I'm Dre have had eps did not work now an rns and trying.epidolex still 2 to 3 week breaks and now the new cell design I am ready to try something that works! ❤

so the brain have to be exposed to put in the stem cell or can it be injected through intrathecal or intranasal?

DR Tonya McDonald John Hopkins hospital 🐐

All the best with your goals. You are amazing. I am 74 and was diagnosed with epilepsy since 2012. I waS already retired but can imagine how it would have been if i was younger. The seizures are controlled with lamotrigine. Thank God. My husband is so wonderful and knows me better than anyone. It is hard to tell other people who i meet. Epilepsy is an invisible disease but i believe it makes us more understanding and less judgemental of others. It is one of the mysteries of life. I give all to God. He takes care of us. God has given you a special gift of insight to help others. Your story is very inspirational. I don't have anyone except my husband who even cares to listen. I think there has to be more awareness Thank you for sharing.

Embrace 2 and the Epi Monitor

Keep pushing the awareness 💜

Where were these videos before I found out the hard way 😭

I am a new subscriber. Even my daughter has epilepsy.

I will hear music but can't figure out the song

Hello, my name is Jeffery, and I was hit with a baseball in the head at five years old I am 58 years old still living with Epilepsy. The Doctors do not talk about SUDEP, and it is so sad. I am so sorry for all you loses God Bless you and all your family.

Please find a cure for epilepsy many people suffer from it we can't live a normal life because of epilepsy

I just had my first tonic clonic seizure a week before my 26th birthday after over a year of suspected focal aware seizures. I guess now the journey begins 🦋 Thank you for sharing your story!

I have a TBI I get migraines almost everyday, with my right arm kind of paralyzed but recently I been getting like stroke like symptoms or eperlepsy symptoms , I don’t want to live like this anymore I want to so desperately die, I’m also starting to choke on my own saliva.

Eat ketogenic diet include coconut milk in your diet.

Mike still looks so young! I hate he's dealing with PTE and CTE. People just think the world of him. And although he has been diagnosed with CTE, he's still pretty sharp.

A seizure during a conversation? Wow. For me, the most insane confusing part of the seizure is during the aura/leading moments is the inability to find words to explain, understand, or even feel fear.

💜

How frequent do you get your hair cuts and shave your beard. I find that when I have longer hair and find excess friction, especially in cold dry air when static electricity generates faster I’m more prone to focal awareness. The other controls are having massive carbohydrate intake higher than usual which leads to higher stim. Have you tried committing to a strict keto diet.

Am In Uganda, how can people like me be able to get this treatment?

In 02 I was 9 years old at the time i had a dirt bike accident in a coma for 9 days in 05 I noticed i started having seizures 09 I had surgery on my right temporal lobe and still to this day I have to take medicine and since March I've had 12 grand mall seizures and looking into doing the rns surgery next has anyone on here done the rns surgery

Frisium

I have seizures and I'm chubby and I really want to lose weight but I'm living in a negative environment

Thank you all for your advocacy.

A meaningful encouraging p/cast!

I'm an Epileptic, The worldly Funds will never let that happen; there's no money gained within it. Love for all. Never let be forgotten. Epilepsy is the Only "Sacred Disease"/"Holy Disease" within the population of Humanity.

Stay strong,TQ 4 sharing! I'm epileptic too.

Wow! This doctor talks so fast!

Same!!!! Every 25 days

This will show the different effects meds have on different people. I didn't love Keppra.

❤ your amazing! We have limits but still have life!

I have found the biggest challenge here to be getting medical staff to move towards this.We have been waiting two years to get in with a dietitian and the keto clinic at Oklahoma university childrens hospita. Multiple appointments and they keep kicking the can down the road and telling us to do pharmaceuticals in the meantime. there seems to be zero desire to help us address this issue through keto diet despite the fact that they allegedly have a program for it

Even though it's hard for me to know the difference between epileptic and non-epileptic seizures I will say that I did suffer a stroke when my mom was pregnant with me and it gave me seizures

My son was diagnosed with Infantile Spasms on 10/6 in the ER...We brought him there right away when we noticed the onset of the spasms (eyes and arms roll up ward in clusters)...CT scan and blood work came back normal...first EEG was normal...then the VEEG over night showed hysarrythmia...Then did MRI...that was clean....10/8 started Prednisolone 20mg twice a day....My son has been seizure free since 10/13...10/14 EEG showed 99 percent normal...The genetic test came back normal accept for this: KCNH2 c.563C>T (p.Ala188Val) heterozygous Uncertain Significance...Our has OKed us to start my son's wean off of Prednisolone on 10/23 (5 days 5ml twice a day, 5 days 3ml twice a day, 5 days 3ml once a day, then finally 3ml once a day every other day...My wife and I are super scared of all of this but are praying that the spasm do not return...Any information you have to help would be greatly appreciated! Thank you for all that you do!

I’m not the man I once was before I was diagnosed in 2022 it’s ruined me as a person and I don’t know if I will ever recover going on like this, please find a cure😭

I believe there will be a cure 1 day!🤞

I have never seen that seizure before because that’s a new seizure and that was really scary and it went longer then you guys thought because it scared everybody in the room with her and she just needs to have a sleep now after that massive seizure I don’t know if she’s going to be with it during her therapy session just after she had that seizure

I love you momma❤😢you're a star❤❤❤

I'm hoping all seizure patients to hv full recovery. Living wf it is a struggle. Walk on wf faith n pride...

Thank you for this conversation. I appreciate the information. My good friend's son has just been diagnosed with Infantile Spasms and I am trying to learn everything I can about it so that I can be there for her. Especially because, as a new parent, stressed, scared, over tired, she is worried about not asking the questions she needs to ask.

Physicians are the handmaidens of the pharmaceutical industry. In the 1980s I was executive director of a Canadian community based epilepsy association staffed by professional social workers. We ran a program modeled on "Taking Control of Your Epilepsy" developed in Santa Rosa California. While the program was acknowledged world wide (Russia, Australia, Western Europe) our local neurologists put pressure on our funders to stop funding our program. Our teen and adult clients had tremendous success by learning to recognize auras, managing stress, etc etc and reducing and in many cases eliminating the need for medication. We provided research articles on the ketogenic diet, but in those days it was difficult if not impossible to find dieticians or physicians who would collaborate with us to support our clients. Physicians caused a great deal of stress for our clients, buy denigrating our program and inculcating fear and guilt for participating in our program.

It was nice to be a participant in the 60 Minute segment. Hopefully it helped build up and encourage other families in similar circumstances.

You have less frequent seizures. Some individuals may struggle without seizures. The burden of normality.

Had first seizure as a baby then had them thru childhood. I stopped having them around 30 but had one in October 2022 at 61 first one in about 30 years then another one in April of 2023. Im back on meds after many years on nothing I take keppra for them.

Thank you for providing this insightful look into RNS Devices. Where can I find out more information about the durability of the RNS device? High impact sports are removed, but can I still play soccer or wrestle on the ground with my children?

Yo tengo epilepsia

Former seizures guy she need tip see thing miss.

Thank you so much for this video. I’ve had seizures for 22 years now. I’m 64. For the last few months, they’ve been progressively getting worse. And I’ve been trying to get help. (My neurologist retired a couple of years ago and there are, literally, only 3 other neurologists within driving distance…and I’m on waitlists for all of them) This week, they’re at the point I’m having about 6 a day (petit mal’s). I’m exhausted and scared. Really really scared. I’m even scared to sleep at this point.

I might talk to my Doctor about this

Please do research dnm1 and nsf gene .

I was first made aware of Sudep by the paramedic who attended to my son. We have not been bereaved but are aware of the possibility. We don't live in fear but are thankful for every day we have him. We appreciate this awareness and send condolences to all in this video all the way from the UK.🇬🇧 God bless you all. Xx