Epilepsy Community
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Avatar universal

Epilepsy or Seizures left untreated for 30 years?

What can or does happen to people whom never get any treatments for seizures in years?  What could happen to a person whom had to wait for years to get diagnoses of Epilepsy and never got any treatments after-wards?  Supose, a young 21 yr old go came down with Complex Partial Siezures and never recieved any kind of treatment for over 25 yrs, what could happend to this person along the way?

I have looked for information on this all over the web.  I have found no information on what happens to the human body when they never receive any treatment for seizures after decades from the time they were diagnosed. Does anyone on this board know any answers to these questions?
7 Responses
Avatar universal
My mother has epilepsy (and if you read my posts, my twin does too).  She has had epilepsy for nearly 42 years- diagnosed at the age of 5 after suffering a severe case of the german measles.

She has taken meds on and off all of her life, and has not taken any meds at all for close to 5 years now. She has also been seizure free for 5 years, and feels great.

She gets occasional migraines, and has fatigue (probably from lack of exercise) but all in all is a healthy woman.  She is very adament about not taking her meds because she has seizures very seldom- and she noticed that she actually had MORE seizures while taking the medication- averaging 3 every year- VS being seizure free for years at a time without ANY meds.

My advice? Listen to your body. It is always talking to us. I am a firm believer that just because you have epilepsy, it does NOT by any means, mean that you need to take pills every day-- especially if you can control it WITHOUT meds.

Its all about how its controlled, and how often the person has seizures. I would venture a guess that being on meds for 30 years for this person, by now, would have caused some sort of other maladies in the body- liver decline, bone density problems, Vitamin D deficiency (many epilepsy meds cause this) so it's all about the trade off.

Is the quality of life good without meds? If it is then why take them?

But, if the quality of life is affected by the seizures, meds can seriously change your life. (as in my sisters case.. without meds she would not be able to function).

Hope that helped.
Avatar universal
In 1975, got serious hit over top right part of my head.  I lay on floor, I do not know how long before receiving help. Took 6 -10 stitches to close wound. Six months later started having seizure activities monthly. I was on active duty military. Complained to doctors and was given no test. Doctors refused to believe my statements and wife statements.
1975 -1982, no treatments  for seizures or anxiety which developed later.  1982 - 2008 no treatments for Agoraphobia, Anxiety, or Seizures at any VA Hospitals.  VA Administration refuse to admit I even had Epilepsy or Anxiety or Agroraphobia.  To admit I had these disorders would have to pay me from the time of the active duty service.  They would have to pay me $850,000. in back pay right now.
Since, 1975 to present time.  Months where I would be house-bound and constantly having to worry how my two children and how they were going to eat or clothes on their backs. I could not find employment anywhere aft discharged. I was looking older than my staed age. Sometimes, I would have remissions and without warning the seizures would start up again.  Panic Attacks, Agoraphogia, and seizures would keep me home again.  All I had to try to live on was Welfare and food stamps fro the first 7 years after I was discharged. In 1989, I was examined by the Western Neurology Group of Denver, CO.  They told me, I had Complex Partial Seizures for a long time in their medical opinion and they started me on Tegretol a few years later, they took me off the Tegretol and refused to give me anymore medication.  I stilll have and always have had at least one seizure per week since 1882 to present time.  Some years were worse that others throughout my life so far.

I have medical documentation from military about head injury 1975, 1977, and 1981.  Still no civilian doctors, military, or VA Hospita. doctor will accept their very own findings. I have two cardboard boxes of medical documentation of my head injuries and treatments for head injury types of treatment.  Each time, the doctors would give me treatement for Anxiety and seizures but, would not put the words Epilepsy or Generalizied Anxiety or Agoraphobia down on paper.  Go figure.  The US Government. will not given me any further help until I get a government doctor to write down on paper officially that I have Epilepsy, Anxiety, and Agoraphobia.  In 2007, the VA Hospital and Civilian Hospitals around my home in Colorado told me there would be no more medications sent my way until I can get a government appoved Neurology Group to put down in writing I have  Epilepsy, Anxiety, and Agoraphobia.

All three of my Ex-wives have all left me and I have had to take care of my children in the past time.  I have one child left.  He has Autism and must be looked after for life. I cannot leave the home for the last 8 years now.  I have Grand Mal Seizures now days every week now.  My oldest son has to leave the home and do all  of my shopping for food and clothing.  I am now totally house-bound.  Tell me that all this wasy not somekind of government punishment. My ID card expired 3 yrs ago and, it takes waiting in line for 4 hours to get a new one.  My Agoraphobia and Anxiety want let me sit down that long to wait.  In Colorado they want give you no kind of medications without a current state ID Card.  The VA Hospital will not send out a home doctor without being recognized by the US Army as an official Veteran of the US Government.  I received 3 honorable discharges in my lifetime.  As my Disabled American Veteran Lawyer states, they (US Government) wants you and others like to to lay down and die because, they owe you guys too many back pays in dollar amounts.

This is how it effects me on daily basis.  Three head injuries and worries on daily basis on how to pay for food, clothing, and shelter now and in the future.
Avatar universal
Wow, you have quite a story.  The part where you mentioned that they gave you Tegretol, then stopped, really confuses me. Were you having normal EEG's? Were you seizure free for an extended time, and is that why they cut you off?

Would it be possible for you to make an appt. at a normal hospital to receive meds? Maybe make an appt with a neuro and tell them your seizure history and that you need to be on medication...? Is it that you HAVE to go to a VA hospital, or that you dont have insurance?

First things first. Get that State ID card. If you have panic or anxiety- try valerian root for the day. I dealt with panic attacks for 2 years, and after careful, careful research and exercising the whole "mind over matter" thing, I got them to go away on my own.

It's helpful when trying to rid yourself of pain attacks to understand the fight or flight response and Amygdala, and how the hormones in your brain that trigger the adrenaline rush CAN be controlled by your thoughts! They truly can.

Sounds like the panic disorder needs to be at least temporarily dealt with before you can go out and face the world and deal with getting an ID and all that stuff.
Avatar universal
"It's helpful when trying to rid yourself of pain*** attacks to...."

I meant to write PANIC ATTACKS
Avatar universal
First off I have to take the defensive position here.  I do not make mistakes in typing out words on purpose. Remember, I had three head injuries while in the space of 10 yrs. Two on top right part of head and one on right temple area. Since that time, I have had problems with my hand writing and typing. Sometimes I misspell words, leave out letters, and sometimes I leave out whole words.  I have to constantly go back over my words and use the back space key constantly. Can we say brain injury again.
I am now and have always been totally disabled since leaving the military service in 1982.  I have not worked any where since that time. Agoraphobia, Anxiety, and Grand Mal Siezures in 1975.  Back during the 1970's and early 1980's you could still serve in the US Army even if you had seizure disorder.
My Agoraphobia has been going on too long to be able to just pick up and leave the house or front yard when ever I feel like it.  I need a therapist and medications to be able to go back into riding in vehicles again. At present time, I cannot ride in any vehicle down the road going any distance. I get nausea, disorientation, which leads to confusion and panic attacks.  Cars make left and right turns and they go up and down hills.  I become disoriented immediately when that happens.  I can spin around in my swible chair and on second round, I do not know my own name and if I stood up, I would fall flat on my face. I cannot watch television if the camera is moving in an odd pattern or diagnally.  I cannot ride even in an amusement ride of any kind because of the disorientation and confusion.  
Disorientation leads to confusion and that leads to panic attack. If the panic attack last too long it sends me into a grand mal seizure.
I am currently doing the flooding method to help relieve the Anxiety and get some exercise to boot. The flooding method is where you walk as far from the house as you can get before you start to panic and, you do the same in the other direction.  I always walk in a straight line back and forward only.
I cannot stand up straight and look up or down while keeping my head straight. My eyes give me imediate dull pains. If I look straight ahead everything is ok.
The state ID card requires me to ride in my sons car for a very long distance and, I have to wait 4 hours after getting there.  The VA Administration said they would send me out a doctor to my home every month once, the VA declares me a disabled veteran.  They went on to say they would provide a therapist as well if needed.  I have been waiting 26 yrs now for their decision on my claim.
Currenly, I have medare for my insurance but, without State ID Card it is useless to me. I currently have two large card board boxes stacked full of medical records stating where, how, and when I was hurt both military and civilian recorded documents.  
So far the VA Administration will not accept any of my medical records tests results. They will not accept the US Army doctor medical reports as well.  I currently take herbal medicines and vitamin suppliments to help controll my Anxiety and Epilepsy.  I still have a grand mal seizure once a week though.
Avatar universal
Well, if you cannot leave the house at all, for any reason, then it sounds like you will have to live with this for the rest of your life, and never get to the doctor because you cannot ride in a car.

I'm assuming you came here looking for a solution.  Instead of naming all the things that continue to debilitate you, and make it impossible for you to make progress, there has got to be at least ONE thing you can do to help your situation.  So instead of reinforcing why you CANT do something, try naming one thing that you CAN do, or at least TRY to do.

Otherwise, you are SOL.

You are negatively reinforcing everything. You have shed no positive light on your situation, nor have you attempted to come up with a solution without immediately saying it would be impossible for ________ reason.

This makes it very difficult for anyone to say anything even remotely helpful.  Do you WANT to change your situation. It doesn't sound like you do.
Avatar universal
I do have possitive things that I can do to help myself. The only thing wrong is the local, state, and federal governments are making things hard on me.
For instance, I found life easier and some what free of seizures by taking my vitamin suppliments.  I try to get plenty of rest (8 hours) a night. If I do not sleep during the night because of seizure activites, I sleep during the day time.  I found out what foods that do not agree with me and avoid them and that helps too. I have bought an LCD monitor instead of a CRT monitor.  That helps me, too. I do the flooding method outside my house in the drive way and my street in front of my home.  Each day I walk as fast of a pace up and down in front of my house, each time trying to walk further.  But, there is always that invisible wall that says this is a far as you can go mister.
The problem is the federal governments sends out their little spies. They come up to my drive way and take pictures of me when I leave my front door.  When my neighbors see them, they stop and ask these guys questions.  Each time they are either working for the VA or Social Security.  They are looking for any excuse to take away my Social Security Disability checks.  That keeps my mine on a negative spen, having to worry if they are going to take my only support away.  For the first seven years after my military serivice, I had to live on $150.00 from Welfare and sometimes I never even got that much. Tell me that you could survive on that much money and two children to feed and cloth whom depend upon you. I was a single-parent during all that time.  I still am a single-parent at the age of 54 yrs old.  There could be a regular doctor come out to my home every month as they told me many times.  The only problem is the US Government want declare me a disabled veteran.  So, the doctors cannot come out to help me like they told me.  That  is the negative put on me by the federal government. The local government will not come out and make me a state ID card because, I have not been declared a service connect disabled veteran, yet,.
So you see, I have taken many possitive steps to help myself out  but, for every possitive step I take the governments try to stop me at every level.  I am trying to live within my current inviroment but, the local, state, and federal governments  make it hard road to travel. Have you had any children to depend on you while sick? Have you walked a mile in my shoes?
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