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How Can The Veterans Of This Site Do More To Help The Newer Members To Get Answers To Their Questions?

How Can The Veterans Of This Site Do More To Help The Newer Members To Get Answers To Their Questions?

As I have discussed with some of you, I try to send a greeting and add all new members to my team to help to get answers for them. However, there are a lot more of you have personal experience with implants like VNS, RNS, etc. and various brain surgeries, versions of the Keto diet, use of other alternative treatments and anticonvulsants and the like that I do not personally have.

How can we improve things for them even while we consider the meetings and the likes for some of us?

The… read more

A MyEpilepsyTeam Member said:

Keep trying friends! There is power in knowledge. Friends on this site have shared their experiences with epilepsy and support each other. To get Skype or Zoom conversations up and running smoothly will help us to put names to voices and faces! Please if anyone can help host a Zoom or Skype conversation please help us out! We need people who can host a meeting and also people who can troubleshoot the issues of the meeting. Are any of you techies willing to help? Multiple time zones are Multiple languages. Are you aware of a free simple app that can help us make a great connection for all users who have complications with epilepsy? We are STRONG WARRIORS TOGETHER! PLEASE HELP US IF YOU HAVE TECHNICAL KNOWLEDGE!
ALL will profit sharing our experiences with epilepsy and support from the kind hearts we all have! Thanks 😊 πŸ‘£πŸΎπŸΎ

posted 5 months ago
A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member I am sorry to hear about your friend. I know how that feels from hearing the negative or no benefit at all of my friends who have had VNS implants. And the same goes for those who have had the brain surgeries that were damaging or at most only semi-beneficial.

Of course, I also have the stories of my friends who have had positive results and even spectacular results from having the VNS implants, other implants and/or brain surgeries. Like everything else with epilepsy and the medicines, alternative treatments, surgeries, etc., different people have different results from each. After all, there is no cure for epilepsy. And some friends are lucky enough to have a great neurologist right from the start and have a seizure during a EEG that provides the useful information to confirm that that person has epilepsy on the first try and/or others who got to a long-term seizure free state after starting on their very first anticonvulsant (and others who achieved it after only had to try a few or add an additional anticonvulsant before this success was achieved). And I have a friend who had seizures right from the start as a very young child, but when his mother asked for a try of the ketogenic diet, he achieved long-term seizure free diet that still last to this day decades later. And I have a friend who went in for EEG Long Term Monitoring, and the doctors kept lowering and getting her completely off one anticonvulsant after another without triggering a seizure. However, she left the EEG LTM on no anticonvulsants and has still been in long-term seizure free ever since.

posted 4 months ago
A MyEpilepsyTeam Member said:

Reach out and text to someone who is crisis! Care about others and share what you have learned with others. This site is for all of us to share with others and do the best we can to assure each other we are loved!Keep believing in yourself and share your experiences with love and kindness and FAITH!

posted 4 months ago
A MyEpilepsyTeam Member said:

If it's possible consider giving the newbies a chance to choose the support they need from the site upon signing in.
Casual ( ALL ACTIVITY, MEET OTHERS )
or
intense ( Q & A, RESOURCES )
Due to being electronically challenged it took me a long time to get familiar enough with the site to become acquainted with everything that was available to me on the site.

posted 4 months ago
A MyEpilepsyTeam Member said:

Thank you for sharing and caring! We will all keep trying!πŸ™‚

posted 5 months ago
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