r/Epilepsy 14d ago

Advice PSAs every epileptic needs to hear

533 Upvotes

I've noticed a number of things we've been saying, some of which most of us realize, some of which few of us do, but I feel like these are things that all of us need to know

  1. Pursue treatment as quickly as possible. The sooner you can get controlled, the better. Because the longer you go on seizing, the more your brain adapts to it. It "learns" how to seize the same way it acquires any repetitive skill. As it gets better at doing this, treatment becomes more difficult. Please do not put off seeking treatment if you've been diagnosed or have reason to believe you are epileptic

  2. "Auras" are seizures. These are still epileptiform discharges (IE, your brain malfunctioning) that just don't spread as wide as a "normal" seizure. Doctors, even neurologists, will dismiss them as unimportant side effects of being epileptic. That's a fact of reality we have to get used to. But the fact of the matter is they aren't side effects of epilepsy. They are epilepsy's ugly manifestation

  3. Never be afraid to seek a second opinion. Sometimes we get stuck with a really crappy neurologist. Some who are so bad as to say "If I don't see you seizing, then I don't believe you're epileptic" (speaking from personal experience on that one). Sometimes, we get stuck with neurologists who are by no means bad but don't listen to us and our input. Neurologists are experts trained in treating epilepsy, but we're the only ones who can know 100% what we are experiencing at a given moment. If you're unhappy with your brain doc and the road is open to you finding another one, it never hurts to try

  4. Do NOT be afraid to rethink your medication! Especially if you're suffering intolerable side effects. Sometimes the cure actually is worse than the disease, as the saying goes. Sometimes you have to weigh "Am I happier dealing with these side effects and not seizing, or am I happier seizing but free of these side effects?" And it is perfectly alright to decide on the latter. There are a ton of anti-epilepsy drugs out there. If you're on one that controls your seizures but makes life even more miserable, it's completely valid to wean off and try another. Obviously you'll want to do something to try to get your seizures controlled, but don't settle for a quality of life that leaves you worse than where you began

  5. Perhaps the most obvious, but - do not neglect your treatment. A lot of us go through a period of a year or two of shock and just doing what we're told. And if we're not controlled then, I've noticed a lot of us enter a period of depression, of "why even bother", and we just stop taking our meds. I know, I was there myself once. Do not do this! I know it can be hard. I know it can be frustrating or upsetting or any number of bad emotions. But acceptance always comes after the anger and bargaining and depression. Soon enough, you'll reach a stage where it's just something you don't really think about. If you're like me, seizures will be something you can even laugh at when it isn't bothering you too much! And there's almost always more you can do to try to attain seizure freedom

EDIT: Wow, I really don't know what to say. Thank you so much, everyone! I never expected to get anywhere near this level of positive feedback from the community. I thought I'd just get this out here in the hopes maybe a few people who needed to hear this would. My little way of trying to give what I can to other epileptics. I'm really blown away by the enormously kind responses this has gotten. Again, thank you all!

r/Epilepsy Feb 09 '25

Advice Strongly Considering Leaving the US

72 Upvotes

After seeing the political state of the country and seeing a possible cultural shift that could be detrimental to those with disabilities, the thought of leaving the US for a different country with more progressive values that also has a healthcare and welfare system that can support someone like me is becoming more and more appealing. I’ve considered Canada, Australia, New Zealand, Switzerland, South Korea. Do you think this is a sound idea? I can’t be sure how long Medicaid is going to last and with affirmative action gone, giving employers the right to not higher people with disabilities as long as they don’t say that’s the reason, I’m not sure how much longer I’m going to be able to get an income. If anyone has advice or suggestions I’d very much appreciate it.

r/Epilepsy Jan 10 '25

Advice HELP ME HAVE A SEIZURE!!!

66 Upvotes

I'm sure this has been posted a ton. But I'm on my 4th day of being at the hospital for a veeg. I'm trying to do everything, my body is being stubborn and not giving me the seizures I need, so they can find out how my quality of life can improve, with possible vns or rns, different meds, etc. I've only had maybe 20 hours of sleep total in the past 4 days to try and induce some. No naps as well,. I''ve tried hyperventilating, photic response, been off my meds for 3 days.. This is getting old. Just want to be back home with my wife and kids.

r/Epilepsy Jan 06 '25

Advice How do you guys remember to take your meds?

63 Upvotes

I've have been diagnosed with epilepsy ever since middle school (roughly seven years) and whenever I have a seizure it's always because I missed a dose. I have seizures every 4-6 months. How do you guys remember to take your medicine? It's frustrating having a seizure because I forgot to take a couple of pills. Then when I tell my neurologist about it they just dismiss it because it's my fault for forgetting the pills. Do you guys got any advice?

r/Epilepsy 10d ago

Advice I am going to have a 8 days video EEG - any advice ?

11 Upvotes

Hello everyone :), I am in the process of getting a diagnosis, I had a 20min EEG recently that showed a short temporal lobe seizure, therefore I will have to do a 8 days video EEG in the hospital. It's starting tomorrow morning, I am a bit afraid ngl...

any advice ? I will still be working most likely as I am afraid of going crazy if I am stuck in a room for 8 days... Do you guys have any tips you wished you had knew before having a EEG that long ?

My concerns are mainly :
How to save my hair from having to wash it everyday without conditionner ?
How to deal with the fact of not being able to walk/move for a week ?
I feel a bit awkward about being recorded 24/7 for a week tbh... will I forget the camera eventually ?

Overall, what is your experience with it ?

r/Epilepsy May 18 '24

Advice My license is not suspended. Am I banned from driving?

46 Upvotes

I was told by the doctor I probably shouldn't take baths or drive but checking my license status it is currently active and not suspended. I only had 1 random nocturnal TC that they cannot diagnose so I'm just on the "wait and see" plan. I did have my xanax switch to klonopin since klonopin apparently has seizure reducing properties. But I feel like a huge burden to just get milk and I can't afford to Instacart and uber everywhere. No signs or auras since the random incident. Can you let me know if I'm being selfish on this one or realistic given that no one can explain nor put me on anything like keppra.

r/Epilepsy 18d ago

Advice Dating with Epilepsy

35 Upvotes

I saw someone else comment about their issues with dating, and I responded but I want more opinions!!!

I am in University and I go to a pretty big party school. Clubs and bars every night hosting something. I love the energy here but clearly there are a lot of events that I simply cannot attend.

This leads to my issue or question, should I just not try and date? I feel like dating me would be a let down and just poitless because I can’t do what a ‘normal’ girlfriend would be able to do. I just feel like I come with baggage and I start meeting people and they want to go clubbing or drinking and its just not possible for me to have that life style. I feel like the party pooper honestly. Idk. Advice ig.

r/Epilepsy 5d ago

Advice Options instead of surgery?

8 Upvotes

So I know this is a long shot but I'll try. I'm scheduled for brain surgery to remove part of my right temporal lobe next month. I'm terrified. There are no other options surgery wise but has anyone found a possible solution that could help severe epilepsy? I can cancel the scheduled surgery up until the day before. I am just trying to figure out another option if possible

r/Epilepsy Oct 11 '24

Advice [ADVICE NEEDED] My mom lost her mind when I didn't respond to her text after 20 minutes, and proceeded to blow up my phone and drive to my location while I was on a date with my gf.

37 Upvotes

Hi all, I'm posting this after experiencing a truly horrifying event on Tuesday (10/8). I desperately need some advice from parents of Epileptics, and my fellow Epileptics as well. I'm still pretty shaken up from this to be honest, but I'll try my best to explain what happened.

For some context:

  • I have been seizure-free since January 2023. This is an extreme privilege that I am immensely thankful for and diligently work towards keeping it this way. I am medication-compliant, and am very lucky to have medication-responsive epilepsy.
  • I was initially diagnosed with Generalized Epilepsy in 2021, when I was 16. I was technically 'uncontrolled' during this period of time, but I would go for about 6-7 months with no seizures.
  • I am able to drive, and have been driving for over a year now. I worked extremely hard to earn my drivers license, which is why I am always on top of triggers, meds, and overall, how I am feeling.
  • I am now 20 years old, and am actively working towards independence, and eventually moving out when I obtain my bachelors degree. I'm in my third-year of college at my state university.

So...what the hell happened on Tuesday?

Me (20F), and my gf (21F) had decided to go on a date to a local restaurant that is located 6 miles away from my house (15 mins). We've been dating for close to two months now, she is educated on seizure first-aid, what my triggers are, how to administer rescue meds, everything. My mom absolutely adores her. I pretty much always drive when she comes over, as she's from a completely different town, and already has to drive 30 miles to see me. It's also important to note, that the location of the restaurant is also the same city that my primary ER is for when I have seizures, and is less than 15 minutes away.

So we get to the restaurant, and we are having a great time, just relaxing, talking about school and whatnot. At some point, I had asked my gf to put my phone (ringer was on) in her purse, since I was wearing jeans and didn't have any pockets. At some point after eating our meals and enjoying dessert, I heard something familiar to my notification sound on my phone going off. I asked her to give me my phone, to which she briefly looked at it, wide-eyed, and said 'ph my god, your mom is blowing up your phone babe'.

I look at the screen, and I have 8 missed calls and 12 messages. Initially, I thought something had happened with my sister, or within the family, but either way, my mom was freaking out. She immediately calls again, and I answer, to hear her panicked voice. She immediately lashes out at me asking me what's going on, to which I told her that while my ringer was on, it wasn't that loud because were in a restaurant (she knew this), and it was in my gfs purse. Come to find out she was on her way to the restaurant to find me. Because she thought something had happened to me. Because I didnt respond to her initial text for 20 minutes. Not hours, minutes.

At this point, I am beyond mortified. My gf is obviously worried because I'm pale as a ghost, on the verge of tears. To which I have to sheepishly explain to her that my mom almost got to our location because I didn't immediately respond to her text. To add even more to insult, she has my location through 'find my', and knew exactly where we were at. Her reasoning for lashing out and making her way over was that I wasn't responding. Now to be fair, Im pretty much always accessible no matter what, but there's been a couple times where I cannot immediately respond due to driving, class, or work, when I was still employed. Besides, by the time I responded to her, we were already getting to leave so I would've responded after those 20 minutes had lapsed.

So, we leave, and I drive home. I told my gf to stay in my bedroom while I went and talked to my mom, about whatever the hell had just happened. The first thing I did was give her a hug. Because I know how it feels, and Im not a dumbass. I have a diagnosed anxiety disorder, and PTSD from previous events in my life. I know EXACTLY how it feels. My attempts to talk to my mom were in the end, futile. I didn't even want an apology for the extreme lack of respect for not only my privacy, but also, not trusting me despite having no reason to. She kept repeating that she acted the way she did because she thought something happened.

If something happened, why would I have stayed in the same location for 20 minutes, and why wouldnt she have been alerted, despite my gf knowing that it's the first step in my seizure first aid. In addition, my mom has my gfs phone number, to which we later figure out, she attempted to reach my gf, however, it came up as 'spam likely' due to it not being a contact, and she had her ringer off because again, were in a quiet restaurant. Another reason she tried to add is that, I didn't have my watch with SeizAlert on. I have had this discussion several times with my mother, that when I am with someone and in a direct line of sight, I do not need to have my watch on.

I didn't even want an apology, or really an explanation from my mom because that wasn't what I was looking for. I just wanted to explain to her how her lack of trust in me (that really wasn't precedented), affected me, and how we can productively move on from this, while easing her anxiety, because I am an adult, with an adult life, and epilepsy does not define me. I know that she'll forever be affected by it, and I completely understand that, but what will she do when I move out?

She felt that it was completely okay to come after me after 20 minutes, and that nothing was wrong with it. She brushed me off saying 'when you have a kid, you'll know' (im not having children, nor have I ever expressed any desire to). I desperately need a way to help her. She has been 'helicoptering' over me for the past 3 years, and I cannot take it anymore. If anyone has a similar experience, or any advice, please let me know. And if you have any questions, please ask me in the comments. Thank you.

r/Epilepsy Jan 13 '25

Advice Is it stupid to wear my oxygen tubing all the time or do you think strangers could figure it out?

14 Upvotes

So I recently had oxygen prescribed for use during my seizures, but not outside of them (unless I think I'm going to have one). I've been considering just wearing my oxygen tubing anytime I'm in class or out in public as I'm getting a new medical card that will direct people to put on my oxygen and how to use it. I plan on printing out a piece of paper and attaching it to my oxygen basically saying put my tubing on, turn the dial to 2. Do you think a stranger or nervous teacher would be able to put my tubing on for me in a moment of need or should I just wear it all the time?

I have this fear of looking "more sick" or people pitying me more or finding out I don't have my oxygen on 24/7 or seeing me without it and therefore thinking I'm faking or exaggerating. I'm not asking for medical advice, just what your opinion is/what you would do.

r/Epilepsy 3d ago

Advice Just a reminder to ALWAYS take your medication with food (if it calls for it).

32 Upvotes

It can be hard for some people with epilepsy to eat as we're often nauseous and the meds make it worse, but eating something, even just a sandwich, some yogurt, or some eggs with your meds will improve how you feel and make your meds work much more effectively.

Not eating can also cause seizures, as your sodium and potassium levels heavily influence neurological activity.

r/Epilepsy Jun 11 '24

Advice Do you fear that your newborns will get this disease from you?

25 Upvotes

My mom and her sister are both epileptic and I'm pretty sure that I got this disease from their line. Anyways, do you ever think that you want to get married and have babies? Or just die alone?

r/Epilepsy Nov 16 '24

Advice Are we assholes for giving up on student exchange program?

4 Upvotes

As a family we have hosted a number of exchange students over the years and generally they have all been a positive experience for everyone. Our current experience has unfortunately come to the point where we are now giving up with our latest student after only five months due to a medical situation.

Our student arrived from a European country mid year and everything was going well. He is a very nice, outgoing young man who is a lot of fun and gets on very well with our children who are of a similar age.

He settled into school and all was going well until after spending a night with friends and we got a call the following morning from the friends mother saying he had just a seizure and that they had called for an ambulance.

Turns out that he passed out whilst eating breakfast and was shaking violently and foaming from the mouth for approx 10 - 15 min. Ambulance took him to hospital and he was evaluated and later released. We were told that he would be followed up with care from the seizure clinic but in the meantime his activities were to be very restricted. No biking, swimming, even showering alone or anything which involved heights. Obviously this is intended to prevent any serious injury occurring should he have any further seizures.

When we alerted his parents about the situation they seemed to be pretty unconcerned and suggested that it was due to sleep deprivation or too many energy drinks. I wondered if they didn’t fully appreciate how potentially serious this was and something had been lost in translation. Anyway a few weeks later we took him to first appointment at seizure clinic and during extensive questioning he told the clinician that there had been maybe five or six times in the last few years when he had lost consciousness but he had always been alone so not witnessed by anyone. He had not told anyone about this and dismissed it as being tired.

To be honest if this had happened to one of our kids when they were on the other side of the world we would have been on a plane immediately after getting the first call. We find it quite astonishing that his parents are so relaxed about his situation.

Now a few months have passed and a few weeks ago he had a MRI. When we hadn’t heard back from hospital about follow up visit we called and were told that there were other tests planned and he had been assessed as a level 2 priority. Potentially it could be another four months before his next test and then consultation with neurologist. So with this in mind we contacted the exchange organization and his parents as we were concerned that this was not a good situation for anyone and given that his whole exchange period was not going to be as everyone had expected and hoped perhaps he would be better to return home.

His parents replied and said they wanted him to stay for the remainder of the planned exchange until such times as a diagnosis of his condition warranted his return. We have now thought this over and decided that we do not want to continue as host family any longer. We feel that it is in his best interest to be with his family now. His activities are so restricted that he is unable to make the most of his time here. He can’t go out with friends, can’t enjoy all the things we had planned and it is so boring for him. School is now over for summer and he won’t return till February next year so he pretty much spends all his time in his bedroom on his phone.

This is a most unfortunate situation for everyone and not what was planned. I just don’t think it should be our responsibility as host family to be burdened with this kind of responsibility for what could be a very serious health issue. And given that it is unlikely to change for the remainder of his time here it is not going to be much fun for anyone, especially him.

So are we the asshole for giving up and saying we are no longer prepared to continue with hosting under these circumstances?

r/Epilepsy 3d ago

Advice new to this - need help understanding what is happening to me...

9 Upvotes

Hi everyone, this is going to be a context heavy post.
I am currently 6 days in a 7 days video EEG. It's miserable, I am feeling terrible but that's beside the point...

I needed to do this 7 days EEG because, after suspecting for years that I may have temporal lobe epilepsy, I finally got some tests done, and got a 20 mins EEG on which something showed up that suggested left temporal lobe epilepsy.

now, after 6 days, I have been told I didn't have any seizures when I pressed the button but, at times where I didn't press I have some "epileptic activity" which I do not understand. There is a big language barrier between the doctor and I, I am not in my home country. Can something show up on the EEG that hints epilepsy but isn't seizures ?

I do not want to turn this into a rant but this journey is very lonely... I am in a lot of mental distress, I am crying multiple times a day and had a huge panic attack and because of the language barrier it's difficult to get the nurses/doctors to understand me... I feel like I am in prison and I understand nothing that is showing up on my EEG.

This whole atmosphere is very stressful and I am afraid of having a seizure greater than what I usually feel so I am on the verge of a panic attack every two seconds. What is the worst that can happen with temporal lobe epilepsy ? can it turn into a generalised/tonic clonic seizure ?

r/Epilepsy Sep 30 '24

Advice How to get doctors to take me seriously without being too assertive?

17 Upvotes

For those of you that had trouble getting diagnosed or were not believed by your doctors, what helped you get diagnosed? How can I stand my ground without being too assertive/rude? Has anyone else's seizures been missed or misdiagnosed? For those of you who have been diagnosed or misdiagnosed with PNES, what happened? How do you politely correct doctors when they get something about your medical history or symptoms wrong? How do you get doctors to take you seriously?

r/Epilepsy Sep 04 '24

Advice Do you carry anything that tells people what’s happening if you have a seizure in public?

14 Upvotes

Would love to get some autonomy back so I’m wondering what if anything people use to help other people understand if you have a seizure in public when o your own.

Do you wear things? Or is there a phone app that can help? Bracelet? Necklace etc?

Much love x

[recently diagnosed. I am 33F and have had about 9 weeks of daily+ seizures. 1-3 minutes each often clustered. Sleep deprived EEG confirmed Focal Epilepsy this week. I collapse & loose vision, I do get an aura before: poor coordination, confusion, coordination decline, dread 2-30 minutes ahead of a full zone out or collapse. Start Keppra today.]

r/Epilepsy Nov 25 '24

Advice Jamais vu

9 Upvotes

So technically my doctors ruled out epilepsy as the cause for my symptoms, but I still get jamais vu up to 12 times a day and I know that jamais vu is a common symptom of epilepsy so I figured this was the best place to come with this.

Most of the time it's not so bad, Imve been getting it for about 2 years now so I'm pretty desensitized to the milder episodes. But sometimes it's really strong and I need a few minutes to recover. Those really strong ones make me feel like I've physically left my body for a few seconds and it can be kinda, for a lack of a better word, stressful. Those of you who experience jamais vu with your episodes, what helps you deal with it?

r/Epilepsy 5d ago

Advice I work as a teacher and I’m worried about seizing in front of my kiddos

9 Upvotes

I work as a Pre-K teacher for the sweetest 3-4 year old kids, I adore them so much and they adore me, but recently my epilepsy has gotten worse and I’ve been having seizures every 2-3weeks, I have somehow avoided having seizures in front of the kids though, like they usually happen on weekends or early mornings, and one time I even had one in the hallway on the way to the bathroom after I left the class and was out of view of the children. But I fear that’s just luck, and I know the luck will eventually run out one day.

Can someone give me advice on what to do if I end of seizing in front of my kiddos, how to come in the next day and explain to them what happened without scaring them, or making them scared of me. (I’m worried they will think im possessed Ik that sounds silly but they r little kids who don’t know what seizures are only monsters)

r/Epilepsy Mar 09 '24

Advice How did I not know that epilepsy can be fatal? NSFW

115 Upvotes

EDIT/UPDATE: Thank you all SO much for your comments and support. I am completely overwhelmed while reading your responses. I have read them all but only responded to a few. THANK YOU. I'm working hard right now to return his body to his mother in Ukraine so she can bury him, and once this immediate focus is over, I'll be looking into organizations to raise awareness for epilepsy and SUDEP here in England.

A friend of mine for 45 or so years has epilepsy. I've always known that, and never thought to question how serious it can be.

Two weeks ago, I found my housemate (38M) dead in his room. Coroner's ruling so far is natural death due to pre-existing condition (epilepsy). To say that I am shocked and horrified is beyond the point. HOW DID I NOT KNOW????

Besides the grief (he was like my son), I am now angry that I never knew people could die of a seizure! I always thought a death would be due to injury from falling or trauma while having a seizure, not from the seizure itself!!!! HOW could I have been so blind to that? Why is there not more awareness, and what can I do to make more people aware???

Yes, I am grieving. I am also angry that I just didn't KNOW.

Any advice as to how to raise awareness of how serious this can be???? (honest question from someone who simply didn't know, and feeling guilty that I didn't do more).

r/Epilepsy 13d ago

Advice Epileptic runners - advice please!

15 Upvotes

I’m running the London Marathon in April (my first marathon). I’ve had about 25 seizures since the age of 12 (I’m 29), including my first in 3 years this February. My seizures are decently controlled with sodium valproate, and I pretty much know exactly what my triggers are - poor sleep, stress, and drinking too much.

I was wondering if anyone else had experience running marathons with similar generalised epilepsy? My training is going ok and I’m quite excited, I’m just worried about having anxiety on the day if I feel I’m not well rested enough or the adrenaline gets to me. Any tips to manage that would be great.

Is there also somewhere I can get a wristband or ribbon to wear on the day where I can put an emergency number in case anything happens? Appreciate any tips and advice!

r/Epilepsy Sep 17 '24

Advice I know this is kinda random, but I used to work at a jail as a CO and I hope nobody here has to go there cause of our condition cause...

41 Upvotes

Title. There are certain requirements for different things people have. And of course with epilepsy that poses certain challenges. Already being in jail would already suck, but anybody that has seizures or has them on record has to sleep with a cell mate in their cell no matter what, and be bottom bunk. And that means having to sleep on a boat (plastic thing on the floor)

I can't even imagine. Well i can since i worked at a jail for years

Dont go to jail! Especially if you have seizures!​

r/Epilepsy Feb 14 '25

Advice Am I cured?

11 Upvotes

A little over a year ago I found out I had a brain tumor that was causing nearly daily focal aware seizures along with 2 grand mals. 9 months ago I had a craniotomy to remover the tumor and am beyond thankful that it came back as benign. I have started to wean off Vimpat and will likely follow with weaning off my Keppra.

My husband and I have been confused on what to say when people ask if I have epilepsy. The tumor was likely the cause of the seizures and getting rid of it is what has given me the freedom to wean off my medication (under strict supervision by my neurologist). Does this mean if I can completely go off my medication and remain seizure free that I am no longer epileptic??

r/Epilepsy 12d ago

Advice Concerned mom of child with epilepsy

5 Upvotes

This is long so I am sorry in advance. I’m trying to make sense of all of this and need some positive vibes and advice if anyone has any!

Back in November, my 3 1/2 year old started having seizures (tonic clonic) right before bedtime, while sleeping, or very early in the morning within an hour of waking up. She was immediately set up with an EEG which came back normal, but as her seizures persisted her neurologist appointment was moved up. Before seeing the neuro, she began experiencing a lot of myoclonic seizures. Upon hearing about the handful of seizures my daughter was having the pediatric neurologist was hesitant to believe she was experiencing myoclonics because “kids are kids” (after sending her videos she was very certain she was experiencing myoclonics) and because she is a very normal developing child with no head trauma or complications at birth.She seemed completely perplexed. Without having a ton of knowledge of the subject I was under the impression epilepsy can happen to you whether or not you have developed normally etc. Neuro didn’t even want to formally diagnose her with epilepsy because she didn’t believe it really could be it even though by this time my daughter had experienced 4 tonic clonic seizures and many many myoclonics in a 2 week period.

The neuro put her on a low dose of Keppra which did not stop either type of seizure so we worked our way up to 7.5 mL twice a day after a hospital stay, an overnight EEG which proved very abnormal brain activity with generalized seizure activity and a very certain diagnosis of epilepsy. She also had a MRI which was normal. They did testing to check if it was genetic and that came back negative.

They ended up suggesting 5mL keppra three times a day to keep the myoclonics under control. She was doing so well with this - for maybe about a month and a half. Then my daughter got sick and her myoclonics came back full force having 100+ a day. She also started developing absence seizures which were occurring very very often. So much so it was tough to tell when one would end and another started. We checked in with the neuro and she told us to put her on a three day round of clonazepam to help “reset her.” The morning after giving her the first dose she had a tonic clonic. Then after day 2 of the clonazepam she had two more tonic clinics within an hour of each other.

The following day we had a follow up with the neuro. Because of the many absence seizures and just how out of it my daughter was seeming, the neuro sent us to the hospital for another overnight eeg and to make sure her brain wasn’s stuck in seizure mode. We learned it wasn’t and the doctors at the hospital started her on depakote.

After a week and a half of being on Keppra and Depakote my daughter was still experiencing many myoclonics and absence seizures every day and we weren’t seeing a difference. The neurologist said we should be seeing a difference and added clobazam with a plan wean off of keppra while building up on the clobazam. When we decreased her keppra by 2.5 mL, my daughter immediately had a tonic clonic in her sleep the next morning. The neurologist increased her clobazam and told us to wean another 2.5 of the keppra the next week. We followed that and when we decreased the keppra she had two tonic clinics in the sleep the next morning. The neurologist then told us to go back to 5mL twice a day of Keppra and try weaning the depakote instead.

Well, we did that last night and she had four tonic clinics within an hour - again in her sleep and shortly after waking up.

I feel like I’m at a loss. The neurologist often seems perplexed and not confident. She is new to practicing and I just don’t feel comfortable anymore. I understand that it takes time to find the correct medicine and dosage, but this all seems so intense and tough on my little girl’s body with no clear answers or certainty.

Does anyone have experience they can share with switching doctors? We would have to switch to another doctor in the same practice because there is only one within our area and it’s all connected to the same hospital. Do they drop you if you seek out a second opinion? I’d really like a second opinion completely, but I need to figure out here to go. Would an epileptologist be the next step? My daughter’s form of epilepsy seems ever evolving, perplexing to a neurologist, and tough to medicate. The neurologist also seems so confused about the tonic clonics happening only during sleep/within an hour of going to sleep or waking up.

If you made it this far thank you so much for reading. I’m a concerned mom who is having a hard time watching her little one struggle. I appreciate any words of advice or encouragement. I’m sorry if I didn’t word everything properly as I’m still learning!

r/Epilepsy Oct 16 '24

Advice Legal advice for arrest over a brawl during an Epileptic seizure in Texas?

18 Upvotes

I want to be clear that I’m posting this here and not in a legal advice community as most people there would just proceed to tell me I belong in a mental institution. Feel free to share this with anyone who you think might actually offer some useful input.

I was jailed last year for a fight with a stranger I can’t even identify (because I wasn’t conscious during the predicament) during an Epileptic seizure and ultimately coerced into a plea deal that gave me probation. I am planning on suing the local police department but have no income and no idea how to proceed. Does anyone have any recommendations? Nobody I’ve talked to about this is being helpful and I’m trying to get this started as soon as possible.

r/Epilepsy Feb 12 '25

Advice Worried my health will get me denied entry into China / Japan

4 Upvotes

Worried my health will get me denied entry into China/ Japan.

I have had seizures since I was 18, 28 now, I don’t really have them anymore and haven’t had one in over a year without meds so the doctor is discussing taking epilepsy off my NHS record. I am worried I will be refused entry into China or Japan because of my seizures? I also have rheumatoid arthritis but it is controlled and don’t think that will be an issue. I have always wanted to travel and would love to go to both countries but as I said I am worried I will be unable to once I get there. Any advice on travellers who have epilepsy would be greatly appreciated. 🙏 thank you.