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  #1  
Old 04-19-2019, 08:53 AM
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daily life: long read but need help


Hi Everybody, I'm gonna have a break down here and I could really use advice. I was diagnosed in February after having multiple seizure throughout January. My Dr said as long as there is no obvious tumor or damage the reasons why I have them are not as important as controlling them. I saw a 2nd Dr. that looked at my CT and said the seizures are caused by a calcium deposit. But stopped there. He said to keep taking the meds I was prescribed and to see him in a year. I take 1000mg of Keppra 3 times a day. I was having tonic-clonic seizures anywhere from daily to every 3 days. Now I mostly have complex partials. I'm home alone most of the time so I have little way of knowing when I have a "check-out" unless it's long enough that it's obvious. I believe this is because my meds are helping? Anyway My family is not ok with me leaving the house, and I get that but at the same time I need a life. So please tell me, how do you keep your life active. I was an ESL teacher part time and a full time Nanny to 2 children. I was a very very busy person. Then in literally 1 day my world crashed down and I leave my house for 2 hours once a week (my DH day off work).
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Old 04-19-2019, 06:15 PM
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Hi Ksanchez

Sorry you are going through a rough time. I do hope you get some answers with you epilepsy but my understanding is sometimes a cause is never known.

I myself have had it most of my life. I took tonic clonics as a baby/ toddler then I went 21 years seizure free until they returned in 2002 when I was 24. When they returned I mainly took simple/ complex partials with the odd tonic clonic.
I had brain surgery in 2011 and was 2 years seizure free but then the seizures returned so now I'm having focal seizures (partials) again but not as bad or often as before surgery.

I've learnt not to let epilepsy stop me living my life & it's actually made me strong willed. I do have restrictions which I'm fine with but otherwise I won't let it stop me.
I live on my own but my parents are 30 mins away & I talk to Mum daily more so because my Mum likes to chat .
I currently work part time as an admin assistant, my boss always knew i have epilepsy. He's seen me have a few seizures, he is a little stressful to work for at times but really deep down not a bad person.
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Old 04-19-2019, 08:49 PM
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I think it's worth getting more info about the calcium deposits, and what may be causing them. It doesn't hurt to have more info, even if it may not be directly useful to treating or controlling the seizures. There are several different disorders that cause brain calcifications that can then result in seizures, including Basal Ganglia Calcification and Pseudohypoparathyroidism (both of which have a genetic component).

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My family is not ok with me leaving the house, and I get that but at the same time I need a life.
When a seizure disorder is newly-diagnosed, there can be lot of fear and anxiety, not only for you, but also for family/caregivers. It's normal for your family to be scared, and it's normal for you to chafe at their over-protectiveness. I've found that over time, once people have a better handle on what happens, there is less fear and more flexibility. It gets better, I promise.

Try and communicate to your family is that having a certain amount of independence is ALSO important to your health and quality of life, so the over-protectiveness can have a negative effect.

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So please tell me, how do you keep your life active.
Perhaps you could look into teaching online -- plenty of folks out there have ESL needs and might be interested in a private tutor. Some schools that have distance learning programs might also welcome an online TA or consultant.

If you're not up for that kin of work right now, consider taking up a hobby/activity: Photography, gardening, bread-making, chess, yoga, knitting, ham radio...
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Old 04-24-2019, 09:36 AM
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Ksanchez, have a breakdown if you want but I think understanding is what you need not advice. Its not easy getting diagnosed with anything let alone epilepsy but the one thing which will help you is when you start to understand epilepsy, I know you think that is stupid but trust me its not easy. Epilepsy is a problem to be polite, not just for you but others as well including me and I have lived my life with epilepsy. Epilepsy is not a LIFE SENTENCE it is an inconvenience, it does not rule your life or decide your life, it does not make you a worse person or a better person. You DECIDE your life, you and you alone rule your life, you will be no different than you were before this. You have to understand this and then you can start a new part of your life.

Finding out the reason for your epilepsy is a long road, there are some reasons for some people, it can be a result of some other medical condition, it can be genetic, there might be no reason but nobody can say for certain what the reason is only that it is a factor. Personally I agree with your doctor, the reason for your epilepsy is not as important as trying to find the right drugs to try and control the seizures. You will need to know the side effects of the medications you are one and to keep a diary. Did you know keppra can lead to keppra rage.

Its understandable your family are not happy with you leaving the house, they are scared because they do not understand and are afraid for you. You need to sit down a talk with them and explain things and explain how you feel as well. This is just the start of a new part of your life for you make the best of.
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Old 04-26-2019, 04:59 PM
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Hi Ksanchez,

I'm sorry to hear that you started having seizures. I've had complex partial and absence seizures for 47 yrs. and just like you I work in public school as a Teacher Aide.
When I first started having seizures the Dr. thought that it was scar tissue on the right temporal lobe that was causing seizures but yrs. later when I looked into surgery to reduce my seizures my Drs. found damage so deep in the brain that not a single test would show anything and maybe this is what's going on with you.
Be sure to keep track of your seizures get a calendar and write down each time you have a seizure write down the type of seizure and what time it happened. Also make a note if you are sick or if there's a low pressure in the weather these 2 things can sometimes trigger seizures for a person.
As crazy as it sounds I started taking 2 Tablespoons of apple cider vinegar with mother in it in the morning before breakfast and my seizures have reduced to the lowest in my life. Also using cbd (medical marijuana) has helped me a lot. I wish you the best of luck and May God Bless You!

Sue
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Old 05-15-2019, 01:49 PM
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KSanchez,
I send my empathy to you in a big way. This is not fun hitting you so hard and fast. If it were me I would hook up with a hospital that has an epilepsy clinic and does video eeg monitoring and has epileptologists to treat you. They will point you in the correct direction and give you what you need for medication. As far as your family goes fear is understandable and it is so great they love you but you need your independence also. With the seizures you are having you might want to take it easy especially with tonic clonic and complex partial seizures (both of what I have). Do you get any warning at all? I do not and it has kept me from driving the last 3 years. My seizures are better controlled now so I do go out with rides from friends and family but with all of the meds I'm on I feel somewhat drugged. Keep track of all of the feelings you might be experiencing like small seizures or auras. It really helps the doctors and you. I never took Keppra due to some of the side effects and was told I needed an older drug Depakote and Carbatrol. They both work well and I have a vagal nerve stimulator. If you go to a hospital specializing in epilepsy they will give you many options and not just send you on your way. At least that is what I have found to be true. So go on the Internet and do a search and see what you come up with. I attend Chicago at Rush and they are very good. I also get regular epilepsy protocol MRI's. So good luck and stay in touch. Jeanne
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Old 05-15-2019, 05:13 PM
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Hello KSanchez. I know exactly how you feel. I get simple and complex partial seizures. I'm on 400mg of both Topamax & Zonisamide, and still get breakthroughs. I completed a BS in Information Systems w/a double major in Economics, but could never use it thanks to the seizures. A short time after I tried to start working, the complex partials started. I've had simple partials since childhood, but they don't cause problems. The complex partials have put me very in dangerous situations & caused me to burn myself severely (second & third degree) at least 8 times.
Now, I don't cook w/o someone present. I keep myself busy by doing puzzles (word & jigsaw), watching tv, and listening to music. I also collect stamps & coins, and enjoy photography.
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Old 05-20-2019, 08:09 PM
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I really like what Sabbo said about staying safe and doing other things to stay fulfilled. We need others and need a place in this world but also need to be safe. Jeanne
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Old 05-21-2019, 05:18 AM
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I've often said that anyone who complains about having to do a lot of things for should try to live for one week with the restrictions imposed on many/most of us. That means no driving, & not using the stove--eating things cold, room temp, or only warmed in the microwave. Their only contact with other people (unless somebody came to their house) would be their phone, computer, & TV. Now, how long can one stare at/watch screens and videos?
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Old 05-25-2019, 06:05 PM
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I understand calcium vit d can do it with some people they found same with my knee..As for your family not being happy well you on treatment and unless you want be prisoner in your own home carry on being what you are seizure will happen anywhere ya takes ya chance we all do could walk under a bus thems sort of chances we all take.some people have better perimiters than others but they minority.They need education get some pamphlets show them.....I know what it like
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