I don’t like talking about my problems. In general, I’m an optimist and I like to share positive and uplifting things. However, two months ago I had a seizure, and in that moment, everything in my life changed and everything stayed the same.
I was visiting my son in Chicago, along with my husband and kids. I never sleep well the first night in a hotel and the first night of the stay was no exception. That morning, I experienced a transient tingling feeling (more on that later). We wanted to explore a new neighborhood and headed to Roscoe Village to shop.
After exploring a few vintage shops and a bookstore, Annie and I stepped outside to wait for the guys. I had that tingling feeling again and Annie suggested we sit down on a bench. The next thing I remember was being in the ER. I’m still not sure how much time passed between that moment and realizing I was in the ER. From the accounts, after I sat down, I went limp on Annie, and then I had a full-blown seizure. They have described it to me gently. My dear son-in-law, cradled my head as they lowered me to the ground. Apparently, by the time I was in the ambulance, I was talking to the medics, but I do not remember doing so.
I went through a battery of tests so they could determine whether I had a seizure or a syncope (a faint.) But the memory loss after the event was a pretty good indicator that it was a seizure. We Ubered back to the hotel, ordered room service, and then slept 12 hours.
The next day, we proceeded with our busy itinerary just as planned. It was hot during that time so I made sure to drink a lot of water. Everyone made sure I got lots of rest at night. I wasn’t left alone for a moment. The kids were upset at what they witnessed. I didn’t have a clue, but I imagined what I looked like.
We visited the Art Institute and checked in on Annie’s products in the two gift shops there – her first big wholesale order a number of years ago! We enjoyed seeing our son and his band play in the Chicago Jazz Fest! We ate Giordano’s Pizza!
When I got home I made an appointment with my primary care doctor. When she heard about the “tingling”, she said that was likely an “aura.” I was familiar with migraine auras – I had experienced that perhaps twice. But this idea made sense. I had experienced this aura twice the day of the seizure – once in the morning and once right before the seizure. I also had experienced it a year prior to this trip – ironically, on a trip to Chicago and the Driftless Region of Wisconsin. We had spent a few days in Chicago and then took a road trip. It was hot that week – 100+ degrees – and we stayed in a different B&B every night. There was a lot of packing and unpacking. I don’t recall not sleeping well. But I do recall experiencing this aura multiple times. I told my husband about it, but it was a temporary feeling. It feels like a tingling sensation going up my arms and through and out my body. I thought it might be due to dehydration and didn’t pay much attention to it. In hindsight, I’m so glad I didn’t have a seizure then. We were on remote roads and often didn’t have cell service.
My primary doctor made an appointment with a neurologist and he told me that I couldn’t drive for six months. The risk of another seizure decreases after that point. I began a series of tests. It took a month to have the EEG, cognitive test and MRI. I was very nervous about the MRI – worried that I would feel claustrophobic. However, it went well (perhaps the Valium helped). The results were soon enough in MyChart and we saw that there were no masses in the brain, which was a relief. When I had the EEG the technician said the doctor would call me if he saw anything unusual. While waiting for my next appointment, I convinced myself that they didn’t find anything.
But they did find something. My husband accompanied me to my follow-up appointment with my list of questions in hand. The doctor explained that the cognitive test and the MRI were normal. But my EEG showed a pattern that indicates a higher than normal chance of having another seizure. He recommended that I start on a medicine to reduce that risk.
I sat a bit stunned at first because I was expecting to hear that there was nothing unusual in the tests. I went through my questions and he addressed them. I told him I would take the prescription but wanted to read up on it and talk to my family. And then my husband asked about life expectancy and told the doctor that he “needed me.” Hearing this, I teared up. (Life expectancy is normal, by the way.) I was simply struck with how my life would change. I wasn’t balling my eyes out, just a little emotional. The doctor stood up, shook my hand, told me I’d be fine and exited the room.
We left and headed to the car where I promptly broke down in tears. I had listened to a podcast a few days prior that interviewed Lou Holtz. Lou is such a positive person. He told the story about his house burning down and how he told his wife (who had cancer) that she had 24 hours to feel sorry for herself but that, come Monday, they would build anew. Well, I thought I’d give myself 24 hours to feel self-pity. I did shed some tears, but pretty soon I had a headache, so I decided that I was done crying.
I had been experiencing quite a bit of anxiety after my initial visit to the neurologist. Many mornings I felt like I was on the verge of hyperventilating. I was comfortable with my family members, but when I was alone or with someone else, I worried about having a seizure. The doctor said I could walk but not ride a bike alone. I do a lot of walking in the neighborhood and it’s very hard not to picture my body crumpled up on the sidewalk somewhere. The medicine I am taking has to be titrated up. It is also used in psychiatry for anxiety, so the doctor said it should help with that as well. My doctor daughter made sure to share the side effects with me.
I have a bit of a psychological issue with taking medicine. I know that so many people rely on medicines to keep them well. However, I was proud that I was not taking any medicines (just a few supplements.) I felt disappointment in some way. But I quickly came to realize that it was important to use every means to reduce my risk of having another seizure.
I did minimal research up to this point. My daughter gave me an article on “Counselling Adults who Experience a First Seizure.” It was very helpful. It acknowledges everything I am feeling – fear, anxiety, loss of control. It describes that we all have an 8 – 10% lifetime risk of having a single seizure and a 3% chance of developing epilepsy, which is diagnosed when someone has experienced 2 or more unprovoked seizures or when an epilepsy syndrome is identified on an EEG. I was encouraged that 60-70% of seizure recurrences occur within the first 6 months and, after that, decreases over time. But I was discouraged to learn that Epilepsy eventually develops in 34% of first seizure cases within 5 years.
There is a number of possible causes and triggers for seizures. The only one that I think could apply to me is sleep deprivation. I didn’t sleep well the first night in the hotel and mentioned that to my husband that morning. That’s when I experienced an aura. So I am taking care to get sleep, but that is not easy with so many thoughts swirling in my head.
So what changed? I can’t drive for six months. In may ways, this is not terrible for me since I work from home. Many of the things I need can be ordered online and shipped to me or picked up at the store. So many family members and friends have offered to help. Sometimes they pick me up to take a walk in the park. Other times, they drive me to the grocery store or other errands. Often my brother makes the UPS drop offs and Joann’s pick ups for me. Even my 95-year-old mother has taken me on errands. How is that for turning the tables? Many people call and ask if I need a ride or if I need anything from the grocery store. I’m so grateful. It’s very hard to ask for help.
Not driving impacts my ability to do a spur-of-the-moment errand or a visit with my granddaughter. In fact, I need a babysitter when I babysit her. That saddens me. I can’t even take her for a walk alone. Most of the time I am with my husband or Annie when I am with Cecilia, but it does remove my ability to watch her alone. Thankfully, my daughter makes sure I have plenty of time to spend with my granddaughter – mostly by inviting her family to dinner at my house!
I have never really been an anxious person, unlike most of my family. However, I have been given lessons in what it feels like and have looked for ways to cope. Relaxation exercises, belly breathing, and less caffeine, helped a bit. I continue to walk daily and have enjoyed this fabulous sun-filled fall. I think a combination of the medicine and acceptance of the situation have calmed me down quite a bit. However, sometimes it is hard to shake the thoughts. The seizure itself was probably more traumatic for my family members that witnessed it than for me who has no memory of it. I am sorry they had to experience that but I am so glad they were with me.
I honed in on sleep as a possible trigger. Stress is also a trigger. Shortly after the diagnosis I was feeling overwhelmed and anxious about the holiday deadlines and the many quilts I still have not completed. I contacted many of my customers and asked if I could push their projects out to next year. Everyone was very willing and expressed kindness toward me that I so appreciate. That helped remove some of the burden on me and helped reduce the stress a bit. I had already decided, prior to the seizure, not to take new quilt commissions so that I can finish my current obligations. I only have four items listed in my Etsy shop. I am hoping to streamline my work so that it is less taxing on my body.
Speaking of my body, it’s gone through a lot the past few years. I had a sore shoulder – likely from cutting fabric/clothes/sweaters. I ended up getting a cortisone shot and did rehab exercises for a year and it feels back to normal. I had shingles at Christmas. I went through a year of possible esophageal reflux. OK, now I sound whiny. But I share this to give my perspective on what I hope will be good retirement years. I plan to keep sewing and working, but at a decreased rate. This will help keep stress levels down and I hope it will be less taxing on my body. I want to be healthy to enjoy retirement!
So what stayed the same? Everything else. I’m still working, enjoying family and friends, taking walks. I feel fine, other than those fleeting thoughts. It’s hard not to know if and when I will experience another seizure. I suppose it’s similar to the worry a cancer victim in remission feels about a possible recurrence.
Life moves on. I’m hoping to make it through the next four months without a seizure so that I can return to driving. If you have experienced a seizure, I would love to talk to you about it.
Jane,
I am incredibly proud of you and taking this step at sharing your horrible experience!
I have a friend who has epilepsy and I have to be honest it’s horrible!
Please get good sleep and I’m so happy that you are living your life as normal as possible!
I will pray for you and that 4 months go by and no more seizures!
Thank God for family because you have a wonderful one! They will be there for you and let them because they need to be there as much as they can! You are loved beyond words!
Take care and remember you know your body listen to it as well!sending love prayers and positive vibes
Love
Kathy
Kathy, thank you for your kind and moving words and prayers! I am blessed with this family, for sure! And it’s so good for me to hear these thoughts. Jane
Last Aug,my daughter was having lunch at MHYC with her friend from high school years when she was stung by a yellow jacket or wasp. Within minutes,she was vomiting,loosing control,and passing out. Stephanie is 52,lives in the Bay Area of SF,and is a middle school teacher. She was transported to the ER,spent 6 hours there,and underwent the same tests as you did. The docs weren’t sure if she had a seizure but also said no driving for 2 months,upon returning to CA,she saw all of her people there and to be safe,also couldn’t allow driving she just regained her license two weeks ago, she feels fine and continues to move on. Scary? For sure, no one still doesn’t know for sure how this happened,the allergist she saw did say she was highly allergic to yellow jackets and wasps,she now carries an EPI pen .until it happens to you,you can’t appreciate the anxiety . Yes,it is a good thing for you to share. We are all our brothers and sisters keepers. Love to you,stay well. You have a lot of livin to do👏😀
Wow, Judy, thank you for sharing this extraordinary experience. Part of the reason I have shared my story is to learn from others, but also to let people know of my condition in case it happens again. I have told many of the neighbors I see when out walking and have thought about sharing with the MHYC staff. Your daughter’s experience sounds very scary. I’m assuming this isn’t a typical reaction for anaphylactic shock? It helps to have others recognize the anxiety and uncertainty that comes along with this. But keep livin’ is what I will do! Thanks you for your insight!
Non of her docs thought that she had a seizure,but just couldn’t be sure ,thus the further testing and driving restriction, her license was restored a few weeks ago,but like you,she had to rely on her teacher colleagues at Sacred Heart School in Atherton .there were four living close to her so that was a blessing. When she saw the allergist in CA,he said she was highly allergic,and that he had seen such a dramatic reaction before. She now carries an EPI pen. .another important thought,weneed to be our own advocate..Sounds like you are doing just that also. Take care. 👏❤️
That’s so true about being an advocate for ourselves. I intend to be that. We are in the middle of being that for my husband’s father – almost 98! It is not easy to navigate the medical silos.
I have it a little better since I had over 35 years in healthcare however, it’s still very time consuming,a challenge for sure. Take care.
I’m so sorry you’re going through. It sounds scary.
I’m the same way with medication. I am not currently taking any and hope to not need them but when you need them, you do.
Take care of yourself.
Thank you for your kind words Connie!
Hi Jane,
I don’t know you and don’t even remember how I came to following your Facebook page (which I thoroughly enjoy) but I believe sharing your story will be healing for you and helpful to others.
I have never had a seizure but have experienced that punch in the gut feeling with a melanoma diagnosis. I am a few years passed the supposed magical 5 year mark but as you have pointed out, will live with the knowledge that this insidious disease can rear it’s ugly head at any time. As time goes on you’ll be able to put it further in the back of your mind but there’s always going to be that ‘look over your shoulder’ kind of feeling. I am more of a glass half full kind of person so I have chosen to try to focus more on the blessings, and there are many, in my life and put those darker thoughts as far back in the recesses as I can.
You have a very positive attitude and if there’s anything I truly believe, it’s that when it comes to any kind of illness, the more positive your attitude, the better the outcome.
Take care of yourself and enjoy your blessings.
MaryBeth
MaryBeth,
Thank you for this thoughtful comment. I understand the punch in the gut feeling – but can only imagine the fear of a cancer diagnosis. Melanoma is a tough one – spreading so rapidly. We have had a number of people in our circle that have dealt with it. I am so glad that you are 7 years past that time. I agree that the thoughts recess, but will likely be there. Focusing on the blessings in my life and realizing how normal my life is, will ultimately help. It feels funny when people ask me how I’m doing. And I say good. I’ve acknowledged that I had a lot of anxiety in the beginning, but that is diminished. But I think some people expect me to not feel well in other ways and that is not the case. I am grateful for that at least. Thank you so much for sharing this story. I do not know how you came to follow me. Sarah at Clover Lane perhaps? Or maybe just my internet fame? LOL However you came, I appreciate you. It truly is amazing that I have connected with so many kind and thoughtful people on the internet. It’s a blessing.
Jane
I’m so sorry to hear about your seizures and all of the stresses and anxiety that comes with it. I’m glad that you are surrounded by a wonderful family to help you through everything.
John and I will definitely keep you and your family in our thoughts and will be praying that you remain seizure free from here on out.
Courtney, thank you so much! It certainly has been a challenge, but I am fortunate to have so many supporting me! Even my friends who have never met! It truly helps.
Jane,
Love, hugs, and prayers for you and your family. You and your family are amazing and your strength will carry you through. I wish you many blessings and the confidence and grace to walk forth without too much worry. People are amazing and will help you overcome any obstacles you face. Love, your loving cousin.
My dear cousin, thank you for your prayers and kind words. They life me up. I am blessed to have supportive family and friends. I can still hear your voice and see your smile! Miss you!
Jane,
Thank you for putting yourself out there and sharing. It is important for people to understand that people often have struggles or fears that are invisible to their social network friends, or even their in person friends. I’ll pray for you to have peaceful thoughts and an uneventful six months. Self care in retirement is important. Thinking of you.
Greg, thanks for that perspective. You are right, we often don’t know the invisible struggles of others. I hope that when I am with friends or even strangers, that they can find someone in me that listens.
Right now, outwardly, I’m typical, plain Jane. Inwardly, not so much, but those “what ifs” are getting quieter every day. Thank you so much for your prayers and kindness.
How frightening and disconcerting this experience must be! Thankful you have had good care and I hope the medication is helpful and you don’t experience another seizure especially in this critical 6 month period. It must be very difficult to lose some independence but how fortunate you have so many surrounding you with offers to help. Sending positive thoughts that this is behind you and the adjustments made keep additional seizures at bay.
Thank you for your kind thoughts and understanding. Losing some independence is hard, but I have had lots of offers to help so that makes it a bit easier. I am hopeful and prayerful that the medicines and lifestyle changes will help as well. I hope I remember how to drive!
Dear Jane,
I found you years ago as I decided I would make become a quilter in retirement. My first project was your beach quilt, made with fat quarters.
Anyway, I am writing to say I am sorry you are going through this time with having a seizure.
I had my first seizure when I was 15 1/2. (That 1/2 was so important years ago! Not so much, anymore). I had a few seizures through my teen years. I totally understand the driving frustrations. My seizures were always when I was asleep—which turned out to be a blessing. My parents became very light sleepers.
About 38 years ago I had my most recent seizure. Again in my sleep—but it was my husband who I awoke this time. I had been sick with a stomach bug, and was unable to keep meds down.
I am STILL on 2 medications—Dilantin and Mysoline. I don’t think either is the “drug of choice” for treating seizures these days, but they work, I’ve stuck with them. Years ago my neurologist decided my family doctor could monitor the situation. He wondered if we should try taking me off the meds—but at the time, my daughters were keeping me SO busy, and I didn’t want to risk it. Mostly because I wanted to drive!
Your experience with auras is described so well. When I was a teen I couldn’t find the right words. I called it “that funny feeling.” Mine was also a tingling sensation, sometimes in my arm, sometimes in my back.
My mom kept a small notebook with details of each episode. We determined it was closely tied to my menstrual cycle. Hormones, I’m guessing. And since the last one was a couple years after birth of my second child, perhaps that’s right.
Stress can indeed be a trigger. And lack of sleep. Strobe lights can also trigger a seizure, but I’ve not experienced that.
Forgive me—I am rambling.
I am in Akron, so we could get together sometime if you’d like.
(Or text or call)
One last thing—if folks offer to drive, accept graciously. Do not take away their chance to be a blessing. It’s hard to be on the receiving side after being a momma and a giver for so long. :)
Bev Smith
330.801.1539 cell
Bev,
Thanks for sharing your story with me! Let me first say I am glad you found me and am thrilled you made my beach quilt!
I am learning so many helpful things because I wrote this post. I can’t imagine experiencing seizures as a teen (and laugh at your 1/2 age remark.) That is interesting that they occurred during sleep.
The most recent one sounds concerning. I will ask my doctor about missing medications. (That list of health issues above didn’t include the bout of Norovirus 30/50 got on a recent family vacation. Worst stomach bug I’ve ever had.)
I’m so glad your medicine is keeping the seizures at bay. A couple people have commented on my various posts that they have been able to move off medicine. I can understand not doing that and at this point, I have no plans to. I did ask the doctor if they ever do an EEG again. I was curious if the pattern would be the same. He sad they do, but we didn’t talk about when that might be.
That is interesting about your auras. I was never aware that they could exist prior to or even instead of a seizure. It certainly is strange but if I feel it I’m going to take measures to be safe.
I do wonder if hormones play a part. I read that for adults, after 60 is when they are likely to occur.
I’m in Mentor, so not too far. I appreciate your offer to meet or talk. I have your email now with this comment. So thank you!
As far as offers of help – you are right. These kind offers are amazing blessings. I have accepted many of them. I just save up any errands and run them when people offer. This is especially helpful since my husband is busy helping his father who is almost 98!
Life just isn’t easy sometimes, but I’m grateful for family and friends and for the wonder people in my online community, like you, who are so supportive!
Thank you!
Hi Jane,
I feel like I know you because I’ve been following you for years, and I think I found you through Sara Turner. I also love to sew and enjoy seeing your projects. I have nine grandchildren, and I sewed a lot for them when they were younger. But now they’re preteens and teens and don’t want grandma sewing for them anymore. so I love seeing Cecilia in the office you make for her!
I’m sorry to hear you’ve had health problems. Although I’m a good 10 years older than you, I’ve had some health scares this past year. In June, I had my aortic valve replaced, and then this past Tuesday I had Surgery on my right carotid artery. The same day, my husband had his big toe amputated because he is a diabetic and doesn’t follow the diet. We were both in different hospitals, but luckily we have five children so they could divide and conquer.
I understand your feelings after having a health scare, because I’ve had them this past year also. I feel like something else is always going to happen, and I’m trying to lose weight because I think that could’ve caused some of my problems. I cannot drive for 30 days., Because I had to take oxygen when I came home from the hospital and I can’t turn my head because of the carotid artery. All in all, I’m lucky to be alive so I’m not complaining. It’ll keep enjoying your posts! Thanks!
Hi Margaret (my daughter’s name!),
Thank you for taking the time to reach out to me. Ah, I so miss Sarah – her writing, her wisdom, our texts to each other about our problems. Mine seem so insignificant compared to what she had to go through. She was a real gift and so kind to share my business on her blog. I’m glad you found me!
I’m glad you enjoy sewing! And nine grandkids! Wow! What wonderful family gatherings you must have. I hope to sew and knit lots of things for Cecilia, my little doll, and, I hope, for future grandkids!
It sounds like you have gone through quite a bit. I think you are about the fourth person in my orbit that has had issues with heart valves, And then the other issues. I totally get it. We have had one challenge after another recently (which I didn’t talk about here.) It can wear you down, but we keep on going. It’s wonderful that you have a big family to help out.
Best of luck to you on your health journey. Little steps, but keep moving forward.
Thanks so much for being a part of my community!