Do you have pre-seizure issues or symptoms?

Hello @heal33 and thank you for reaching out about moderators. To answer your question, yes, there are moderators and mentors both on Mayo Clinic Connect. I have been reading the conversation between you, @jakedduck1 @hopeful33250 and @lsittll about the book. @hopeful33250 had a great question about “pre-seizure” symptoms like fatigue, stress, hunger, and the hard to understand auras. Do you have any experiences you would be willing to share related to "pre-seizure" symptoms?

@kellyhahn1
Hello Kelly,
I was curious about Lisa Lucier (@lisalucier). I haven’t seen her post in the epilepsy/seizure section for quite a while now. I thought she worked at Mayo Clinic. If so is she still there? I hope all is well with her.
Jake

Hi @jakedduck1, thanks for your asking about Lisa. With COVID-19, there have been numerous furloughs and shifting of duties within Mayo Clinic staff. Lisa and the other moderators will return, hopefully soon. in the meantime, Kelly, Amanda and I are continuing moderation of the community, supported by active members like yourself.

I know exactly what you mean when you said you would say something scares my tummy. I'm in my 50s and that's how a lot of my auras would start or I would have a strong de ja vu feeling. The last one I had was almost like being on a roller coaster right before you go down that big hill. I was picking out beef in the store and when I looked down, I felt that feeling when you go speeding down a steep hill and it gets your stomach. Then the meat looked farther and farther away and almost like I everything turned to tunnel vision. I'd never had one like that. The next thing I knew I was in an ambulance. They are horrible. I wouldn't wish them on anyone.

My seizures are short. I'm slightly out of it but don't lose consciousness. I have tried different medications none of them work. I have tried neurofeedback and the ketogenic diet which I was on for 1 yr but had to stop due to acid reflux. Same with combo drugs. Thought of surgery but one doctor said I could lose my memory. Another doctor said it was due to scar tissue formed after an injury as a child and suggested surgery.

I started reading "How to Use the Frolov Breathing Device". It is similar to the Butyeko method. He says you should have someone guide you through that though. When I feel something coming on I slow down my breathing and it seems to help.There is training though involved which I haven't started. Found someone in my area who uses Buteyko method and he says we could use Skype.

@hopeful33250

I have posted this information under other topics in more detail and as soon as I hit the post reply button I am going to figure out how to refer(link) to that post so I don't have to retype.

I have tonic clonic and complex partial. I don't know what the latest terms are and am tired of trying to keep up. I was diagnosed at age 7 and am now 65. I have had fewer than 10 tonic clonic. It is hard to say how many complex partial I have had over the years since I am not there to count them, a ball park number would be 5 a day.

I refer to my complex partial as "twitches" which show up around my mouth. They generally last about the time it takes to switch a light off and back on. I am absent during these seizures.

My triggers are lack of sleep and low sugar levels.

Just testing something, this is a copy of the post above. https://connect.mayoclinic.org/member/212821aa00f73dab2a43b329e3e9e7076e70252dee/bookmarks/

Hello @mxyzptlk32, I'm going to tag @johnbishop to this post. Perhaps he can explain better than I can how to copy the link from a post.

@mxyzptlk32, @hopeful33250 and others trying to figure out how to link to an old post you have made.

You can find all of your previous posts listed under your profile. So the first step is to open another tab (new page in your web browser so you do not lose your current Connect page you are working on), then go to your profile by clicking on your member name or select My Profile under your profile icon at the top right of the Connect window.
-- Scroll down to locate the post that you want to link.
-- Click your right mouse button on View & Respond and select Copy link address
-- Go back to the Connect page and post/reply that you were working on and paste the link. Here's an example using your post selected from your profile.
https://connect.mayoclinic.org/comment-redirect/407610

Happy Thursday!

Forgot to mention the above instructions are when you are using a computer. Here's some "how to" with pictures for cellphones/tablets.

How to copy and paste on your phone: https://pocketnow.com/copy-paste

Thanks, it can be done if I can figure out how to set the focus on a specific post. If I can do that the URL will specifically identify the post. For instance, it is what the system does in a notification. When I selected "My Notifications" and selected your notification it took me right to your post, in this case it returned the URL https://connect.mayoclinic.org/discussion/pre-seizure-issuessymtoms/?pg=2#comment-407754. That is something that can be copied and pasted into a post so others can jump to another post.

What I did above was bookmark the post and then provided my bookmark link in my post. Besides not being sure if that works (were you able to select the link and go to it) because bookmarks is a protected area which only I should be able to see, it doesn't identify a specific post. It simply takes you to my bookmarks page.

The chat room may be designed on purpose to preclude this capability. It may have been determined a response to a post should be a bit more personal than a link somewhere else. Sometimes automating a function isn't best.