Hi all, I just downloaded this app because I’ve been desperately struggling to adjust my lifestyle after my recent diagnosis of epilepsy at age 21.
First of all: how many of you got diagnosed with epilepsy as an early adult without any head trauma.....? People look at me as though I’m an enigma for just randomly having a grand mal in public at age 21. I fucking hate it.
I have a long, long history of serious chronic anxiety. I was diagnosed with panic disorder at age 16. I naively never thought my mental health and medical disorder would interact in a cause/effect nature.
I’m a junior in college at the University of Texas at Austin majoring in chemistry. I have a lot on my plate, but as many of you know, your early 20s serves as somewhat of a “developmental” stage (or at least I hope it should).
The main reason I’m here is because I find myself feeling so incredibly alone and lost with my medical/mental health conditions. I have frequent panic attacks, which in turn can cause seizures.... and (as you know) having seizures out of the blue can be quite frightening, which in turn will result in yet another panic attack..... it’s a Never. Ending. Cycle.
I reached my absolute lowest point a couple days ago when I was rushed to the ER because I couldn’t stop this painfully uncontrollable cycle, although I tried my best to contain my anxiety for about 12 hours before agreeing to go to the ER.
I’ve always been relatively depressed, but since I’ve been diagnosed with epilepsy, I feel like I have no one I can relate to. I can’t find a single person that can empathize with my mental health and medical health dualistically extremely affecting one another. I feel so lost. I would join just a regular “anxiety and depression page”, but I don’t believe that just anyone can understand how a chronic illness is a keystone in your everyday life which of course will affect symptoms such as anxiety and depression.
I’m sorry - I don’t mean to post a sob story and I don’t want any sympathy. But if there’s anyone out there that could possibly relate, and maybe even provide some tips on how to adjust to this condition with such a stressful situation would make me feel so much less alone.
Honestly just anything that anyone could provide advice for epilepsy + anxiety and/or late onset epilepsy + coping mechanisms (which probably include stress management)
Best,
Morgan
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morganerzal
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I can completely relate to your experience. I've had phobias, anxiety, and OCD from a very young age, then had my first and only grand mal seizure when I was nineteen years old, no precipitating head trauma. Diagnosed with juvenile myoclonic epilepsy, I was put on a low dose of Depakote and remained seizure free for more than twenty-five years, until around the middle of last year, when I started experiencing auras again.
I've no clue if there's a correlation, but the past couple of years have been particularly stressful, with my health anxiety reaching a fever pitch just before the auras resurfaced. I became a regular at a few local ERs, never knowing if the auras might lead to myoclonic seizures, or worse, a grand mal. Being alone, it was absolutely terrifying.
The main trigger for the auras seems to be photosensitive in nature, so I have to be careful staring at television, laptop, and phone screens for too long. Also, lack of sleep often provokes them. And, of course, having anxiety just makes it so much worse, as you know. The anxiety leads to hyperventilation or erratic breathing, which is a sure way of inducing a seizure. So, the most obvious piece of advice is to practice controlled breathing techniques.
My neurologist has added a medication to my current regimen, and I've seen some improvement with the new cocktail. Have you been prescribed any medications for your epilepsy? Your anxiety may lessen if you know you have something to control the seizures. It doesn't hurt that certain anticonvulsants are also used to treat mental illnesses, like bipolar disorder (Depakote being one of them). Benzodiazepines, like Valium and Ativan, treat both anxiety and seizures, and can be used as needed. Sometimes just having these medications on hand can put one's mind at ease.
Being a student, I imagine the stress must be really taking a toll on you. A good therapist could help with stress management and give you the tools you need to cope with the dual burdens of physical and mental illness. Are there mental health services available to students on your campus? Also, I think reaching out and sharing your fears in these forums is a positive step. If you need to talk, feel free to message me, I'm happy to listen and offer you the empathy of being someone who understands what you're going through right now.
Thank you so much for the response. I seriously appreciate the time you took to write out a genuine, thought out post. I learned a lot from this actually - could you tell me about your experience on Depakote? I'm currently on lamictal, and I like the mental health benefits, but it's obviously not helping too much with my seizures/stress. I'm going to see my neurologist today, so maybe I could suggest a medication change.
You're quite welcome, and I'm happy to share my experiences. I was initially put on an extremely low dose of Depakote, 125 mg three times daily, which kept me seizure free for decades, and because it was such a low dose, I didn't really have any terrible side effects. I did develop sinus tachycardia and a slight hand tremor in the years since my diagnosis, but I don't know if that was attributable to the Depakote. When my auras returned last year, my neurologist first increased my dosage of Depakote to 500 mg twice daily, and then I did start having problems with the medication: headaches, excessive sleepiness, fatigue, and, worse, bloodwork showed my ALT/AST liver enzyme levels increasing, which meant the medication was beginning to take a toll on my liver -- that's why my neurologist returned me to the low dose of Depakote and added Keppra (which is filtered through the kidneys). This combination is working for the most part (though I still get auras from time to time), and, importantly, my last bloodwork results were normal.
It's my understanding that the side effects I experienced with the increased dosage of Depakote were typical, though the elevated liver enzymes are a clear warning that the liver is being damaged. There is also an increased risk of pancreatitis with Depakote, so that's something to consider, as well.
It's hard to gauge what (if any) effect Depakote has had on my mental health, since my problems are largely anxiety-related. I know it is used as a mood stabilizer to treat bipolar disorder (it's supposed to be particularly effective with the mania aspect), but I have never been diagnosed as bipolar (though I do have family members with the condition).
Of course, only certain anticonvulsants will be effective for certain forms of epilepsy, so sometimes it's a matter of trial and error. Have your doctors done one of those in-patient, overnight EEGs, where they induce a seizure? One of my previous neurologists explained to me that that was the best way to determine which medication to use, but I was unwilling to provoke a full-blown seizure when I had only been experiencing auras. I'm sorry the Lamictal isn't having the desired effect, but I hope your neurologist can find a medication that works for you.
I hope you'll post again with updates on your progress. Wishing you all the best for a good outcome!
I am 30 and in the middle of a PhD in biology and just got diagnosed with epilepsy after doctors ignoring my focal seizures and telling me that they were just stress no matter how many times I told them that they didn't correlate with the really stresefull events in my life. It took having a grand mal in public and an ambulance ride to the hospital for me to get the correct diagnoses.
I legit just got diagnosed so I am still sorting out everything myself but my suggestions are 1) go talk to a therapist - they should be able to help you identify stress triggers and just be someone to talk about about the whole thing. 2) do some research on whether your anxiety attacks are actually focal seizures mimicking symptoms of anxiety (not to say your not anxious and chem is stressfull as fuck, but its perhaps worth looking into) 3) if you identify a trigger like a specific class go talk to the professor about getting extra time or help or something, figure out what makes you less stressed and see if you can recruit the people around you to help get you there.
That's all I got. Know you're not alone in this shit. Good luck!
You can definitely pursue a doctorate with epilepsy, just make sure you know what you need to do to keep yourself healthy because everyone runs into some stress along the way and we happen to be more vulnerable to its effects.
And like I said I'm early in this whole process of dealing, but being told something is going on with your brain is scary and I have been having a hard time with the fact that I specifically left a career as a ski instructor because it was beating up my body, for a career that used my brain instead, just to find out that my brain seems a little bit broken too. That being said since I opened up about my epilepsy to friends and family the sucessfull people who have great lives/careers and also have epilepsy have been coming out of the woodwork. I don't think it's super common to know that your professor has epilepsy because if they/the drugs are managing it successfully it won't be obvious to an outsider, but those people exist. Don't underestimate yourself or overestimate how epilepsy may limit you. But do seek help when you need it.
It sounds like things have been difficult for you for a good while now. Feeling so down and isolated are all tough to deal with. And are certainly all things that other people with epilepsy talk about.
It’s good you are hearing from others on here, as sharing information and experiences can be a really good idea.
We have some information about epilepsy and wellbeing. I’m wondering whether you might find it useful? You can find it on our webpages, or you can look at it on our interactive E learning website.
To see what care and support there is local to you for people living with epilepsy, if you haven’t already done so, you may find it helpful to contact the Epilepsy Foundation of America epilepsy.com/
Finally, we would suggest you talk to your doctor about your feelings. Hopefully they will be able to suggest support or treatment to help you.
I found homeopathy very successful at controlling panic attacks. And once I knew they could be controlled I stopped panicking, so maybe this could help you break the cycle. Good luck
Hi Morgan, I totally understand how you feel. I to have been diagnosed with epilepsy late last year at the age of 21 and am struggling to cope with the huge change in my life. I just downloaded this app. So if you ever want to chat.
Wow shit, you really can relate. People seriously undermine how stressful this huge change in your life is, especially at such a young age when I'm still trying to figure my *normal* shit out. Can I ask what you've done so far to cope and to prevent your seizures? Are you on any kind of anti-seizure medication or anything?
So I was given Topiramate 75mg x3 daily. But it isn’t keeping my seizures at bay. The doctor I saw diagnosed me. gave me my pills and said see you in a year. So I’m a bit confused about the whole epilepsy thing. Which is why I have downloaded this app. What about you?
So I went to see my neurologist yesterday and I'm continuing my 2x 200mg of Lamictal (200mg AM and 200 PM - 400mg/day), and she decided to add Gabapentin (2x 300 mg AM and PM - 600mg total) to my daily medication schedule. I've taken Gabapentin before for my anxiety, and it wasn't necessarily enough to help my panic attacks (hence taking benzodiazepines), but it is indeed an AED used to treat anxiety as well as epilepsy. Hope this helps!
Hi Morgan! My name is also Morgan, I’m 22 and I live in Canada. I was diagnosed with epilepsy 2 years ago out of the blue. It has been one hell of a journey. I totally understand the struggle. I never understood how life changing epilepsy actually was until I had grand mal seizures myself. I’ve tried drugs, homeopathy and almost everything in the book. I’m still working on finding things that work. I actually just got out of the ICU after being in a week long coma after an extreme epileptic episode. Keep your head up, new research happens every day and you are so so so not alone. Im on keppra currently and so far it has worked, although I have had some seizures since starting. I don’t know if you like cannabis at all, but CBD drops are incredibly helpful as well. They not only help with controlling seizure frequency, but also severity of seizures. I wish you all the best Morgan, I’m in the same boat. We will get through this.
❤️❤️❤️❤️ much love. Before I was able to see a neurologist I was just using CBD. My neurologist told me that the amount of CBD you’d need to actually stop a seizure from happening is far beyond the dosage you can buy just over the counter (in Texas at least). However, I can say it really did help with muscle tension after having seizures. I haven’t tried Keppra, but my neurologist is pretty adimant about keeping me on Lamictal for awhile to make 100% sure it doesn’t work. I keep having seizures every day. It really sucks and it’s gotten in the way of school sooooo much.......
It’s so nice to hear from young people like me with the same experience. I seriously thought I was so alone in this.... but it’s great to connect with people from all over the world to gain perspective.
I’ve been using an app called “Calm” to start practicing meditation. The breathing exercises have helped incredibly with my anxiety (which I think reduces the frequency of my seizures). Feel free to message me whenever you’re feeling alone. ❤️
Hi there I am middle aged and I am on Keppra and epilim but use yoga and the breathing techniques which helps but I find myself being light sensitive more so I have to be mindful and wear sunglasses a lot
Hi, there's quite a specific obvious and harmless cure for both of the problems you've mentioned. Have you tried Lyrica? It's just meant to cure anxiety and seizures. The result is quite outstanding and fast. You can get the generic for no money and try it out. Here's the good online shop weshipmd.com.
Hi I am exactly like you anxiety being the biggest problem in my life right now as no one seems to understand what epilepsy is and that you are not capable of doing much... Which is why the anxiety sets in almost like you have to prove yourself but be careful about everything you do... Employers are the least understanding.... I try breathing techniques but sometimes this isn't a good solution either..
Hi I was 19 when I had my first seizure, i am now 38. I take epilim everyday and have juvenile myclonic seizures. This was devastating to me but it's on both sides of my family so had a little understanding of it and kind of didn't let it get to me at first.... then 2 years later had another one tjen started to have clusters. And from then on was generally every 4 years. The thing that used to upset me and still does is that my cycle seems to be i have a seizure nearly bite my tongue off go through a really tough time, have time off work, lose my driving licence which then I can't work because I can't get there as public transport where I live is rubbish and then my depression begins. But a few years ago I got sick of letting it rule my life so studied and studied while I was off. I have been seizure free now for nearly 2 years so in the back of my mind I know well think not long til my next one, i have to live in the hope that I won't but there isn't much really I can do about it. Im so lucky to have such an amazing family that support me. I am now a therapy assistant for the nhs in community neuro team, they are very supportive. I hope this helps x
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