Bad days with epilepsy

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First of all this is going to be poorly written and I doubt anyone will read it but I feel like writing this might be therapeutic for me. so here goes- My name is Hannah and I'm 20 years old entering my final year at Western Washington University. I was diagnosed with petite mal absence and myoclonic seizures when I was 15 and 1/2 years old. It's been a really long journey of finding the right medication and what works with me. In high school I had times where I was taking up to 15 pills a day, now after trial and error I am on Lamictal 300mg ER. It's been great only taking the one pill each morning and I have been really good about taking it. But that's not what this is about, I'm 20 and the only one in my friend group who isn't 21. Now, I used to drink when I entered college, very cautiously as I know what can happen with alcohol and epilepsy. However, one night I wasn't very careful and I had my firs grand mal seizure. Since then I have not taken so much as a sip of alcohol.Now I smoke weed sometimes to help my anxiety or for recreation. Most of the time it doesn't phase me that I'm the only one not drinking and my friend are all very understanding and supportive. But sometimes its not easy. Today was one of those days. I had an evening shift. While I was at work all of my friends ate dinner and went out to the bars. Now, like I said I don't drink but i'm also not 21. The combination of those two things really weighed heavy on me today as I felt consistently the odd one out. Along with being left home alone and being the only one who can't drink, I am going through some health issues. None of my friends have this. None of them understand what its like to heave health issues that hold you back. I cant drink, I cant stay up too late (sleep deprivation is a trigger for my seizures), I cant go to a party without someone making sure there aren't any strobe lights. SO many things that my friends don't think about. Some days, all of it gets too heavy and its rough. It gets so hard and I dont think anyone else realizes (or can truly understand) the weight I feel everyday.

Comments

Hi mackintoshhannah,Thanks so

Submitted by Anonymous on Wed, 2019-08-21 - 15:10

Hi mackintoshhannah,Thanks so much for sharing you story and we understand you frustrations and concerns. It’s important that you continue to follow-up with your healthcare team and to discuss any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf Additionally, please discuss with your healthcare team what individual treatment is best for you and how alcohol and drug use may affect your treatment The effects and risks of so-called recreational drugs vary greatly, they may directly affect the brain and seizures or interact with seizure medications: https://www.epilepsy.com/learn/triggers-seizures/drug-abuse Moderate to heavy alcohol use is never recommended for people with epilepsy. Alcohol and some seizure drugs have similar side effects. Using both at the same time can lead to bothersome and potentially dangerous problems. Learn more about epilepsy & alcohol here: https://www.epilepsy.com/learn/triggers-seizures/alcohol It's important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network.Learn more about your community support, here: support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns https://www.epilepsy.com/article/2018/8/epilepsy-strategies-transitioning-college It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools We know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsyLearn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Learn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what do if you have a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline

I truly underhand what you

Submitted by Lilly Mota on Thu, 2019-11-14 - 19:11

I truly underhand what you are going through. If you ever need someone to talk just hit me up.

Hi Hannah, so I'm 23 years

Submitted by abrugg on Wed, 2019-12-04 - 00:34

Hi Hannah, so I'm 23 years old and just graduated college myself. I completely understand what you're dealing with. Because I have grand mal seizures sleep deprivation is a HUGE trigger for my seizures (and of course alcohol doesn't help matters). So it almost felt like every weekend it came down to making a choice between having a good time or putting myself at a much greater risk of a seizure. To summarize basically, after having finished college with epilepsy I've learned 2 things:1. There will always be other parties/get togethers or whatever2. Take care of yourself first, and the rest will fall into place

I'm 25 and I've NEVER gotten

Submitted by Misjoey101 on Mon, 2020-06-22 - 22:32

I'm 25 and I've NEVER gotten drunk or had more than a sip of alcohol. I just always tell people that I still hate the aftertaste and unless their party has one of those drinks that is sugared-up like crazy, I can't take it.(which is mostly true) I've never pulled an all-nighter either. I've had to leave concerts because their lights started issues. There are many reasons why people don't drink so you don't need to explain.

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