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When do the cons outweigh the pros?

Fri, 12/13/2019 - 23:30
I've had focal seizures (and a few tonic-clonic) since I was 11, I'm now 23. Since they put me on Keppra when I was about 13, I've just felt, at best, like I'm in a fog, and at worst, like I don't want to live anymore. Recently, they took me off Keppra (as I was on it for about 10 years, ending at 3500mg, no improvement) and instead put me on Briviact, which, for the past month or so that I've been taking it, has curtailed the seizures, but is making day-to-day life, especially work, almost unbearable. I'm not sure if all the problems I'm experiencing are related to it, but I know some have to be, with how sudden-onset and unusual they are. For one, I have headaches all the time now. At least twice a day, for at least an hour or two. I've been "assured" that these are not linked to the medicine, and since Ibuprofen helps, I "don't need to worry about it". I feel like I can't think. I had minor brain fog with Keppra, as I've read is common, but if on a scale of 1-100 with 1 being no problem at all and 100 being completely incoherent, I felt I was a 10 or so on Keppra, and at least a 50 on Briviact. I've had short episodes where I wasn't really able to speak because my brain just wouldn't process what I wanted to say. It...was...like...if...you...were...talking...like...this. I've never had any issue with memory -- in fact, I've always had an excellent memory, and now I forget things, maybe not so important and very important, almost immediately. This has especially become a problem at work, because my boss, despite knowing my predicament, is unsympathetic. It's like if someone tells me something and I turn around to do something else, I will probably have forgotten what they said -- no matter how important it was. I have always been a fairly calm person, even when I'm stressed (which is also increased, 'tis the season, right?), but now the smallest inconveniences make me want to scream and break everything around me. Of course this is an issue at work, but I live with my parents, who also, despite being very aware of the circumstances, treat me like a toddler having a tantrum even though I have told them I think the medicine is making me irritated. At one point when I had to go to the emergency room for the "talking...like...this" because they thought it was some kind of odd seizure, my dad and I had a screaming match which ended with him telling me they were going to come take me away and strap me down in the psych ward if I didn't stop acting like a freak. I will never forgive him for saying that, and I think about it literally every time I talk to him, no matter how pleasant the conversation, and I just have to sit on my hands because I want to punch him. It's only been a month, so I think it's too soon to say, yay, this medicine works! But at what cost? It's hard to say if I'm being rational at the moment or not, so I'm just curious, from the perspective of people in a similar situation as me, at what point is "being seizure-free" (assuming the Briviact continues to work) not worth feeling like hell all the time? I imagine if it continues to work perhaps I'll eventually be happier because I'll be permitted to do things like drive and have a social life and not immediately have to "warn" people about being around me, but right now it's absolutely miserable.

Comments

Hi, Thank you for posting, it

Submitted by Anonymous on Mon, 2019-12-16 - 09:59
Hi, Thank you for posting, it sounds like you’ve gone through a lot. Treatment 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. We cannot determine what is causing your issues with memory, which may be related be related to several things from seizures, epilepsy, or a separate issue. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition, visit:  https://www.epilepsy.com/learn/challenges-epilepsy It’s important that you are continuing to follow-up with your healthcare team to address these challenges 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 feel 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: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionsIt 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 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. Track your seizures,record your medical history, set reminders,manage medications, side effects, moods, triggers, behaviors or other personal experiences using a diary: https://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  Sometimes it’s helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find &give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. 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 and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

HiI'm 23 and I have TLE. I've

Submitted by Meggo on Wed, 2019-12-18 - 12:02
HiI'm 23 and I have TLE. I've had a great struggle over the past 15 years with finding meds that work effectively but dont have negative side effects. I've also been on Keppra and Briveracetam. For me they really affected mymood and felt incredibly low to the point of struggling to see the point of life anymore. They helped my epilepsy, keppra in particular, but I couldntbe neither of them because they were causing me so much trouble. On the other hand, although the medication I am on currently (topiramate) causes me some mild memory issues, I feel like the pros of the reduction in my seizures are out outweighing the cons of side effect. It's tricky but I feel it's a personal decision and thinking about whether you will enjoy life more on/off the meds. Good Luck whatever you choose to do.

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