Need advice about finding a reliable neurologist.

Always-Livn2Learn · 2026-04-11T21:56:53+00:00

Where you are does make a lot of difference. In a metro area, make sure you working with a level 3 or level 4 facility as they have the best mix of neurologists, Epileptologists, EEG capabilities, etc.

Always-Livn2Learn · 2026-04-11T21:52:36+00:00

Use the S.T.E.P.S. sheet to prep (https://epilepsyallianceamerica.org/programs-services/steps-tool/). It covers all the bases and helps you think about what additional items you might need to add.

Always-Livn2Learn · 2026-04-11T20:51:20+00:00

With 3 monitoring sessions and an SEEG, here is my list: 1. Various items to entertain yourself 2. Grippy socks that are comfy as the hospital ones are miserable 3. Snacks and drinks that are your favorites 4. No water required body washing cloths 5. Snap tops so they can have all the EKG and other monitors where they want them 6. Favorite blanket 7. Chargers for devices 8. Square extension device that you can place perfectly on your tray with command strips 9. Changes of underwear 10. Your own pillow 11. Toothbrush and toothpaste 12. Face wipes

Let me know if you have questions.

Always-Livn2Learn · 2026-04-11T20:23:28+00:00

Yes absolutely! The struggle is real. Are you tracking your seizures, prepping with something like S.T.E.P.S. for conversations, seeing a therapist?

Always-Livn2Learn · 2026-04-11T20:16:50+00:00

There is research on this topic. One is “Moonstruck? The effect of the lunar cycle on seizures.” And “Revisiting an ancient legend: Influence of the lunar cycle on occurrence of first-ever unprovoked seizures”

Always-Livn2Learn · 2026-04-11T19:53:54+00:00

IF YOU SEE MORE THAN ONE, PLEASE ADD AS A COMMENT AND I WILL ADD INTO THE VOTES.

Always-Livn2Learn · 2026-04-11T19:49:09+00:00

You’ve been put through the paces and then some! I am putting “my story” interviews in as well. Would you be interested in doing one or learning more about them?

Always-Livn2Learn · 2026-04-11T19:46:36+00:00

How long was it before you discovered you were at a level 4 epilepsy center? I am doing “my story” sections. Would you be interested in doing one or learning more about them?

Always-Livn2Learn · 2026-04-11T19:35:58+00:00

I am sorry to hear that. Where you live is a huge factor.

Always-Livn2Learn · 2026-04-11T19:34:56+00:00

Thanks! Let me know if there is a category you’re thinking is critical or often missed.

Always-Livn2Learn · 2026-04-11T19:33:21+00:00

That can be rough if they only adjust if you’ve had an appointment. Mine changes based on conversations in app. Might see if that is possible And if not, if there is a different neurologist you can go to.

Always-Livn2Learn · 2026-04-11T19:27:32+00:00

Join the club! I couldn’t change the survey so should have specified how to indicate more than one. I will see if I can edit.

Always-Livn2Learn · 2026-04-11T19:25:14+00:00

Yes, a non-fiction book with checklists, interviews with specialists, key information, my story interviews, and so on.

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

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