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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Type Of Support Do You Feel Would Be The Most Beneficial To You At To His Moment In Dealing With Your Epilepsy?

A MyEpilepsyTeam Member asked a question 💭
Chattanooga, TN

I'm so curious as to what everyone's needs are. I want to see us all get the help, resources and support we need and deserve.

February 22, 2023
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A MyEpilepsyTeam Member

Sometimes a " vent or rant" makes a huge difference. We just need to unload. It's even better when the person on the receiving end gets it, appreciates the need for it and allows us to validate our feelings.

February 22, 2023
A MyEpilepsyTeam Member

When I was a teen I went to a Epilepsy Support Group, through the Epilepsy Foundation. It helped me realized how common Epilepsy was. It also helped me out the depressing slump I was in , before the support group . I also learned many things, that I did realize.. one example, was knowing, I wasn’t the only one with this condition.

The biggest thing I liked about the support group, was that we were all were physically talk to each other face to face.. we were able to get to now each other and compare our Epilepsy and seizures with each other. Then there were the staff , that helped teach many things, that we may not of known. Like our rights the laws, and many other things.

February 22, 2023
A MyEpilepsyTeam Member

I think I would like to know that I'm safe that I could lay my head down and I would be ok. That I would be ok if I stopped breathing again from a seizure because I'm by myself now. That somehow I could not feel destroyed I guess yep I feel defeated.hate that.

February 22, 2023
A MyEpilepsyTeam Member

I feel very annoyed with my neurologist cause they cancelled my last 3 appointments, I have to wait 18 months to see them, I was meant to see my epilepsy nurse yesterday but when I phoned to confirm it, I was told that it was cancelled again till next month, I wish there was more support for patients with epilepsy in the UK, that would help us all cope more.

October 8, 2024
A MyEpilepsyTeam Member

For me the hardest was accepting I have a problem, not an end of the possibility, of taking care of myself in most situations and accepting I would need help, in multiple things, in life and that is the same as everyone else!

October 7, 2024

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