Epilepsy or Seizures & The Emotional Roller Coaster
My dad had his first seizure when I was 10 years old. I remember being confused by his reaction to his developing epilepsy, and my family members felt the same way. He seemed to want to ignore what had happened, and he seemed to be in a mixture of complete denial while also being aware of it and just not caring enough or wanting to be careful enough. I was terrified for him. He lived alone, and I knew that his risk of having a seizure without anyone realizing it was quite high. I hated that he wanted to blow off doctors appointments or to not follow-up on test results.
I had my first epileptic seizure last October, at age 23. You can read about my first seizure and my second seizure in my past blog posts if you’d like. Prior to my first seizure, if someone would have asked how I would respond if I were to have a seizure out of the blue, my answer would have been simple: PANIC. I’m prone to anxiety about small, trivial matters. I would have guessed that I would be terrified about my health, and that I would want to have as much testing as possible to get answers as quickly as possible. I would have guessed that I would be completely on top of my medication and avoiding risky behaviors such as drinking or not getting enough sleep (alcohol and sleep deprivation both lower the seizure threshold). I would have guessed that I wouldn’t hesitate to accept the reality of my situation, and that if I found a medication that prevented my seizures, that I would be terrified to get off that medication even years later.
Yet, my real reaction to my seizures has been quite different. It’s now been about 8 months since I had the seizures and I’ve experienced a roller coaster of emotions, several of them I’ve experienced several times over. Fear or panic has not been my primary reaction like I would have expected. I think my friends and family members have probably been a bit surprised by my reaction. I realize that there are probably a lot of friends or family members of people with seizures and/or epilepsy who are struggling to understand why their seizure-prone loved one isn’t reacting the same way that they are. My goal for this blog post is to share the roller coaster of emotions that I have experienced and why. I’m going to run in the order that the emotions showed up for me.
Confusion. When I first “came to” after my seizure my first reaction was confusion. I felt like I had been sleeping for HOURS and was waking up mid-dream. So, it was confusion but not a logical, well thought out confusion but instead just a really surface level “hmm that seems odd” type confusion.
(emotional) numbness: Once I was at the hospital, I remember realizing that others (Ryan, my mom, etc) were quite worried about me. Everyone seemed serious and concerned. This was mildly confusing to me because I was still in a “foggy” mental state and the reality of what had happened hadn’t hit me yet.
Exhaustion: Despite having felt like I had been asleep for hours when I first “came to”, I was still exhausted afterwards. I did a LOT of sleeping and when I would wake up I still felt tired.
Frustration: I was hospitalized for five or six days after my second seizure and on about day three of being in the hospital I became frustrated. I was tired of being poked, prodded and of just being in the hospital in general. I was frustrated that I had so many people concerned about me because I just wanted to sleep and have time to myself to absorb what had happened and to wrap my mind around it.
Denial: After getting out of the hospital, I googled seizures and read that most of the time, doctors don’t medicate people after a single seizure because their odds of having a second seizure are fairly low (under 50%). If a person has 2 seizures within 2 year,s their odds of having a third seizure are more likely than not (over 50%) so after a second seizure medication usually is started. After being out of the hospital for a little bit I remember saying to my boyfriend “I guess I should try to accept that I ‘just’ have epilepsy. That maybe my brain just had a seizure for no apparent reason and we won’t find a cause and my brain just needs anti-epileptic medication to avoid seizing now.” I meant to suggest this as a ‘worst case scenario’ that I should try to mentally prepare for. Yet as soon as I said it, I realized by the look on his face that my boyfriend believed that to be true already. He had already accepted that my seizures weren’t just “random” and that something in my brain had changed. I was still assuming that we would find some weird answer such as an infection or illness (even though all of my testing came back normal and I had no symptoms of illness prior to, during or after the seizures). I was in denial.
Sadness. Once I realized that I didn’t have a seizure as a result of any illness, infection or other “random” cause, it started to sink in that we probably wouldn’t get answers to what had happened, and I was probably at a high risk of having more seizures if I weren’t on medication. This was hard for me to swallow and caused sadness.
Hopelessness. I was 23, childless and had been with my boyfriend for 7 years when I had my first seizure. After accepting that I was probably now dependent on seizure medication to avoid seizures, I realized that this was an important factor regarding getting pregnant, being pregnant and giving birth. Even the safest of seizure medications increase the risk of birth defects, even though the risk is fairly low (my neurologist said about 8% vs the general population being at about a 2% risk for birth defects). I also began to realize that with my father having epilepsy, and now me having seizures myself that perhaps this is somehow genetic and if I do have a healthy pregnancy and birth, I could pass the epilepsy on to my child. This is the hardest for me to handle because I love children and have always dreamed of being a mother someday. At first, I was fixated on the thought that if I have a baby while on seizure medication and then my baby has a birth defect, or I miscarry, or my child has epilepsy I would forever feel guilty. If any of those things happened, would I live in regret feeling selfish for having chosen to go ahead with having a baby knowing my risks? If that IS selfish, then isn’t the obvious unselfish thing to do be to not have children? Not having children has never really felt like an option for me. So for a while I became overwhelmed with helplessness.
Determination. After feeling hopeless for a while I realized how much I had to be thankful for. I was seizure-free since beginning medication. I have read stories of people who have completely uncontrolled seizures and I can’t even imagine how difficult that must be. I felt terrible for feeling all of these negative emotions regarding my situation when SO many others have it much, much worse. I realized that I needed to force myself to be determined to live with my seizures/epilepsy regardless of how many seizures I have or how it affects my life. Having children has been a dream of mine longer than anything else, and I realized I can’t let epilepsy take that from me no matter what.
Avoidance. It took me roughly 3 months to really wrap my mind around what had happened to me. I have always been a bit slow to accept change or big events. I have to repeat things in my mind over and over before I can find peace with them. Having seizures turned my world upside down and it took me a full three months to pick everything back up and put it back in place. During that three-month period, I was really up and down with my thoughts and feelings surrounding what had happened. I live in a small town so it’s hard to go into any store or business without seeing someone I know. My family members had posted on Facebook about my seizures (I did not) so it seemed like everyone knew what had happened. I ran into the grocery store and the bank and would be stopped by people who I only see a few times a year asking me details about what had happened. I was still trying to make sense of it myself, so I didn’t really have the ability to explain it all to other people. Sometimes I didn’t want to think about it at all, but even when I wasn’t avoiding thinking about it, I didn’t have an interest in re-hashing the details with people I am not emotionally close to. So I wanted to avoid most of the people I knew.
Loneliness. While I avoided going out in public too much to avoid having to talk about what happened, I found that this made me lonely. I needed more social interaction than I was getting, but I was afraid that venturing out into the world more would mean I had to address what happened, so I felt stuck between a rock and a hard place.
Anxiety. Both of my seizures happened at night, within an hour of falling asleep. For months (five or so?) I don’t think I laid down for bed a single time without the thought of “what if I have a seizure in 20 minutes?” crossing my mind. This made it really hard to fall asleep , and then I would start thinking about how NOT sleeping increased my odds of having a seizure (sleep deprivation) which increased my anxiety and the cycle just kept going. A few nights I would lay in bed for over 3 hours before finally falling asleep. I also experienced anxiety when going out with my mom or my sister when my boyfriend would stay home. I knew that he handled my seizures perfectly (calling 9-1-1) but I have never really seen most other people respond to a seizure so I’m not sure if they would freeze or panic or if they’d get me help. I was particularly anxious about going with my sister because her children were only 1 and 4 and I was afraid of having a seizure in front of them as that would be traumatic for them.
Panic. Every once in a while I’d have a new “symptom” that I had never experienced before and I would panic, thinking that it might be an aura. I had read that many people with epilepsy have auras that include things like “floaters” in their vision, the smell of burning rubber, a smell of gunpowder, a metallic taste in their mouth, sudden confusion/brain fog, etc. Our apartment had a radiator style electric heater that ran along the base of our living room wall. Once a pair of waterproof gloves fell onto the heater and started to melt, and my heart started beating so quickly and I blurted out “I smell something burning! Do you smell something burning?!” and to my horror my boyfriend said no, he didn’t smell anything. I felt like I could barely breathe and my chest was tight because I was so panicked. Thankfully, my boyfriend got up and walked around and then said “Oh yeah I do smell it over here” and then found the glove so I realized it was a ‘real’ smell and not an aura.
More denial and avoidance. The last few months (5-8 months post-seizures) my primary emotions have been denial and avoidance. I feel exactly like I did before having seizures. I’ve accepted that the odds of any kind of test showing a cause for my seizures is highly unlikely. So, when it comes to making appointments at my neurologists or scheduling testing that my doctor or neurologist wants me to have, I tend to just want to avoid going. I don’t feel like the odds of the test showing anything are very high, I hate how going through with the testing makes me recall what happened, and I just don’t enjoy being at the doctors or having testing done in general. Logically I know that it makes sense to do whatever testing and appointments my neurologist feels are worthwhile, but it’s emotionally easier for me to avoid appointments and tests and just avoid having to think about seizures or epilepsy at all.
If you have had seizures, please feel free to share what emotions you’ve dealt with in the comments. Or, if you love someone with epilepsy feel free to share your emotions about the situation as well. The goal of this blog post is to increase awareness of what emotions may come along with seizures and an epilepsy diagnosis, but I’m only one person so I’m sure others out there have different experiences and emotions.
I also want to apologize if this came across as whiny or ungrateful for how lucky I have been to have seizure control while on medication, and to have very few side effects from medication. I realize that my situation could be much worse than it is, and I’m somewhat ashamed of the emotions that I’ve felt in the past (primarily hopelessness and sadness because others have it so much worse) but I wanted to be as honest as possible about my experience. My goal isn’t to whine or complain or get sympathy at all, I just want others to realize they aren’t alone and their emotions post-seizure and/or epilepsy diagnosis are normal.
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Thanks for being brave and sharing your story. Millions of epileptics desl with depression, anxiety and public misunderstanding / social stigma about the disease / neurological disorder. I would live to recommend the linden method to you to help you with youv anxiety. It changed my life. Google it.
This is a brilliant write-up of the emotions. I’ve had seizures all my life (diagnosed at five, but on a roller coaster as far as severity and frequency, mostly along with hormonal changes). I went through a period of six years without seizures, on no medication (that denial thing? yeah.), then three weeks before I got married, I had a tonic clonic. I hadn’t even mentioned to my husband I had seizures because he didn’t know me before, and I just never thought about it anymore. I remember telling him it was okay if he didn’t want to marry someone who was “broken.” He had to reassure me I wasn’t.
All the emotions about children were there, too. I feel you! <3 *hugs* We decided to put it in God's hands. We never conceived, but we did end up adopting a beautiful little girl who is amazing. 🙂
And you didn't even mention feeling like you need a full-time babysitter (as an adult!), or all the emotions that go with losing your driver's license (even if it's only temporary).
I'm so happy yours are controlled. Mine are on about a two-year cycle, and I'm at my two years, so every morning I say a prayer of thanks that today wasn't the day! Who knows? Maybe I'll go six years again! 🙂
I hear you on every part of your comment! It’s so hard to know if you’re in denial or if it’s possible things have really changed. My dad had seizures for 7 years (1-2 a year on average), then went 2 years without so he was taken off of medication. It’s now been about 7 years since he got off of medication, about 9 years since his last seizure. He has no understanding or explanation for why he just is okay without medication now. It’s nice but it’s kind of scary at the same time. I wish we knew what had changed to make him okay now, or if he’s just gotten incredibly lucky and they’ll come back eventually? He lives alone so it scares me. I wish the science side of research would find something new so we could all understand it better.
I can really understand how you feel about having epilepsy. I am 57 years old and I was born with epilepsy . It is on my moms side of the family. when I was little I always had staring spells and everybody said that I was a daydreamer I never thought anything of it, when I was in elementary school 5th or 6th grade I really started to notice I started noticing things that weren’t there and people said I was weird and then I would talk and stop in the middle of sentences and I would catch myself and I did not know why this is happening. This went on until I was 16 and then I was in a car accident which I had a major head accident. I was never on any medication for anything. 3 years after my accident I had my first grand mal seizure in the shower. Certain sounds would set off my seizures. From the sound of running water to the sound of a person’s voice. I have two children and they do not have epilepsy they are 35 and 30 now. So far so good but things can skip generations. I have been on medication on and off since I was 19.. And then I started again when I was 26 religiously the medication has taken a toll on my body I have taken over 15 different medications, I have lost my gallbladder, my appendix and had a built up kidney stones. And due to one of the medications it has broke down for me to have osteoporosis. I try to keep moving as much as possible and watch what I eat and stay away from fast food as much as possible. I exerciseAnd walk as much as I can but I had a really bad fall 2 years ago and broke my back, it was a seizure early in the morning. I got to use the bathroom at 2 a.m. and the next thing I know I’m lying in a puddle of blood I had hit my head on a towel rack and cut my head from ear to ear I had to have over 100 stitches. I just remember waking up looking in the mirror washing the blood off and calling my kids + 911 and then 5 or 7 days later waking up in the hospital. I had dislocated my jaw, my tooth had went through my lip, had taken half of my scalp off and had broken my back and my tooth. I live by myself and everyday I worry about having a Grand Mall I have to relax and not let things get to me. I read books and watch a lot of TV. I cannot look at flashing lights for fear of having a seizure and because of my seizures I cannot drive. Thank God for my two kids and good friends they did check on me but I hate taking my medication but I have been taking it for many years and I guess I will and I want to live and see my grandkids all you can do is B positive and persevere that’s what I do. Over the years I have had other injuries but the one a couple years ago was the worst. I hope things will get better for you whether you are on medication or not still have your children they are a blessing I was on mysoline when I had my son in 1985 and he seems to be doing okay. I wish you well
OMG that fall sounds horrible. The injuries after a seizure used to make me think “wow I was lucky it wasn’t worse”. Might seem we’re not watched over but we are all still here. Hope you recovered ok.. THis really sounds like a bad fall and I feel for you.
Wow it must have been so challenging to diagnose your ‘staring spells’. Even now you hear so many stories of modern kids being undiagnosed with those kind for years because they’re so hard to catch. I can certainly see how 50 years ago they would be overlooked entirely. Dealing with seizures off and on, and all of the medications and side effects is really something. You’re such a strong person to cope with all of that. My situation has felt like a roller coaster for me and I’ve been very lucky to not have bad side effects from medication and to be seizure-free as long as I am medicated. You’re a tough one!
I appreciated your post! My situation is similar. I had my first 2 tonic clinic seizures at age 27, within the last year… thankfully my epilepsy is under control so far with meds. Grateful my situation is not worse but still struggling with diagnosis and medication side effects. Not many posts like this. Thanks for sharing your story.
What kinds of medication side effects do you deal with? I know they can be really tough on a lot of people. I feel so lucky that I don’t really seem to have any side effects. Prior to it happening to me I didn’t know that 20-somethings could just develop epilepsy overnight like I did so I thought my story was worth sharing even though I know I have it really easy compared to many with epilepsy seems how the medication completely controls my seizures and I have no side effects.
I appreciate your story. I have been recently diagnosed with epilepsy at age 33 and at this current time I feel stripped away. I am experiencing high anxiety and fear when I go to places with my family not knowing when an episode will happen. My wife is being very supportive but with this life changing event it has made me become withdrawn and irritable. I have tried to reach out to the local Epilepsy Foundation for support but I have yet to receive a response. Again thank you for your story.
Sorry for the late response in my comment. I hope your local epilepsy foundation has reached out for help. If not, it might be worth meeting with your neurologist ot see if your emotional symptoms of feeling withdrawn and irritable could be related to your medications? I know sometimes there are emotional side effects for some drugs. On the other hand, just the reality of having to cope with the diagnosis and limitations on freedom like not being able to drive can also cause frustration, anxiety, etc. I bet it’s hard to tell what is side effect and what is just the impact of the life changes sometimes.
Reading some of these posts is scary and I thank God my epilepsy is not that severe. I’ve had it I was a child but I never knew because my mother was embarassed. Guess I did the staring “daydreaming” stuff but wouldn’t take the medicine because nobody would tell me what it was for. I had my first grand male seizure at 18 then started medication which has been changed only once – I’m 66. I’ve had my license suspended a few times after seizures at work and in public. It was always restored but I stay aware of how I feel before I drive. I have 2 grown children who have witnessed seizures and over the years I’ve become more open about my condition. I live alone now but I have family nearby to depend on if needed. Now I have syncope – which in itself can cause a seizure – so I need a heart monitor. My ex-husband was surprised that I was able to do so much on my own but like I said I’ve been lucky to lead a pretty regular life. Thank God.
Thanks so much for sharing your story. I hesitated to post my blog post originally because I knew I have it easy compared to many with epilepsy. However, I also thought there would be others like me and you who mostly do okay but still have to come to terms with the diagnosis which in itself can be difficult to wrap your mind around. I feel lucky to be almost 2 years out from my original seizures and still seizure free since beginning medication but I always worry that I will lose control someday. Sometimes I read stories of people who had medication work perfect for them until they got pregnant, got in a car accident, or until they hit menopause or something and then they have uncontrolled seizures. It’s tough to not know what the future holds. I just try to be thankful that i’ve been lucky this far. Nothing in the future is guaranteed!
Thanks for writing this up. Yep it seems like everyone’s emotions are the same so it’s pretty easy to see why people that don’t have Epilepsy are just as confused as we are. Look into this crew. They are doing great things with an epilepsy app that you might want to take part in http://www.epilepic.me/
One emotion you haven’t listed here is self love. Took me 25 years after diagnosis. Way too long. Great that there is so many people talking about it now in a positive way…me included
I started having seizures March 28th of the year I turned 18. I just turned 20 in January, so they are very new to me. As you talked about in your blog, I have done numerous tests with multiple neurologists and none of them show why I have suddenly started having my seizures. I am taking medication, but still struggle with seizures every now and then. I wanted to comment because this is the first time that I have found someone who feels the same way I do. Yes, I know that many people have it worse off than I do, but it doesn’t change the fact that sometimes it depresses me. I was an athlete in high school, and I am currently in college on a softball scholarship. My epilepsy is really affecting that, however. My roommates witnessed my first seizure the other day and now they treat me differently. In fact, everyone on the team does. People simply don’t understand what is going on with my brain and epilepsy in general, and it scares them. They often make me feel like a freak. Thank you so much for sharing.
I’m so glad my story helped a little bit. I can imagine how tough it is to see your peers react differently to you. I try to remind myself that the change in their reaction to me is out of love. They are worried about my wellbeing which is what causes them to be more hesitant around me. Still, I completely understand how you just want things to be the same as before.
Thanks so much for your post. I just had my third tonic clonic seizure about a week ago and am really struggling. I have been having “absence seizures” since about age 8 (am now 21) and medication got those under control. 3 months before my 21st birthday I had my very first tonic clonic seizure, with the second following 7 months later.
In the past I figured my seizures were caused by lack of sleep, which is easy enough to fix, but the latest seizure happened at 9:30 in the morning, right after I woke up from sleeping at least 8 hours.
My mother had seizures due to renal failure and I saw what the loss of independence did to her. I’m now experiencing something very similar. I cannot drive, need to have an MRI, can’t work, and feel like I need an “adult babysitter”. I am feeling frustrated and slightly depressed now. I have an amazing boyfriend who has been nothing but supportive, but I feel guilty to be dating him. I feel he deserves to be with some one who is healthy and isn’t “damaged” the way I feel I am. It doesn’t seem fair to him. I guess this is the biggest emotion that I struggle with- guilt and wanting to protect the people I love from having the pain of being a part of my life and “dealing” with me.
I remember feeling guilty about the stress I was causing my boyfriend as well. However, it helped to just tell him I was feeling that way so he understood and could explain how he didn’t view me that way at all. I think those guilty feelings often stem from a bit of depression that can come from just trying to accept your diagnosis. A big part of depression in general is feeling like a burden. I’ve been able to work through it by talking to friends or family members but if that doesn’t do the trick for you then talking to a counselor might be useful too.
I got menegitis and encephalitis in 1999 and ended up with epilepsy. Before that I have never been sick in my life. I have lead a very full and active life. Owned many very successful businesses and have been very independent. Well, in 1999 I got a very high fever and ended up in a coma because my brain swelled and I lost my short term memory. It was very bad. I had to be basically be put in a “bubble” room. Anyway…long story short, I am not able to drive or work. I did try to go back to work, but was unable to do the function that I was doing. I have auras (I get a metal taste in my mouth and I also get a feeling of dejavu) and that lets me know that I am going to have a seizure. My medication mostly works, but not always. I have tried everything. I now take Keppra and topomax. I no longer have grand mal seizure, just petit mal. I am thinking about brain surgery. Well, that is my story for now. My journey has been along one and my husband has been with me the whole way. Even when I forgot we were married. He is wonderful. Thanks for listening.
Your ‘even when I forgot we were married’ line made me tear up. When I look back on my experience, the part that always makes me tear up is now I was afraid of my boyfriend after my seizures, even though we had been dating 7 years. It’s such an awful thing to think that you are capable of forgetting your #1 person even for a few seconds. I am so glad that you have such a supportive husband. I know my boyfriend has made my whole journey so much more tolerable for me.
I had a seizure in November last year. I was at my son’s house and his wife called 911. She had never seen a seizure before and was pretty freaked out. I’ve had some fainting spells but not a grand mal seizure for about 3 years. I have the same “adult babysitter” issues as most epileptics do, especially when it comes to everybody checking on me all the time. My mother told me I should never get married and definitely not have kids because I wouldn’t be able to “function normally” as a wife and mother. I’ve been married for 42 years and have 2 children and 3 grandchildren, all of them happy and healthy. I don’t know if anybody in my family was epileptic so I can’t address the issue of genetics – only hope that if it is it doesn’t affect any of them. My greatest sadness is that my kids are reluctant to leave their children alone with me for fear something might happen. I understand that but it doesn’t let me be the kind of grandma I’ve always wanted to be. But ….. chin up! There are worse things in life!
It’s so reassuring to me to hear how so many people here have went on to have kids and even grandkids without them having the same problems. I feel so lucky that my seizures are controlled but I still worry about the potential of mine being genetic and passing that on.
Love this post. Unfortunately, my seizures are not controlled. My family still freaks, but I’ve gotten to the point where they are just there. It is so hard to accept them, and depression is a major part of epilepsy. I remember when it first hit me it might be difficult to have kids: even though I hadn’t even dated a guy I sat down and cried. I now know several epileptics that have children, but it still is a huge uncertainty.
Thanks for sharing!
I hear you completely. It’s reassuring to hear how many people with epilepsy (Controlled or otherwise) are able to have healthy pregnancies and healthy kids. For myself, even with controlled epilepsy, it feels risky. I wish there were some way to know the odds.
Wow! As I read through your emotional rollercoaster I had tears rolling down my face and a lump in my throat. I started having seizures about 2 years ago and can relate to your words so deeply. Thank you for sharing, in your honesty I found a lot of comfort.
I am 62 and had a seizure 7 weeks ago. I was waiting to tape a television show and then woke up in the hospital. I was very embarrassed because I heard the EMT tell someone was was very combative and that is not me at all! The hospital doctors said the Tramadol I was taking for my arthritis pain caused the seizure and put me on Oxycodone and a seizure medication…I couldn’t function and could hardly do anything but sleep! I totally felt as though I had lost ‘me’! I refused to take the Oxycodone before I left the hospital so they prescribed Hydrocodone which wasn’t so bad but I weaned myself to I only taking it at night. I saw a neurologist 3 weeks later and he changed the seizure meds to Lyrica. He stated he had read the EEG the hospital did and that I have abnormal feontal lobe activity which tells him I have Fibromyalgia. I had never heard of Fibromyalgia causing seizures but I am trying to trust him. Thank goodness my husband has been so supportive and I have many family and friend angels who are there for me! I still have some symptoms that I can’t figure out if they are medicine or seizure related but as each day passes all is better.
When reading this it felt like I had written it myself or was thinking it in my own mind on the spot. This is so exactly similar to my situation; 2 seizures at night with my partner by my side and the ambulance called, all the tests, the medication, the emotions, all those exact thoughts in all the same sequence. Thank you for sharing it makes me feel sane.
I’m 45 I’ve had seizures since I was 3. They have always played the drug game, but on the bright side I guess I’ve been on epival and tegretol cr for years now and drive again. A few years back my meds went low and I crashed my truck bad. I was a mess my life changed for work and life in general because I was the only one in my house who drove. I find in the last ten years I don’t react normally to some situations where others are crying, for weddings, funerals, or even my family. I don’t seem to have much emotion at all( introvert). It’s really starting to bug me, and I’ve had it brought up to me in the past. Doctors tell me it’s controlled in my brain. Does anyone else have this problem?.
I know you wrote this some time ago but thank you for sharing. It is wonderful to know that the feelings I have are completely normal. I have been through most of the stages that you mentioned. I am 40 years old and had my first seizure in May 2017. My second was 8 months later in January 2018. I thought I was in the clear. I had no idea that epilepsy could start this late in life. We are still working with several neurologists in hopes for some answers but I realize that may never be the case. There are moments I wish that I could have just one more day prior to my first seizure so I could feel that freedom and remember what it felt like without the anxiety and worry about ‘the next one’. I have three beautiful children but they are young and need there mama. I worry about what will happen if they witness me having a seizure. I worry about a possible genetic link even though I have been told that is very small since no one has seizures in my family history. I just try to focus on all the wonderful blessings I have in my life (a fantastic husband, beautiful kids, friends and family who love me).
I very much appreciate your insight and honesty. I guess I can speak for the parent as my son was recently diagnosed with epilepsy. He’s 10 and began having what were probably absence seizures at school. Maybe one a year. No one realized anything was odd until last year when his friends noticed he “zoned” out during PE. Since he didn’t appear hurt and wasn’t unconscious, it went almost unnoticed until I was told that he’d gotten into the wrong line of kids and went to the wrong teacher’s classroom. That got my attention. I started asking questions, took him to the dr, and ended up with even more questions. His seizures have since become more frequent and the type seems to have changed with the last two. Oddly enough, I’ve never seen one. It seems to only happen after being very active in PE and at the same general time of the morning. Now I’m not sure he hasn’t been having seizures for several years, just not very often. He has trouble focusing in school and we thought he had ADD, which he may still have, or it could be the almost constant seizure activity that the EEG shows goes on in his head even when he’s not actually having a seizure. After beginning to give him meds for ADD, about 4 months later, he had the first seizure that we know about. I thought it must’ve been connected with the Focalin and we changed his medicine but the seizures continued. Needless to say, I have felt my own spectrum of emotions. Denial hoping that they were caused by the medicine. Guilt that I started the whole thing trying to help him with school. Disappointment that the seizures didn’t stop after we changed his meds. Extreme sadness, even grief, at what he has already had to deal with. You see, he was born with a cleft lip and palate and had already had several surgeries and dental problems and procedures with more yet to come. I worry about his anxiety. It is very hard to contain my emotions, especially now that I pretty much have to admit that it is really epilepsy and it might not go away. It’s really hard for me not to hover but at the same time I want to push him to not use this as a crutch or excuse for anything or to feel sorry for himself. We’re greatly blessed, he’s a wonderful kid, and I know that God has a plan for him to help others. It’s just very hard to separate what you know from what you feel, especially when it’s your child. Hopefully we can bring more awareness to epilepsy, help people to recognize what it can look like and how it hangs over your head constantly, and that those with this disorder won’t have to worry about their friends making fun of them and not believing them. I want to explain it to others but I know they won’t understand and really can’t. Bless you and know that there are many who struggle either directly or indirectly and understand, at least some of what you’re going through.
Reading this was like reading my own story, except I was diagnosed around 12 and I’m the only one we know of in my family. Mine is controlled by medication and I feel the same guilt for the sad and lonely feelings, when I know so many more people have a harder time.
Thank you first of all for your blog,it’s been a big eye opener for me.My son (23) has been having seizures.We’re not sure when they started since he was away from home while serving in the army.I’ve never noticed him having any while he was living at home until he left for the army.He came back to live here after getting out but had his own apartment.We did not know that he was having them until he moved back in with us last christmas (2017)The first one we witnessed,we did exactly the same,we called 911 and he was taken to an emergency room,checked out and cleared.He kept having them,only in his sleep but refused to get any medical help from then on.Until yesterday, we (Me the mom,his dad and his brother)were pretty much all in denial,thinking it was stress related because he was embarrassed about having to move back in with us.Yesterday evening he had one at work,one of his coworkers found him passed out in a puddle of blood.It breaks my heart to even think about this happening to him because we want nothing but the best for him.We realized we could deny this no longer because he’s having them during the day now too (yesterday was the first time that we know of) but he’s been keeping a lot of things from us.So i’m not so sure about anything anymore.We (my husband and I)decided to not let him drive anymore because it’s dangerous for him and everyone else on the road and we can’t deny this no longer.Of course he thinks we are being over dramatic and are over reacting.He’s trying to convince us that he is fine and denies having an issue all together.It’s so frustrating for my husband,son and me because we feel like we are talking to a brick wall and he completely shuts us out,we wont budge on him driving until he gets seen by a Dr. and deals with the issue.I saw your blog and it helps me understand somewhat how he is feeling…. I can only imagine.Any help or advise is greatly appreciated.Thank you in advance and thank you again for your blog,it does help me understand where he is coming from so much better now.
Hello,
Thank you so much for sharing your experience, as well as all the people who share their comments… I’m an epileptic and I also go through this emotional rollercoaster that sometimes I just want to know if this is part of this condition or not.
THANK YOU EVERYBODY FOR SHARING. YOU ROCK!