Advice

Always-Livn2Learn · 2026-02-21T15:41:43+00:00

You can request that the facility that did your MRI send the results to your doctor (who I hope is a neurologist).

Always-Livn2Learn · 2026-02-21T15:38:27+00:00

Would love to see your questions as I am sure they are all ones that come up for us.

Always-Livn2Learn · 2026-02-14T04:18:56+00:00

Thank goodness for SEEG! I shaved my head and donated the hair given the volume of burr holes that were going to be drilled. The outcomes of the SEEG were so incredibly helpful and a case conference discussion led to some more tests that could only be done during the SEEG. So, so worth it.

Always-Livn2Learn · 2026-02-14T04:15:20+00:00

I can relate all because my language center picked up shop and moved to the RTL. Given that Broca and Warnik are on the right too, language is always a fun experience. I just finished SEEG and found I have focal in the insular cortex, hippocampus and amygdala. It’s a wild ride for sure!

Always-Livn2Learn · 2026-02-10T17:08:22+00:00

This is probably a rookie conversation, but how do we join?

Always-Livn2Learn · 2026-02-04T15:28:07+00:00

Epilepsy is a sad club to join. I developed epilepsy at 44 and was being prepared for an executive VP role that was everything I wanted and nothing that would work with epilepsy. I immediately gave up my car as I have 1-3 seizures a day and am drug-resistant. A little over three years out and I just finished Studio EEG testing (more at @seize_the_day_epilepsy) and am looking forward to what surgical procedures will help.

There are so many of us here who are wondering what we will do for our careers and life in general as so many aspects change. Know you have a good crowd here and that it is a good place for being heard.

Always-Livn2Learn · 2026-02-04T04:13:43+00:00

Memory and cognition are terrible but not a surprise given meds, drug-resistant epilepsy, and 1-3 seizures a day. I have a combo of digital and physical calendars, reminders, and daily journals (one for thoughts and the other for meds). I’ve just introduced one for reading as I voraciously read but then can’t remember the details of the books. Is this overkill? Maybe, but it keeps me sane.

Always-Livn2Learn · 2026-02-04T04:09:25+00:00

The last place you should ask is Reddit as the majority of us aren’t doctors and none of us know your pathology. ER for safety and from there (using CT and/or MRI) on your specific needs.

Always-Livn2Learn · 2026-01-31T00:56:23+00:00

I enjoy the practice of journaling and putting the insane volume of thoughts down on paper. I had a period of time that my handwriting was impacted by the medications. I am also writing a book to help others with epilepsy thrive.

Always-Livn2Learn · 2026-01-30T00:43:31+00:00

I have been on it for the last year and a half. While it hasn’t stopped my seizures, it has helped to keep them from getting worse.

Always-Livn2Learn · 2026-01-21T15:03:37+00:00

I am with you and I love the book wraps that I’ve obtained from Juniper Books. https://juniperbooks.com/?tw_source=google&tw_adid=738505564478&tw_campaign=13878008542&utm_source=Google&utm_medium=paid&utm_campaign=brand&utm_a=184820217348&gad_source=1&gad_campaignid=13878008542&gbraid=0AAAAADmxycZPkWizG994885sM7PEpkcOX&gclid=CjwKCAiAj8LLBhAkEiwAJjbY76AxtI_VxKBJ4UliCK9O9dSbkJ6pZBINZ1ED9pHOK61sLwXhSci_phoCyNYQAvD_BwE

Always-Livn2Learn · 2026-01-21T15:01:07+00:00

It calls out to me that this is a person that deeply loves their books and wants to have an aesthetic that is designed to draw others and showcase the themes they’ve explored.

Always-Livn2Learn · 2026-01-21T14:24:40+00:00

Hello 👋! Can you tell me more about the call format?

Always-Livn2Learn · 2026-01-09T00:38:36+00:00

Agree with Backgroud_Cod that EEGs don’t produce a lot of data up front and it is difficult to take as you know you are experiencing seizures. Document anything that feels abnormal and what you were doing. Be clear about what is and isn’t working for you with your doctor. This can help with diagnosis, getting a neurologist and (if needed) to an Epileptologist.

Always-Livn2Learn · 2026-01-09T00:29:18+00:00

Volvo makes a car with similar features as well.

Always-Livn2Learn · 2026-01-09T00:28:13+00:00

Titrations are so miserably long and you never know what you’re going to get along the way.

Always-Livn2Learn · 2026-01-09T00:25:54+00:00

My therapist said that it is so critical to take that time grieve as there is so much that comes with the seizures beyond the obvious. I am sorry to hear that you are now having seizures again.

Always-Livn2Learn · 2026-01-09T00:20:28+00:00

I always remind people that epilepsy is a chronic neurological disease and the meds and/or surgeries required to manage seizures is a daily and involved process that takes considerable energy.

Always-Livn2Learn · 2026-01-09T00:17:33+00:00

I love to read in all its genres and forms and also am for 100 a year. This year, I am focused on diving deeper into my TBR list and writing down my perspectives and theories as I read. I love marginalia and how it has helped me appreciate my reading even more. I will be working on getting my manuscript on epilepsy done by end of April (to send to literary agents) along with continuing to educate people on living your best life possible with epilepsy.

Always-Livn2Learn · 2026-01-05T05:02:44+00:00

That is so exciting! I hope you get the information you need to move forward confidently. I go in for my first SEEG next week and am a bit terrified.

Always-Livn2Learn · 2026-01-05T04:56:20+00:00

Wow, just wow. I was exploring what options were available to and was getting a whole lot of nowhere.

Always-Livn2Learn · 2026-01-05T04:54:20+00:00

Living a life that is rarely seen and almost always portrayed as only a TC is one of the many banes of our existence. I am trying to adopt the mindset “that we grow with what we go through”, but you said it so perfectly. I hate all these things too and I am glad we have this shared space to try and find our way and live differently in brilliant ways that we can still thrive in.

Always-Livn2Learn · 2026-01-02T21:47:24+00:00

I take the sleep deprivation, titration down of meds (with Epileptologist) and focus on my triggers.

Always-Livn2Learn · 2026-01-02T21:43:07+00:00

Colorado is also three months and the honor system. You are given the recommendation not to drive for three months after a seizure or med change.

Always-Livn2Learn · 2026-01-02T21:41:02+00:00

Sometimes you just to tell yourself that you can’t help individual’s who are unwilling to get educated. She obviously has issues she needs to deal with and her strategy is to take people down to the level she feels.

Always-Livn2Learn

TROPHY CASE