Info on our Mayo Clinic stay

keep positive and check this site regular. I'm in Virginia so cant really help but sending prayers.

Hi @kassidytaylor94
I'm so glad you got into Mayo Clinic quickly.
I haven't been to Mayo Clinic in Minnesota myself and haven't gone through this type of evaluation. But I'm sure other members here can share their experiences and insights.
I'm tagging our moderator @lisalucier , who may be able to help you out.
Wishing you both clarity, answers, and a successful evaluation! Please keep me posted on how it goes.
Chris

Thanks for the tag, @santosha, and welcome, @kassidytaylor94, to Mayo Clinic Connect. I'm sorry to hear your boyfriend's seizures are worsening. He's lucky to have you by his side during this journey with epilepsy and this literal journey to Mayo Clinic in MN.

I agree that being prepared is a good thing. So what I've done is to also add this discussion to the Visiting Mayo Clinic support group on Connect so that you can get some input from others who've been there as patients for epilepsy or other conditions. Please meet @roch @bajjerfan @jlharsh @keeg1010 @boston2mayo @jenfossbru @hobbitinhopeland @bonnieh218 @hillsboro. @dannoyes also may have some thoughts for you.

With the seizures becoming more frequent, how are you feeling about your boyfriend's safety in the meantime?

@kassidytaylor94, I'd also like you to meet @jakedduck1, who may have some thoughts about your upcoming trip to Mayo Clinic in MN to try to get some answers about why the frequency of your boyfriend's seizures is increasing, even at the highest dose of his medications.

@kassidytaylor94
Welcome to Mayo. I hope you find answers during your visit. I live in Rochester and am more than willing to answer any questions you may have.

Have you set up your Patient Portal? It is the best way to keep up with appointments. In addition, there may be questionnaires that you may need to complete. If you fill them out ahead of time, it saves time at the appointment.

For more information or help, see: https://onlineservices.mayoclinic.org/patientportal/support
You might want to check out this article on "How to make the most of your Mayo Clinic appointment."
https://www.mayoclinic.org/patient-visitor-guide/how-to-make-the-most-of-your-appointment
Another Connect dissuasion you may want to review: Tips for New Specialists:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Mayo has a free Concierge service that can help answer questions about visiting Mayo.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
By phone 7 a.m. to 6 p.m., Monday-Friday: 507-538-8438
Email: concierge@mayo.edu

This FAQ from the city of Rochester is also helpful for common questions people have about coming to Rochester for Mayo Clinic appointments:
https://www.experiencerochestermn.com/mayo-clinic/faq/
Finally, the weather in Feb in MN is unpredictable, so pack some warm clothes.

Please post any other questions you may have.

@kassidytaylor94 Please know you are in some of the most amazing hands in healthcare. In fact, I sent a thanksgiving message to my Mayo neurologist in appreciation for all that he's done to help me. They are that good. Going to Mayo in person completely changed my life. They gave me hope. In fact, the experience was so profound in my life that I just wrote a book about my experience, which will be published on Amazon in early January. I never would have been able to do such a massive task except for the care I received from Mayo and its team. The journey you and your boyfriend have experienced is tough, but please know you will start to get answers and a genuine, workable care plan. For me, Mayo cuts my meds in half, gave me guidance on how to live with my chronic condition, and how to reshape my thinking. I also have absence and nocturnal seizures and Mayo validated what was happening. My local neurologist said that because I wasn't convulsing with my absence seizures, they weren't real. In summary, Mayo validated me and my condition.

Regarding where you stay, lean into the Mayo concierge, who will work hard to help you. At one time, I spent a month at Mayo and we ended up doing a corporate apartment.

Just know that by getting into the Mayo family, you are about to join one of the greatest healthcare systems in the world, and they will be there to get you onto the best path forward. You will see this group as a perfect extension of the Mayo family, who will surround you with love and support.

If you and your boyfriend ever have any more questions, please don't hesitate to reach out.

I used their travel assistance and they made my air
and hotel reservations while I was on the phone.
You don’t really need a car if you stay downtown
you can go anywhere on the campus using the tunnels.
Neurology had multiple test appointments made before arrival. I called the neurology desk multiple times with
helpful employee to answering. You will be getting
helpful instructions on your portal and by mail.

@kassidytaylor94
Good morning. I am very happy to see that you have joined the group. This group has wonderful people who can help guide you through the process of getting answers. I am so sorry to hear about your boyfriend's increase in seizures but I am really glad you were able to get in to Mayo so soon. I have not been to MN but I think using the Concierge service is a great idea. I didn't have to travel out of state so I don't have much info on the process but Mayo Clinic will help guide you every step of the way. I would make sure to make a list of questions for the doctor and find out what tests they will be running, so you can be prepared. I would also talk to the neurologist about Epidiolex. Epidiolex is pure CBD and has been amazing for my son Keegan. It is, for us, a much better option due to the many side effects of seizure medications. When my son started Epidiolex, he was seizure free for almost 2 years. He is taking lamotrigine along with Epidiolex but that's all he needs. I would definitely check out the Epilepsy Foundation website because they have a ton of information that could be helpful. I wish you the best of luck. Just know you are in the best hands possible and the people at Mayo are dedicated to finding answers and adjusting medications to decrease his seizures. Good luck!
Kerry