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New to Epilepsy

I had my first seizure at age 60, this past April 16th, 8 months after meningioma surgery which the surgeon says went very well. He was surprised that I had a seizure, but said that the scare tissue formed from the meningioma does, sometimes, become a trigger point for seizures. I had multiple, back to back tonic/clonic seizures, my wife called 911 who took me to the hospital where I was sedated and put on a ventilator for a day and a half. I am back home, on Keppra, and trying to figure out how to live with epilepsy - I have been told that since I had multiple seizures, one after the other, I have epilepsy.

I didn't know it was coming on, my wife said I was confused and completely lost the use of my left hand (this happened before the surgery as well), I have no recollection of the event or immediately before it. I am on 3000 mg of Keppra, from what I have read this sounds like a large dosage, especially considering I am a small guy: 140lb, 5'6". I have been pretty dizzy and have a lot of fatigue. I am normally a very active guy: Mountain Biking, Hiking, Rock Climbing. Of course all of that is off for now, which is very frustrating.

My doc says I will be on meds for a minimum of 3 years, couldn't tell me if this is something i will have for the rest of my life or not. I'd like to discuss the possibility of reducing the Keppra dosage, she says she has prescribed it for other people at this dosage without side effects. Hoping to get her to consider it after I have been on it a month - thats the end of this week.

This is all really new to me, and from what I have been reading, it seems that epilepsy is different when caused by a trauma, versus a chronic condition you are born with. By the way, that has to be just awful, I am so sorry for people who have had to deal with this their whole lives. But I am trying to understand how to deal with my form of the disease -
- Is this likely to last for the rest of my life?
- Is there anyway for me to know a seizure is coming on? I didn't know I was having my first one, I was just out.
- Do I need a medic alert bracelet? Should I carry first aid instructions on a card in my wallet?
- Do I need to educate my climbing, biking, hiking partners and my wife on first aid incase I have a seizure?
- I love mountain biking, hiking and climbing in the back country in Colorado, Utah and New Mexico. Do I need to avoid this for the rest of my life? Will I have a sudden, tonic/clonic seizure in the back country and die before I can get treatment?

Doc seems a little reluctant to give me answers - I get that there are a lot of unknowns here, but I was wondering if there is anyone here who has gone thru similar experiences and maybe could share their experiences?

thanks, in advance, for anything you can share!

- Derrick

Comments

Hi Derrick. I understand that

Hi Derrick. I understand that this is a difficult time for you. I’m a licensed clinical social worker as well as a person with epilepsy. My epilepsy started twenty years ago as a result of medical negligence that caused irreversible damage to my brain that cannot be seen on MRI anymore, even though the original MRI showed what happened. The neurologists say that it’s “microscopic” damage, but my seizures now come from 4 lobes in my brain. You’ve asked a lot of questions, some of which I think my experience with epilepsy can help you with because, while I’m not in any way suggesting that your epilepsy is a consequence of medical negligence...it is a consequence of “medical trauma to the brain” and the “scar tissue” that is left over. Your doctor is reluctant to answer so many questions right now because there are too many unknowns when it comes to epilepsy, in general, and specifically when it comes to each individual’s personal experience with epilepsy. But, it is perfectly normal for you to have these questions and to ask them. The Epilepsy Foundation has a ton of articles, many of which address your questions from a general sense and I’ve read them, but only you and your healthcare team can make the decisions that are best for you. The majority of people who are diagnosed and treated for epilepsy have to stay on some sort of medication for the remainder of their lives. Some children “outgrow” their epilepsy, but typically people who get epilepsy as a result of “trauma” to the brain or “scar tissue” from surgery or removal of a tumor...they usually need medication to control their seizures. When there is a known cause of the seizures, these are also more difficult to control than when there is not a known cause. Some people have a warning about whether they are going to have a seizure and some people do not. This is called an aura. As you get more experience with your seizures or the longer you have them, you may begin to notice signs that you didn’t before or they may change. It’s important to keep a journal of any changes that you experience because you may actually be having seizures that are different than just the tonic-clonic that you are aware of now. This was the case for me when I first started having seizures, we originally thought I only had three isolated gran-mal seizures, a focal impaired awareness seizure that was typical for me and myoclonic seizures, but it was later determined that I had different types of focal aware seizures as well and one was even misdiagnosed for 18 years as carpal tunnel syndrome. Whether you decide to wear a medic alert bracelet or keep first aid instructions with you is your choice. It’s been my experience that some medics actually use their training and some do not. It can also put you at risk legally in some situations, so if you have concerns about that consult an attorney. Basic First Aid for Seizures is always good for people who are close to you to know if you have gran-mal seizures. Most people who have epilepsy live normal, healthy, and active lives. SUDEP - Sudden Unexpected Death in Epilepsy, accidents/injury, and status epilepticus are all risks to consider in consultation with your doctor. However, as I stated in the beginning, your doctor is probably reluctant to answer many of your questions because she doesn’t know if your seizures are going to be controlled with medication and what types and frequency of seizures you are going to be susceptible to at this point given that it’s only been a month on medication. I saw my Epileptologist today and I told him that my goal was to be seizure free by June 4, 2021 because that will be 21 years since my epilepsy started. He said it’s a good goal, but I also realize that it may not be realistic because my epilepsy has been intractable (uncontrolled even with treatment) for nearly twenty years. My advice to you, Derrick, is not to focus on the dosage that the doctor is prescribing you right now, at least not so soon because of the type of seizures that you have had. The goal of treatment for epilepsy is: NO SEIZURES NO SIDE EFFECTS. If you’re not having seizures or side effects, than the goal is being met. Talk with your doctor about getting back to doing the activities that you love doing if you have been seizure free for at least 3-6 months. In the meantime, study the pages on Epilepsy Foundation’s website to learn as much as you can and keep a journal of your symptoms to share with your doctor. If the medication isn’t doing its job or is causing you side effects, then it’s time to talk to the doctor about a medication change or a reduction in the dosage depending on what is going on. If the doctor doesn’t listen, then it’s time for a second opinion. 

Gianna,Thank you, so much,

Gianna,Thank you, so much, for your detailed response!  It's so helpful to be able to share my concerns with someone who understands and who can share your experiences with me. Thank you!  I am struggling with dizziness from the Keppra right now - that stops me from riding a bike or climbing right now, but like you said - i've only been on Keppra for a month, I need to give it more time.  Maybe the dizziness will go away over time?  Funny you mentioned carpal tunnel - my tumor was first mis-diagnosed as carpal tunnel syndrome in my left hand, I had numbness and loss of dexterity in my left hand and doc's originally thought it was carpal tunnel, but an old school doc I had seen previously zeroed in on neurology right away, got the MRI done and got me on track for the meningioma surgery. When my seizure happened, my wife told me later that my left hand was pretty much useless, so that, perhaps, is a warning sign for future seizures.Thanks for the advice on focusing on the goals of no seizures and minimizing side-effects - I am hoping to reduce the dizziness if possible.  I have some fatigue, but that is already somewhat reduced.Interesting about the legal issues regarding the medical alert bracelet - I had no idea, but I do have a wonderful family lawyer who can either help or get me to a legal specialist who can.  I am a primary care giver for my sis who lives out of state, I am not driving now and so my inability to drive is a challenge for both of us.  That's something I need to figure out - either I need to get to a place where I can drive safely, or I need to figure out other ways to provide that care without driving so I can do it responsibly for my sis, for myself and other road users.  My biggest take aways are: I need to keep asking my doc questions, I need to focus on reasonable goals, keep a journal to learn more about my particular condition, and try to be patient - not my personal super power!  :-) Again, thank you so much for sharing your experiences and expertise!!!  So very kind!Sincerely,- Derrick

Hi Derrick,I didn’t include

Hi Derrick,I didn’t include the link to the information on Keppra in my original post because I anticipated that someone from the Epilepsy Foundation may do so today for you. But, here it is so that you have it to help you in the meantime just in case someone doesn’t reply. https://www.epilepsy.com/medications/levetiracetam You may notice that it shows that 3000mg daily is the recommended dose for adults when taken as monotherapy (meaning with no other seizure medication), so the neurologist has prescribed the recommended amount. It does also talk about titrating more slowly, depending on how a person tolerates it, which it has been my experience that doctors now have to start me out very slowly with medication...much slower than even what is advised to be sure that I can tolerate it because I’ve had so many adverse reactions to some AEDs. But, like you said, your fatigue is even starting to get better and in my experience, my body also just takes a month or so to get used to some of the medications and then I can handle it without a problem at all. I didn’t go into detail about the legal issues with the medic alert bracelets/first aid instructions in your wallet, but since you brought up driving...I’ll mention it. Wearing a medic alert bracelet that states you have seizures, even if you get permission from your doctor and the state to go back to driving, if you later have a car accident, it may complicate your defense under the law. That’s one reason why I suggest consulting an attorney before getting a medic alert bracelet because our society is very litigious and unfair to people with disabilities. I’m also a certified rehabilitation counselor and I’ve witnessed lot of cases of discrimination in my work, so I am very cautious about privacy and protecting my legal rights and the rights of my clients. I don’t personally wear anything that could identify my medical conditions, but that also means that protecting my privacy may mean that I could one day sacrifice my safety. It’s a personal risk that I’m willing to take and you’ll have to decide if that’s a risk you want to take or not after considering all factors. I wish you and your family the best. I hope Keppra or another medication works to control your seizures without side effects right away! :-)

Hi,Thank you for posting.

Hi,Thank you for posting. Gianna has shared some wonderful resources and advice in her comments. It’s important to remember that you are not alone, and we are here to help support you. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid& safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates

Hey there, my seizures also

Hey there, my seizures also seem to be hanging around after a brain surgery, so I've asked a lot of those questions. I've tried to come off meds a few times, unsuccessfully unfortunately. However, being on medication doesn't mean you have to give up all your hobbies and interests. Many people are able to achieve great seizure control with regular medication. It's important to find a neuro who you feel hears your questions and understands the goals and lifestyle you want to maintain. but you've learned one thing already about seizures; there are a lot of questions that don't always have a clear or obvious answer. It hasn't been very long since your seizures, but if you feel the meds are still intolerable after a number of weeks or months, that's definitely something worth discussing with your neuro, and second opinions are always an option. All in all it tends to be a learning experience as you figure out what works for you by trial and error. Yes it's likely that there are some things that will always be a little different, but it does get better. 

Thank you!  Its so helpful to

Thank you!  Its so helpful to know that I am not the only one struggling with these questions and issues!

Thank you!  Its so helpful to

Thank you!  Its so helpful to know that I am not the only one struggling with these questions and issues!

Thank you, again, for all the

Thank you, again, for all the info!  I am focusing on reducing the side effects - I was having a lot of dizziness and fatigue, and, though I didn't realize it, depression.  My Neurologist reduced the Keppra dosage to 2500 mg/day after a month and what a difference!  The first thing I noticed was i wasn't so depressed - I hadn't realized just how down I was.  I still have some dizziness and fatigue, so still some work to do with her (my Neurologist), but I am focusing on reducing the side-effects and giving time for the adjustments to take effect - as you mentioned.  So far, so good!  My watch word is - patience!!!thanks again!- Derrick

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