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Epilepsy, Conversion Disorder, Depression, and Whatever else.. SCARED!

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Unread 02-05-2012, 10:14 AM   #1
FindingMyWay
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Default Epilepsy, Conversion Disorder, Depression, and Whatever else.. SCARED!

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.
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Unread 02-05-2012, 12:28 PM   #2
Janke
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Quote:
Originally Posted by FindingMyWay View Post
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.
Sorry to hear about your problems.

If you have stopped going to work and are on some type of medical leave and will be on that leave until your retirement date, you should file an SSDI claim now, not later. You can start the process online at www.socialsecurity.gov.

When completing the forms, you can get an exit number that allows you to start and stop the form completion. So, you can take as many days or weeks as you need. If that is still overwhelming, you need to get help. I think your spouse would be the first best choice. If that is not viable, my next choice would be another family member or close friend that you can confide in and who is willing to take time to help you. If that doesn't work, and you are still overwhelmed, you may want to contact an attorney. However, the attorney still doesn't know your life and you or someone who knows you still has to answer the questions.

I do think one of the common problems with initial applications is lack of thoroughness in answering questions and the assumption that the medical records will speak for themselves. Maybe they will; maybe they won't.

If you are still doing your job and getting paid for it, you probably shouldn't bother filing until you stop work. SSA will not make a decision based on what you going to do, that you are going to stop working.

One step at a time. Make it a priority but complete the application in your time frame.
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Unread 02-05-2012, 03:56 PM   #3
ginnie
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Default Dear finding my way

First I want to thank you for your service to our country. I am honored that you found NeuroTalk, and I hope there will be alot of people to offer you some directon and compassion. I really wish that this did not happen to you. I hope you will be able to retire, with full medical benifits through the military. I am also very sorry you are being told that this is something you should do.
I know you are also worried about your ability to take care of your disabled children. You have alot on your plate. I hope there will be others here to Welcome you here too. I know what the condition is, and I certainly hope that medically you will be able to be helped, so that the seizures are under total control. The good souls, that have this disorder will be able to tell you of their experiences and may be able to help you better. I am here to give you a warm hello. Visit any of the forums you want to. You can also join in on any conversation. This is a caring bunch of people here, so please feel at ease. Thank you again for your service. I have two military men in my family. ginnie
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Unread 03-07-2012, 02:43 PM   #4
don1956
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Quote:
Originally Posted by FindingMyWay View Post
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.
i(we)understand how you feel.believe me we are not just saying that.as a matter of fact we all been thru what your going thru.and some of still are i been thru what your going dealing with.word for word.i have worked 30yrs and spent 3yrs in the navy.i now have 4bulging/cracked disc in my neck and "fibro"in my neck and shoulder.it took me almost 3yrs to get "ssdi".its just "getting"there is the hardest part(SSDI approval).there was a lady here who was very helpfu to this section.if not for her i(all of us here)would have would have been lost,destroyed mentally and physically.we both came up with this section.hope it helps.talking to much right now..sorry.but check out our section

http://neurotalk.psychcentral.com/thread142636.html
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Unread 02-18-2013, 12:31 PM   #5
Mrs H
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I hope things get better for you. My husband is going through the same. We have tried for years to conceal it and we have become a little reclusive trying to avoid situations which will expose his condition. Now after the eilepsy has worsened furthur and after throwing his pride away, he has applied. The application process is depressing. It is not good to focus on all the bad and to finally admit it to yourself. One year his medical insurance was raised to 1000 a month so we quit reporting anything. We even considered paying cash and using an alias or misspelled version of his name with a different doctor. It is a catch 22 situation. Because of his lack of memory I had stepped in and feel like such a bad bossy wife. I feel like if I repeat "Don't you remember" again I will start to hate myself. xoxo


Quote:
Originally Posted by FindingMyWay View Post
Hello A,

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.
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Unread 02-18-2013, 05:01 PM   #6
LIT LOVE
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Quote:
Originally Posted by Mrs H View Post
I hope things get better for you. My husband is going through the same. We have tried for years to conceal it and we have become a little reclusive trying to avoid situations which will expose his condition. Now after the eilepsy has worsened furthur and after throwing his pride away, he has applied. The application process is depressing. It is not good to focus on all the bad and to finally admit it to yourself. One year his medical insurance was raised to 1000 a month so we quit reporting anything. We even considered paying cash and using an alias or misspelled version of his name with a different doctor. It is a catch 22 situation. Because of his lack of memory I had stepped in and feel like such a bad bossy wife. I feel like if I repeat "Don't you remember" again I will start to hate myself. xoxo
This thread is a year old, and the OP doesn't post on NT anymore. It really is best to start a new one if you have questions.

Committing what sounds like fraud, won't help uncomplicated your life...
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Unread 04-16-2013, 09:41 PM   #7
bonner2013
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Hello! FindingMyWay!

I've had epilepsy seizures for 37yrs now, and I have felt like I've been through the ringer, with all the diff. docs, and meds I've taken over the yrs. I have gran mals, parcial, and pedimal sz. I was on 7 or 8 diff. meds throughout the yrs. until I heard about the VNS. which is for sz. I was doing really well for myself, because I went down to 3 meds after they put that machine in my chest. I was living by myself, had a job, and was going to college.

Then 6yrs. after I had the VNS my batteries went out on the machine without me knowing, and how long it had been out we had no way of knowing. It took about 6 to 8 months for them to even be able to get me scheduled in to get the batteries replaced. After they were replaced everything went down hill, I was having my gran mals one right after another. So they tried me on a new med. which started causing me to halousinate, and my family had to come together, and help out with me, I was fired from my job because I was considered a high risk, and my college said I couldn't continue my classes, because of the same reason.
One of my docs recommended to my parent's that I be put on disability, due to my situation. He saw what I was going through with the halousinations, and what my parent's, were dealing with, emotionally with me. So I've been on disability ever since, I still have the sz like I've been having. So I have my good, and bad days, but thanks to God I'm not halousinating anymore.

I hate being on disability though because believe it or not I was happy at my last job, which was working for the school district, and I was taking classes to be a teachers assistant. I hope you don't take offense to my advise, but maybe you should try to find a doc that can help you, just like my doc helped me. If anyone can help you get help faster it can be him/her, good luck, and God! Bless!
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