic clonic (grand mal) convulsions that people associate with pilepsy.

I fought my diagnosis at first, and like you was embarrassed about it as well. I had also gone through a very slow escalation of what I thought were minor brain weirdnesses. That was ten years ago. Now I'm not phased by epilepsy, and not embarrassed by it. I feel like a know a ton about it, not least because of sites like CWE. I hope you feel free to ask questions, or vent -- the members here have a lot of info to share, a lot of support to give, and we welcome your presence here at our "dinner party".

Best,
Nakamova

 

[bklyndeb]

Hi Alicia and welcome!

It sounds like you have the same exact issue i was dealing with for about a year. With me it felt like i was trying to grasp a dream or remember something that happened many years ago but by the time i was able to figure out what i was thinking the feeling was over and it just caused me to have nausea. I also thought it was de-ja vu but just stronger. I went to one Doctor and he did not know how to diagnose me. He just told me to go see a physiatrist. I knew the case was not that I was trying to remember something from my past so I just dealt with the feeling as like you, it did not come in between me and everyday life. It went from having these “episodes" every month or so to having them at least once a week. It was scary and weird and I would explain them to family and friends and they thought it was scary but no one I know suffers from epilepsy so no help there. I am now 19 weeks pregnant and when I was about 12 weeks they got much worse. I started having complete blackouts where I would be waiting for my bus to go to work and all of a sudden I did not know what I was doing there. Then one time it happened in front of my husband and he said he was talking to me and I was just staring into space not answering. These lasted about two minutes. One time at work I was waiting for a meeting and was the first one there. The last thing I remember was getting paperwork out of my purse and next thing you know I look around and my boss and supervisor were asking me if I am ok. They said they were talking to me and I was staring ahead and acting like I was sucking on candy for about two minutes and they were talking to me but I would not answer. My boss drove me to my Doctor who referred me to a neurologist. My EEG came out normal but they referred me to have a video EEG at the hospital for three days. They diagnosed me with Complex Partial seizures and put me on medication. Yes Alicia they can get worse like they just did for me and you need to try to find out what is wrong and take care of it now. I have only dealt with this for a few months and it has not been easy and sometimes I wish I did not know what it was because I still catch the déjà feeling once a week and it angers me more since I know what it is but there is absolutely no reason that you should feel embarrassed. You did not do anything to yourself to cause this! You have your beautiful child to think about and a husband that needs you to keep yourself safe. What helps me cope with this new diagnosis is that it can always be worse. Take care and good luck.

 

[Aicila]

"The rewards for those who persevere far exceed the pain that must precede the victory." Ted W. Engstrom

 

[Meetz1064]

Ohhh, i

DO like that quote.

Hi, and welcome to CWE, Aicila.

I've had E all my life, so I've never been in the military...so in that regard I can't quite relate. But there are plenty of others here who can. And I'm sorry for what you're going through.

You've come to the right place though, to get support, and to learn. Be sure to check out all of the nooks and crannies here. The Library and Kitchen are full of information, the Padded Room is great for those days that you just HAVE to vent (trust me, we've all done it). Mr B has built us an AWESOME home here.

I do want to ask a question. Have you ever kept a journal to see if there is a specific trigger or triggers that may be causing your E? Perhaps doing that might help you out quite a bit.

And kids are great, aren't they? They grow up far too fast though...

 

[Aicila]

I haven't started keeping a journal yet. I suppose I should. I hadn't really thought about it because there never seemed any rhyme or reason to when or why I would have one. I'm new to this whole thing so other than the well known strobe light and video game trigger, I didn't know there were others until just recently. I also did not know about a seizure threshold until 2 days ago. I still have a ton more to learn...

Kids are great. My daughter and I have an understanding and she agreed that she would stop growing if she got a super special suprise every month. So far she hasn't upheld her part of the bargain. One day soon though, she will start to abide to our agreement.