Epilepsy and despair

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syzygy
New Member


Date Joined Apr 2006
Total Posts : 3
   Posted 8/21/2006 10:18 PM (GMT -7)   
sad  I have known for years that I had a seizure disorder.  It was a minor nuisance at most, twitching in my sleep with the occassional tonic clonic.  I was diagnosed with fibromyalgia in October 2005 and within a few weeks of that I had my first complex partial with hallucinations.  My boyfriend feared that it was latent schizophrenia or early onset of Alzheimer's.  The hallucinations were auditory and visual and I could not tell what was real and what was psychosis, yet I knew that I was having an episode that I was convinced would land me in the psych ward forever.  This spell lasted 1.5 days on and off.  In June, I began a 2 week bout of insomnia, sleeping at most for 20 minutes at a time.  The seizures happened at least 5 or 6 times nightly that I can account for.  Then the psychosis came on with the non stop seizures.  My boyfriend took me to the ER and they sent me to the psych unit.  They never questioned me about my history of seizure disorder nor did they investigate about epilepsy etc though my intake forms list epilepsy in my family, the primary cause of my father's brother's death, and uncontrolled grand mals as the secondary cause of my mother's death.  Finally, I put 2 and 2 together when my boyfriend started freaking when I seized in my sleep saying I was going nuts again and that he was losing me.  The psychiatrists with all of their brilliance never thought to order an MRI or an EEG while I was in patient for this.  Through research, I learned that I had complex partial seizures, partial seizures, and a few tonic clonics with accompanying psychosis.  My internist gave me Keppra per my request after doing online research and added Zonegran later, also my choice.  Finally, Medicaid took my application enabling me to see a neuro.  I have partial epilepsy with impairment.  I cannot drive legally which puts a big monkey wrench in my plan to find a job with benefits.  SSI rejected my claim.  Social Services will not provide training for a home based career nor will they assist with transportation to a job should I find one.  I am new to the area I reside in and have no outside contacts or friends. A car is a necessity to get around here so there goes any grand idea of going to a library or school.  I sit and stare at my 4 walls with 2 cats for company.  My boyfriend has to work lots of double shifts to pay our bills as I am unemployed with no prospects.  We spend about 2 hrs together all week. This is day 298 of my being house bound.  I am desperatley unhappy and do not see a realistic way to get out of this cycle.  I do not want to go on this way as I have always been productive and independent.  I have no desire for this pathetic life that I lead and my heart breaks more each day. I have grown bitter angry and emotionally unstable.  I don't know what to do and don't give myself much of a life expectancy if this situation doesn't change.  I want to take a coding class so that I could work from home credentialed as a certified medical coder as I have worked in the medical administrative field for years.  I am ineligible for any more student loans, we are barely meeting our expenses so saving 5 grand for the class is unrealistic. Though I have Medicaid, I am not eligible for any assistance for job skill through the state.  I hate waking up in the morning and feel more and more grim each day.  I have no hope, optimism, etc for the future.  I give up.  What little bit of happiness I had in life has long since gone with this epilepsy.  Working, driving, having health insurance and spending money are out of my reach. I haven't taken my meds in days and just dont care. 

Rogue
Regular Member


Date Joined Aug 2006
Total Posts : 65
   Posted 8/23/2006 11:24 AM (GMT -7)   

syzygy

Hey, just wanted to drop in a let you know you aren't alone. I think all of us have the times we want to crawl into a hole.  The past two weeks have actually been like that with me.  As cheesy as it sounds, it does get better.  Just hang in there.  You have the desire to do more with your life, and you will.  If you look through some of the posts on this site, people have written about going to school, spending time with family, taking care of pets, doing all sorts of hobbies, etc.  Epilepsy limits some things, but it doesn't change who you are.

It sounds like you have an idea of what you want to do, but aren't sure how.  All of my friends are there who are perfectly healthy.  It's ok, really.

I had a few experiences with the psych ward myself from some really weird auras.  Now that I know that's what they are, I can handle them easier.  It doesn't mean you're nuts, just different.  And different can be a really good thing.


~Heidi Hope~
 
 
"For I know the plans I have for you", says the Lord.  "Plans to prosper you and not to harm you.  Plans to give you Hope & a Future."
Jeremiah 29:11


coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 8/23/2006 6:11 PM (GMT -7)   
Syzygy, stopping the anti-seizure meds suddenly can cause serious problems. You don't want to do that. Talk to your doctor about tapering off, if you are sure you want to stop taking them. He/she can give you a schedule for safe withdrawal.
 
We have all been where you are at the moment and know that it is an absolute nightmare. I have to go "on automatic" every so often because I feel lost and scared and thinking about the future terrifies me. It is necessary at these times to let go rather than deplete your inner resources. You will be surprised how sometimes things work themselves out when you let them.
 
take care,
 
God bless,
 
c&c

Heppy
New Member


Date Joined Aug 2006
Total Posts : 15
   Posted 8/29/2006 5:14 AM (GMT -7)   
Hi syzygy,

Are you still here with us? It is important to stay in touch. First, if you are not approved for SSI, it is because of your doctor. It is your private doctor who says that you are incapable of working. Make an appointment with your doctor and have this conversation with him/her to find out if they believe you should be on SSI. If not, change doctors. Are you currently attending online classes at a community college? One that would supply you with financial aid while you take courses would be best. I don't have all of the details but I do know that you need to take you medications.

Choosing death over the precious gift of life, no matter how tough it may seem, is not the right choice. Whether you think so or not, we need you here to help us, just like we want to help you. Take a few deep breaths and just think about this differently. How many people could you really help right here? Don't cheat yourself or us of the gift you have to be able to share your experiences and compare them with ours. Always remember, we need your help. Don't panic, don't despair, just sit back and take a better look at what is really going on. A new doctor maybe, new treatment, SSI or job placement if possible. Don't limit yourself. open your eyes and take a good hard look at your options. I have epilepsy and I'm afraid to get an MRI because I have lots of headaches. I also have Hep C.

Fear can make some people choose death. I find it very hard to choose to take those awful tests that deliver horrible results. I also have to have a biopsy of my liver done to find out how much damage there is. I hope you will reconsider the choices and direction that you are going. I tried to get SSI eight times before I got approved. A woman who had three open heart surgeries got turned down seven times. It was then that she was told by a friend that she needed to change her doctor. She did and got approved immediately. She told me about it and when I changed my doctor, I also got approved. I hope this helps with your financial difficulties. Hope is not lost. Just open your eyes and let yourself see the options. Hope to hear from you soon.

Heppy, the Eppy

sadfacedb
Regular Member


Date Joined May 2006
Total Posts : 32
   Posted 9/1/2006 2:45 PM (GMT -7)   
Dear S,

Your story is very heartwrenching and has truly touched me. I understand what you are going through, as do many others on this site. I am not going to sit here and give you medical advice, because I feel the above comments have thoroughly covered that! Just please, get up each day, make yourself shower, dress, get cleaned up. Do everything you always wanted to do around the house. Make yourself a little world of your own. I am a very lonely person to. Healing Well may as well be the extent of my social life outside of work, so know that you are not alone. My thoughts and prayers are with you. I know that you are beyond the point of caring, so I will care for you, and so will everyone else here. Hope to hear back from you soon.

Britt

coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 9/1/2006 10:00 PM (GMT -7)   

Please let us know how you are, syzygy, if only a word. We understand totally, and we care.

Thinking of you,

c&c


dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 9/7/2006 5:12 PM (GMT -7)   
Don't give up there. Just hang in there. I applied for SS and it took awhile before I got it. You should apply again and make sure that you don't miss anwering the question. I was told to make sure you don't leave anything blank. I also don't drive and have my wife to get me were I need to go. I sure you boyfriend will help you in this matter. And yes it can be boring when you have to stay home, but just hang it there. Just don't give up. If you need help feel fear to talk to us, thats what we are here for.

Ken
Had My Brain surgery, and I was so scared, but the doctors made me feel good and and I did. They kidded with me before the surgery and before I knew it I was in recovery Thanks for helping me. Mine is on the  left temporal lobe. They say it is deep it my brain.


Rogue
Regular Member


Date Joined Aug 2006
Total Posts : 65
   Posted 9/11/2006 10:47 AM (GMT -7)   
The lines are still open/ Anytime you want to talk, anything you was to talk about. It really is why we are all on this forum. Hang in there! I'm going through the SSI app for the first time now, and am not able to work in the mean time. It felt horrid to get that letter in the mail with the words, "you are considered unable to work due to Nerological reasons". Kind of like telling me I'm nuts, just with a little brittish humor. But I'm looking into online classes myself, and if you'd like working in the medical field, that's seems to be the majority of what's offered. And who know, by the time you're done with those classes and have a degree or certificate, you'll be bring in the bucks, too. Don't worry about your boyfriend helping out. That's what true frinds are all about; being there not only when we smile and laugh, but when we cry until no tears fall, and our anger is as a lion trapped in a cage, well after meal-time. Whether you need to cry or be a lion, please allow others to help. It makes both you and everyone else happier. You are a wonderful contributor to this forum, and we miss your insight,
~Heidi Hope~
 
 
"For I know the plans I have for you", says the Lord.  "Plans to prosper you and not to harm you.  Plans to give you Hope & a Future."
Jeremiah 29:11

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