FREE Online Support Group

 Click HERE to join EpilepsyBlogger's Online Epilepsy Support Group

 

Can't make it to your local Epilepsy support group due to work hours, school, too many seizures, etc?

 

Do your local support group dates fall at inconvenient times?

 

Not entirely comfortable yet talking to people in person about your Epilepsy?

 

Don't like how most support groups are only once a month? Need to talk MORE?

 

If you answered "YES" to any of the above questions, then EpilepsyBlogger's Online Epilepsy Support Group is just for you!

 

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So how do I visit the group?

It's so easy! EpilepsyBlogger's Online Epilepsy Support group is operated through Facebook groups, so it can easily be accessed by computer, laptop, smart phones, iPod touch, iPads, and many other devices! You can visit whenever you want, as there are no set dates for communication.

How do the discussion topics work?

Mandy Krzywonski (EpilepsyBlogger) aims to post  discussion topic each Tuesday regardless if topics have been posted other days that week. Since EpilepsyBlogger has seizures too, topics may occasionally be posted on different days. Since EpilepsyBlogger is getting brain surgery, a back-up member has been chosen to post topics.

Well, what if I have a personal issue I would like to talk about that does not relate to the posted topic?

As long as the personal issue is related to Epilepsy/seizures and isn't inappropriate (see rules below) each member is welcomed to vent, post their own questions or post stories. Here are three examples:

Member #1: "Hey guys... This weekend was so stressful. I had three seizures on Friday, two on Saturday, and FOUR on Sunday! Only three of them were Tonic clonic, but I'm still really upset at how things went. Did anyone else have seizures this weekend?"

Member #2: "I was just curious, does anyone else experience extreme moodiness with Keppra or Felbatol? I'm not sure if it's the Keppra or the Felbatol or both of them together, but I just feel so wild and I'm not sure what to do! These are both new medications I got started on since about two weeks ago. I see my doctor on Tuesday, so I am going to ask him then. But I'd love to know if anyone else has experienced this. Thanks!"

Member #3: "You know, I had this memory today about my 9th birthday party. I had my first Tonic clonic seizure right after blowing out my birthday cake candles. It was so embarassing! But all my friends were sweet and came back over the next night to sleep over. What a funny time to have your first seizure, eh?"

How old do I have to be to join the group?

All ages are welcomed!

I don't have Epilepsy, but someone I love does. I'd love to have someone to talk to and ask questions to. Can I join?

Of course! Loved ones and family members are allowed to join the group as well!

My doctor gave me some great advice. Can I share it?

You are welcomed to share what your doctor told you, but you must refrain from giving medical advice as everyone's Epilepsy is different. What's great for your may be terrible for someone else. Here's two examples of what you should and should not do:

Okay: "So, I saw Dr. Vargas today and he mentioned that I need to start doing more exercise. He recommended jogging three times a week. He said that it will help me with losing weight gain from my medications. Maybe some of you all could try that? But be sure to ask your doctor first, because I'm sure we're not all healthy enough for this kind of exercise."

This is OKAY because:

- They mentioned to ask their doctors first.

- They mentioned that we are all in different health circumstances.

NOT okay: "This last two weeks I have been eating only 1,800 calories a day. It's for a weight loss program my cousin asked me to do. I don't know why, but it has actually helped tremendously with my seizures. I've only had one in two weeks compared to a few a day! You all should try it!"

This is NOT okay because:

- They are instructing a person to eat lower than the recommended amount of calories a day. For many people, this would affect their seizures badly.

- Their doctor may not have reccommended this, and they did not entirely state that.

- They asked others to try it without first asking their doctors.

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EPILEPSYBLOGGER'S GROUP RULES:

Dear new support group members,

I strongly want you all to understand that you must be respectful of other folks privacy, and I encourage you to be respectful of your own. I have some rules that I ask you all to follow. The Internet is a tricky place and I would like you all to feel comfortable here.

1. ABSOLUTELY NO sharing of phone numbers anywhere in this group. If you wish to share phone numbers, do it privately through e-mail or on your own personal Facebook messaging system. Sharing of phone numbers will result in immediate banning.

2. ABSOLUTELY NO asking to exchange phone numbers. Ex: "I'd love to talk more about this over the phone. Can you message me your number?" Things like this may only be done privately within your personal messages. NOT on this group's wall, posts, or comments. Asking to exchange phone numbers will result in immediate banning.

3. If I hear from another member or see that someone has been harassed by another member(s) in any way, the member(s) at fault will be permanently banned.

4. Disagreements must be handled elsewhere. Not within the group's page. This is not a place for arguments. It is a place for love and support. This will not be tolerated and member(s) at fault will be banned.

5. Keep all posts appropriate for ALL AGES. I understand that Epilepsy affects things such as sex, but I ask that you save those personal issues for your doctor or therapist.

6. All ages, races, orientations, etc. are welcomed here. Discrimination is not. Please keep opinions to yourself, and keep in mind that this group is about Epilepsy. Epilepsy does not choose specific races or orientations. We are all here to help one another and uplift one another. If I see discrimination I will ban the member(s) at fault.

7. I recommend trying to exchanging e-mail addresses, or friending the person whom you wish to speak to rather than sharing phone numbers. I do not have a problem with this, however I warn you to share carefully. Consider making a separate e-mail address for this group. Also, be careful whom you friended on Facebook. I can only warn you of these things, as they are purely your choices.

8. ABSOLUTELY NO sharing of home addresses within this group. This will result in immediate banning from the group. Sharing state or city is fine.

9. Use of foul language is not permitted here. Please find another way to say what you were trying to say, or do not say it at all! After three warnings, members will be banned.

10. You may ask your own questions outside of my official group topics. Keep in mind that they should be appropriate, and answers are only opinions of others.

11. Do NOT take medical advice until you have spoken with your doctor. I, or anyone in this group cannot be responsible for medical choices made on your own.

12. Do NOT give official medical advice. Always make a note that one should always consult their personal doctor before making any changes or choices with their medications or treatments.

13. This is not a place to share links to websites, blog posts, etc. I am the founder of the group and I post articles, posts, etc. in which I know are appropriate or uplifting. If there is something you'd like to share, please e-mail it to MandyKrzywonski@EpilepsyBlogger.org. If it is appropriate for this page, and for our members, I will share it. If I find anyone sharing links, the posts will be deleted. If members continue to post links after being warned, they will be banned. I do not want this to sound rude in any way. I am only trying to keep the group safe and free from viruses or inappropriate things.

I know this seems like a lot, but it is important to keep our group a safe and happy place for everyone to come and "kick back," relax, and connect. If you see someone doing one of the above, please message me on the group message box to let me know. Be sure to remind your fellow members of the rules if you feel they may not have seen them. Warnings will be given in these cases and immediate banning will not take place unless I know they know the rules and have purposefully broken them.

If I didn't answer all of your questions, feel free to comment them below and I'll add them here! I hope you will join and enjoy the group!

Sincerely,
EpilepsyBlogger