Friends Helping Friends
Since December of 2007, I have come to meet quite a few supportive and interesting people who are either afflicted with epilepsy directly or have friends or relatives that have the disorder. Over time, we have grown to help one another understand the effects of epilepsy and have become really good friends. Some of which I have had the honor and privilege of meeting face to face.
Michelle Johnson
I made quite a few friends over the past year on Epilepsy Foundation and had a chance to interview one such person from Huntington Beach, California that has been struggling both physically and emotionally with epilepsy. Michelles' trials and tribulations have, in my opinion from speaking to her, made her a stronger person. Here is my personal interview with Ms. Michelle Johnson:
1. How long have you had epilepsy, Michelle?
"I had my very first gran mal seizure March 3, 1999. Oh I was so terrified, I didn't know what was happening to me. At the time I was recovering from brain surgery. I had had 2 craniotomy biopsy surgeries in 1997. Then in Nov. 1998 they did an awake left frontal lobe resection to remove a rare type of tumor....It was half Astrocytoma and half Oligodendroglioma. Half malignant and half benign. Thankfully the cancer was completely surrounded by the benign. Then less than 4 months later from the scar tissue, I developed seizures."
2. What kind of epilepsy do you suffer from?
"I don't really know... my guess would be the left frontal temporal lobe area."
3. What kind of seizures do you have and how often do you get them?
"I have a variety. I have simple partial, complex-partial, tonic-clonic, auras, and grand mals. My best month I had was 6 seizures and 18 auras. My worst month I had was 41 seizures and 94 auras. I get a warning as well. At least that's what I call it. I get this shooting pain in my right arm and it throbs. I usually will end up having a seizure either that day or the next. I average about 10 a month."
4.What kind of test (s) have you had for purposes of diagnosing and treating your epilepsy, Michelle?
"I've had numerous MRI's and CT Scans - due to the brain tumor. I've had EEG's and I've had video EEG's."
5. What kind of medications have you tied? Are you on any now and are they / have they helped you at all?
"Well, I've taken numerous medications...and I'm sure I'm not the only one who has... lol. As far as them working, I don't see any difference. (I'm still getting seizures). Some medications have severe side effects. They all give the common side effects to me: tired feeling, headaches, dizziness, bad memory, weakness, coordination, trouble concentrating, bruise easily and poor balance."
I'm currently taking:
Keppra - This is my 3rd time on it. (The 1st time I was on it I went 63 days without a seizure) We were all thinking that this was the one, I wasn't going to have seizures anymore. Then I go and have a grandmal. Now why did I have to go do something like that?...lol:) That was the one and only time. I've been getting bad sore throats and have a hard time falling asleep.
Neurontin - I've been on this for over 10 years. Hand tremors at times.
Trileptal - This is my 2nd time on it. (I need to add sodium to my diet, because the Trileptal depletes it from my body) and I don't like salt.
Ativan - This knocks me out. (I usually cut the pill in half because it's too strong for me).
Medications I've been on:
Vimpat - I just went off this... it made me feel SOOOO dizzy & tired throughout the day!!!!
Depakote - weight gain!
Tegretol - lethargic, nauseated and blurred vision.
Lamictal - nightmares and headaches.
Topomax - Fatal skin rash.
Dilantin - made feel tired all day.
Phenobarbital - made me feel tired ALL day!!!
Lyrica - Severe weight gain!!!
Dilantin - My Doctor just felt it wasn't working for me.
I can't remember if I've been on anymore. This list is from memory.
"On Oct 17th I had my blood levels done in CA, and on one of them it was high. That is the one that has the (bone, liver & kidney). So I have to go back for another blood level. I have to admit, I'm a little nervous. My Doctor also wants to do a bone density test on me. Because I've been on the Neurontin for a long time and no Doctor has done one on me. He said after 8 years of being on it that I should of had one done. He also told me that because I'm fair skinned and thin that he wants me to get one done. I told him that I lost some weight between August and October that averaged around 21 pounds."
6. Have you had any forms of natural treatment, Michelle, such as neurofeedback (biofeedback done on the brain), massage therapy or acupuncture for example?
"As far as natural treatments go, I did have acupuncture done on myself and it did not work for me. I ended up having a grand mal seizure the following day. I did have massage therapy done after my car accident and it helped me a little. It helped get the knots out. I will definitely try it again in the future when my life is back in order just to see if it really does indeed make a difference."
7. How does your family deal with your affliction with epilepsy, Michelle? Are they supportive? Are they ignorant on the subject? Do they smother you?
"In the beginning my husband was there for me. Over time he would get mad because I would have a seizure. He lost his faith in God and blames me for it. When we were in Las Vegas in July, I had had 17 seizures in 4 days so I was laying down to re cooperate. He comes into the room & asked me what I was doing? I told him that I was tired from my seizures. In a cocky voice he basically said what's new, you're always having seizures! Then he sat on the edge of the bed and told me that if he would have known that I was going to have seizures, that he never would have married me. That hurt me so bad, I still cry over that comment. The rest of my family is there for me. They accept me and my epilepsy and understand that it is a part of my life. I didn't ask for it; it just happened. God knew that I was strong enough to handle it. I don't know what I'd do without their support. I think for the most part they know what to do when I'm having one. Sometimes they'll freak out when it's a bad one. I can't talk afterwords for approximately 1-5 minutes and they're talking for me like they know what I want. My brothers, sisters and cousins sometimes get nervous around me. It hurts me a little. When I found out about my brain tumor I had some really good friends that went with me to Doctor appointments and surgeries. They have been there for me ever since and have not left my side. Some I met after my seizures and they are still friends with me. That is what I consider to be a true friend."
8. Have you ever let epilepsy keep you from pursuing your dreams and goals?
"Huh.... well in a way it has. I was studying for my GED when I found out about my brain tumor. I had to put it on hold and thought that I'd do it afterward. I'm not able to do it now only because I'm not able to remember things. Also, I'm at probably a 2nd grade level. I had forgotten how to cook so I watched the food network & started cooking a little over a year ago. I love it! I had 5 brain surgeries. My 3rd surgery affected me. I had to go through speech therapy, learn how to write, read, solve problems and learn how to walk. I also lost a lot of my memory. I wish it was the bad stuff.... hahaha. I've come a long way and I've worked hard. I've picked up some hobbies along the way... nothing really that stuck. About every other year I will go back to crocheting since it's very soothing. I guess now my goals right now are to get better from the car accident. Then get back on my own two feet. No one is going to do it for me so I need to do it for myself. Which I know is going to be hard, but with God ALL things are possible! Dreams? hmmmm.... I don't know yet!"
9. Have you ever experienced any form of rejection from people due to there ignorance?
"Well my soon to be ex husband! - but he's still family :) I'll see people in the stores when I'm having a seizure and some just give me looks or they laugh. I used to care what they thought (I guess I still do in a way) but it's not as bad. I've also had friends over the years that have just stopped talking to me."
10. Have you met other people who have epilepsy for support?
"My husband went with me once at an epilepsy support group. I met a lot of people there and I wanted to go back really bad. But my husband just didn't think that I belonged there. I've met other people through Epilepsy Foundation. We will just chat back and forth on messages. But none have reached out there like you have. Thank you.... :)"
August 10, 2013
I got a text from my friend, Michelle stating that she got some bad news from her doctor and that was still numb. To quote her very words; "I'm still numb but coming to accept it now." I thought that she was going to tell me that she was terminal. Going back some time, Michelle was diagnosed with a brain tumor and her comment was reflective of her tumor having grown back via the results of her most recent MRI she had just a few weeks ago. I told Michelle to not ever give up hope and that we would find a way to get her better.
I, like Michelle, am a big believer in the power of prayer. I asked all my friends and family to pray for Michelle and signed her up on a website to ask the masses of people we do not even know to pray for her. I gave them Michelle's story in a brief blurb along with her photo. Well the prayers came pouring in by the hundreds over just a few days. I was amazed.
August 16, 2013
I always reflect towards the end of each day and look at my vision board which has photos of good friends and family along with a photo of some land and a dream home I would like to build one day. I was envisioning Michelle and I sitting by the waterfall outside at sunset just supporting each other in the silence of nature's beauty. Then I pictured my good friend, Caroline coming out of the house to see what we were up to. As I waved Caroline down to come sit by us, I looked to my right and saw nothing more clearly than a mans set of feet in sandals. It was Jesus Christ telling me that he was holding my friend, Michelle Johnson in her time of need and that He hears all of our powerful prayers for Michelle.
1. How long have you had epilepsy, Michelle?
"I had my very first gran mal seizure March 3, 1999. Oh I was so terrified, I didn't know what was happening to me. At the time I was recovering from brain surgery. I had had 2 craniotomy biopsy surgeries in 1997. Then in Nov. 1998 they did an awake left frontal lobe resection to remove a rare type of tumor....It was half Astrocytoma and half Oligodendroglioma. Half malignant and half benign. Thankfully the cancer was completely surrounded by the benign. Then less than 4 months later from the scar tissue, I developed seizures."
2. What kind of epilepsy do you suffer from?
"I don't really know... my guess would be the left frontal temporal lobe area."
3. What kind of seizures do you have and how often do you get them?
"I have a variety. I have simple partial, complex-partial, tonic-clonic, auras, and grand mals. My best month I had was 6 seizures and 18 auras. My worst month I had was 41 seizures and 94 auras. I get a warning as well. At least that's what I call it. I get this shooting pain in my right arm and it throbs. I usually will end up having a seizure either that day or the next. I average about 10 a month."
4.What kind of test (s) have you had for purposes of diagnosing and treating your epilepsy, Michelle?
"I've had numerous MRI's and CT Scans - due to the brain tumor. I've had EEG's and I've had video EEG's."
5. What kind of medications have you tied? Are you on any now and are they / have they helped you at all?
"Well, I've taken numerous medications...and I'm sure I'm not the only one who has... lol. As far as them working, I don't see any difference. (I'm still getting seizures). Some medications have severe side effects. They all give the common side effects to me: tired feeling, headaches, dizziness, bad memory, weakness, coordination, trouble concentrating, bruise easily and poor balance."
I'm currently taking:
Keppra - This is my 3rd time on it. (The 1st time I was on it I went 63 days without a seizure) We were all thinking that this was the one, I wasn't going to have seizures anymore. Then I go and have a grandmal. Now why did I have to go do something like that?...lol:) That was the one and only time. I've been getting bad sore throats and have a hard time falling asleep.
Neurontin - I've been on this for over 10 years. Hand tremors at times.
Trileptal - This is my 2nd time on it. (I need to add sodium to my diet, because the Trileptal depletes it from my body) and I don't like salt.
Ativan - This knocks me out. (I usually cut the pill in half because it's too strong for me).
Medications I've been on:
Vimpat - I just went off this... it made me feel SOOOO dizzy & tired throughout the day!!!!
Depakote - weight gain!
Tegretol - lethargic, nauseated and blurred vision.
Lamictal - nightmares and headaches.
Topomax - Fatal skin rash.
Dilantin - made feel tired all day.
Phenobarbital - made me feel tired ALL day!!!
Lyrica - Severe weight gain!!!
Dilantin - My Doctor just felt it wasn't working for me.
I can't remember if I've been on anymore. This list is from memory.
"On Oct 17th I had my blood levels done in CA, and on one of them it was high. That is the one that has the (bone, liver & kidney). So I have to go back for another blood level. I have to admit, I'm a little nervous. My Doctor also wants to do a bone density test on me. Because I've been on the Neurontin for a long time and no Doctor has done one on me. He said after 8 years of being on it that I should of had one done. He also told me that because I'm fair skinned and thin that he wants me to get one done. I told him that I lost some weight between August and October that averaged around 21 pounds."
6. Have you had any forms of natural treatment, Michelle, such as neurofeedback (biofeedback done on the brain), massage therapy or acupuncture for example?
"As far as natural treatments go, I did have acupuncture done on myself and it did not work for me. I ended up having a grand mal seizure the following day. I did have massage therapy done after my car accident and it helped me a little. It helped get the knots out. I will definitely try it again in the future when my life is back in order just to see if it really does indeed make a difference."
7. How does your family deal with your affliction with epilepsy, Michelle? Are they supportive? Are they ignorant on the subject? Do they smother you?
"In the beginning my husband was there for me. Over time he would get mad because I would have a seizure. He lost his faith in God and blames me for it. When we were in Las Vegas in July, I had had 17 seizures in 4 days so I was laying down to re cooperate. He comes into the room & asked me what I was doing? I told him that I was tired from my seizures. In a cocky voice he basically said what's new, you're always having seizures! Then he sat on the edge of the bed and told me that if he would have known that I was going to have seizures, that he never would have married me. That hurt me so bad, I still cry over that comment. The rest of my family is there for me. They accept me and my epilepsy and understand that it is a part of my life. I didn't ask for it; it just happened. God knew that I was strong enough to handle it. I don't know what I'd do without their support. I think for the most part they know what to do when I'm having one. Sometimes they'll freak out when it's a bad one. I can't talk afterwords for approximately 1-5 minutes and they're talking for me like they know what I want. My brothers, sisters and cousins sometimes get nervous around me. It hurts me a little. When I found out about my brain tumor I had some really good friends that went with me to Doctor appointments and surgeries. They have been there for me ever since and have not left my side. Some I met after my seizures and they are still friends with me. That is what I consider to be a true friend."
8. Have you ever let epilepsy keep you from pursuing your dreams and goals?
"Huh.... well in a way it has. I was studying for my GED when I found out about my brain tumor. I had to put it on hold and thought that I'd do it afterward. I'm not able to do it now only because I'm not able to remember things. Also, I'm at probably a 2nd grade level. I had forgotten how to cook so I watched the food network & started cooking a little over a year ago. I love it! I had 5 brain surgeries. My 3rd surgery affected me. I had to go through speech therapy, learn how to write, read, solve problems and learn how to walk. I also lost a lot of my memory. I wish it was the bad stuff.... hahaha. I've come a long way and I've worked hard. I've picked up some hobbies along the way... nothing really that stuck. About every other year I will go back to crocheting since it's very soothing. I guess now my goals right now are to get better from the car accident. Then get back on my own two feet. No one is going to do it for me so I need to do it for myself. Which I know is going to be hard, but with God ALL things are possible! Dreams? hmmmm.... I don't know yet!"
9. Have you ever experienced any form of rejection from people due to there ignorance?
"Well my soon to be ex husband! - but he's still family :) I'll see people in the stores when I'm having a seizure and some just give me looks or they laugh. I used to care what they thought (I guess I still do in a way) but it's not as bad. I've also had friends over the years that have just stopped talking to me."
10. Have you met other people who have epilepsy for support?
"My husband went with me once at an epilepsy support group. I met a lot of people there and I wanted to go back really bad. But my husband just didn't think that I belonged there. I've met other people through Epilepsy Foundation. We will just chat back and forth on messages. But none have reached out there like you have. Thank you.... :)"
August 10, 2013
I got a text from my friend, Michelle stating that she got some bad news from her doctor and that was still numb. To quote her very words; "I'm still numb but coming to accept it now." I thought that she was going to tell me that she was terminal. Going back some time, Michelle was diagnosed with a brain tumor and her comment was reflective of her tumor having grown back via the results of her most recent MRI she had just a few weeks ago. I told Michelle to not ever give up hope and that we would find a way to get her better.
I, like Michelle, am a big believer in the power of prayer. I asked all my friends and family to pray for Michelle and signed her up on a website to ask the masses of people we do not even know to pray for her. I gave them Michelle's story in a brief blurb along with her photo. Well the prayers came pouring in by the hundreds over just a few days. I was amazed.
August 16, 2013
I always reflect towards the end of each day and look at my vision board which has photos of good friends and family along with a photo of some land and a dream home I would like to build one day. I was envisioning Michelle and I sitting by the waterfall outside at sunset just supporting each other in the silence of nature's beauty. Then I pictured my good friend, Caroline coming out of the house to see what we were up to. As I waved Caroline down to come sit by us, I looked to my right and saw nothing more clearly than a mans set of feet in sandals. It was Jesus Christ telling me that he was holding my friend, Michelle Johnson in her time of need and that He hears all of our powerful prayers for Michelle.
Susan Cooper
This is my good friend Susan Cooper who I met on Epilepsy Foundation. Susan resides in Rockport, Texas and has been through a lot with epilepsy and has been gracious enough to share her story with us. Hopefully her story will help assist some of you out there that feel there is no light at the end of the tunnel. Well Susan refused to believe that. Here is what she had to tell us:
"I had epilepsy since I was nine months old. The epilepsy started with a high fever, that's how I got the gran mal seizures. I was on every type of medication through out my life, none of which ever worked for me. At the age of 16 I started having 6-8 complex partial seizures an hour. The neurologist had never seen this happen before in a previous patient. I was a teenager and these were the toughest years of my life to have epilepsy. I went to college and graduated. I've been working ever since too. I became seizure free just 13 days prior to my 39th birthday. This of course was due to my surgery. I had the subdural electrodes implanted on September 29, 2009. With these 52 subdural electrodes they were able to learn how close they could get to my memory and speech areas without removing too much or too little. But they would remove enough to stop my seizures. This test went on for three days. Was it tough and time consuming? Yes it was. Was this test worth all the time? Yes it was. I'm now seizure free. My true surgery date was on October 6, 2009. I've never been more happy, full of more energy, and felt less stress than I do now. I've now been seizure free for 2 years and 1 month and counting. Never before in my entire life did I even go a month being seizure free. I waited for four months after my surgery before I started driving. The thing that epilepsy really stopped me from doing was being outgoing. I was always afraid that I would have one of my Complex Partial Seizures. Now that I'm seizure free, knowing that I will not have a seizure, I'm so much more outgoing, standing tall, and wearing a smile. I'm always out there giving a hand. My Neurosurgeon gives out my phone number to his patients that have questions to ask another patient, because I have so much knowledge. I go and visit the patients that I spoke to about the surgery. I travel so much more now, even by myself. I drove 24,000 miles in only 12 months time, after it became legal for me to actually drive. Prior to surgery, I looked at life like, okay I go to work today. I'll see if I can get someone to take me shopping. It was always whatever suited their schedule. Now I don't have to worry about that. It's whatever suits me. Now if I want to take pictures of a beautiful sunrise, I can. I don't have to worry about relying on someone to take me to the beach for once. It's a true relief off of my shoulders. All of my life I had to be dropped off at work early and wait for a ride home. That really got old quick. I even took a taxi to work when I lived in San Antonio. Being seizure free has opened my mind. I'm not so set in my ways anymore. I've even been donating my time to the Epilepsy Foundation of Texas and the American Cancer Society as well. I'll even run a 5K in the cold weather for the Epilepsy Foundation and I do it with a smile. I have so much more energy now and I truly have a life now."
"I had epilepsy since I was nine months old. The epilepsy started with a high fever, that's how I got the gran mal seizures. I was on every type of medication through out my life, none of which ever worked for me. At the age of 16 I started having 6-8 complex partial seizures an hour. The neurologist had never seen this happen before in a previous patient. I was a teenager and these were the toughest years of my life to have epilepsy. I went to college and graduated. I've been working ever since too. I became seizure free just 13 days prior to my 39th birthday. This of course was due to my surgery. I had the subdural electrodes implanted on September 29, 2009. With these 52 subdural electrodes they were able to learn how close they could get to my memory and speech areas without removing too much or too little. But they would remove enough to stop my seizures. This test went on for three days. Was it tough and time consuming? Yes it was. Was this test worth all the time? Yes it was. I'm now seizure free. My true surgery date was on October 6, 2009. I've never been more happy, full of more energy, and felt less stress than I do now. I've now been seizure free for 2 years and 1 month and counting. Never before in my entire life did I even go a month being seizure free. I waited for four months after my surgery before I started driving. The thing that epilepsy really stopped me from doing was being outgoing. I was always afraid that I would have one of my Complex Partial Seizures. Now that I'm seizure free, knowing that I will not have a seizure, I'm so much more outgoing, standing tall, and wearing a smile. I'm always out there giving a hand. My Neurosurgeon gives out my phone number to his patients that have questions to ask another patient, because I have so much knowledge. I go and visit the patients that I spoke to about the surgery. I travel so much more now, even by myself. I drove 24,000 miles in only 12 months time, after it became legal for me to actually drive. Prior to surgery, I looked at life like, okay I go to work today. I'll see if I can get someone to take me shopping. It was always whatever suited their schedule. Now I don't have to worry about that. It's whatever suits me. Now if I want to take pictures of a beautiful sunrise, I can. I don't have to worry about relying on someone to take me to the beach for once. It's a true relief off of my shoulders. All of my life I had to be dropped off at work early and wait for a ride home. That really got old quick. I even took a taxi to work when I lived in San Antonio. Being seizure free has opened my mind. I'm not so set in my ways anymore. I've even been donating my time to the Epilepsy Foundation of Texas and the American Cancer Society as well. I'll even run a 5K in the cold weather for the Epilepsy Foundation and I do it with a smile. I have so much more energy now and I truly have a life now."
Amy Sayers
This is my friend, Amy Sayers who resides in Sturgis, Michigan. Amy and I met on Epilepsy Foundation and became very good friends. Amy is, in my opinion, an inspiration to everyone in her life. Her charm, her character, her wisdom and most of all, her spirituality brings hope to everyone she touches with epilepsy. Especially parents of children with epilepsy. Here is some of Amys' journey that she has been on with epilepsy in her very own words:
“In 1982, at sixteen, I had my first grand mal seizure. It was Christmas time (apparently this is when my body likes to have them,) my sister and I were home alone watching "The Grinch" and I had it right there on the living room floor. To this day I don't like to watch that movie---negative associations can stay with us for a lifetime, I guess.
I hid my epilepsy while I was in high school--even managed to come up with an excuse for why I couldn't take driver's training until a year after I was supposed to. Many of my lifelong friends through Facebook have been surprised to find out I have epilepsy, and even more surprised to find out I had it in high school.
During this time, I went through the usual test, and they thought that the seizure may have been from delayed onset epilepsy resulting from a head injury I sustained as a toddler. I was standing on the sofa with my feet down in between the cushions, and I lost my balance. The first thing to hit the floor was my head. I had one more seizure two years later again at Christmas time. I was under a lot of stress from a broken relationship with David who is now my husband. After this seizure, I didn't have any issues at all until my first year of teaching in 2001 and again in 2008. But these episodes were both brief and none of the seizures were grand mal seizures. They did find out through a CT scan that I had an arachnoid cyst between the two hemispheres of my brain but are not thinking it is likely that it is causing the seizures. We monitor it and it is the type of cysts that will not likely pose problems for me. Whew! So for the most part, things seemed to be pretty much under control.
Over the past year of so, I had been having an increase in my migraines and in the wee hours of the 26th of December, I got up to take medicine for yet another migraine. I was on my way back to bed when I had my first grand mal in 26 years. I also had another one four days later.
And so my journey begins again, only this time, it has been much harder to take steps forward. I am hoping that writing this will help me to do just that. I do know this. That if I am willing to take steps forward, even little ones, God is willing to hold me up and see through to the next one. When we don't feel in control, it can make us feel very helpless---and this is where my faith walk comes into play. I am learning that where my ability to have control ends, if I allow it, God will step in and take control. It might not be how I picture things should go but if my eyes are open, He will reveal what I can learn through these times. Often times when things go wrong in our lives we allow them to snowball and take us to a place that is quite dismal. I was there for awhile but I also know that everyday we have a choice. We must choose our attitude and we must choose to trust in Christ to take even the bad things that happen. And show us the opportunity to be strong, learn, grow, and maybe even encourage others.
And that is what I have chosen to do today. Perhaps losing control isn't so much about losing anything--perhaps it's more about surrendering myself and trusting that God will take care of me...no matter what.”
I asked Amy to get some insight from her children and how they have coped with their mom, Amy, having epilepsy. Here is what Amy's daughter, Shelby had to contribute:
I always knew mom had epilepsy. I never experienced her having a seizure until I was in grade school. I always remember hearing words like Depakote, grand mal, petit mal, and the like…but I wasn’t entirely familiar with the concept of epilepsy.
The first time I experienced mom having a seizure, I was young but I remember what happened. I think she was going through some stress with going back to school, but I don’t know the specifics. We were having dinner, like we did every night, and mom had a petit mal seizure. I’ll never forget the experience; however, I don’t think it was mom’s seizure that scared me as much as I remember the look on my step dad’s face. He was calm but it was easy to read the terror in his voice.
After that night, I don’t remember mom really dealing with seizures for awhile. She definitely still struggled with migraines. But up until last year, I don’t remember them being as big of an issue.
A little over a year ago, mom started to really struggle with reoccurring migraines, it seemed like, more than usual. Around Christmas time she had the first grand mal seizure she’d had since she was a teenager. I wasn’t there when it happened, but I was informed of it later. I was scared for my mom, and scared for my step dad. I didn’t understand my step dad’s intensity. He was so protective of my mom and would not leave her side until she felt better. I remember asking my mom how she felt she said she, “was tired, but feeling better.” The usual response. I prayed the doctors would figure this situation out. Or that God would just take away the epilepsy altogether. I still pray the same prayer.
I remember calling my sister and we were both so angry with the doctors. How hard can it be to figure this stuff out?
The day after Christmas my step dad finally decided it was okay for him to go back to work, as long as I stayed with mom all day until he got home. We watched a movie, I looked over and she was awfully pale and said she felt dizzy. I got her a glass of water and told her not to get up. She asked me to go get her an Ativan, a pill she took to prevent seizures. In the short amount of time it took me to go to the couch and to the kitchen, she started seizing.
I honestly have tried hard to forget about how I felt that day. I can recall what I did, like call 911, call my step dad, help mom, put normal clothes on, move around furniture. But I don’t often think about the way I was feeling.
I had never thought to prepare myself for the situation, but when I look back I don’t think anyone really could have prepared me. Seeing my mom in such a helpless state was one of the hardest things I’ve ever been through. And that really doesn’t even begin to describe it. My mom is my rock. She’s always strong for me, it’s not often that I have to be strong for her. She may have seized for a second, 100 seconds. I couldn’t tell you. Everything sort of blended together. As soon as my step dad showed up to our house, I fell out of that fight or flight reaction and zoned out.
I got in my car to follow the ambulance to the emergency room and I called my sister. We wept together for a long time and asked the same questions over and over. Most beginning with why.
The summer after that I was home alone with mom again and she had another seizure. I didn’t see this one happen, but I was in charge of the clean up. This one was a bit more gory than the first, she wiped out pretty bad; which, in turn, triggered the seizure. This one affected me differently. Firstly, I was thankful I was there. Secondly, I was blown away at my mom’s strength. She called her best friend and laughed her way through the pain of her head and her bloody knee.
Leaving for school and leaving my mom were probably the hardest things I have experienced through all of this.
I had some trouble adjusting to being away from mom, just because I was the only one with her when she had those issues. I was beginning to really understand the intensity of my step dad that I explained earlier.
And of course she was always the one to calm those nerves. Why was I the one worrying so much!? Well, I’ll always be worried, but I have faith that God is going to pull us all through this, together.
Shelby Dury~Amy's Daughter
Sunday - April 21, 2013. Congratulations, Amy, on being seizure-free for a year now. Here is an update in Amy's own words:
Hi Alexander,
I guess we are always on a journey to being seizure free, are we not?
I'm not sure how I "achieved" being seizure free, other than working hard to find the right medication. I do believe that the minute fluctuation that comes along with generic brands of seizure medications may have had something to do with my seizures a year ago, as it was right when I started the new script that I had my seizures. People need to be informed of the fluctuations in medicinal levels in generic medications, especially those with epilepsy, because, as I believe in my case, this led to my break through seizure. I am still on the same medicine, Lamictal, but I do not take the generic any more.
I am in the midst of great a great struggle in my faith right now as well, and my epilepsy lies at the heart of it. I have been approached about a new job, which involves a good deal of driving to many different schools. My very first thought was that I can't take the job because if I have a seizure, I cannot get to where I need to be. I was letting my epilepsy hold me back, once again. After much prayer, and some discussion with the person who created this job just for me, I am stepping out in faith, and I will admit to you, I am also stepping out in FEAR, and taking this job. A student of mine a few weeks ago came up to me and read me a quote---"Courage is fear that has said its prayers." I knew right in that moment, God was telling me to take this job. And so, I accepted the offer that day.
So--I am STILL on my journey of being seizure free--I am every day of my life. Every headache I have, every aura, leads me to wonder if this will be the day that I have to begin the journey all over again...but we have to press on...press into Jesus, and press on.
YOU my friend, are going to be at the top of my list with the Visualase surgery in your future! Those of us with brains that have "minds of their own" must have hope that our cures will come to us, either miraculously through God, through the ways of modern medicine, or both. It is a struggle for sure, but I pray that our struggles only serve to increase our strength, and be a testimony to others of God's lovingkindness, grace, and strength in our lives.
Love you!
Amy
p.s. No need to blog or journal today--you get the feelings that are at the heart of me on this day!
Update - On April 16, 2015, I received a message from Amy on facebook stating she had a seizure. Here is that message from Amy. -
"Starting over. It's been 1 day since my last seizure. Please pray for me."
“In 1982, at sixteen, I had my first grand mal seizure. It was Christmas time (apparently this is when my body likes to have them,) my sister and I were home alone watching "The Grinch" and I had it right there on the living room floor. To this day I don't like to watch that movie---negative associations can stay with us for a lifetime, I guess.
I hid my epilepsy while I was in high school--even managed to come up with an excuse for why I couldn't take driver's training until a year after I was supposed to. Many of my lifelong friends through Facebook have been surprised to find out I have epilepsy, and even more surprised to find out I had it in high school.
During this time, I went through the usual test, and they thought that the seizure may have been from delayed onset epilepsy resulting from a head injury I sustained as a toddler. I was standing on the sofa with my feet down in between the cushions, and I lost my balance. The first thing to hit the floor was my head. I had one more seizure two years later again at Christmas time. I was under a lot of stress from a broken relationship with David who is now my husband. After this seizure, I didn't have any issues at all until my first year of teaching in 2001 and again in 2008. But these episodes were both brief and none of the seizures were grand mal seizures. They did find out through a CT scan that I had an arachnoid cyst between the two hemispheres of my brain but are not thinking it is likely that it is causing the seizures. We monitor it and it is the type of cysts that will not likely pose problems for me. Whew! So for the most part, things seemed to be pretty much under control.
Over the past year of so, I had been having an increase in my migraines and in the wee hours of the 26th of December, I got up to take medicine for yet another migraine. I was on my way back to bed when I had my first grand mal in 26 years. I also had another one four days later.
And so my journey begins again, only this time, it has been much harder to take steps forward. I am hoping that writing this will help me to do just that. I do know this. That if I am willing to take steps forward, even little ones, God is willing to hold me up and see through to the next one. When we don't feel in control, it can make us feel very helpless---and this is where my faith walk comes into play. I am learning that where my ability to have control ends, if I allow it, God will step in and take control. It might not be how I picture things should go but if my eyes are open, He will reveal what I can learn through these times. Often times when things go wrong in our lives we allow them to snowball and take us to a place that is quite dismal. I was there for awhile but I also know that everyday we have a choice. We must choose our attitude and we must choose to trust in Christ to take even the bad things that happen. And show us the opportunity to be strong, learn, grow, and maybe even encourage others.
And that is what I have chosen to do today. Perhaps losing control isn't so much about losing anything--perhaps it's more about surrendering myself and trusting that God will take care of me...no matter what.”
I asked Amy to get some insight from her children and how they have coped with their mom, Amy, having epilepsy. Here is what Amy's daughter, Shelby had to contribute:
I always knew mom had epilepsy. I never experienced her having a seizure until I was in grade school. I always remember hearing words like Depakote, grand mal, petit mal, and the like…but I wasn’t entirely familiar with the concept of epilepsy.
The first time I experienced mom having a seizure, I was young but I remember what happened. I think she was going through some stress with going back to school, but I don’t know the specifics. We were having dinner, like we did every night, and mom had a petit mal seizure. I’ll never forget the experience; however, I don’t think it was mom’s seizure that scared me as much as I remember the look on my step dad’s face. He was calm but it was easy to read the terror in his voice.
After that night, I don’t remember mom really dealing with seizures for awhile. She definitely still struggled with migraines. But up until last year, I don’t remember them being as big of an issue.
A little over a year ago, mom started to really struggle with reoccurring migraines, it seemed like, more than usual. Around Christmas time she had the first grand mal seizure she’d had since she was a teenager. I wasn’t there when it happened, but I was informed of it later. I was scared for my mom, and scared for my step dad. I didn’t understand my step dad’s intensity. He was so protective of my mom and would not leave her side until she felt better. I remember asking my mom how she felt she said she, “was tired, but feeling better.” The usual response. I prayed the doctors would figure this situation out. Or that God would just take away the epilepsy altogether. I still pray the same prayer.
I remember calling my sister and we were both so angry with the doctors. How hard can it be to figure this stuff out?
The day after Christmas my step dad finally decided it was okay for him to go back to work, as long as I stayed with mom all day until he got home. We watched a movie, I looked over and she was awfully pale and said she felt dizzy. I got her a glass of water and told her not to get up. She asked me to go get her an Ativan, a pill she took to prevent seizures. In the short amount of time it took me to go to the couch and to the kitchen, she started seizing.
I honestly have tried hard to forget about how I felt that day. I can recall what I did, like call 911, call my step dad, help mom, put normal clothes on, move around furniture. But I don’t often think about the way I was feeling.
I had never thought to prepare myself for the situation, but when I look back I don’t think anyone really could have prepared me. Seeing my mom in such a helpless state was one of the hardest things I’ve ever been through. And that really doesn’t even begin to describe it. My mom is my rock. She’s always strong for me, it’s not often that I have to be strong for her. She may have seized for a second, 100 seconds. I couldn’t tell you. Everything sort of blended together. As soon as my step dad showed up to our house, I fell out of that fight or flight reaction and zoned out.
I got in my car to follow the ambulance to the emergency room and I called my sister. We wept together for a long time and asked the same questions over and over. Most beginning with why.
The summer after that I was home alone with mom again and she had another seizure. I didn’t see this one happen, but I was in charge of the clean up. This one was a bit more gory than the first, she wiped out pretty bad; which, in turn, triggered the seizure. This one affected me differently. Firstly, I was thankful I was there. Secondly, I was blown away at my mom’s strength. She called her best friend and laughed her way through the pain of her head and her bloody knee.
Leaving for school and leaving my mom were probably the hardest things I have experienced through all of this.
I had some trouble adjusting to being away from mom, just because I was the only one with her when she had those issues. I was beginning to really understand the intensity of my step dad that I explained earlier.
And of course she was always the one to calm those nerves. Why was I the one worrying so much!? Well, I’ll always be worried, but I have faith that God is going to pull us all through this, together.
Shelby Dury~Amy's Daughter
Sunday - April 21, 2013. Congratulations, Amy, on being seizure-free for a year now. Here is an update in Amy's own words:
Hi Alexander,
I guess we are always on a journey to being seizure free, are we not?
I'm not sure how I "achieved" being seizure free, other than working hard to find the right medication. I do believe that the minute fluctuation that comes along with generic brands of seizure medications may have had something to do with my seizures a year ago, as it was right when I started the new script that I had my seizures. People need to be informed of the fluctuations in medicinal levels in generic medications, especially those with epilepsy, because, as I believe in my case, this led to my break through seizure. I am still on the same medicine, Lamictal, but I do not take the generic any more.
I am in the midst of great a great struggle in my faith right now as well, and my epilepsy lies at the heart of it. I have been approached about a new job, which involves a good deal of driving to many different schools. My very first thought was that I can't take the job because if I have a seizure, I cannot get to where I need to be. I was letting my epilepsy hold me back, once again. After much prayer, and some discussion with the person who created this job just for me, I am stepping out in faith, and I will admit to you, I am also stepping out in FEAR, and taking this job. A student of mine a few weeks ago came up to me and read me a quote---"Courage is fear that has said its prayers." I knew right in that moment, God was telling me to take this job. And so, I accepted the offer that day.
So--I am STILL on my journey of being seizure free--I am every day of my life. Every headache I have, every aura, leads me to wonder if this will be the day that I have to begin the journey all over again...but we have to press on...press into Jesus, and press on.
YOU my friend, are going to be at the top of my list with the Visualase surgery in your future! Those of us with brains that have "minds of their own" must have hope that our cures will come to us, either miraculously through God, through the ways of modern medicine, or both. It is a struggle for sure, but I pray that our struggles only serve to increase our strength, and be a testimony to others of God's lovingkindness, grace, and strength in our lives.
Love you!
Amy
p.s. No need to blog or journal today--you get the feelings that are at the heart of me on this day!
Update - On April 16, 2015, I received a message from Amy on facebook stating she had a seizure. Here is that message from Amy. -
"Starting over. It's been 1 day since my last seizure. Please pray for me."
Andrea Ripa
I became a member of epilepsy.com a little while after having come back to New York to see what other people were saying about their experiences and how they were dealing with Epilepsy. People, new and old to the subject, always had a lot of advice and questions on epilepsy in regards to how we can improve our lives both socially and mentally. Soon afterwords, on November 30, 2008, I came across Andrea Ripas' profile asking if anyone had any advice for her on epilepsy as she had just acquired it at the age of forty three and felt alone on the subject. I immediately wrote her back and offered her as much advice as I could at the present time of inquiry. We started to exchange personal Emails on a daily basis and have been supporting each other ever since. She came to New York to go see the Woodstock festival and asked if I would like to join her and her family. So we met and got well acquainted. On October 1, 2009 my friend was fortunate enough to get her driver license back as she was seizure-free for six months. In the state of Delaware where she resides, it is only necessary to be seizure free for three months to get your driving privileges back. In my opinion, this is too soon but each state has its own laws. Here is Andreas' story in her own words:
"It was the summer of 2006. At the age of 43 I had my first seizure. I didn't even know what a seizure was or what Epilepsy was. It didn't run in my family. Why did I get it? I was put on medication right away. I thought the medication was worse than the seizures. My seizures where getting worse and I felt like I tried every medication out there. I even tried acupuncture and biofeedback. Meanwhile I was working full time and having seizures at work. How embarrassing! People starting treating me differently. Even my own family. My best friend Terri helped me through my darkest times and told me how strong I was. My husband is in a wheelchair so it was hard for him to help me. I felt so bad. The pain I made him go through was awful. The worst thing to come was turning in my license. I was the only driver and how I love driving. We have a classic car and loved going to car shows, etc. I was so depressed and I needed to drive. It was in my blood. I know that sounds selfish. Meanwhile I was getting more and more seizures. Sometimes three a day. I went through 3 neurologists and every test you can imagine. I am sure you can relate to that. I can remember I went to bed one evening and after having my usual 3 seizures, I prayed to God. I didn't want to have any more seizures. I fell asleep and the next thing I knew I saw this glowing yellow light. To this day I know it was God telling me not to worry and that everything was going to be alright. In the meantime I went to Jefferson Comprehensive Epilepsy Center in Philadelphia; the best thing I ever did. I told the first doctor one of my seizures lasted 5 hours. I think he didn't believe me until my stay for a week where they captured the seizure. I now have the best doctor from Jefferson; Dr Skidmore. You have to believe in your doctor and I'm now on the right medications. I have been on Keppra since the beginning which was reduced from 2750 mg to 2000 a day and I'm on Depakote ER now 1500 mg a day which the doctor has reduced to 250 mg and will reduce another 250 mg in December of 2011. When I went to the Depakote ER my seizures improved but when the doctor added Vimpat 400 mg a day I really improved. I have been seizure free for a year now. Back to driving my cars and thanking God for every blessing I prayed for. I wanted to end my story on a funny note. My family & I took a trip to Woodstock NY & stopped to visit Alex. My brother was driving and Alex & I were in the back. My brother either missed the exit or was going the wrong way so Alex started calling him u-turn Walter! We still laugh about that. I am so glad I met Alex. I've known him since 2008 and he has been a great inspiration. He knew what I was going through."
"It was the summer of 2006. At the age of 43 I had my first seizure. I didn't even know what a seizure was or what Epilepsy was. It didn't run in my family. Why did I get it? I was put on medication right away. I thought the medication was worse than the seizures. My seizures where getting worse and I felt like I tried every medication out there. I even tried acupuncture and biofeedback. Meanwhile I was working full time and having seizures at work. How embarrassing! People starting treating me differently. Even my own family. My best friend Terri helped me through my darkest times and told me how strong I was. My husband is in a wheelchair so it was hard for him to help me. I felt so bad. The pain I made him go through was awful. The worst thing to come was turning in my license. I was the only driver and how I love driving. We have a classic car and loved going to car shows, etc. I was so depressed and I needed to drive. It was in my blood. I know that sounds selfish. Meanwhile I was getting more and more seizures. Sometimes three a day. I went through 3 neurologists and every test you can imagine. I am sure you can relate to that. I can remember I went to bed one evening and after having my usual 3 seizures, I prayed to God. I didn't want to have any more seizures. I fell asleep and the next thing I knew I saw this glowing yellow light. To this day I know it was God telling me not to worry and that everything was going to be alright. In the meantime I went to Jefferson Comprehensive Epilepsy Center in Philadelphia; the best thing I ever did. I told the first doctor one of my seizures lasted 5 hours. I think he didn't believe me until my stay for a week where they captured the seizure. I now have the best doctor from Jefferson; Dr Skidmore. You have to believe in your doctor and I'm now on the right medications. I have been on Keppra since the beginning which was reduced from 2750 mg to 2000 a day and I'm on Depakote ER now 1500 mg a day which the doctor has reduced to 250 mg and will reduce another 250 mg in December of 2011. When I went to the Depakote ER my seizures improved but when the doctor added Vimpat 400 mg a day I really improved. I have been seizure free for a year now. Back to driving my cars and thanking God for every blessing I prayed for. I wanted to end my story on a funny note. My family & I took a trip to Woodstock NY & stopped to visit Alex. My brother was driving and Alex & I were in the back. My brother either missed the exit or was going the wrong way so Alex started calling him u-turn Walter! We still laugh about that. I am so glad I met Alex. I've known him since 2008 and he has been a great inspiration. He knew what I was going through."
