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Feeling lost Need Inspiration

Sat, 11/23/2019 - 14:44
Hi everyone. I am a black female who is almost 30 and this is my story. I had panic and anxiety attacks for a couple of years now. I worry a lot so I assume that was causing these attacks. This started at a point in my life when I came over other hurdles and felt like I can actually make something of my life. I enrolled in college to get my bachelor's, got a better paying job, was planning to get my drivers licenses, travel and later find a career(not just a job to pay bills) and then have kids. Now About three years ago I would wake up with blood on my pillow my tongue and cheeks all biting up. I assume it was an extension of my panic attacks but after it happened a couple more times I Googled it and found out it might be seizures. I went in for testing and was diagnosed with nocturnal seizures. My neurologist prescribed Keppra for me. Since it only happened in my sleep I felt it wouldn't affect my life much as long as I took my medication. That was just me trying to block and not really accepting that this was a part of my life. My doctor told me about the side effects and every time I went for an appointment apart from the other questions I thought was fine she would keep asking me how I'm doing mentally (And I would find it annoying. I have always suffer from a little depression but I have always felt there is still hope, I still had a purpose in life, I never had suicidal thoughts). I have to take the keppra one pill twice daily. If I forget (which happened) and I only take one pill for 2-3 days I would have a seizure. If miss taking any medication at all I would have 3-4 seizures back to back. But always when I'm asleep. It doesn't matter how long I am asleep. I would fall asleep for a couple of minutes and I wake up with blood on my pillow, incoherent and in pain. There is never a signal. But still in denial I kept on going. Then last year while I was in Macy's trying on a dress for a wedding I'm attending, one minute I'm thinking this dress looks so good on me, the next minute (it just felt like the next minute actually it was a long while later) I wake up with a group of people yelling at me "STAY AWAKE" my cousin I live with was there and she has seen when I have my seizures and apparently when I fall asleep they keep happening so she was trying to keep me awake. I had only taken 1 pill that day but it was in the evening so I assumed I had time and could wait to take the other dose. (I guess not). I went to my neurologist and after doing more scans and test apparently something changed in my brain so I was diagnosed with Epilepsy. Now this was a very big shock to my system (mentally). After hearing the word it self I hated it. Because all it meant to me now is that at anytime anywhere I can have a seizure. Not just in my sleep. Crossing the road(and get by a truck), waiting on the train platform(and fall on the tracks) around strangers, coworkers and classmates who won't know what to do when it happens. My life started spiraling out of control in my mind. All my hopes and dreams felt like they were slipping away. So I went into denial mode. If anytime I talk about it I break down. My doctor told me I had to start seeing a therapist because I wasn't handling and accepting my diagnosis well. Still I pressed on. Work, school, family. Had a few seizures here an there but thankfully all in my sleep. Since I've always been a little depress I didn't realized it at first but I was slowly falling deeper and deeper into depression. Crying everyday, not wanting to get out of bed, not really feeling any joy in life. To the point where I had to get to take a medical leave from work, and I stopped attending class, and the suicidal thoughts started happening. (Sadly for me anyways I was honest with my doctor and they didn't want to release me from the hospital until I did a psych evaluation and I had someone to take me home). Then it just kept getting worst. I one day had then 'light bulb moment' ah this is why my doctor kept asking me about my mental state because the side effect of keppra that cause depression is affecting me. Now the me who was already depressed has been amplified by a 1000. I quite my job with no back up plan, I missed more than half of this semester (so obviously I'm failing my classes), my room is a disgusting mess(which goes against my OCD tendencies), I gained over 50 pounds in just a couple months, I feel EMPTY inside. I couldn't even cry anymore. There is just nothing there but suicidal thoughts. Only two thought keeps me going first, My family, second, If I attempt suicide and it doesn't work I would either be more messed up( physically, or mentally) making my life worst. So until I fine an option that is guaranteed also painless(I hate pain) I can't step attempt it. I stopped going to therapy because there main solution was putting me on antidepressants and I really didn't see the point of taking a pill to fix the side effects of another pill. Another pill I have to be taking all my life (and if I forget to take it I will begin to spiral . really hate the fact that I've become so useless and that its affecting my family because at least my Epilepsy can be controlled by medication there are others out there who have it far worst than I do, not just with Epilepsy but other illness so why can't I adapt. Realizing last month that it has gotten this bad, realizing that I haven't had a panic attack in months, I haven't cried in months, I have been walking around with a mask on and thinking back I can't remember that last time I have actually felt joy. After getting to this stage, I finally decide to follow my doctors advise to switch my medication from Keppra to Lamotrigne. So this month I'm slowly taking Lamotrigne along with the Keppra. My main issue is accepting that I can still live on with Epilepsy. I tend to over analyze and no matter how I look at it I will forever be in despair. Without additional specified issues there are regular everyday problems everyone faces (cost of living, work, bills, family etc) and overcoming these problems to keep on living. I don't see away for me to overcome my problems along with my Epilepsy. For me living and being alive is two different things. I haven't actually lived my life in years. Being in despair isn't living. Praying to God every single night I go to sleep to not let me wake up, to kill me in my sleep is not living. Praying that he gives another chance to someone else who actually wants to live and take me instead is not living. No matter what others, doctors, family, friends have said it doesn't help. SO I'M HERE ASKING FOR THOSE WHO HAVE EPILEPSY, IS THERE HOPE? Can I live on and actually find joy again. Because I'm tired of the feeling that there is nothing inside.

Comments

Hello, I’m a licensed

Submitted by Patriotrehab on Sat, 2019-11-23 - 18:42
Hello, I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. My epilepsy started 19 years ago as a result of medical neglect and I’m still working with an epilepsy specialist to get full seizure control. Prior to my epilepsy, I worked as a medical technician and was planning to become a registered nurse. I rehabilitated myself and now work with clients on both mental health (specializing in forgiveness) and helping people with disabilities gain meaningful employment. If my epilepsy gets fully controlled with medication, I may even go back to school to get my RN. The point of sharing my story is to say that, my story began with having to forgive because I couldn’t work when someone else failed to do what they were supposed to do and that’s what caused my epilepsy. Now, my epilepsy has given me a purpose and that purpose is giving others hope. Clients are regularly able to find new jobs that they are interested in, forgive those that have hurt them, or find relief from psychological disorders that produce psychiatric symptoms. Psychiatric medication is non-curative and should only be taken in combination with psychotherapy so that you can tolerate the hard work that it requires. There are only a few diagnoses that are an exception to this rule such as bipolar disorder and schizophrenia. So, you do have good instincts about it not being a good idea to just take a pill to take care of the side effects of another. Continue working with your doctor to find the right seizure medication for you. The quality of therapy varies greatly and it’s important that you find someone who can help you feel hope. 

I'm a 30 year old woman who

Submitted by kimbaloca on Sat, 2019-11-23 - 21:48
I'm a 30 year old woman who was diagnosed with epilepsy 16 years ago. I am just now getting to a point of truly owning that this is apart of my life. I have seizures at night too. Been happening about 3-6 times a year for the past few years. Tonic-clonic type, last 1-3 minutes. I have scars on the inside of my jaws. It's embarrassing. But I'm now accepting this is apart of who I am. I don't want to hide it anymore, I felt ashamed of this for so long and it feels good to own it. I feel your pain sister, and it's gotten better for me over the years. I've been through everything you just described, thank you for sharing because i feel like the only one sometimes!! I took Lamotrigne too. and a few others, none of them worked for me. I weaned off Zonegran a few years ago and haven't looked back. I self medicate with CBD and cannabis now. I'm still having seizures (one every 3 months), but am not as depressed as before. Those meds had me messed up. I haven't taken them for 5 years and I'm still alive, having seizures sometimes but I'm not depressed all the time. So my quality of life without taking the prescription drugs is a significant amount better. I do feel joy and peacefulness, more of the time than I feel depressed/stressed. I recently enrolled in graduate school and intend to become a licensed counselor. I do know that sleep deprivation and alcohol are my triggers, and my seizures are proceeded by jerking, so I've been able to control them decently and stay safe. There are many ways to address living with epilepsy, you have a lot of options to explore before giving up hope. You deserve to feel joy again. Best wishes! 

Hi, Thanks so much for

Submitted by Anonymous on Mon, 2019-11-25 - 08:39
Hi, 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 24/7 toll-free helpline: 1-800-332-1000, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources epilepsy.com/helpline   or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/It’s 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   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-concernsTreatment and how your body may react to certain medications varies for each individual. To learn more about the medications you’re taking and about seizure medication side effects, please visit: : https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects  The goal of treatment with medicines should be –No Seizures and No Side Effects.However, we know that some individuals may experience too many side effects,that are very bothersome or cause other health problems. It is common for those living with epilepsy to experience feelings of depression, so it’s important that continue follow-up with your healthcare team to discuss these feelings, as well as, changes in seizure types/frequency, symptoms & behaviors. Be open and honest with your doctor about side effects and how they affect your health and daily life. If you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions or assistance finding a specialist near you, please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist 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. Additionally, you may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, setting reminders, recording your medical history, managing medication& other therapies, recognizing triggers, side effects, behaviors and other health events, which can be shared with your healthcare team. For additional information regarding seizure safety at night, please visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping  And review our seizure alert device factsheet with your doctor,to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf

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