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Epilepsy / Seizures

Know the dangers of epilepsy death

Do you know anyone in your life who has seizures? If you do, then please read this!

My heart is heavy with grief as I write this letter, but if I can save just one family from going through the hell my family has gone through this past month and half, then maybe our hearts can start to heal.

On June 27, our world was turned upside down. My beloved nephew Tory, 39, was found by his mother, her only son laying face down in his bed. He had died from SUDEP (sudden unexpected death from epilepsy). Ever hear of it? My guess is that you probably have not unless you have suffered the loss of a loved one from SUDEP. None of us in our family had ever heard of it either, and I have been a nurse for 26 years! In fact, Tory had never heard of it as the doctor he had seen never shared the possibility that this could affect my nephew. He never told him!

When asked by Tory’s sister if the doctor (not from Albert Lea) had told Tory that he was at high risk for SUDEP because he suffered with epilepsy, his reply was: “If they do what I tell them to do and take their medication, they will have no problem.” Tory stopped taking his medication because he didn’t like the way it made him feel irritable and mean. Maybe if the doctor had told him about the risk of SUDEP, he would have done things different. Maybe he would have told the doctor and been given a different medication to try. We will never know. He never got the chance!

One in 100 people have epilepsy, the neurological condition characterized by recurrent seizures. Approximately 1 in 1,000 people with epilepsy per year dies of SUDEP. Most will be found in their bed.

Sadly, only after his death did we learn of SUDEP. We were never told. This is unacceptable and I believe irresponsible on the doctors’ part to make the choice for us. So now we are left in shock, with anger and frustration searching for answers. Why didn’t we know about this? Was there something we could have done to prevent this tragedy? How can we stop another unnecessary death?

I wanted to share this letter to increase awareness of SUDEP. Please educate yourself and others on SUDEP by going online to any SUDEP sight. Talk to your doctor and ask questions about SUDEP. Don’t assume your doctor will automatically tell you. Tell your family, friends and neighbor that you know has seizures. It’s too late for our family. I pray it’s not too late for yours.

Source: albertleatribune.com

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7 Comments

  1. Profile photo of Wanda JO Brink

    I have never hear of this untill now thank you so much for shareing this it means alot to me thanks my five yr old has two types of seizures.And this was the frist thing we asked about him dying in his sleep he told us one ina thousand ect but I didnt know it had a name to it so thanks again for shareing this .

    Reply
  2. Profile photo of Colleen Haney Elliott

    My 14 year old son died of SUDEP on July 25, 2012. I wish I knew too!!! I cannot tell u how painful my life is now without my Brian!!! People NEED to know this!!!

    Reply
    • Profile photo of EpilepsyU

      So sorry to hear of your loss Colleen. I lost two close friend a few months apart a few years ago to SUDEP. We do need to educate on this and make more aware. Thanks for sharing!

  3. I am a healthcare provider who also happens to have epilepsy, One sentence that I read on line changed my life. It said, “Epilepsy is magnesium deficiency” If you Google those words, you’ll probably go right to the place I came upon that statement. I’ve made it my life’s mission to spread the word, so to speak, about magnesium. My Grand Mals have been 15 years apart but the myclonic jerking in my left limbs plagued since I had 3 brain surgeries in the early 1980’s. They persisted regardless of which powerful AED my brain was marinated in at the time. Last year I had a grand mal which devastated me psychologically as I thought it wouldn’t happen after being seizure free on Lamictal since 1998. It took many months to get over it. I had the benefit of the internet to research my condition for the first time ever. Several days after taking 1000mg/day of magnesium (never really kept track) I snapped right out of it psychologically. Also, the clonic jerking has stopped 100%, as long as I take enough magnesium. No matter how much magnesium I’ve taken all day, I take a 400 mg magnesium gel cap right at bedtime. If I don’t, I get a mild contraction in my left leg. Work up slowly to 1000mg/day and tell me what happens.

    Reply
    • Dr. John, I would love to know more about your research into this topic of magnesium deficiency. Is this something that you can blood test for to see where you stand? I would love if you email me some of your information! dtjames05@yahoo.com
      Thanks!

    • If you Google the words, “Settling Seizures”/ Dr. Carolyn Dean you will read about me anonymously in one of her blogs. She wrote a follow up blog but it mentions my real name which I’d prefer to not reveal on line. I paid a dear price professionally after giving it up unknowingly to. the Epilepsy Foundation of America.

      I’m a dentist,not a neurologist so please consult with your physician before following my advice. On the other hand, they are very protective of the anticonvulsant industry so be ready to make your own decision.

      Magnesium is stored intracellularly and is excreted through the Kidneys. A urine sample is a far better indicator of Magnesium Levels. A blood test does not itself give an accurate profile of magnesium saturation. Therefore, people with renal insufficiency(kidney disease) are advised to avoid magnesium therapy.If you are an otherwise healthy adult, like I am, taking 1,000 mg. of Magnesium//day is a good place to start. Be prepared to deal with diarrhea.. Just start doing some of your own online research and experiment with various forms of OTC Magnesium. Dr. Dean will highly recommend a liquid product called Angstrom Magnesium. She’s right about it’s superior absorbtion but it is very expensive..Believe it or not, the best results for me come from taking 1/2 tsp of highly crushed Epsom Salt. I put it in Size OO gel caps I buy on line from Capsule King and take 3 caps/ day. You can also mix it with orange juice. If you crush it with a mortar and pestle it becomes a very fine particle which will greatly lessen the loose stools.
      Do yourself a favor, start by going to the drugstore and buy a bottle of Magnesium Oxide before you get into other forms or transdermalof 1,000 mg and see how you do. It doesn’ thappen over night. Don’t take too little of it either. You’re trying to stop seizures.In that regard, think of taking magnesium like you would any aniconvulsant! I take a NatureMade 400mg gel cap at bedtime and have no myoclonic jerking while I sleep. I also take a little Melatonin which they say is depleted by AED therapy Magnesium was the best thing that ever happened to me in my life of battling epilepsy.
      I BELIEVE IN THIS METHOD and would like it to ‘go viral’ as they say.

      Please keep me informed directly at jtdds@veizon.net

    • Profile photo of Debra Sequist-Cohen

      Dr John, I appreiate your comments so much! I lost my sister to epilepsy. She went into status epilepticus after being seizure free for 15 years. For 10 years she lived, severely brain damaged, in a nursing home. She passed away 6 years ago. My 37 year old daughter also has Epilepsy (generalized, like my sister). She is a mother, and a beautiful person (as was my sis…). I am always searching for information in an effort to understand what happened to my sister, and to prevent this from ever becoming my daughter’s fate. This too, has become my life’s mission. Thank you for spreading the word about your personal experience with magnesium. By the way; I understand you are a dentist. I am a dental assistant (just thought that was interesting…). Thanks again Doctor John!

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