Seizures Can Tear Your Life Apart

The unwritten oath of a mother is to protect her child and after thirty-nine years, I still cannot do that in the seizure department. That is a hard pill for me to swallow.  As I write this, I am searching for a new neurologist. 

Did you know that 25% of children who have autism also have epilepsy, and 25% of people who have epilepsy are unable to control their seizures with medication?

My son, Brandon has had seizures since he was nine years old.  Today, he is thirty-eight and he still continues to experience them.  He has been on numerous medications and we are running out of options.  Two months ago, he was put on a fairly new medication for adults who have generalized epilepsy.  His neurologist said he has had great results with this newer drug called “Vimpat.”  Unfortunately, Brandon is still experiencing seizures and having more than usual.  Brandon feels both disappointed and depressed. 

The other day he called to tell me he had another seizure and was taken to the hospital again for the third time in a week.  He said, “I hate my life, I hate my life, why me?”  After almost thirty years of trying to stop his seizures I could understand how he felt.  Thank God the next day he woke up feeling better and was ready to start anew.  He never carries his old baggage from one day into the next.

He continues to be my finest teacher. 

 

 

 

 

Amalia Starr on Twitter
Amalia Starr
Mother to an independent autistic adult son, Motivational Speaker, Author, and Creator of Autism Independence Project. Book Amalia to speak, call 800-939-1046.
Amalia Starr

Amalia Starr

Mother to an independent autistic adult son, Motivational Speaker, Author, and Creator of Autism Independence Project. Book Amalia to speak, call 800-939-1046.

0 thoughts on “Seizures Can Tear Your Life Apart

  • October 23, 2011 at 2:27 pm
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    Good luck to you too.  I hope soon you can find out what you have and why you have seizures. Yes, I agree with you these seizure medications often have numerous side effects. Between the seizures and side effects it is extremely difficult to deal with. Take care!   @sleevelessheart@xanga – 

  • October 22, 2011 at 2:21 am
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    I’m not sure what’s happening to me but I’ve had terrible migraines for about 4 years now. I have also begun to faint, have extreme dizzy spells,, and just blank out and lose focus of what’s going on around me. My neurologist tells me that it is absent seizures, but I’ve taken numerous tests and nothing has shown up to confirm the diagnosis. I’ve taken a medication for it but it ended up worsening my depression instead. It’s been a LONG journey trying to figure out what it is that is causing my neurological problems. My little cousins have epilepsy as well. One is three and the other is nine, but has been epileptic since he was about six. They are from Japan, so their method of medication and treatment is different. I do see the frustration in their faces, though, because the medicine makes them sleepy and disoriented (unfortunate side effects). I, too, am frustrated trying to figure out what it is that I exactly have. I feel for your son and now I know how my mother must feel watching me go through one neurological appointment after another. Good luck to you and your son! All the best! 

  • October 21, 2011 at 9:22 pm
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    I had 5 seizures in my life. My first two happened within a 10 minute span. It was when I was 14 and got my tetnus shot. My 3rd was when I stepped on a hairdryer plug and it went in my foot. The 4th and 5th happened at beauty school..I had just put a new blade on my razor and sliced the top of my finger so bad that a massive chunk flapped back (sorry for the gruesome mental image). I’m lucky enough to only get them when inflicted in major pain, BUT I don’t know when it will ever happen and if I can get shots again without having a seizure, it’s not something to mess around with, so I act like I’m in a plastic bubble and stay clear from anything sharp. I’ve already decided I will never have children. 🙁

  • October 21, 2011 at 4:46 pm
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    Yes, I understand how you feel.  Happy to hear that your sister can be seizure free for one to two years.  I hope that will happen for Brandon soon. Epilepsy education is a necessity.  As long as we keep talking about it others will too. Sounds like you are a great sister. Good luck with your studies. @sunflowersforlove@xanga – 

  • October 21, 2011 at 4:34 pm
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    @amaliastarr – This was a very touching entry, and I’m sorry it’s been difficult.  But my comment has to do with your replies to commenters… you should click on the “reply” button beneath the comments, as I have done here, otherwise folks who comment on your post will not know you have responded to them.  Just a helpful hint, because I think what you’re discussing here is important, and very much worthy of further conversation.

  • October 21, 2011 at 3:52 pm
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    My sister has had seizure since she was about 2 and now she’s 24. They started out as petit mals, but around 12 they became grand mals. It took awhile for them to find the correct medication and dosage for her, but she’s on Kepra and Zerontin. She can go about a year and a half to two years with no seizures, but certain factors contribute to them like drinking or staying up late. I always hope more research gets done on epilepsy one day. It seems like a lot of people don’t understand what it is. I always do class projects on it since I’m a Health major to try and get people to be more aware. I’m always amazed at how many people still think a person can bite their tongue off during one or that they need to put a spoon in their mouth. 

  • October 21, 2011 at 2:10 am
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    Thank you so much Rory for your kindness and understanding.  I wish you lived close by and Brandon had you for a friend. You are an amazing person.   Yes, I too am in awe of Brandon’s determination and how he is able to continue on with a positive attitude.  Take care.  

  • October 20, 2011 at 9:46 pm
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    Thank god, I don’t have epilepsy! However Brandon does not really hate his life, not all of it, he hates that he has seizures, but they do not occupy all his life of even the majority of his time. Much of his life is worth living, and much consists of the same ups and downs as other people’s. As long as Brandon is managing to live more or less independently despite his severe challenges he holds open a possibility for others.

    Being just off anti-depressants I know the sensation of hating my life and no one should have to feel that way! However Brandon feels about his life it remains a source of inspiration and encouragement to the rest of us when we hit our bad times. I love that somehow after every setback,he keeps on dusting himself off and carries on.

  • October 19, 2011 at 1:19 pm
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     Thank you so much for sharing.  You are a brave soul. I hope to God you can find the correct or proper medication that will stop or lessen your seizures. Yes, having epilepsy is extremely difficult to deal with. Brandon was also on Zonegran for years.  He hates taking medicine.  He likes the more natural way so he is doing both. Yes, we too  pray for a cure soon. I wish you all the very best.  Take care!

  • October 19, 2011 at 1:12 pm
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    I have had seizures for two and a half years now.. I tried to get my neurologist to put me on vimpat after hearing great things about it but he claimed insurance wouldn’t improve it because it was too new?  Weird.  Yet the vaccine that caused me to start seizing in the first place was 100% approved and that was “too new” too!!   The longest I;ve had in 2 and a half years of seizures, is 3 weeks freedom.  I had that til December of this past year and then got kidney stones due to my wonder drug, Zonegran.  Since then it’s been back to seizures everyday.. and the medications I’m on now took away my “aura” so I’m constantly falling and hurting myself. 🙁 Broken my wrist 5 times since January, at one point had both wrists broken at once.  Got 3 concussions in 6 days this past week and lucky I didn’t kill myself there!! And 2 sets of head stitches in these same 6  days.. In the past month I’ve been to the ER for more seizure related things than I have in the last 2 years. 🙁 It sucks and it’s hard to deal with both for the parents and the person having them. They’re really discouraging!   I’m 21 and can’t drive or do a whole lot because of them and it really sucks.. but we all just have to look on the positive side of life and pray and hope for a cure!

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