You might have your first neurologist appointment coming up, or you might have had neurologist appointments for years. Either way when you’re first referred to a neurologist there isn’t much guidance on getting the most from your appointment. If you’re like me, you might have never received any guidance at all.
It can be extremely frustrating to leave an appointment with your neurologist feeling like it was a waste of time. We’ve all been there.
In my experience, neurologist appointments can be hard to come by, so squeezing the most out of your appointment is essential. Over the past 8 years of having epilepsy, I’ve had a range of different types of appointments. Most of them emotional, some positive and some that feel like a waste of time. Life with epilepsy will always include neurologist appointments, so we might as well make the most of them.
Be ready to wait
If you have your first neurologist appointment coming up soon, it’s possible that you haven’t been told that there’s a good chance you’ll be sat in a waiting room for a while.
I don’t even want to think about how much time I’ve spent sitting in waiting rooms, playing eye spy or playing boring games on my phone. Unless I go through hell trying to get an extra appointment, I can wait up to 2 years for my routine neurologist appointment. Needless to say, I used to always forget about the dreaded waiting room.
But now I’ve learnt from my mistakes, please learn from them too!
If you haven’t brought a family or friend with you for support, come prepared. It’s a must to bring a drink and some entertainment. It’s unlikely there will be wifi or even a phone signal, so your smartphone can’t be relied on to keep you busy. My go-to is usually a good book to get stuck into and a snack to go with it.
I can count on one hand the number of times my neurologist appointment has been on time over the years. So don’t forget to bring some patience with you too. You wouldn’t want to have your appointment impacted because you’re annoyed about the (potentially) very long wait.
Come prepared for your neurologist appointment
Once it’s time for your appointment, your neurologist will be asking lots of questions. Some of them easy and about your general lifestyle, but other questions will be more specific. They will ask questions about your seizures and will be fishing for specific details.
If epilepsy has made your memory worse, it can be easy to forget a lot of details. There have been countless times that I’ve remembered something important when I’m on the way home and it’s too late. The best way to stop this from happening is to keep a note of your seizures.
Neurologists often tell you to keep a seizure diary, but it isn’t always clear what details they are looking for. They have busy days, they treat more than just epilepsy, so it’s understandable if they forget to mention specifics.
To solve this problem, I’ve created a completely free seizure tracker. You can download it straight to your phone or print it off. After a seizure simply fill in the details of your seizures for you. You can either fill it in yourself or asked a loved one if your post-ictal stage is long-lasting.
Make sure your phone is charged for your appointment, or if it’s printed, pack your bag the night before so you don’t forget it.
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Don’t be afraid to ask questions
It’s perfectly reasonable to challenge your neurologist. After all it’s your health in question and you’re the one taking the anti-epileptic drugs they prescribe.
If you’re not sure what to ask about, ask questions about what side effects you can expect and how to manage them; when will your next appointment be; what are your other options (e.g. holistic therapies) etc. Remember you don’t have to take the first option they offer you.
You can do the same with your appointments with your epilepsy nurse too. They seem to be a more regular point of contact and are ready to answer any questions you fire at them.
Take Support – if you need it
I was diagnosed at 16, so for the majority of the time, my parents have been present at my neurologist appointments. Neurologist appointments used to leave me feeling teary and I didn’t have much to say as a teenager so I needed the extra support.
But then I went through a phase where I wanted to go it alone. So for a few appointments, I went in alone. But now I appreciate the extra support that a loved one brings.
Seen as epilepsy impacts every area of your life, you may or may not want to bring support with you. Some topics discussed are quite personal, you might not want to bring extra people into the discussion and that’s okay. Or you might not be close enough with someone who you would want to bring to your neurologist appointment. That’s okay too. If you can handle day-to-day life with epilepsy, you can definitely handle a neurologist appointment alone.
Take time to de-compress afterwards
A neurologist appointment discussing epilepsy, a life-changing and invisible chronic illness, can understandably be quite draining. You may leave the appointment feeling hopeful and energised, or you might be feeling low. Either way, it can be beneficial to take some time to process what you discussed with your neurologist. Prepare yourself mentally for any changes, be that lifestyle or medication changes. Sometimes there won’t be any changes at all which can also take some time to accept.
Do your best to squeeze most out of your neurologist appointment
Each and every one of us will have a different experience with epilepsy, but one thing that is consistent for us all, is our neurologist appointments. We will all discuss different things, but we all have them. We’ll all sit in that waiting room for who knows how long, wondering if any changes will be made to improve our quality of life.
I really hope that if you try putting these tips into action, they will help your neurologist appointment to run smoother.
What are your top tips for making the most out of your neurologist appointments? Let me know in the comments below!
Until next time,