[FindingMyWay]

Hello All,

I am new to the group. I am currently a service member on my way to a retirement shortly. It has been a lengthy process. I was first diagnosed with epilepsy in 2010. I had a series of seizures and was rushed to the emergency room, where they performed a CT scan. I had what was going to be later called a Cavernous Malformation. It was small according to doctors, but the reason for the Epilepsy which was not showing up on the EEG. At the time, they informed me that it didn't matter, as not all seizure activity shows up on EEGs and started me on a regiment of AEDs. According to the military rules, as long as I didn't have another seizure while on AEDs, I could stay in.

So, I tried my best to ensure that didn't happened. I was the breadwinner in my family and I needed the health insurance more than anything because I had children with disabilities. Needless to say, I continued to have seizures. Not many at first, just a few hear and there. But, because I needed to keep my job, I didn't say anything.

But, my work was failing, BIG TIME! I was forgetting things, having poor concentration, speech was becoming a task... I would be in the middle of a conversation and respond on something that had nothing to with what was going on! The randomness of my behavior was unwinding.

In May of 2011, Everything in the fan. I fell out of the shower while having a shower and was rushed to the emergency room. After being released, the seizures didn't stop. I started having petit mal seizures every week! I went to see my neurologist, whom had changed by this time because of a military move, and they diagnosed me with PNES and was referred for "review of retirement". I was crushed. How could this be? How can I have PNES? I was sent over to Neuro-Psychology and came back with Conversion Disorder, which was linked to the PNES. But, neurology has informed me that we cannot be sure that you also don't have Epilepsy, so keep taking the AEDs.

I have trouble with concentration, focus, memory, and speech. If I don't put a reminder in a cellphone calendar.. I am screwed. Trying to find the words to express that to a SSDI worker vocally is crap! It takes me about a while to formulate the words and when I have them in my head... the brain and mouth don't coordinate to make it happen! I forget how to spell simple words, I know the letters involved but trying to arrange them becomes a task. I feel helpless and lone... without anyone being able to understand me. Of course, I am being selfish here, because there are still 3 children with bleeding disorders to think about while I am going through this.

[Dmom3005]

Welcome to you findingmyway.

I think you are doing just what you can to solve the problems you have.
I would say you could easily have epilepsy with the symptoms you are
listing. It is very true that not all seizures show on a EEG.

I would keep working with the neurologist to get on the combination
of medications that seem to work the best for you. Please have them
help with the concentration and other symptoms. These could easily
be from the medications.


Next when it comes to SSDI, please take your time giving the information.
Its the person in the Social Security offices place to help you work through
this. Don't be worried about asking them for their help.
Or if you have a family member close by that can help, ask. Or a friend.
The main thing you need for this information is your doctors information.
And then they will want to know when your last seizure was. Its very
important to keep this record. Also the list you made here of side effects,
needs to be written down for them.

Donna

[Rrae]

Welcome to NT!
You've sure come to the right place! Not only is NT full of great support and understanding, but there is also alot of good information at the top section of most of the forums called the "Sticky's"

Here's a few of the forums you might find useful:

Epilepsy: http://neurotalk.psychcentral.com/fo...sprune=-1&f=11

SS Disability: http://neurotalk.psychcentral.com/fo...sprune=-1&f=28

Depression: http://neurotalk.psychcentral.com/fo...sprune=-1&f=37

You'll feel right at home here, there's something around every corner

Caring,
Rae

[Darlene]

FindingMyWay,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, welcome to a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Epileptologist (Dr. specializing in Epilepsy) at a Epilepsy Center are the best one with the epilepsy. You will find a great number of these at a Medical school. It was a success for me to find a good one in Dallas, Texas at Southwest Medical School.

Some of the many things to do are, always stay away from flashing lights like as in a theater, take Vitamin B complex, nutra sweet (aspartame) which causes more electrical activity.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[FindingMyWay]

Thanks to all of you guys... I am trying to be optimistic about the ordeal, but it is very hard. I am having emotions that I have never hard before.. some of them I am a frightful of honestly. The uncertainties of the next day is scary and very overwhelming. I want to think about the future about then and think about the extreme latter. Coping is not my strong point right now.

[Darlene]

FindingMyWay,

One of the many things I have taken since I started having epilepsy was one day at a time. Right now I know how you are feeling. I am had epilepsy for 49 years and to me it was easier everyday, because I thought I was lucky to be in better conditions than many other ones here on earth. After many years I am doing a lot better, back in December 2009 I was able to have a surgery controlling mt seizures. The day will come when you will start feeling better, think positive. My thoughts and prayers are with you.

Darlene

[meNmyEpilepsy]

I am a single mom of three special needs kids. Will tell you that under great physical or emotional stress and a cold or flu, my seizures came in full force. I wrote my will because I didnt think I could possibly survive with the number of seizures I was having. I also couldnt tell others because I didnt (and still dont) have insurance and drove my kids where they needed to go. That was several years ago. I learned to stay away from ALL strobe lights, (this is a hard one)....limit your time on the computer and in front of TV. (sometimes I didnt follow that rule because it was my only outlet).

I learned to LIVE by my calendar!!!!!My kids today know, if its not written down, it cant happen. It helps to get your family to learn new rules. I have really learned to CHILL. We cant control our bodies, so I would pray that God would help me through my hurdles.
If having an antidepressant will help.... dont hesitate. Dont think about the future ..........not yet.... think about managing today and perhaps tomorrow. Part of the overwhelming feelings for me was trying to PLAN for the future. There is an old saying... Man plans and God laughs. As silly as this may sound, try to take it a little slower. Make SERIOUS time to destress... every night a cup of chamomile, or what ever you can do to truly let your body heal.
PLEASE try not to be so scared...I think that fear makes symptoms worse because we cant possibly see a bright future from the standpoint that you are in now. Hang in there friend.