#epilepsysucks

[epilepsy-and-me]

[svasthvida]

Transforming Lives Through Ayurveda: Svasthvida Epilepsy Treatment. Find Seizure Relief Naturally with Expert Ayurvedic Care. Start Your Journey to Wellness Today for a Brighter Tomorrow!

Contact Us to Begin Your Ayurvedic Healing! ➡️Call/WhatsApp: +919914321828 ➡️E-mail: info@svasthvida.com

[dnorthernlight]

Epilepsy-Does your road end here? How do you see where you’re at? Are you discouraged with what life has handed you? Or, have you been able to cope with your circumstance? You might say, “Ya but…” I get it. That’s what I, too, said for decades. It's time to see everything with different perspective. It’s time to shed some light in the whole situation and not just your own. I'm not saying that you should just put everything you've gone through aside. What I am saying is that you have the ability to see greatness despite your demise. Don't allow your darkness to overshadow your light. All you need is a shift in the way you think. What if you had family and friends who surrounded you? What if you had the ability to go for a walk and admire Mother Nature’s beauty? Look beyond your situation and you will find abundance. P.S. Want to learn more about seizure control? ***Join me for a free Masterclass.*** You will learn of holistic practices that allow me and many to be in control of their seizures. On Thursday March 9th. If you live with epilepsy, it will touch you directly. Email me to attend at dljvince@gmail.com The Masterclass will be on Thursday March 9th at 3pm Pacific Standard Time (6pm EST). Send me an email and I will respond to you with a personal invitation to the Masterclass. That’s 3:00pm PST! See you there, Daniel Your Holistic Epilepsy Health Coach #epilepsy #epilepsyawareness #epilepsyawarenessmonth #epilepsywarrior #epilepsysucks #epilepsypositivity #epilepsysupport #epilepsylife https://www.instagram.com/p/CNGoBx0j4BR/?igshid=NGJjMDIxMWI=

[leokostas]

Epilepsia - os 500 dias de KEPPRA

Em 2019 comecei a ter uma série de convulsões noturnas, todas as noites, que resultavam em automatismos e momentos de ausência, oscilações drásticas de humor que não tinham explicações e momentos de depressão sem razão aparente.

Comidas, bebidas (alcoólicas), infecções, nada disso indicava ser um estopim.

Primeira consulta com um neurologista:

Exames eletroencefalográficos não acusavam qualquer dissonância; só mesmo a sinusite que é de família.

Medicamento 1: Ácido valpróico.* Começou a equilibrar as coisas e as convulsões pararam.

*Indicado para um amplo espectro de convulsões e epilepsias; surtiu efeito no começo, porém, as convulsões, automatismos e ausências voltaram.

"Aumente a dose"., disse o neurologista.

Este aumento começou a criar outro problema: retenção de líquidos, aumento do LDL (colesterol ruim) e aumento de peso. De 96kg para 112kg.

Buscamos uma segunda opinião: "Ao invés de aumentar, complementaremos com pregabalina." disse a doutora.

Medicamento 2 (combo): Medicamento 1: Ácido Valpróico + Pregabalina.

A combinação começou a equilibrar as coisas e as convulsões pararam temporariamente, mas essa combinação sobrecarregaria meu fígado causando outros problemas como hepatite e afins.

"Faça uma tomografia para descartar alguma lesão ou traumatismo."

TOMOGRAFIA FEITA. Resultado: NADA além de um lindo cérebro e da indicação da sinusite, que é hereditária.

"Você vai precisar fazer uma punção lombar para descartar qualquer infecção bacteriana, viral, fúngica, protozoários, parasitas, encefalopatia espongiforme ou um possível tumor cerebral."

Gelei com esta última parte. Me senti no lugar de Renato Villar (Roda de Fogo - 1986).

PUNÇÃO LOMBAR (cara) feita. NADA nos resultados que afetassem direta ou indiretamente o cérebro.

"Você vai precisar fazer uma RM (ressonância magnética) para descartar alguma anomalia no órgão que a tomografia não tenha acusado." Resultado: NADA além de um lindo cérebro.

TOMOGRAFIA, RESSONÂNCIA, PUNÇÃO LOMBAR. Exames (muito) caros que exigiram a quebra do porquinho e o ajuntamento de várias moedas e a venda de algumas moedas raras.

Por que você não fez pelo SUS? Seria muito mais demorado e ainda faltam alguns anos pra idade de prioridade. Era uma corrida contra o tempo.

Automatismos e ausências são perdas de consciência e poderiam ocorrer em algum momento em que eu estivesse na rua ou em qualquer outro lugar.

Longe da realidade, sem ter acesso a um raciocínio claro, poderia me acidentar. Já houve um momento em que eu fui à porta de casa para sair. Pra onde? Vá saber. Mas mô não deixou.

Foi então que buscamos uma terceira opinião e fomos a ele. Ele ouviu calmamente toda a saga até chegarmos a ele.

Fez alguns exames de reflexos ("martelada no joelho"), peso, altura, etc. >_<

Ao examinar os valores dos exames, (quase) tudo estava dentro dos padrões, só a glicose "à beira do penhasco" (é difícil resistir ao pedido de um chocolate para ser devorado).

Então, mostrei as imagens da RM que já tinha feito, no celular mesmo, não as tinha levado impressas por pensar que poderia apenas enviar por e-mail, mas não havia computador em sua sala, apenas estantes, livros e pastas com prontuários escritos à mão.

Passando as imagens, ele dizia: "Tudo normal. Normal. Normal. Normal." Até que, ele deu zoom numa das imagens...

"Aaahhh, eis aqui o probleminha. Teu hipocampo esquerdo tem uma má rotação e isso é algo muito comum. Nada do que se preocupar. Não posso receitar CBD, mas este medicamento aqui vai resolver."

Pois bem, este experiente médico acertou na mosca na mosca (não, não repeti, só pense numa mosca pousada na mosca do alvo).

Logo comecei a tomar os medicamentos nos horários e, obviamente, suspender qualquer bebida alcoolica, ad eternum talvez. Tudo voltou à nitidez, eu voltei à nitidez. Tudo ficou muito claro e perdi aquele receio de falar algo impróprio, que deve ter acontecido em algum momento.

Porque estou contando esta experiência?

Ainda não descobri, mas acho que muitos irão identificar-se com os acontecimentos. Há várias pessoas por aí que tem epilepsia por N razões; desde uma má rotação à uma infecção, um edema, um tumor, enfim, a lista é grande.

Por outro lado, sei que nada disso é desculpa para o que eu tenha dito ou feito neste meio-tempo. Não posso nem vou responsabilizar este estado por qualquer grosseira aos olhos dos outros. Talvez tudo o que emergiu veio do subconsciente, mas não vou terceirizar a culpa do estrago feito. Não tenho como voltar no tempo.

"Ah, ele é epilético, por isso fez o que fez e falou o que falou." você vai pensar. Na verdade, dizer que alguém é epilético, diabético, paralítico, leproso, etc são maneiras de associar a pessoa à "doença" e assim, transformar a pessoa na própria "doença". "Ah, mas todo mundo fala diabético, epilético e paralítico." Por mais engraçado que pareça, não é: Seria engraçado se fosse alguém da tua família? Pense bem.

Enfim, com o KEPPRA lá se foram os 500 dias sem convulsões e a paz voltou a habitar nosso lar.

P.S. retornarei ao post para edita-lo mais.

[ahcukmummy]

744 hours in A&E 😀

Hey,

Hope that you are all well.

It has been a turbulent few weeks since my last blog – but when has life ever been easy going in the Team Mallon household.

July in the life of Team Mallon ……….

3rd July – 6.05pm Seizure , Abigail needed 4 lots of emergency medicines , we managed to stay at home

6th July – 11.25am Seizure, Abigail needed 4 lots of emergency medicines at home and a trip to resus for 2 more lots of emergency medicines

12th July – 9.05am Seizure, Abigail needed 4 lots of emergency medicines at home and a trip to resus for 1 emergency medicine, discharged at 11.10am

1pm Seizure, We could not give any more emergency medicines as it had only been a few hours since Abigail’s last seizure and she is only allowed 4 benzodiazepines in a 24hour period, so I called 999 straight away. The same ambulance came out to us that had taken us in this morning – I can’t stop myself from crying and the crew as always were amazing , a rapid response paramedic arrives and it soon becomes clear that Abigail is not breathing effectively so they have to start bagging her, - Gavin & I have had to do this before while waiting for the Ambulance to arrive but it never gets any easier to do or watch 😥

The paramedic thinks that Abigail would probably benefit from more invasive intervention so calls the Air Ambulance, We have never (Thankfully ) in the 15 years that we have walked the AHC & Epilepsy road had to have them to come out to Abigail We were told that there was a possibility that the Doctor might decide to put Abigail to sleep when he arrived to stop the seizure and give her body a rest, the best place for them to so this would be out in the street so that they had enough room My heart sank and I watched as the colour drained from Gavin, I am now starting to worry about Hugh who was still at school – Thank God but how was he going to get in, who would tell him where we were etc. By the time the Air Ambulance crew arrived, another ambulance had arrived, 2 advanced paramedics and a team leader and 2 police cars to block our road off 🤯

The doctor decided that after giving Abigail a further dose of IV medicine that he would travel with Abigail in the ambulance and to get her to QE where it was a better environment for any further invasive measures. Gavin stayed at home to wait for Hugh to get home from school and said that the 2 of them would come to the hospital. Once we get to the hospital Abigail seems more settled and the A&E team transfer Abigail to HDU so they could monitor her. Gavin & Hugh arrive, and we were sat chatting, Hugh is telling us all about his day and things seem to be calming down.

5pm Abigail goes extremely quiet and her heat rate drops dramatically, I go out and call the Sister in charge who know Abigail & Us really well, she comes in and says “ Maybe Hugh should wait outside” by the time I have come back into the room from settling Hugh with his iPad, a blue call has been called and Abigail is being bagged once again 😪 it was decided very quickly that the emergency medicines were not working and the best thing for Abigail was for her to be put onto a ventilator to try and stop the seizures and give her body the rest it needed.

 I stayed in the room while Abigail was intubated while Gavin was with Hugh – Hugh as always was a total star and went with Gavin to get me some snacks and a drink to take with me to the Evelina as children are not allowed in PICU so Gavin &  Hugh were going to have to come home while I went with Abigail.

In true Abigail style is was not long before they were able to get her off of the ventilator.

I have never been so pleased to see Gavin when he arrived the next day – We think that Abigail had been clustering since the first seizure in the morning, how her little body copes with all that is thrown at it is beyond me – Abigail is a true warrior 😍

20th July 3pm Seizure, Abigail needed 4 lots of emergency medicines and a trip to Resus, didn’t need any further medicines so was allowed home after being monitored

26th July 8.08am Seizure Abigail needed 4 lots of emergency medicines at home, she needed to be bagged as she wasn’t breathing for herself and was still seizing so we had a trip to resus for another load of emergency medicines and after being monitored we were allowed home

 Abigail is still not back to her baseline before her seizure on the 12th July but each day she seems a little brighter which is a real positive.

The new anti-convulsant that we started back in May does not seem to be helping as Abigail is still having regular prolonged seizures and they are needing a lot of emergency medicines to get them under control - (not having had a working emergency passport for the last 8 weeks did also add to Gavin & My stress levels -  it is now sorted finally 🙏  ) What the next step is we don’t know until we speak to the Neurologist but what I do know is that we could all do with a little respite especially Abigail .

Here is hoping for the rest of the Summer holiday to be lots calmer 😀🤞 and we can manage to get out for some fun days - making memories and laughing.

Speak to you all soon Take care and be kind to yourselves Catch up with you all soon

Em x – CureAHCUKMummy

[communityinclusion]

Epilepsy Warriors: Our Bond on Social Media

July is Disability Pride Month. Sheila Johnson is a knowledge translation specialist at the ICI. The following blog post was written by Sheila.

I’m an Epilepsy Warrior. It’s an exclusive club. I’m proud of my club, but I hope you never join.

We fight around the clock, without respite. It's a relentless battle where maintaining our status quo is a constant struggle. Living like this is tough. Our situation can shift unpredictably; you could be free of seizures at 10 am, only to be besieged by them at 10 pm.

When I first received my diagnosis in my 30s, I faced a five-year struggle to get a proper diagnosis and then two more years to find the right medication and dosage. I fought to hold onto my job and financial independence. I’ve (mostly) been seizure-free for 16 years. Still, there's a persistent worry underlying every decision I make, whether it’s skiing, international travel, or enjoying a fancy meal. The unpredictability is always there, lurking in the background.

Epilepsy is characterized by recurrent seizures stemming from abnormal brain activity. Beyond seizures, it can influence cognitive functions, mood regulation, and behavior, varying in severity and impact from person to person. I combat symptoms and endure side effects. I experience tip-of-the-tongue syndrome, struggle to articulate abstract thoughts, and grapple with decision-making. I have bad short-term memory. I have bad short-term memory.

And insurance companies…need I say more?

In the early days, I traversed this battle alone. I didn't know anyone with epilepsy, and while my family is supportive, they can’t truly understand. Doctors recommended connecting to advocacy organizations and joining support groups, but that takes effort and energy that some of us just don't have, especially at the beginning.

I found an ally in social media. It has become a place for warriors like me to develop bonds forged in shared struggle and mutual support. Through this interaction, I no longer feel isolated in my journey. Now, I have a network, thanks to Instagram.

I connect through hashtags like #EpilepsyWarriors, #EpilepsyJourney, #EpilepsyStrong, and #EpilepsySucks. I follow advocacy organizations like @epilepsyfdn and individuals like @jacksmom, @addies.answers, and my favorite, @epilepsy_memetherapy.

On social media, we have found a place to commiserate with each other, sharing our daily struggles and receiving much-needed empathy and understanding. We complain about the side effects of our medications, vent about the unpredictability of seizures, and share outrage over societal stigmas. For us, commiserating means finding comfort in knowing we’re not alone. We share our frustrations about the inability to pinpoint the cause of our epilepsy and the exasperation when doctors don’t listen to us.

Empathy is crucial in our community. We share our experiences and emotions, knowing others genuinely understand and share our feelings. This deep connection helps us feel less alone in our journey.

When policies, media portrayals, or societal attitudes provoke our anger, sharing this outrage together strengthens our sense of unity. It helps us realize we’re not alone in our frustrations and gives us a collective voice. We stand together, advocating for better understanding and treatment.

We mourn together, whether it’s the loss of a fellow community member, a missed opportunity due to our condition, or the loss of a sense of normalcy. Mourning together provides a space for collective healing and support.

We find humor in our experiences, like the time I got cement stuck in my hair during an EEG— this helps lighten the mood. Laughing together helps us cope with the stress and find joy in everyday moments. Humor becomes a coping mechanism, making the tough times more bearable.

Most importantly, we proudly share our accomplishments, milestones, and successes, knowing we are among others who genuinely understand our journey. Whether it’s a year seizure-free, a new job, a creative project, or a personal victory, sharing these moments brings positivity and hope, strengthens our community, and bolsters our resilience in the face of challenges. Seeing each other succeed inspires and motivates us.

The journey of an Epilepsy Warrior is marked by relentless battles, unpredictable shifts, and persistent worries. Yet, within this struggle lies a profound strength and resilience that binds us together. Through the power of social media, we have found sanctuary, solace, and solidarity among fellow warriors who understand our journey intimately. Our collective experiences, shared struggles, and mutual support have forged an unbreakable bond, reminding us that though epilepsy may challenge us, it will never define us. As we continue to navigate this journey, let us take comfort in knowing that we are never alone, and together, we are stronger than the obstacles we face.

[luna-is-disabled]

Facts about epilepsy that you may or may not know:

There are over 40 different types of epileptic seizures

There are 4 types of epilepsies

When a person has a seizure that lasts for more than 5 minutes or has multiple seizures in a row, this is known as Status Epilepticus and it can cause brain damage and/or be fatal

People with epilepsy have a higher risk of dying than those who don't have it

Before a seizure, some people may experience auras. These vary between epileptics but common auras involve hallucinations and a feeling of deja vu

Epilepsy is very common

Anybody can develop epilepsy

Epilepsy is a chronic medical condition

Not all seizures involve convulsions

People with epilepsy are able to live normal lives

1 in 26 people will develop epilepsy

Each year, 150,000 epilepsy cases are reported in the United States

One-third of people with epilepsy live with seizures because no available treatment works for them

65 million people have epilepsy in the world

3.4 million people in the United States have epilepsy

You cannot swallow your tongue during a seizure, it is physically impossible

Forcing something into a seizing person's mouth can result in a chipped tooth, cut gums or a broken jaw

Epilepsy is not contagious

1 million people in the United States have uncontrollable epilepsy

The most common epilepsy death is Sudden Unexpected Death in Epilepsy (SUDEP) followed by status epilepticus

Hopefully you were able to learn more information about epilepsy, love you all xoxo

[grungeandroses]

Epilepsy is so much more than seizures and needs to stop being taken so lightly. Epilepsy is a serious condition that CAN kill.

[tonyalynnphoto]

#this #epilepsyawareness #epilepsysucks #theydontallfalltothegroundandshake #brainmisfires https://www.instagram.com/p/B7zwvTYgxno/?igshid=21utww5x5668

[watchoutforice]

Happy Gotcha Day, Bond-Bond...can't believe it's been 5 years already! . #WahioVagabond #RescuedDogsRock #EpilepsySucks #CanineEpilepsy #EpilepticDog #GotchaDay (at Wahio Walkabout) https://www.instagram.com/p/CAEB1uZn322/?igshid=3ag2s1n32i4z

[epilepsy-and-me]

[symphonicdemise]

So I know I’ve been away from this blog for a while (I get distracted I’m sorry OTL) and I don’t really like making posts about personal issues, or ooc posts in general, but... this one is too important not to post. And I’m sorry if this is a bit longwinded. TLDR; Wear purple on Feb. 9th to raise awareness about SCN8A Epilepsy.

There are many forms of epilepsy, and one such form that not a lot of people know about is SCN8A epilepsy. It’s caused by a mutation in the SCN8A gene, SCN8A is a gene that affects how brain cells function.

The reason I make this post is because tomorrow (Sunday, Feb. 9) is worldwide SCN8A awareness day.

Nearly one year ago to the day my nephew, Otto or “Otto the Great” as we’ve come to call him, was diagnosed with this form of epilepsy. There are only around 250 cases reported worldwide, and this sweet little boy has the ONLY variant of this mutation, which means treatment and seizure management have been nearly impossible. My sister has been through doctor visit after doctor visit with no end in sight. He’ll be 2 this year, and has probably had more seizures in his short life than anyone could count. They last anywhere from 5 - 20 minutes, and can have up to 15 in one day.

I’m not asking for donations or anything like that, just awareness. The more people that know about this terrible condition, the more research can be funded.

What I am asking is, on Sunday, February 9th, wear purple. It is the color chosen to raise awareness, much like pink is for breast cancer.

Thanks guys, hearts and hugs.

Otto’s Journey: https://www.facebook.com/OttoScn8a/

The Cute Syndrome Foundation: https://www.thecutesyndrome.com/

[tayswiftielover13]

#epilepsyawareness #epilepsyawarenessmonth #epilepsyfighter #epilepsysucks #epilepsymom https://www.instagram.com/p/B47bfpggcbI/?igshid=1h073py1qisp4

[unclespike]

Can't decide if my relative lack of motivation is from aging or from my damned seizure medication. But oh well. At least I have coffee this morning. Happy Tuesday! #coffee #mornings #epilepsysucks #butnoseizuresforfouryears https://www.instagram.com/p/BxKp9GkgfUwHYDEKgDg4u3Or0Fs4CVOt2VT3U00/?utm_source=ig_tumblr_share&igshid=kf0mk9xuhazy

[madebytinypals]

This is more about the stress I had been under working & studying nonstop than it is about seizures, but they're connected somehow.

A seizure sure as hell doesn't help me (they will forever suck) but I had somehow managed to get my hours slightly more organized, so I can now walk without worrying about my stress giving me a shock any moment, quite literally.

I'm doing good, so this is a little reminder for my not-so-good future self, whenever she needs it.

To those who had seizures today or are going over stressful times: I know it sucks. IT SUCKS, AND IT HURTS, but it won't feel this bad all the time.

All the best wishes for u<3

[weedoflifesblog]

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