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I have had epilepsy for 13 years now (I’m 25) I suffer from tonic clonic seizures (that seem to happen 40 minutes after waking up) so I only know I’ve had one when I come round and I’m told. Doctors haven’t figured out the trigger for my seizures but me and my mum think it may be due to lack of sleep; I wear a Fitbit and know that the other night I only got 5h30m because I was also awake with sickness; I only got 29m of deep sleep; that morning I had my latest seizure I was due in work so I had to inform them that there was no way I was coming in. I’d say my seizures are partially controlled as it was 13 month before this seizure for my last one and then almost 3 years before that however since this recent seizure I can’t for the life of me stop thinking about ‘what if I have another?’ I used to go on walks for 30 minutes to take away some stress and anxiety but I’m afraid to that now, I used to walk down to the gym but I’m scared to do that now. I know it’s ridiculous but I feel annoyed to wear a medical bracelet, I feel that if customers see it when I’m at work they will be judging me. I’ve cried a lot more than ever about having epilepsy since this last seizure (crying whilst writing this) I just can’t return back to how I was before. I don’t know if it’s just because it’s only 3 days since the seizure and I’m still going through the motions and I’m sorry this seems a bit all over the shop.

Comments

TMorners,I'm sorry you have

Submitted by birdman on Sun, 2019-12-08 - 20:03

TMorners,I'm sorry you have to go through the sadness. I remember when I was in my teens and early twenties each seizure was a major stab reminding me of the freedom I lack. I made it through them all by always believing it was just a temporary result of the ugly seizures. You're right; your seizures may have some to do with sleep loss. I'm sure one thing the doctors are looking at is if the seizures could just be happening at a certain stage in sleep. Also remember when we wake in the morning our medication levels in the blood are at a low or what medicine calls a "trough". Whatever the situation one thing you may ask your doctor about is re-arranging the timing of when you take your anti-seizure pills. I like to split mine up taking a little with each meal. But if seizures are happening shortly after getting up then maybe it would help for you to take a higher dose at supper or at bedtime. I hope things go better for you,Mike

Hi, Thank you for posting, it

Submitted by Anonymous on Mon, 2019-12-09 - 09:22

Hi, Thank you for posting, 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 are here 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 Or contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national andlocal resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline As Michael mentioned in his comment, for some people living with epilepsy things such a stress, or poor quality or lack of sleep can be a trigger. For additional information regarding triggers, visit: https://www.epilepsy.com/learn/triggers-seizuresAdditionally, it is common for those living with epilepsy to experience feelings of anxiety and depression. It’s important that you’re addressing those challenges with your healthcare team, as well as any changes in changes in seizure types,frequency, behaviors, sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy It is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with your doctor to see if a seizure alert device is an option you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Consider keeping a journal or a seizure diary. My Seizure Diary can help identify & track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, recognizing triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamhttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 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 Learn about treatment, seizure and lifestyle management programs that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network

Hi, Thank you for posting, 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 are here 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 Or contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national andlocal resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline    As Michael mentioned in his comment, for some people living with epilepsy things such a stress, or poor quality or lack of sleep can be a trigger. For additional information regarding triggers, visit: https://www.epilepsy.com/learn/triggers-seizuresAdditionally, it is common for those living with epilepsy to experience feelings of anxiety and depression. It’s important that you’re addressing those challenges with your healthcare team, as well as any changes in changes in seizure types,frequency, behaviors, sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy  It is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living  to learn more about resources that are available & when help is needed. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with your doctor to see if a seizure alert device is an option you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf    Consider keeping a journal or a seizure diary. My Seizure Diary can help identify & track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, recognizing triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamhttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 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 Learn about treatment, seizure and lifestyle management programs that can help people with epilepsy learn skills to better manage their epilepsy  and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network

Hi, Thank you for posting, 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 are here 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 Or contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national andlocal resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline As Michael mentioned in his comment, for some people living with epilepsy things such a stress, or poor quality or lack of sleep can be a trigger. For additional information regarding triggers, visit: https://www.epilepsy.com/learn/triggers-seizuresAdditionally, it is common for those living with epilepsy to experience feelings of anxiety and depression. It’s important that you’re addressing those challenges with your healthcare team, as well as any changes in changes in seizure types,frequency, behaviors, sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy It is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with your doctor to see if a seizure alert device is an option you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Consider keeping a journal or a seizure diary. My Seizure Diary can help identify & track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, recognizing triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamhttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 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 Learn about treatment, seizure and lifestyle management programs that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network

Hello. Thank you for sharing

Submitted by natalie2152 on Tue, 2019-12-10 - 18:50

Hello. Thank you for sharing your story. I do know how you feel because I also suffer from epilepsy. It is a struggle but that does NOT mean that you can give up. There is so much that you can do or can do for others. I have had epilepsy for two more years than you have had it so I know it could be a pain.