Advice please?

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Hi everyone, I'm Liz. I'm 14 years old and was diagnosed with generalized epilepsy when I was 3. I had about 1 seizure a year, and they were always febrile grand mal. However, when I was 7, I started taking Keppra and was seizure free for a long time. When I was 12, my neurologist thought I had grown out of it, and he weaned me off of the medicine. A week later, I had my first non-febrile seizure. My neurologist put me on Trileptal, which I was off of in three months due to the horrible rashes I got from it. I was then put on Lamictal and Depakote(at the same time) for 2 years, which caused my depression to go through the roof. Unfortunately, I started to have seizures at school and my classmates were not very sympathetic. In fact, I was physically and mentally abused for it. I was at an all time low. I had suicidal thoughts and actions, I started cutting, and I was just waking up in the morning to go back to sleep. I accidentally told my mom, and she automatically told my doctors. I started to see a psychiatrist, and she put me on Prozac, which has sort of worked since then. My neurologist took me off Lamictal and Depakote and put me on Keppra again, since it seemed to work last time. He also put me on keto for 2 years. Neither worked, and then I had quite an unfortunate seizure in the shower, causing me to get a concussion. I had major memory loss, and I missed about 2 months of school. I was bullied even more, and I tried to kill myself. Unfortunately(at the time), my mom caught me and we had to go to the hospital. My Prozac was raised and I started to go to therapy more often. My neurologist thought we should start looking into surgery, so I did an EMU stay. It was awful, and I only had one seizure, which was generalized, so we couldn't continue with the surgery. I was having migraines and seizures and panic attacks left and right. My grades, which are very important to me, were just awful from missing so much school and having memory loss. I was being bullied more than ever. So I walked up to my parents, and I said, "We need to move". Somehow, they agreed, and so we packed our bags and left for Savannah, Georgia. Things are much better here. My meds are still not working, but I actually have a friend here, and people are much nicer about my epilepsy. I still suffer from memory loss, but it isn't as bad. So I've got a much better life here. My new neurologist thinks we should either try another EMU stay(he sort of thinks that seizure came from my right temporal lobe), or try a VNS. I don't know what to choose, so can I have some suggestions? Thanks! (Also sorry this is kind of long)

Comments

Hi LizLovesCheerios, Thanks

Submitted by Anonymous on Fri, 2019-10-04 - 10:32

Hi LizLovesCheerios, Thanks so much for sharing your story, it sounds like you’ve been through a lot. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we do have resources available that can help. If you ever need to speak with someone immediately, please contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org epilepsy.com/helpline or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/We are glad to hear that you are happier in your new community and that your family and friends are there to help support you. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns Treatment varies for each individual,so it’s good that you’re continuing to follow-up with your neurologist to determine what individual treatment plan is best for you and if you experience changes in seizure types, frequency, behaviors, side effects. It is common for those living with epilepsy to report having difficulties with thinking & memory and to experience feelings of depression, so it's important that you continue to address those challenges with your healthcare team: https://www.epilepsy.com/learn/challenges-epilepsy and to recognize thatyour overall well-being and emotional health are just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health We know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and help manage your epilepsy. Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, set reminders, record your medical history, medications, side effects, moods, or other personal experiences, using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with your doctor, to see if a device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf

Hi LizLovesCheerios, Thanks so much for sharing your story, it sounds like you’ve been through a lot. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we do have resources available that can help. If you ever need to speak with someone immediately, please contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org    epilepsy.com/helpline   or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/We are glad to hear that you are happier in your new community and that your family and friends are there to help support you. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns  Treatment varies for each individual,so it’s good that you’re continuing to follow-up with your neurologist to determine what individual treatment plan is best for you and if you experience changes in seizure types, frequency, behaviors, side effects. It is common for those living with epilepsy to report having difficulties with thinking & memory and to experience feelings of depression, so it's important that you continue to address those challenges with your healthcare team: https://www.epilepsy.com/learn/challenges-epilepsy   and to recognize thatyour overall well-being and emotional health are just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   We know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and help manage your epilepsy. Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure:  https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, set reminders, record your medical history, medications, side effects, moods, or other personal experiences, using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with your doctor, to see if a device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf 

Hi LizLovesCheerios, Thanks so much for sharing your story, it sounds like you’ve been through a lot. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we do have resources available that can help. If you ever need to speak with someone immediately, please contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org epilepsy.com/helpline or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/We are glad to hear that you are happier in your new community and that your family and friends are there to help support you. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns Treatment varies for each individual,so it’s good that you’re continuing to follow-up with your neurologist to determine what individual treatment plan is best for you and if you experience changes in seizure types, frequency, behaviors, side effects. It is common for those living with epilepsy to report having difficulties with thinking & memory and to experience feelings of depression, so it's important that you continue to address those challenges with your healthcare team: https://www.epilepsy.com/learn/challenges-epilepsy and to recognize thatyour overall well-being and emotional health are just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health We know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and help manage your epilepsy. Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, set reminders, record your medical history, medications, side effects, moods, or other personal experiences, using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with your doctor, to see if a device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf

Hi, why do you tell your

Submitted by Yislem24 on Thu, 2019-10-31 - 00:04

Hi, why do you tell your parents to find other alternative, not so much medicine. Why didn’t the keto diet work? I feel you would be feeling better and doing teenager stuff and feeling way happier. Medicine is important I know but some natural remedies are good too. God bless you and I hope you never have another one again

Hi Liz, I was diagnosed with

Submitted by irangel on Thu, 2020-01-09 - 00:38

Hi Liz, I was diagnosed with febrile grand mal when I was 1 1/2 years old. Nothing occurred after that until I had another febrile grand mal seizure at the age of 10, then from that point until age 16, I had petit mal seizures each month, nowadays this type of is called absence or focal aware seizures. Then at the age of 17 I made a single change in my diet, I reduced my daily calcium in take by no longer drinking any milk and both types of seizures went away. I'm now 55 years old and had not taken any medication since age 17 (I don't recommend you or anyone do that at all).I'd like to recommend you trying the Keto Diet once again, but first having your calcium level checked.Over the years since the age of 22, I've had some very close calls, feeling the onset of a seizure, but never triggering a grand nor petit mal seizure. The only symptoms is best described as Myoclonic seizure which, essentially, is uncontrollable twitching of the muscle while I'm trying to sleep which leads to sleep deprivation.Every time these Myoclonic seizures could occur, was when I had direct skin contact and air borne particles with the following items: Mortar Mix, Cat Litter, Latex Paint, Latex or Nitrile or Vinyl Gloves. The only common thread between all these items is that they all contain Calcium Carbonate. On the very night after working with or, as in the case of the cat litter, inhaling air borne particles, I would have Myoclonic seizures throughout the night.There a quite a few articles on the internet stating too much, and too little calcium, in your body can trigger seizures. I also found one that specifically stated calcium carbonate triggered seizures in a case study.After working with any of the items that I listed, I get my calcium level checked. I've been running at the 9.7 - 9.8 range. Several weeks later, my calcium level drops to 9.3,Hope that you give the Keto Diet 1 more try with the dietary change that I recommended, but only if your calcium level is high. Also keep in mind that the Keto Diet is low on Carbs. Our body breaks down Carbs into Carbon.....and Carbonate is just that, Carbon.Here's another thing you maybe interested in trying, I proved to my neurologist that I was hyper sensitive to Calcium Carbonate by buying a bottle of powered Calcium Carbonate, available in any pharmacy. I then proceed to wash my hands in warm water to open my skin pores, then placed 1/2 tsp of the power on the palms of my hands (60% of daily value) and adding a few drops of water to turn it into paste. I did this in the EMU and that very night when I tried to sleep, I had Myoclonic seizures throughout the night. For you it may trigger a seizure and it may answer a lot questions.One last topic I would like to cover here: Memory Loss. I noticed that every time I ate 2 pieces of charred toast, starting the next day and for 3-4 days thereafter, I would have real bad Alzheimer's symptoms, which is memory loss and then I would recover. Charred toast contains high levels of Carbon.....and Carbon is also known as Charcoal. You may want to try this experiment first, if at all.Good luck!

Hi Liz, I was diagnosed with febrile grand mal when I was 1 1/2 years old.  Nothing occurred after that until I had another febrile grand mal seizure at the age of 10, then from that point until age 16, I had petit mal seizures each month, nowadays this type of is called absence or focal aware seizures.  Then at the age of 17 I made a single change in my diet, I reduced my daily calcium in take by no longer drinking any milk and both types of seizures went away.    I'm now 55 years old and had not taken any medication since age 17 (I don't recommend you or anyone do that at all).I'd like to recommend you trying the Keto Diet once again, but first having your calcium level checked.Over the years since the age of 22, I've had some very close calls, feeling the onset of a seizure, but never triggering a grand nor petit mal seizure.  The only symptoms is best described as Myoclonic seizure which, essentially, is uncontrollable twitching of the muscle while I'm trying to sleep which leads to sleep deprivation.Every time these Myoclonic seizures could occur, was when I had direct skin contact and air borne particles with the following items:  Mortar Mix, Cat Litter, Latex Paint, Latex or Nitrile or Vinyl Gloves.   The only common thread between all these items is that they all contain Calcium Carbonate.  On the very night after working with or, as in the case of the cat litter, inhaling air borne particles, I would have Myoclonic seizures throughout the night.There a quite a few articles on the internet stating too much, and too little calcium, in your body can trigger seizures.  I also found one that specifically stated calcium carbonate triggered seizures in a case study.After working with any of the items that I listed, I get my calcium level checked.  I've been running at the 9.7 - 9.8 range.   Several weeks later, my calcium level drops to 9.3,Hope that you give the Keto Diet 1 more try with the dietary change that I recommended, but only if your calcium level is high.  Also keep in mind that the Keto Diet is low on Carbs.  Our body breaks down Carbs into Carbon.....and Carbonate is just that, Carbon.Here's another thing you maybe interested in trying, I proved to my neurologist that I was hyper sensitive to Calcium Carbonate by buying a bottle of powered Calcium Carbonate, available in any pharmacy.  I then proceed to wash my hands in warm water to open my skin pores, then placed 1/2 tsp of the power on the palms of my hands (60% of daily value) and adding a few drops of water to turn it into paste.  I did this in the EMU and that very night when I tried to sleep, I had Myoclonic seizures throughout the night.  For you it may trigger a seizure and it may answer a lot questions.One last topic I would like to cover here: Memory Loss.  I noticed that every time I ate 2 pieces of charred toast, starting the next day and for 3-4 days thereafter, I would have real bad Alzheimer's symptoms, which is memory loss and then I would recover.   Charred toast contains high levels of Carbon.....and Carbon is also known as Charcoal.  You may want to try this experiment first, if at all.Good luck!

Hi Liz, I was diagnosed with febrile grand mal when I was 1 1/2 years old. Nothing occurred after that until I had another febrile grand mal seizure at the age of 10, then from that point until age 16, I had petit mal seizures each month, nowadays this type of is called absence or focal aware seizures. Then at the age of 17 I made a single change in my diet, I reduced my daily calcium in take by no longer drinking any milk and both types of seizures went away. I'm now 55 years old and had not taken any medication since age 17 (I don't recommend you or anyone do that at all).I'd like to recommend you trying the Keto Diet once again, but first having your calcium level checked.Over the years since the age of 22, I've had some very close calls, feeling the onset of a seizure, but never triggering a grand nor petit mal seizure. The only symptoms is best described as Myoclonic seizure which, essentially, is uncontrollable twitching of the muscle while I'm trying to sleep which leads to sleep deprivation.Every time these Myoclonic seizures could occur, was when I had direct skin contact and air borne particles with the following items: Mortar Mix, Cat Litter, Latex Paint, Latex or Nitrile or Vinyl Gloves. The only common thread between all these items is that they all contain Calcium Carbonate. On the very night after working with or, as in the case of the cat litter, inhaling air borne particles, I would have Myoclonic seizures throughout the night.There a quite a few articles on the internet stating too much, and too little calcium, in your body can trigger seizures. I also found one that specifically stated calcium carbonate triggered seizures in a case study.After working with any of the items that I listed, I get my calcium level checked. I've been running at the 9.7 - 9.8 range. Several weeks later, my calcium level drops to 9.3,Hope that you give the Keto Diet 1 more try with the dietary change that I recommended, but only if your calcium level is high. Also keep in mind that the Keto Diet is low on Carbs. Our body breaks down Carbs into Carbon.....and Carbonate is just that, Carbon.Here's another thing you maybe interested in trying, I proved to my neurologist that I was hyper sensitive to Calcium Carbonate by buying a bottle of powered Calcium Carbonate, available in any pharmacy. I then proceed to wash my hands in warm water to open my skin pores, then placed 1/2 tsp of the power on the palms of my hands (60% of daily value) and adding a few drops of water to turn it into paste. I did this in the EMU and that very night when I tried to sleep, I had Myoclonic seizures throughout the night. For you it may trigger a seizure and it may answer a lot questions.One last topic I would like to cover here: Memory Loss. I noticed that every time I ate 2 pieces of charred toast, starting the next day and for 3-4 days thereafter, I would have real bad Alzheimer's symptoms, which is memory loss and then I would recover. Charred toast contains high levels of Carbon.....and Carbon is also known as Charcoal. You may want to try this experiment first, if at all.Good luck!