This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
“Why didn’t my doctor tell me that? What is a seizure trigger? I didn’t even know that existed! How do I survive this?.” These are just some of the questions and comments from people newly diagnosed or currently living with Epilepsy. Why is it that whenever we are diagnosed with any health issue, the doctors who treat it, never gives you the full picture? There’s always parts missing and we are left with more questions than answers. If you are newly diagnosed, you have entered the world that you may know nothing about. As a Patient Leader, it has become my duty to help those navigating this sometimes confusing and overwhelming road of epilepsy. I will provide you with some questions you should be asking your doctor. It is never too late to get in the driver’s seat of your health journey.
I want to give you some general questions to lead the conversation with your doctor. Be advised all opinions are my own. If you have more questions that you think should be a part of this list then drop them in the comments below.
1. What are the risks associated with this condition?
Often times we are given the basic risk factors when we are diagnosed with any condition. With epilepsy, we often don’t hear the word SUDEP until it’s too late. I get that death is a difficult topic. No one wants to know that death is a possible risk when living with a neurological condition such as Epilepsy that is usually managed with medication. Each patient should hear about SUDEP in the very beginning and ways to help prevent it. It pains me to have to read story after story of a parent or loved one not knowing Sudden Unexpected Death in Epilepsy even existed. Providers should inform patients of these risks.
2. Are there possible side effects?
When I first started taking anticonvulsants (seizure medication) again, I was given the basic side effects. Those included depression, drowsiness, and change in appetite. What the doctors didn’t tell me was I could also experience weight loss, mood swings, hair loss, vision problems, memory loss and tingling sensations in my body. I can’t say it’s my own individual experiences because through extensive research I found all of these are extremely common with those taking the same medications as myself. Nurses and doctors alike should stay up-to-date with the meds they are prescribing and their side effects. There are millions of people taking the same medications daily so there should be some commonalities.
3. Should I pay attention to any triggers, warnings or changes in my body in relation to my epilepsy?
It took me months after my seizures returned to realize I wasn’t getting better. I was ignoring my body’s warning signs. I realized that the things I was putting into my body or surrounding myself with, were the cause of my more frequent seizures. My doctor never told me that outside factors could trigger episodes. It wasn’t until I told him that when I did A then B would happen, that he confirmed seizure triggers. I began keeping a seizure diary. I logged anything I would eat, drink, my body temperature, hormones and sleeping habits. A research was also performed to find other common triggers. It essentially led to me taking control of my day to day life. Why don’t doctors tell you in the beginning that seizure triggers are in fact “a thing” and avoid at all cost?
4. What level of support can I expect from you and your care team?
Having the best health care team for you is very important. You need a team that will make sure your treatment is tailored for you. That your records are always up-to-date and coherent enough for you and another physician to read in their absence. Your doctor should be one of your biggest advocates on this journey. You might say “but my doctor has so many other patients”. If you ever feel rushed or not valued, it’s time to find another doctor lol. Your life is in their hands so you build that communication with them, you express if you have some concern. Your doctor should be encouraging you to keep up the fight. I know mine does and I’m so thankful for it.
5. What are my treatment options?
20 years ago your only options to battle epilepsy were medication and risky surgeries. These days you are given a plethora of options. These treatments include non-invasive surgeries like the VNS (Vagus Nerve Stimulator) implant, diet change that includes the Ketogenic diet, RNS implants and so much more. All of these options still require medication but they can help reduce the dosage you are required to take. Make sure you are staying current with all of the treatments out there and you aren’t just getting the one size fits all approach. It’s ok to make suggestions.
6. Will you keep me informed of new technologies that could help with my care?
As the world advances, medical technology and medicine advance as well. You can find hundreds of apps and technologies out there relating to Epilepsy alone. Doctors should always look to advance their knowledge by keeping up with the times and you should also be aggressive enough to ask if anything would work for you. In keeping up with your own self-care, you have things at your fingertips from monitoring on the Apple Watch to fitness trackers to digital seizure journals and patient portals that connect you directly to your physicians. Take a new approach to your care and see how far you could go just by doing and learning things with your doctor. Some may be open to looking more into it if you propose the question.
7. Will you make sure we are partners in my treatment plan?
Let’s lose this mentality that whatever the doctor says goes and you have no additional input. You and your doctors should be partners in this. Tell your doctor when something is not working for you. Let them know if you had a bad reaction to meds or the current treatment plan. Don’t just suck it up and deal with it. They can’t effectively help you if you don’t say what’s going on. Speaking up for yourself and being an engaged patient, will form a better bond with your doctors. You shouldn’t ever be in a situation where you have no voice. Now is the time to use it for suggestions or opinions and let your doctor advise what will work best for your situation. Get involved in your treatment plan.
There are so many more questions that you could ask or things you could discuss but these were just a few. I encourage you to be your own best advocate. Don’t be afraid to ask questions. Don’t wait until the appointment is over and wish you would have said something. Keep a notepad or notes handy on your phone to jot down questions you may have for your next visit. Go prepared. There are some amazing doctors out there and they won’t ever be perfect. But, asking the right questions, being engaged with your treatment will save you and so many others.
NEXT UP: Be sure to check out the next post tomorrow at http://livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7 PM ET.