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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.

Ever run into a situation when it comes to your epilepsy condition that you think you could use something you tink could help you out with

A MyEpilepsyTeam Member asked a question 💭
Hayes, VA

your condition but both your family members as well as current Dr. are both telling you that you don’t need it? I’ve run into this before on my end are more than one occasions . To me the only person that knows what they need and don’t need is yourself cause you’re the only one that knows what you’re feeling.

March 22
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Reactions
A MyEpilepsyTeam Member

I used to trust my specialists, but nolonger after my neurologist prescribed toxic dosages of my AEDs. Needless to say, he's nolonger practicing medicine. I'll hold judgement on my new neurologist as I've only seen her twice, but she seems better. Family I have to kiss off bc they have no clue.

March 25
A MyEpilepsyTeam Member

I agree i get ride from doc appointments

March 22
A MyEpilepsyTeam Member

I agree trusting instincts is valuable, it is also a valuable thing to trust the specialist that is taking care of you. If there is no value or trust when working with a medical specialist that work relationship will fall apart.

March 22
A MyEpilepsyTeam Member

I get rides to and from Doctors Appointments myself, but otherwise cannot go out alone.

March 22
MyEpilepsyTeam

Have you experienced situations where you felt you needed something for your epilepsy, but family and doctors disagreed?

You're absolutely right that you know your own body and experiences best. Many MyEpilepsyTeam members have faced similar situations and found that trusting their instincts is crucial.

One member shared Show Full Answer

Have you experienced situations where you felt you needed something for your epilepsy, but family and doctors disagreed?

You're absolutely right that you know your own body and experiences best. Many MyEpilepsyTeam members have faced similar situations and found that trusting their instincts is crucial.

One member shared: "When I was first diagnosed, I kept my mouth shut even if my doctor said something incorrect or wrong for my body. I'm learning to trust those feelings - my intuition - and speak up."

Another emphasized: "I am the only one who can navigate my arena, my power is enough to get through whatever is here."

Here are some strategies that have helped others:

- Document everything about your condition and symptoms
- Use "I" statements to communicate your needs directly (like "I feel this would help me because...")
- Speak up during appointments, even if it feels uncomfortable
- Trust your gut when something doesn't seem right

If your doctor isn't listening, it may be worth seeking a second opinion or finding a provider who takes your concerns seriously. You deserve to have your experiences validated and your needs addressed.

March 22

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