SUDEP Perry Family Video

[@danielleturner2404]

Sorry for your loss. Thank you for your story

[@Mica-e4p]

Thank you for loving your beautiful daughter with epilepsy and for talking about SUDEP. I turn 62 on March 8th. Woman, A's college, former paralegal, never married and no kids because of my life-long epilepsy. No drugs/drink/crimes. Just epilepsy. My (dysfunctional) family has always punished me for being an epileptic. Most of them, including my divorced parents, are now dead. They didn't care about me, nor helped me. That dysfunction has carried on with my identical twin sister, who treats me with disdain and contempt for being an epileptic. Yr 6 homeless in my car, also unable to drive due to epilepsy and I must be driven by others. My medical team always is stunned every time I am hospitalized with a tonic clonic (grand mal) seizure that I don't have any help.

[@JulieR73]

I lost a dear friend to SUDEP. I miss her so much.

[@aliciastewart3503]

I lost my son to sudep 8.8.22. He went to sleep and never woke up. We had such a wonderful day that day. My heart is still so broken.

[@aleesharenea1334]

So sorry for Your loss😢😢

[@Value_Pilgrim]

I lost my younger brother to SUDEP on 28th May 2023. He was eating his dinner, having an ice cream and then started coughing and went to the Bathroom and passed out. We got him to the hospital in time. He was still alive and they put him on a ventilator and stabilized him. Moved him to the ICU, then he had a second "event" as the doctors called it and was gone in minutes. I and my family are stunned. My brother used to run marathons, play basketball, had a BMI of 22.5, never smoked, never drank alcohol and used to eat extremely healthy food. But he had sleep deprivation disorder. He was only 55 when he passed away.

[@dazmindleon]

I am so sorry that your brother had to go through along with you and your family. Thank you for sharing. I don’t like this at all. I started having seizures and doctors dont really seemed concerned or want to help. There has to be something they can do to stop seizures completely and find out what’s going on even though the person may seem healthy there has to be a cause for the person having a seizure

[@Value_Pilgrim]

@@dazmindleon Thanks. I am sorry to hear about your affliction. Things which will help (based on our experience) : 1. Stop coffee and other stimulants (Matcha or Chamomile tea etc are ok). 2. Stop eating sugar(chocolate, cakes and other things)and carbs. Shift to a Keto Diet or if needed shift to LCHF diet. My brother couldn't stop eating chocolates and carbage stuff..his condition deteriorated primarily due to excessive sugar, carbs (the day he passed away he had a large bowl of ice cream although his hands had been shaking recently due to nerve damage). 3. Make sure to take MCT oil or Extra Virgin Coconut oil regularly. Cook foods in butter, ghee, lard or Coconut Oil etc...use Saturated fats and avoid PUFA or MUFA oils as far as possible. 4. Try to get a full night's sleep as far as possible. My brother used to like staying awake till 4:00 am and sleep barely 4 hours. Brain needs a lot of sleep to recover from the excessive thinking most epileptic patients are prone to do. You can use Ashwagandha 500 mg pills to destress if you are unable to sleep. It's not a drug. It's an herbal medicine or adaptogen and its non-addictive. 5. Try to learn Meditation or some form of CBT to stop excessive thinking, worrying, anxieties and other mental fluctuations. The main problem is being hyperactive, excitable and *OVER THINKING* The Doctors are trained to look at symptoms and treat symptoms rather than the root cause. So they do not know what to tell you. At the most they will prescribe anti-convulsants and other allopathic stuff which will not address the root causes. A bit of discipline and some care can help you lot.

[@dazmindleon]

@@Value_Pilgrim thank for these tips 🙏🙏

[@dazmindleon]

@@Value_Pilgrim yes thank you again this is so helpful GOD Bless you and your family 🙏

[@rosejune1995-r7t]

I also have JME. I didn't know that JME could cause me to die from SUDEP. With how fast the seizures are over it never crossed my mind. I sleep on my stomach more than I do my back or sides. I've been seizure free for 8 years in February, but I'm sure they could start up randomly again. I'm so sorry for your family's loss. 💔

[@johnpiscitello6204]

I’m sorry for your loss what could you have done differently?

[@atonewithnature_]

My partner died of this apparently in 2005, he was never told of the dangers of his medication was a black box medication and killed 112 people that year. He had an enlarged heart, they said it was stress.. anything and everything apart from the medication. It was called LAMITROGINE rebranded as LAMICTAL. He was on the new medication for not even 6 months before he died, his face had swollen, his hair was falling out, he was passing blood when he went to the toilet and still they didn’t tell him that all these were side effects . Please, please I beg you check the medication your children are being given . My partner died on Dec 27th 2005 and I regret every making him take his medication. People don’t understand that that medication can cause death itself

[@stephanieann622]

Thank you so much for sharing this information. I’m so sorry about the loss of your partner. It has to be so incredibly difficult. I’m 51 and almost a year ago I started having issues. I haven’t been officially diagnosed but it seems like a lack of sleep is triggering them. I lose my memory every time. I’m anxious to see the Neurologist so I know what is happening to me. I can definitely tell you that I will be doing an incredible amount of research on any medication they prescribe. Thanks again sweetheart. I’m praying for you 🙏

[@chanabayla1823]

I'm on lamitrogine. I have a heart issue and epilepsy and it's the best thing since chocolate cake

[@atonewithnature_]

@@chanabayla1823 You do know it has a black box warning for people with heart problems ? For sudden death ? Are you crazy ? They even rebranded the name as people were dying so they changed name in the hopes people wouldn’t connect the two. I’m praying for you cos your GP shouldn’t have even put you on these knowing you have heart problems. Blind faith in the professionals who don’t care at all about you

[@chanabayla1823]

@Bodycontouruk I'm w the epilepsy foundation and I have mitral valve prolapse which 80% of women and 30%of men have and don't even know they have it. It's not considered a major heart problem and everything is fine as long as you're closely monitored. Many take this drug not just for epilepsy and not everyone dies. U can die of anything or nothing. When it's your time it's your time but, if this is the drug that's controlled your seizures u must take it because the #1 cause of SUDEP is uncontrollable specifically full blown seizures and then it won't be a maybe you'll die it will be more definitely that u will and if u really knew the drug, u would know that it was Lamictal that had the major warning because some, even those without mental issues tried to commit suicide. Not the generic brand lamitrogine

[@rosejune1995-r7t]

@@atonewithnature_ I have been on it for almost 10 years and never had a problem with it, but I don't have heart problems either. I'm sorry you lost your partner 💔🪽😇🙏

[@aliciastewart3503]

I asked my childs neurologist was can you die from epilepsy and she said no. If the person has a seizure and falls and hits their head or gets hurt during a seizure perhaps but epilepsy itself wasnt fatal. Thos is so sad

[@gokuvegeta3163]

Sorry 😞