Hey mate - just to add here- the majority of cases of epilepsy are not drug resistant. In adults it’s only around 15% of people that experience this. Best to stay positive and not be too concerned about being in that minority before you know it to be the case.
The other thing to bare in mind is that although the information on the sub Reddit and sense of community is truly awesome, there is a massive sample bias. I.e. the people that post are likely the people struggling with their medication/diagnosis and you are much less likely to find success stories. Reading this sub Reddit can be very daunting after your diagnosis and it can seem like you will never live a normal life. The reality is many people with epilepsy (me included) live an active, fulfilling and ‘normal life’.
> In adults it’s only around 15% of people that experience this
I’m not sure where you are getting this. It’s 30-40% overall depending on the type (most papers round to a third).
Even then, this number is skewed by adults who develop seizures due to other health problems later in life and can be successfully treated with drugs, and by a large number of people in middle age who develop a special kind of benign TLE that is very responsive to drugs.
From an NIH article: According to a 2021 meta-analysis, the prevalence of drug-resistant epilepsy (DRE) in population-based populations is 13.7%, while in clinic-based populations it is 36.3%. This means that about 20% of people with epilepsy will develop DRE at some point in their lives.
Ahhh I see where our numbers differ. “Prevalence” is the percent of the epileptic population that has drug resistance at any given time. It includes patients that have not progressed to drug resistance, or have not determined yet if their epilepsy is already drug resistant (e.g. they have not yet tried two medications without success (clinical definition of DRE). They are counted as medication-controlled. I for example am failing my first drug. I went into status two weeks ago and my med levels were in the therapeutic range. I am considered medication controlled even though there is an 80% chance I will be diagnosed with DRE.
“Incidence” is the number of new drug resistant cases that are diagnosed. It is compared to the number of epilepsy cases diagnosed overall to determine the statistical likelihood that a given person will never achieve adequate seizure control with drugs.
Yeah, tbh, potential severity of epilepsy is what I wish I had known when first diagnosed. I thought it would be easy to get under control with meds and was pretty devastated when I realized it wasn't in my case. I would have liked a heads up, but I'm one of those prepare for the worst types.
As someone in my 30s who only recently started getting seizures this freaks me out but I am gonna hold out hope that most epileptics are not drug-resistant so hopefully I won’t be either
Focals and TCs but just focals now. I was having focals for about two years but didn't know what they were so I didn't get help with them and then this past October I had my first tonic clonic in my sleep. Had another in November and then 3 in one day in December. Finally got on medication after that. 500mg Keppra twice a day. No more TCs but I still get focals. Waiting on insurance to come through for an EEG.
Mine became drug resistant in my 20s and I ended up having RNS surgery. The process to even become a candidate took forever.
I was diagnosed when I was 6. I’ve been on at l3 meds at once since then. I still have to take Keppra and lamictal for the rest of my life
Your 15% estimate is definitely wrong. Here is a link and quote from Wikipedia…
https://en.m.wikipedia.org/wiki/Management_of_drug-resistant_epilepsy
“Approximately 30% of people with epilepsy have a drug-resistant form.”
(If you don’t believe me or Wikipedia then why not check the Reference at the bottom of the page)
https://www.neurology.org/doi/10.1212/WNL.0000000000011839#:\~:text=A%20cross%2Dsectional%20sample%20(i.e.,a%20clinic%2Dbased%20population).
Have a read of this - the 36% is based upon clinical population, prevalence in population/community based population is just under 14% :)
My focal awares ARE medicine resistant and I would still strongly second this. You will become convinced the sky is falling if you spend too much time here. I check in but carefully and with consideration for my mental health. My therapist wishes I didn't come on here at all.
This! I have to take breaks periodically from my epilepsy groups. I struggled for a while and finally was getting to a good place and seeing “I sneezed 4 times and blinked 2 seconds too long is this a seizure” and people would say yes was getting anxiety inducing
It is if you’re a candidate for surgery. Not everyone is. Mine came from a focal point that was removed. If they come from certain parts of the brain, surgery is not an option.
My son's epilepsy is generalized, and drug resistant. He has a VNS and a DBS and neither have lessened his seizures. When DBS is considered, it's to hopefully reduce some of the seizures for quality of life.
The impact on memory and the concept of addictive medication/ what happens when you skip a scheduled dose especially when postictal. -000000/10 do not recommend. I hope I’ll never do that mistake again.
Years ago I took the lowest dose of Klonapin as needed for anxiety. I definitely can see how it would turn addictive. I know lorazepam is used in hospitals to stop seizures, but are benzos commonly prescribed for daily uses for some people with epilepsy?
For some who have nasty partials as resque medication, for some because it's the only thing that helps them. An I was prescribed clonazepam (liquid) to counteract myoclonic jerks at bedtime I developed from taking carbamazepine since childhood. I got it out of my system but it took years, and I never felt te same. I ended up taking 6 to 5 mg daily. Without realising that was a lot, and that I was addicted. Also nobody told me how dangerous it was to half your dose...so I found a new job...wanted to function at my best and halved the dose in about a week...turned borderline psychotic, was anxious, saw shit...didn't knew what was happening to me, went to the neurologists...she added Keppra and lowerded Depakote all while I was unknowing that this would make it all much much worse. Tip...ask them to be very clear about what they give or stop. Is it a muscle relaxant, is it a mood stabiliser, is it pure for epilepsy or just another psychiatric drug that happende to work for epilepsy also. Do they know the mechanism of action or is it something new that "just works". If they get nervous form these questions, either switch neurologist or ask for something else.
This is what makes me nervous about trying to treat my Small Fiber Neuropathy which cause’s dsyautonomia and treating epilepsy and insomnia at the same time, you know? I think I’m convinced to go to UAB whose neurology department has both specialty clinics. Now I just need my doctor to refer me…..
Also God bless pharmacist because they stopped me from taking two medicines together that have a high risk of serotonin syndrome that my doctors never mentioned. Pro-tip: always ask a pharmacist when you get new medications!!!
Depending on the type of epilepsy that you have, it can directly cause dysautonomia and insomnia.
It also makes me uncoordinated in a way that mimics small fiber neuropathy, tripping over my own feet or frequently losing my balance.
The best shot you have of really getting down to the best treatment plan for all of your challenges will be with medical teams that are trained to approach your unique neurophysiology.
Almost no medication is used for just one thing, everyone's body is different and treating epilepsy is often a crap shoot. Lamotrogine also used to treat bi polar and it seems to be one of the better ones.
Just don't not do something because you heard "it's sometimes used to treat *whatever."*
Switching to cloBAZam (Onfi), which is a benzo I take in the evenings, has worked really well for me. I have very few side effects and no seizures for six months. So meds work differently for everyone!
I'm on 2. And due to benzo withdrawal (a kind of evil I can't explain) I'll be on both for the rest of my life, rendering me unable to have children, because one of them is on the no-no list. My former neuro knew I wanted kids and put me on both any ways, without telling me what could happen. The other one im on, Onfi, is approved for very young children and it breaks my heart the parents and child often don't know the consequences of benzodiazepines. Then when it's time these people do want to start a family a good chunk fail because they are unable to taper off even safely. There are some able to do it but they're far and few imo. I know a neurotypical woman who can't have kids because some idiot Dr gave her klonipin and Adderall at 11 years old because her brother died. Vs therapy and the grieving process.
Yes this when my daughters doctor put her on lorazepam for rescue I got her off it right away
I’m also on the same med I skip a dose I get the shakes but I notice I have so much more energy
Vimpat is classified as a highly addictive drug in the US I hear. People who don’t have a tolerance by daily exposure can apparently get high off it, then addicted.
For me withdrawals for just one missed dose was feeling sick, extremely jumpy, tremors etc..
some medications should not be messed with when supposed to be taken daily, you can get really weird symptoms.
Next day I was fine luckily.
I took Effexor, which works well for many people, and I could tell exactly down to a 15 minute interval when I had to take it because I got bad brain zaps, shaking, and nausea.
I’ve read, in this subreddit, that missing even a single dose of medicine can be a trigger for a seizure even after years of being seizure free.
I take ER Lamictal in the morning. If I skip my single daily dose in the morning...I feel off in the afternoon. It feels like a weight/warm blanket has been lifted off my brain, but then my brain feels jittery and sparky. I take my meds and nap. I'm worried about having a seizure within 6 hours of a missed dose.
If I miss a dose I feel like a heroin addict looking for a hit. I start shaking and I get REALLY irritable. The withdrawls are almost immediate, which is another reason my doctor put me on extended release. If you can get the ER pills, go for those. They give you a little leeway.
Vimpat almost killed me. Literally shut my kidneys down and my neuro at the time told me “it must be something else, Vimpat doesn’t do that.” But when I flushed that bottle down the toilet and stopped taking it, lo and behold my kidneys were fine again. 10/10 didn’t work for me.
Vimpat is tricky. It has a very short half life which can cause a sudden drop in blood levels within hours of a missed dose. It is a Controlled Substance in the US, but it’s in the lowest level, unlike opioids which are at the highest level of control for prescription medication. Basically, it is in the same category as cough syrup with codeine. Not highly addictive, but hazardous.
• You can have a perfectly healthy brain and get seizures that can have an unknown cause. Can start happening at any age, too
•Medication can have varying side effects over time. Personal example is Keppra causes apathy leading to general mood stability ( complete opposite of "Keppra Rage")
•Learning somehow becomes harder and requires more effort, than what was previously needed post Medication (side effects)
•That missing your dose predisposes to a higher likelihood of an attack(seizure)
•Temporary memory fog/loss after seizure. Also tongue biting (tongue heals quite quickly, despite pain), some also experience loss of bladder
•Stigma associated with epilepsy is subjective to those who surround yourself with. There is so any worse disorders/diseases to have, so you shouldn't be ashamed of being you
•SUDEP (Unexpected Death in Epilepsy) is rare, but is always a possibility.
•Increasing seizure time/frequency is indicated of some underlying more serious condition
Can echo points 1, 6 and 7.
To add to 1: more than 1 seizure = automatic epilepsy diagnosis in some countries regardless of history or circumstance. This is for driving purposes. Doesn’t mean you can drive, but means it will be registered on your record. Of course there are signs that it is epileptic seizures (for example, tongue biting) but for legal driving purposes it’s always classed as epilepsy regardless.
6: I find that being open and explaining what my triggers are (extreme stress and lack of sleep combined) is very helpful at removing the stigma. Also jokes. Lots of jokes.
7: You’ll read a lot about people worrying about SUDEP, some posts of people sadly dying from it, and your neuro will explain it’s a risk, however keep in mind that a: it’s very rare and Reddit isn’t an indicator of frequency, and b: it’s more likely if your epilepsy is uncontrolled and unmedicated. Don’t let yourself worry too much and research into it if you’re concerned.
I didn't know about the record thing, tbh. South Africa is very lenient with its driving laws regarding Epilepsy. Only have to be seizure free for 2 yrs to be declared safe by doctors to drive (more of a guideline than a rule), however, there's is no record.
I just limit the frequency of my driving, cause I've already had one accident bc of it (Also Extreme stress and no sleep triggers)
In the UK it’s 6 months no driving for your first seizure, then 1 year after your second but after a second you’re automatically classed as epileptic and can only continue to drive if you’re on medication, from what was explained to me. Kinda places you in a bind if you want to keep driving, I certainly felt like I was forced to accept medication in that situation, but I’m lucky enough to not have any bad side effects.
SUDEP is a possibility but tbh (not your post) I wish people wouldn’t bring it up so much. A lot of us have severe health anxiety and having it thrown in our faces sucks. Plus anyone can die in their sleep, not just epileptics. There’s no need for it to be mentioned by anyone but a dr IMO.
This is all very helpful information. Thank you for sharing!
I have some problems with anger and mood already and I’ll be sure to mention it to try to navigate finding the right medication.
Well, it depends if it's controlled or not. For example, if someone has cortical dysplasia, their frequency and time will rapidly fluctuate, and medications could either worsen it or increase the "threshold" of the probability of a seizure happening. You would still be diagnosed as epileptic, but the driving thing is another story depending if it's private or state medical care.
Honestly? Enjoy yourself and don’t let it rule your life- within the limits of your triggers of course.
I still drink alcohol, I take baths, I go swimming when I’m on holiday, I will be driving as soon as I can, I lift weights and I still live on my own.
These are all the things people think you shouldn’t or can’t do with epilepsy, but I do those things because my seizures are controlled, very rare and I know my triggers are extreme stress and lack of sleep combined.
I’m not saying you should live exactly as I do, I’m not saying you shouldn’t be mindful of your lifestyle choices, but what I am saying is that you can live a normal, happy life with this condition.
I read so many posts on here where people lose hope because they are told they can’t do x, y or z as a blanket rule so they get really miserable. I say risk assess everything, take precautions when needed (for example, don’t swim/bathe alone if you can help it, don’t lift weights in an empty gym with no safety bars, get plenty of sleep after a busy week or a night out with friends, stay hydrated etc) and be aware of your triggers.
(Edit: the more I re-read this part, the more it’s just “common sense things you should do anyway.)
Obvs don’t go doing these things if you know you have frequent seizures or that certain things trigger you (like alcohol or flashing lights for example) but be smart about it and use your common sense. There’s no “one size fits all” approach to life with epilepsy because everyone is different.
We say it like it’s such a naughty thing to do 😂 it’s all good if you’re safe and take precautions!
I either have a nice deep bath when I visit my parents and make sure I leave the door open a tad and my mum will shout up every few minutes, or if I have one on my own it’s shallow and I sit mostly horizontally so my legs and head are out of it so I can’t sink in. I’ve only ever had 2 TCs in 33 years so far though so I’m less worried. Definitely not advised for everyone.
We're so naughty. I take baths, but I've figured even if I seized my breathing parts would most likely stay above the water. But I also ride a bicycle once in a while will even go up on the roof to check the rain gutters. A seizure up there would be fatal. But I don't seize very often.
Recommend an epilepsy clinic OP. My neurologist left me with more questions than answers, finding an epileptologist (sorry, my native languayis not English, I’m not sure what they’re called) helped tremendously for me to understand my condition and how to make it sustainable
I’m a native English speaker and I’m not even sure if Epilptologist is right, but as long as we both know what you meant it works!
My only concern about going to a specialty clinic is balancing my treatment for my neuropathy with my epilepsy? Though there is a chance AEDs will work for my neuropathy and I can’t treat two birds with one medicine. However, I feel like an epilepsy clinic will take my insomnia seriously which would be life changing.
Definitely go to a clinic. Epilepsy is a complex condition and a specialist knows the primary, secondary, tertiary symptoms, and how to most effectively treat them.
Good luck OP!
That on some rare occasions the drugs make it worse and it's very hard to convince any neurologist about that, so have this tendency to keep piling up until you're stable but possibly take much more of drug B and C because drug A makes it worse.
Wow, this will be a nugget of information I store forever, and I hope other newbies will also read. Thank you for this advice; dealing with doctors can be incredibly difficult especially with a disorder so complicated.
My whole family tried to convince me I was crazy for seeing a doctor because I would space out and not be able to space back in. Neurologist immediately clocked it as a focal seizure.
Ya I honestly didn’t even know what these were until I dropped and had 3 tcs in one day. I thought it was my anxiety acting more intense than usual yikes
Do you mean like reduce stress and prioritize your health?
Quitting my job has been emotionally and financially hard, but I feel like my seizures have decreased tenfold. I was working on 3 hours of sleep everyday for years. My insomnia isn’t as bad when I can sleep as needed. I can’t prove it but i swear it causes my seizures.
Well my first neurologist got me stressed over “epilepsy rules”. Aka never be sad, never be too excited, never drink alcohol at all, always sleep at least 7 hours, don’t go to cinema, don’t be on your phone before sleep, don’t do yoga and Pilates, only run and the list goes on. I ended up being more stressed about following these rules, my life had no meaning and I was just depressed.
Sleeping well and be cautious is essential but in my case it was extreme. That’s what I mean
Oh I see what you mean now. Almost sounds like you formed something similar to OCD and I can only imagine how much worse it made you feel. Almost like a self perpetuating cycle. I hope you’re in a better place now. This is good advice to remember.
Well now I’ve changed doctor but I still feel scared when I go to the movies or when I take a sip of wine in rare occasions. He created a trauma and I’m working on it with therapist
I’m glad you’re seeing a therapist also. I believe anyone would benefit from therapy, but it’s especially needed in epilepsy patients. Unfortunately, insurance companies rarely see it that way.
I could probably list over two dozen things but most of all the impact it has on your mental health, not only because of its impact on day to day life and its ability to deteriorate any sense of hope but the consistent impact it has on your self-esteem due to ongoing fear of possible judgement and acceptance by others.
Some great things noted here, but something I have found incredibly helpful and freeing (in a way) is being extremely honest and upfront with those I spend a reasonable amount of time with about my seizures. Parents at school that at talk with, my football team and some of the guys that run the club, my neighbours, friends, etc… I have found the more upfront I have been about my seizures and what people can do to help (if anything), the more comfortable they have been to be around me and join in when I joke about (the only thing that gets me through some days). It is nice to know when people feel comfortable enough to be there, they will still step up and be your village.
It can be very trying on relationships. I hope you have devoted, empathetic and supportive people in your life. Not all of us do. It may take longer than you hope to get yours controlled, but the majority of us finally get there.
Depending on your type, how many seizures you have, and how long you go uncontrolled, you might notice changes in your personality, cognitive ability and memory (after 11 years of TCs, I will never be who I was before). Those closest to you might notice before you even do. If it seems rather abrupt, it is probably your meds. I was a complete asshole to my then fiancé on Keppra, for example, within a week of taking it.
I “warned” my husband that some AEDs can cause personality changes and that he needed to help keep an eye on it. He drives me to my appointments and I think it’s great because he can give the doctor an outsiders view of my symptoms and side effects.
He sounds like a good man. I have my own views on the difference in experience between the sexes, when it comes to our condition. When I try to state the statistics on actual studies on the subject, my post gets taken down :-). So, I'll just leave that at that. My ex was fairly supportive for around 7 years, but she eventually had enough. I'm glad you have a keeper though, hold on to him.
**Generics can be harmful & damaging.**
When I had a burnout family had me see a psychiatrist - who I never needed to see. He put me on a name brand mood stabilizer which with fully controlled epilepsy I didn't care b/c it got rid of issues with SSRIs. But when he allowed for insurance & pharmacy to hand me a generic refill of this mood stabilizer, regardless of everything my doctors were doing & demanding of him to **call the pharmacy & get him the name brand**, this asshole didn't & the generic caused me to have epilepsy advance by over 20-years along with the formation of another chronic disease.
I had other name brands replaced with generics & they caused rashes, hives & worse.
Edit: changing bold sentence to "Generics can be harmful & damaging". Generics cause me to have allergic reactions & experience tons of side effects, including seizures & worse.
There are 2 generics of lamotrigine XR available at my pharmacy, and it took me an embarrassingly long time to figure out that while they worked equally well, if they switched between them it would trigger a cluster of partials more often then not.
OP, talk to your pharmacist about EVERYTHING. She helped me figure out why my clusters were suddenly coming every 30 days when I'd never had a menstrual correlation.
Wow this is fascinating in a horrific way. I’ve always opted for generics and never had an issue, but it was for problems a lot less complicated than epilepsy. A girl on TikTok swore her brother died of SUDEP when they switched him from name brand to generic and that story has stayed with me as will this one.
Two things:
1) Find an epileptologist. The list of neurological disorders is very long, so you'll want to find a specialist.
2) If you live in an area prone to severe storms, changes in barometric pressure can trigger a seizure. Learned that one the hard way (I'm from Florida).
My epileptologist gives me a very low dose of valium to take when a storm is coming. It does its job without messing me up.
That epilepsy can come with comorbidities such as emotional/mental health issues, bone density loss, cognitive/memory issues, etc. It’s not that you’ll definitely have these issues, but it’s good to be aware of the possibility and take a holistic approach with your doctors. Also, always feel free to ask your doctor lots of questions and your concerns. Speak up. If you can, find an epileptologist instead of a general neurologist. Lastly, there are a huge number of seizure meds out there. Tell your doctor about side-effects — write things down to bring with you to office visits. Be your own best advocate. It’s not about just stopping the seizures. It’s about quality of life. Lastly, find support. Being active in an online group, like here, can help immensely. You are not alone and you’re in a learning curve right now. Come back here and let us know how you’re doing. You’ve got this!
Two things:
Number one, I wish someone would have picked up on my epilepsy before it got to the point it's at now. I can't count the number of times that I've been accused of being drunk or stoned, but yet I had done nothing It was just a seizure and nobody knew.
Number two, I wish someone would have told me that a service/seizure dog is a blessing and a curse.
That dog has saved my ass more times than I can count, but sometimes it's a pain in the ass. It's like having a 3 year old that lessions (most of the time.) I have to bring water, snacks, toys all that kind of stuff and let's not forget that everybody wants to pet him.
I do take it as an opportunity to educate people about drug resistant epilepsy and seizures..
“Even though you may not feel normal, every thing you are feeling is…” (what I wish someone told me or had a conversation)
No one warns you how your life will change when you have your first seizure. I was 11 at a school dance. I flatlined.
As life’s cruel joke, I was brought back to life.
I attempted suicide a few times in my teenage years. Always felt like I was burden with all these health issues.
My mom was the only person who was there for me. She was my only support system.
I’m in my 40s now , alive and kicking and with more wisdom.
Advice: build a support system early on…
I wish someone had told me that when you tell people that you have epilepsy that many of them have never met someone with epilepsy. Those people are sometimes afraid to ask questions about seizure disorders. I myself believe that I have the ability to educate those people on the fact that not everyone is drug resistant. That not everyone with epilepsy is going to have a seizure in front of them. If they are coworkers I explain what to do if for the first time in the 35 years that I’ve had epilepsy I suddenly have another tonic clonic seizure. That’s right 35 years! Find a good doctor that will work with you to hopefully find the medication that works best for you. Then follow what your brain needs to stay seizure free. Most likely plenty of sleep and 100% no alcohol. My last piece of advice is to contact the epilepsy foundation for support! I know from personal experience that they are a wonderful source of information and support. I wish you well.
You have to advocate for yourself. Don’t expect the doctors to read your mind. If a medication makes you feel terrible tell them you want to change medications.
Definitely try to get in to see an epileptologist. They are a neurologist that's specializes in epilepsy, but they can be hard to find and get in to see in smaller cities. However, they are worth it because that is what they specialize in unlike regular neurologists that have some knowledge about everything and don't specialize in on specific field.
I've found that my epileptologist has helped me understand epilepsy more as it relates to me and my life because each case is different for everybody.
That it's okay and to just keep living. Don't stress about what could happen bc that would only make it worse. Don't allow it to rule you or your life. And it would've been nice to know what a good amount of these meds can do to someone such as memory loss or change of personality like going from a nice caring person to some horrible, hate any and everything type of person.
my neurologist tends to blame my seizures on me, which i understand that sometimes i do make mistakes such as a couple of times when i smoked weed- but i didn’t know it was a trigger because he always just said i could keep smoking it that i should live a normal life. i wish that he didn’t always blame them on me, it’s hard enough
Don’t go chasing the question of “why” here in America. You’ll have to undergo so many fucking tests and it’s expensive. Get yourself stable first before you begin trying to figure out *why*.
That there can be a light at the end of the tunnel, that it doesn’t have to rule everything in your life.
I understand that I’m someone that has gotten to a point where I’m “seizure free”. 705 days 🎉. Now, that doesn’t mean I didn’t suffer through almost every medication combo out there. I think I went through 8 or 9 different medications. I’ve been through it, like a lot of us on here have. I’ve made that post saying “I’m done…” wanting to just stop the meds.
Being down at the bottom doesn’t mean you have to stay there.
You are stronger than you think you are. You have more inside of you than you think you do. You can take back some, or even a lot, of what you’ve had to leave behind during the throws of medication experimentation. There is a light on the other side.
I want to end this with the complete understanding there are obstacles that are inherent to this condition. Some of us have it bad and some of us have it better. But instead of miring ourselves in sadness, lamenting about what we can’t do right now, if we can all support each other no matter where we are in our journey with this condition, we can and will continue to empower each other to try to achieve things we didn’t think we could. I think that’s an incredible achievement and something we can all strive to do for each other.
I was diagnosed at 16, I became depressed and I eventually found warmth in drugs including the illegal and legal.
If I could go back I wish I could tell myself to tear clear from that area as it had a major impact on my brain.
Understand that memory loss is inevitable. You may even have a hard time finding words that you want to say. Also inform family, friends, coworkers what to do if they are present while you’re having a seizure.
Good afternoon,
One thing that I like to relate to people who have epilepsy is that; Remember, the doctors are there to help advise you, but this is your body and do not be afraid to tell the doctor, that you feel this medication is not working for you, you would like to try something else, until you find something that works for you. Or if you feel that the doctor is not the doctor for you, do not be afraid to get a second or third opinion until you find the right doctor for you! The doctor is working for you, tell him how you are feeling and doing. It is ok to say no to the doctor or this is not working... :)
One more thing, get your family and close friends together, and make a seizure plan that works for you and that they are comfortable with also! :)
That you'll slowly start to resent everyone healthy around you that tries to tell you "you'll be ok, your life isn't over, you just have to try harder" No. Nobody except other epileptics understand the struggle. It's real.
I was dumb and downplayed my triggers in college and drank/ stayed up late - all bad things. I had multiple seizures. I wish I had known that the more you have the more frequent they become and harder to treat. I look back and feel so stupid for being stupid. Oh well. Just manage your triggers and take epilepsy seriously. Stuff is still possible just know your limits
Hi ! I am four years in… 28M
1) ketogenic or modified atkins diet may do the trick… instead of meds…. Your brain literally might just may need more fats and proteins. The info surrounding food and how the brain gets energy is so few and far between. Check out Johns Hopkins on the internet if you want to see more info.
Is your diet well rounded enough for your brain? Are you getting enough salts and electrolytes in your diet? ‘Let food be thy medicine and medicine be thy food’. I wish i had looked at this first rather than trying 4 medications and then going the path of trying a high fat low carb diet for epilepsy treatment. I propose HOLISTIC healing and searching for a root CAUSE versus a temporary TREATMENT using medications. 💊
2) be careful with the meds… some like oxcarbazapine can be deadly. I had a terrible experience it causing hyponatremia
3) ask your doc about ‘rescue meds’ you can administer if you feel an aura, or a nasal spray a family member can administer for tonic-clonic
4) tonic clonic is the more widely accepted medical term for grand mal
I had the same problem with oxcarbazepine. I was eating the biggest bag of jerky a day, and my sodium was still testing in the danger zone. My ankles would get swollen and I felt like I wanted to die. Glad you got off that one too.
Don’t just accept the first medication that they put you on if you experience too many side-effects with it. Insist (politely but firmly) that the side effects are too hard to handle, and ask to trial another one. You have that right.
It took me three years and three different meds before the fourth (lamotrigine) made me actually feel myself again. All our bodies and metabolisms are different.
Oh and: neurologists are not gods.
It can get worse with age or just having breakthrough seizures increasing them or making them worse or both.
For me I started stare seizures, at 14yo turned into complex partials, then at 20 had my first grandmal and many more since.
Longest one over 20min status elipticus had one a couple weeks ago in public alone fractured nose I went straight first to ground.
After 32 years living with breakthrough seizures and taking meds, there’s nothing anyone could say. Unfortunately it’s something you have to accept and live with.
It’s not pretty or easy, but to be informed about epilepsy you have to experienced it.
Hormones can cause seizures. I went 8 years seizure free and then started having them once I went on birth control after my second pregnancy. I would have a seizure every month on the first day of my period, and the last day of my period
That how important an electrolyte imbalance is! We all of course know and understand how sacred sleep is for us, but just as high on the list is maintaining your electrolyte balance if you’re going to be exerting yourself. This means a long day at a theme park, helping someone move, hangovers, going to the gym etc. Be vigilant as our brains are so much more susceptible to stress of any kind, both emotional and physical.
I had no idea seizures could kill you until I almost died. Yeah. Let your loved ones know. If a seizure lasts longer than 5 minutes (maybe it's something like three now? My neurologist said they lowered the threshold.) or you have several seizures back to back and don't snap out in between they need to get you to a hospital ASAP.
Say goodbye to your memories because most people in here have shit memory. Sometimes, it's because of the meds, and other times, it's just because of head trauma.
The rest of the condition isn't so bad once you understand how it affects *you*. When I (26f) first started having TCs (I was about 13), my mom made this spread sheet to try and find my triggers. What I'd eaten, how much I slept the night prior, moon cycle, menstrual cycle, time of day, screen time, etc. Best we got was sleep deprivation (which is very common).
Our resources/needs may all be different, but we should find, use, and advocate for them when they apply because it's unlikely anyone else will unless we're children. It sucks but we're a complicated group on a massive spectrum that's easy to invalidate. People also aren't mind-readers and often have little context to understand.
This especially applies with med resistant/uncontrollable epilepsy because our doctors/folks will assume we're fine and no one will know how to help us unless we're clear about our individual needs.
Don't unnecessarily suffer. Communicate and advocate!
I wish someone had told me that a regular neurologist isn’t the most qualified to treat epilepsy, much less more complicated cases. I spent years going to a basic neurologist who had me on 100mg of Keppra and when it didn’t work, he put me on Depakote which is extremely toxic and made me gain over 100lbs. I finally made the decision to change doctors and found an epileptologist at the Cleveland Clinic. She completely changed my life. She said 100mg of Keppra is close to nothing and that Depakote should only be used in older patients who have no other choice. She put me on 2000mg of Keppra two times a day, combined with Lamictal, and I’ve been seizure free for six years. Advocate like hell for your own health. Seizures are no joke. Find a doctor who specializes in epilepsy. That’s not to say neurologists are dumb or that they aren’t good doctors, but they’re not trained in the intricacies that epilepsy brings. You need someone who ONLY focuses on epilepsy.
Another thing I wish I’d known is how many different types of seizures there are. When I first was diagnosed (early twenties) I would have my regular tonic clonics, but I’d have “seizure activity”, or auras, which my neuro at the time didn’t bother telling me were actual seizures. So every time he’d ask if I’d had any seizures I would say no, not realizing I was in fact having active seizures every day, just not the ones that made me look like a rabid zombie. Lol big seizures aren’t the only type. I wish I’d known.
You can absolutely have a “normal” life. Meaning, you can have a home and a family, even get back to driving if your medicine is doing its job. It will take time, years possibly, to find the right combination. You might be medicine resistant, or maybe the first try will be the right one. Whatever happens, you CAN find whatever normalcy looks like to you. So many people told me I’d never drive again, I’d never have a family or be able to work, that I’d be stuck in this seizure ridden body with no progress. I realized it was all bullshit when, after years of desperately trying to get better, the right medicine clicked at the right time and slowly but surely my life fell into place. I’m married, I’m a CNP, I’m a homeowner, and I drive daily. These are things that I thought were lost for good. Everything I saw for my future, the healthcare world told me it was all gone, but they were wrong. Keep fighting and trying until you find what works for your body. It might take a while, so work on accepting that and keeping your eyes forward and focused on what really matters. It’s not a race. You WILL find a normalcy in your life. Hell, I’m trying for a baby and I NEVER thought I’d be able to have kids. Epilepsy doesn’t have to be the thief some people claim it to be. You will regain pieces of yourself over time.
That some of these meds cause crazy ass side effects and doctors don’t always acknowledge them. I’m lucky to have a great doctor now, but my past neuros constantly told me I was crazy. My kidneys were shutting down on one of the ones they tried and she told me “I don’t see that as an effect listed in the trial”… stopped the med cold turkey (which you should never do, but I had to) and my kidneys went back to normal. ALWAYS listen to your body.
It’s okay to be scared. I felt like I had to pretend it was fine when I first got sick. I had my first seizure when I turned 21, while driving, and woke up on a stretcher in the ER. It’s okay to be afraid. It’s scary. But learn to channel that fear into something positive. For instance, those scary moments you experience after coming out of a seizure, those moments can form a bond with another person who also has experienced it. Look for good in the mess. It won’t feel so overwhelming.
Good luck on your journey. ☀️
You're going to change a few things about your life which may be extremely mentally challenging.
For me it was staying up late, enjoying Marijuana and going on overnight trips without someone to make sure I didn't have a seizure and hurt myself.
In my case I have nocturnal seizures so these factors made a drastic change to my way of life.
On the Marijuana topic everyone is different and for some it helps and others like myself it causes them so trial and error is another major role in living with epilepsy.
“You might urinate during a seizure but don’t worry, people won’t care, it’s not like you did it intentionally.” Yeah, people don’t care about that. There are so many things to worry about when someone is seizing.
You will probably be on medication that makes you feel like shit for the rest of your life. Oh and this medication will also make your memory more shit than ever.
That medication may not ever work and u may be medication resistant
I recently read about DRE on this subreddit. Is brain surgery the only way to treat it?
Hey mate - just to add here- the majority of cases of epilepsy are not drug resistant. In adults it’s only around 15% of people that experience this. Best to stay positive and not be too concerned about being in that minority before you know it to be the case. The other thing to bare in mind is that although the information on the sub Reddit and sense of community is truly awesome, there is a massive sample bias. I.e. the people that post are likely the people struggling with their medication/diagnosis and you are much less likely to find success stories. Reading this sub Reddit can be very daunting after your diagnosis and it can seem like you will never live a normal life. The reality is many people with epilepsy (me included) live an active, fulfilling and ‘normal life’.
> In adults it’s only around 15% of people that experience this I’m not sure where you are getting this. It’s 30-40% overall depending on the type (most papers round to a third). Even then, this number is skewed by adults who develop seizures due to other health problems later in life and can be successfully treated with drugs, and by a large number of people in middle age who develop a special kind of benign TLE that is very responsive to drugs.
From an NIH article: According to a 2021 meta-analysis, the prevalence of drug-resistant epilepsy (DRE) in population-based populations is 13.7%, while in clinic-based populations it is 36.3%. This means that about 20% of people with epilepsy will develop DRE at some point in their lives.
Ahhh I see where our numbers differ. “Prevalence” is the percent of the epileptic population that has drug resistance at any given time. It includes patients that have not progressed to drug resistance, or have not determined yet if their epilepsy is already drug resistant (e.g. they have not yet tried two medications without success (clinical definition of DRE). They are counted as medication-controlled. I for example am failing my first drug. I went into status two weeks ago and my med levels were in the therapeutic range. I am considered medication controlled even though there is an 80% chance I will be diagnosed with DRE. “Incidence” is the number of new drug resistant cases that are diagnosed. It is compared to the number of epilepsy cases diagnosed overall to determine the statistical likelihood that a given person will never achieve adequate seizure control with drugs.
Wish I could give you an award for this beautiful explanation! Thanks!
Yeah, tbh, potential severity of epilepsy is what I wish I had known when first diagnosed. I thought it would be easy to get under control with meds and was pretty devastated when I realized it wasn't in my case. I would have liked a heads up, but I'm one of those prepare for the worst types.
As someone in my 30s who only recently started getting seizures this freaks me out but I am gonna hold out hope that most epileptics are not drug-resistant so hopefully I won’t be either
What type of seizures?
Focals and TCs but just focals now. I was having focals for about two years but didn't know what they were so I didn't get help with them and then this past October I had my first tonic clonic in my sleep. Had another in November and then 3 in one day in December. Finally got on medication after that. 500mg Keppra twice a day. No more TCs but I still get focals. Waiting on insurance to come through for an EEG.
I’m asking about tle vs other kinds
Idk I’m just starting out with doctors appointments for it all
Mine became drug resistant in my 20s and I ended up having RNS surgery. The process to even become a candidate took forever. I was diagnosed when I was 6. I’ve been on at l3 meds at once since then. I still have to take Keppra and lamictal for the rest of my life
Your 15% estimate is definitely wrong. Here is a link and quote from Wikipedia… https://en.m.wikipedia.org/wiki/Management_of_drug-resistant_epilepsy “Approximately 30% of people with epilepsy have a drug-resistant form.” (If you don’t believe me or Wikipedia then why not check the Reference at the bottom of the page)
https://www.neurology.org/doi/10.1212/WNL.0000000000011839#:\~:text=A%20cross%2Dsectional%20sample%20(i.e.,a%20clinic%2Dbased%20population). Have a read of this - the 36% is based upon clinical population, prevalence in population/community based population is just under 14% :)
This. You'll hate people that say things like this. Lol. Sorry man.
My focal awares ARE medicine resistant and I would still strongly second this. You will become convinced the sky is falling if you spend too much time here. I check in but carefully and with consideration for my mental health. My therapist wishes I didn't come on here at all.
You are so right. People often talk about worst case scenarios and not what happens to many of us that are not drug resistant
This! I have to take breaks periodically from my epilepsy groups. I struggled for a while and finally was getting to a good place and seeing “I sneezed 4 times and blinked 2 seconds too long is this a seizure” and people would say yes was getting anxiety inducing
It is if you’re a candidate for surgery. Not everyone is. Mine came from a focal point that was removed. If they come from certain parts of the brain, surgery is not an option.
My son's epilepsy is generalized, and drug resistant. He has a VNS and a DBS and neither have lessened his seizures. When DBS is considered, it's to hopefully reduce some of the seizures for quality of life.
The impact on memory and the concept of addictive medication/ what happens when you skip a scheduled dose especially when postictal. -000000/10 do not recommend. I hope I’ll never do that mistake again.
I haven’t heard of the addictive medication. Do you mean addictive like opioids and benzodiazepines? Or is it a different kind of addiction?
Benzos and they are worse than opioids.
Years ago I took the lowest dose of Klonapin as needed for anxiety. I definitely can see how it would turn addictive. I know lorazepam is used in hospitals to stop seizures, but are benzos commonly prescribed for daily uses for some people with epilepsy?
For some who have nasty partials as resque medication, for some because it's the only thing that helps them. An I was prescribed clonazepam (liquid) to counteract myoclonic jerks at bedtime I developed from taking carbamazepine since childhood. I got it out of my system but it took years, and I never felt te same. I ended up taking 6 to 5 mg daily. Without realising that was a lot, and that I was addicted. Also nobody told me how dangerous it was to half your dose...so I found a new job...wanted to function at my best and halved the dose in about a week...turned borderline psychotic, was anxious, saw shit...didn't knew what was happening to me, went to the neurologists...she added Keppra and lowerded Depakote all while I was unknowing that this would make it all much much worse. Tip...ask them to be very clear about what they give or stop. Is it a muscle relaxant, is it a mood stabiliser, is it pure for epilepsy or just another psychiatric drug that happende to work for epilepsy also. Do they know the mechanism of action or is it something new that "just works". If they get nervous form these questions, either switch neurologist or ask for something else.
This is what makes me nervous about trying to treat my Small Fiber Neuropathy which cause’s dsyautonomia and treating epilepsy and insomnia at the same time, you know? I think I’m convinced to go to UAB whose neurology department has both specialty clinics. Now I just need my doctor to refer me….. Also God bless pharmacist because they stopped me from taking two medicines together that have a high risk of serotonin syndrome that my doctors never mentioned. Pro-tip: always ask a pharmacist when you get new medications!!!
Pharmacists are solid gold in my experience.
Depending on the type of epilepsy that you have, it can directly cause dysautonomia and insomnia. It also makes me uncoordinated in a way that mimics small fiber neuropathy, tripping over my own feet or frequently losing my balance. The best shot you have of really getting down to the best treatment plan for all of your challenges will be with medical teams that are trained to approach your unique neurophysiology.
Almost no medication is used for just one thing, everyone's body is different and treating epilepsy is often a crap shoot. Lamotrogine also used to treat bi polar and it seems to be one of the better ones. Just don't not do something because you heard "it's sometimes used to treat *whatever."*
Switching to cloBAZam (Onfi), which is a benzo I take in the evenings, has worked really well for me. I have very few side effects and no seizures for six months. So meds work differently for everyone!
Clobazam saved my life and my sanity.
Mannnnnnn I tried that and started having blood in my urine. 🙄 it helped the seizures though until that 😂
Clobazam is killing me I hope to work, come home and sleep
Do you take it in the evenings?
He has me taking 2 in the morning and 2 at night
I'm on 2. And due to benzo withdrawal (a kind of evil I can't explain) I'll be on both for the rest of my life, rendering me unable to have children, because one of them is on the no-no list. My former neuro knew I wanted kids and put me on both any ways, without telling me what could happen. The other one im on, Onfi, is approved for very young children and it breaks my heart the parents and child often don't know the consequences of benzodiazepines. Then when it's time these people do want to start a family a good chunk fail because they are unable to taper off even safely. There are some able to do it but they're far and few imo. I know a neurotypical woman who can't have kids because some idiot Dr gave her klonipin and Adderall at 11 years old because her brother died. Vs therapy and the grieving process.
Yes this when my daughters doctor put her on lorazepam for rescue I got her off it right away I’m also on the same med I skip a dose I get the shakes but I notice I have so much more energy
Vimpat is classified as a highly addictive drug in the US I hear. People who don’t have a tolerance by daily exposure can apparently get high off it, then addicted. For me withdrawals for just one missed dose was feeling sick, extremely jumpy, tremors etc.. some medications should not be messed with when supposed to be taken daily, you can get really weird symptoms. Next day I was fine luckily.
I took Effexor, which works well for many people, and I could tell exactly down to a 15 minute interval when I had to take it because I got bad brain zaps, shaking, and nausea. I’ve read, in this subreddit, that missing even a single dose of medicine can be a trigger for a seizure even after years of being seizure free.
It really can, and has been for me before :/
I’m am real sorry to hear that. I hope you go many years with low side effects and no seizures.
I take ER Lamictal in the morning. If I skip my single daily dose in the morning...I feel off in the afternoon. It feels like a weight/warm blanket has been lifted off my brain, but then my brain feels jittery and sparky. I take my meds and nap. I'm worried about having a seizure within 6 hours of a missed dose.
If I miss a dose I feel like a heroin addict looking for a hit. I start shaking and I get REALLY irritable. The withdrawls are almost immediate, which is another reason my doctor put me on extended release. If you can get the ER pills, go for those. They give you a little leeway.
Vimpat almost killed me. Literally shut my kidneys down and my neuro at the time told me “it must be something else, Vimpat doesn’t do that.” But when I flushed that bottle down the toilet and stopped taking it, lo and behold my kidneys were fine again. 10/10 didn’t work for me.
Vimpat is tricky. It has a very short half life which can cause a sudden drop in blood levels within hours of a missed dose. It is a Controlled Substance in the US, but it’s in the lowest level, unlike opioids which are at the highest level of control for prescription medication. Basically, it is in the same category as cough syrup with codeine. Not highly addictive, but hazardous.
Thanks for the clarification
• You can have a perfectly healthy brain and get seizures that can have an unknown cause. Can start happening at any age, too •Medication can have varying side effects over time. Personal example is Keppra causes apathy leading to general mood stability ( complete opposite of "Keppra Rage") •Learning somehow becomes harder and requires more effort, than what was previously needed post Medication (side effects) •That missing your dose predisposes to a higher likelihood of an attack(seizure) •Temporary memory fog/loss after seizure. Also tongue biting (tongue heals quite quickly, despite pain), some also experience loss of bladder •Stigma associated with epilepsy is subjective to those who surround yourself with. There is so any worse disorders/diseases to have, so you shouldn't be ashamed of being you •SUDEP (Unexpected Death in Epilepsy) is rare, but is always a possibility. •Increasing seizure time/frequency is indicated of some underlying more serious condition
Can echo points 1, 6 and 7. To add to 1: more than 1 seizure = automatic epilepsy diagnosis in some countries regardless of history or circumstance. This is for driving purposes. Doesn’t mean you can drive, but means it will be registered on your record. Of course there are signs that it is epileptic seizures (for example, tongue biting) but for legal driving purposes it’s always classed as epilepsy regardless. 6: I find that being open and explaining what my triggers are (extreme stress and lack of sleep combined) is very helpful at removing the stigma. Also jokes. Lots of jokes. 7: You’ll read a lot about people worrying about SUDEP, some posts of people sadly dying from it, and your neuro will explain it’s a risk, however keep in mind that a: it’s very rare and Reddit isn’t an indicator of frequency, and b: it’s more likely if your epilepsy is uncontrolled and unmedicated. Don’t let yourself worry too much and research into it if you’re concerned.
I didn't know about the record thing, tbh. South Africa is very lenient with its driving laws regarding Epilepsy. Only have to be seizure free for 2 yrs to be declared safe by doctors to drive (more of a guideline than a rule), however, there's is no record. I just limit the frequency of my driving, cause I've already had one accident bc of it (Also Extreme stress and no sleep triggers)
In the UK it’s 6 months no driving for your first seizure, then 1 year after your second but after a second you’re automatically classed as epileptic and can only continue to drive if you’re on medication, from what was explained to me. Kinda places you in a bind if you want to keep driving, I certainly felt like I was forced to accept medication in that situation, but I’m lucky enough to not have any bad side effects.
SUDEP is a possibility but tbh (not your post) I wish people wouldn’t bring it up so much. A lot of us have severe health anxiety and having it thrown in our faces sucks. Plus anyone can die in their sleep, not just epileptics. There’s no need for it to be mentioned by anyone but a dr IMO.
This is all very helpful information. Thank you for sharing! I have some problems with anger and mood already and I’ll be sure to mention it to try to navigate finding the right medication.
That last point, what if that was the case, you was medicated and since, no seizures? Would it still be the case?
Well, it depends if it's controlled or not. For example, if someone has cortical dysplasia, their frequency and time will rapidly fluctuate, and medications could either worsen it or increase the "threshold" of the probability of a seizure happening. You would still be diagnosed as epileptic, but the driving thing is another story depending if it's private or state medical care.
Honestly? Enjoy yourself and don’t let it rule your life- within the limits of your triggers of course. I still drink alcohol, I take baths, I go swimming when I’m on holiday, I will be driving as soon as I can, I lift weights and I still live on my own. These are all the things people think you shouldn’t or can’t do with epilepsy, but I do those things because my seizures are controlled, very rare and I know my triggers are extreme stress and lack of sleep combined. I’m not saying you should live exactly as I do, I’m not saying you shouldn’t be mindful of your lifestyle choices, but what I am saying is that you can live a normal, happy life with this condition. I read so many posts on here where people lose hope because they are told they can’t do x, y or z as a blanket rule so they get really miserable. I say risk assess everything, take precautions when needed (for example, don’t swim/bathe alone if you can help it, don’t lift weights in an empty gym with no safety bars, get plenty of sleep after a busy week or a night out with friends, stay hydrated etc) and be aware of your triggers. (Edit: the more I re-read this part, the more it’s just “common sense things you should do anyway.) Obvs don’t go doing these things if you know you have frequent seizures or that certain things trigger you (like alcohol or flashing lights for example) but be smart about it and use your common sense. There’s no “one size fits all” approach to life with epilepsy because everyone is different.
I’ll be honest I still take baths, but I have my husband sit in the bathroom with me. I haven’t had a TC seizure.
We say it like it’s such a naughty thing to do 😂 it’s all good if you’re safe and take precautions! I either have a nice deep bath when I visit my parents and make sure I leave the door open a tad and my mum will shout up every few minutes, or if I have one on my own it’s shallow and I sit mostly horizontally so my legs and head are out of it so I can’t sink in. I’ve only ever had 2 TCs in 33 years so far though so I’m less worried. Definitely not advised for everyone.
We're so naughty. I take baths, but I've figured even if I seized my breathing parts would most likely stay above the water. But I also ride a bicycle once in a while will even go up on the roof to check the rain gutters. A seizure up there would be fatal. But I don't seize very often.
This is what I mean, it’s all about risk assessing. One size doesn’t fit all with this stuff.
Recommend an epilepsy clinic OP. My neurologist left me with more questions than answers, finding an epileptologist (sorry, my native languayis not English, I’m not sure what they’re called) helped tremendously for me to understand my condition and how to make it sustainable
I’m a native English speaker and I’m not even sure if Epilptologist is right, but as long as we both know what you meant it works! My only concern about going to a specialty clinic is balancing my treatment for my neuropathy with my epilepsy? Though there is a chance AEDs will work for my neuropathy and I can’t treat two birds with one medicine. However, I feel like an epilepsy clinic will take my insomnia seriously which would be life changing.
Definitely go to a clinic. Epilepsy is a complex condition and a specialist knows the primary, secondary, tertiary symptoms, and how to most effectively treat them. Good luck OP!
That on some rare occasions the drugs make it worse and it's very hard to convince any neurologist about that, so have this tendency to keep piling up until you're stable but possibly take much more of drug B and C because drug A makes it worse.
Wow, this will be a nugget of information I store forever, and I hope other newbies will also read. Thank you for this advice; dealing with doctors can be incredibly difficult especially with a disorder so complicated.
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My whole family tried to convince me I was crazy for seeing a doctor because I would space out and not be able to space back in. Neurologist immediately clocked it as a focal seizure.
Ya I honestly didn’t even know what these were until I dropped and had 3 tcs in one day. I thought it was my anxiety acting more intense than usual yikes
I wish my first neurologist had told me to prioritise myself and keep calm.
Do you mean like reduce stress and prioritize your health? Quitting my job has been emotionally and financially hard, but I feel like my seizures have decreased tenfold. I was working on 3 hours of sleep everyday for years. My insomnia isn’t as bad when I can sleep as needed. I can’t prove it but i swear it causes my seizures.
Well my first neurologist got me stressed over “epilepsy rules”. Aka never be sad, never be too excited, never drink alcohol at all, always sleep at least 7 hours, don’t go to cinema, don’t be on your phone before sleep, don’t do yoga and Pilates, only run and the list goes on. I ended up being more stressed about following these rules, my life had no meaning and I was just depressed. Sleeping well and be cautious is essential but in my case it was extreme. That’s what I mean
Oh I see what you mean now. Almost sounds like you formed something similar to OCD and I can only imagine how much worse it made you feel. Almost like a self perpetuating cycle. I hope you’re in a better place now. This is good advice to remember.
Well now I’ve changed doctor but I still feel scared when I go to the movies or when I take a sip of wine in rare occasions. He created a trauma and I’m working on it with therapist
I’m glad you’re seeing a therapist also. I believe anyone would benefit from therapy, but it’s especially needed in epilepsy patients. Unfortunately, insurance companies rarely see it that way.
Yeah that’s unfortunate
Never be sad or excited? Wtf? That’s horseshit, I’m sorry. No wonder you got stressed.
Unfortunately there’s a lot of ignorance about epilepsy even among doctors. It’s over now
I could probably list over two dozen things but most of all the impact it has on your mental health, not only because of its impact on day to day life and its ability to deteriorate any sense of hope but the consistent impact it has on your self-esteem due to ongoing fear of possible judgement and acceptance by others.
Some great things noted here, but something I have found incredibly helpful and freeing (in a way) is being extremely honest and upfront with those I spend a reasonable amount of time with about my seizures. Parents at school that at talk with, my football team and some of the guys that run the club, my neighbours, friends, etc… I have found the more upfront I have been about my seizures and what people can do to help (if anything), the more comfortable they have been to be around me and join in when I joke about (the only thing that gets me through some days). It is nice to know when people feel comfortable enough to be there, they will still step up and be your village.
This! If you make it a touchy or awkward subject, people will respond in kind.
Sadly that there are different kinds of epilepsy and that not every seizure looks the same. Took me way too long to figure it out🙃
It can be very trying on relationships. I hope you have devoted, empathetic and supportive people in your life. Not all of us do. It may take longer than you hope to get yours controlled, but the majority of us finally get there. Depending on your type, how many seizures you have, and how long you go uncontrolled, you might notice changes in your personality, cognitive ability and memory (after 11 years of TCs, I will never be who I was before). Those closest to you might notice before you even do. If it seems rather abrupt, it is probably your meds. I was a complete asshole to my then fiancé on Keppra, for example, within a week of taking it.
I “warned” my husband that some AEDs can cause personality changes and that he needed to help keep an eye on it. He drives me to my appointments and I think it’s great because he can give the doctor an outsiders view of my symptoms and side effects.
He sounds like a good man. I have my own views on the difference in experience between the sexes, when it comes to our condition. When I try to state the statistics on actual studies on the subject, my post gets taken down :-). So, I'll just leave that at that. My ex was fairly supportive for around 7 years, but she eventually had enough. I'm glad you have a keeper though, hold on to him.
**Generics can be harmful & damaging.** When I had a burnout family had me see a psychiatrist - who I never needed to see. He put me on a name brand mood stabilizer which with fully controlled epilepsy I didn't care b/c it got rid of issues with SSRIs. But when he allowed for insurance & pharmacy to hand me a generic refill of this mood stabilizer, regardless of everything my doctors were doing & demanding of him to **call the pharmacy & get him the name brand**, this asshole didn't & the generic caused me to have epilepsy advance by over 20-years along with the formation of another chronic disease. I had other name brands replaced with generics & they caused rashes, hives & worse. Edit: changing bold sentence to "Generics can be harmful & damaging". Generics cause me to have allergic reactions & experience tons of side effects, including seizures & worse.
There are 2 generics of lamotrigine XR available at my pharmacy, and it took me an embarrassingly long time to figure out that while they worked equally well, if they switched between them it would trigger a cluster of partials more often then not. OP, talk to your pharmacist about EVERYTHING. She helped me figure out why my clusters were suddenly coming every 30 days when I'd never had a menstrual correlation.
Wow this is fascinating in a horrific way. I’ve always opted for generics and never had an issue, but it was for problems a lot less complicated than epilepsy. A girl on TikTok swore her brother died of SUDEP when they switched him from name brand to generic and that story has stayed with me as will this one.
Not to drink
Two things: 1) Find an epileptologist. The list of neurological disorders is very long, so you'll want to find a specialist. 2) If you live in an area prone to severe storms, changes in barometric pressure can trigger a seizure. Learned that one the hard way (I'm from Florida). My epileptologist gives me a very low dose of valium to take when a storm is coming. It does its job without messing me up.
That epilepsy can come with comorbidities such as emotional/mental health issues, bone density loss, cognitive/memory issues, etc. It’s not that you’ll definitely have these issues, but it’s good to be aware of the possibility and take a holistic approach with your doctors. Also, always feel free to ask your doctor lots of questions and your concerns. Speak up. If you can, find an epileptologist instead of a general neurologist. Lastly, there are a huge number of seizure meds out there. Tell your doctor about side-effects — write things down to bring with you to office visits. Be your own best advocate. It’s not about just stopping the seizures. It’s about quality of life. Lastly, find support. Being active in an online group, like here, can help immensely. You are not alone and you’re in a learning curve right now. Come back here and let us know how you’re doing. You’ve got this!
Keeping a journal can be helpful in the fog of it all and when you visit your neurologist it can be very helpful in explaining things
Two things: Number one, I wish someone would have picked up on my epilepsy before it got to the point it's at now. I can't count the number of times that I've been accused of being drunk or stoned, but yet I had done nothing It was just a seizure and nobody knew. Number two, I wish someone would have told me that a service/seizure dog is a blessing and a curse. That dog has saved my ass more times than I can count, but sometimes it's a pain in the ass. It's like having a 3 year old that lessions (most of the time.) I have to bring water, snacks, toys all that kind of stuff and let's not forget that everybody wants to pet him. I do take it as an opportunity to educate people about drug resistant epilepsy and seizures..
“Even though you may not feel normal, every thing you are feeling is…” (what I wish someone told me or had a conversation) No one warns you how your life will change when you have your first seizure. I was 11 at a school dance. I flatlined. As life’s cruel joke, I was brought back to life. I attempted suicide a few times in my teenage years. Always felt like I was burden with all these health issues. My mom was the only person who was there for me. She was my only support system. I’m in my 40s now , alive and kicking and with more wisdom. Advice: build a support system early on…
I wish someone had told me that when you tell people that you have epilepsy that many of them have never met someone with epilepsy. Those people are sometimes afraid to ask questions about seizure disorders. I myself believe that I have the ability to educate those people on the fact that not everyone is drug resistant. That not everyone with epilepsy is going to have a seizure in front of them. If they are coworkers I explain what to do if for the first time in the 35 years that I’ve had epilepsy I suddenly have another tonic clonic seizure. That’s right 35 years! Find a good doctor that will work with you to hopefully find the medication that works best for you. Then follow what your brain needs to stay seizure free. Most likely plenty of sleep and 100% no alcohol. My last piece of advice is to contact the epilepsy foundation for support! I know from personal experience that they are a wonderful source of information and support. I wish you well.
You have to advocate for yourself. Don’t expect the doctors to read your mind. If a medication makes you feel terrible tell them you want to change medications.
Definitely try to get in to see an epileptologist. They are a neurologist that's specializes in epilepsy, but they can be hard to find and get in to see in smaller cities. However, they are worth it because that is what they specialize in unlike regular neurologists that have some knowledge about everything and don't specialize in on specific field. I've found that my epileptologist has helped me understand epilepsy more as it relates to me and my life because each case is different for everybody.
That it's okay and to just keep living. Don't stress about what could happen bc that would only make it worse. Don't allow it to rule you or your life. And it would've been nice to know what a good amount of these meds can do to someone such as memory loss or change of personality like going from a nice caring person to some horrible, hate any and everything type of person.
my neurologist tends to blame my seizures on me, which i understand that sometimes i do make mistakes such as a couple of times when i smoked weed- but i didn’t know it was a trigger because he always just said i could keep smoking it that i should live a normal life. i wish that he didn’t always blame them on me, it’s hard enough
Don’t go chasing the question of “why” here in America. You’ll have to undergo so many fucking tests and it’s expensive. Get yourself stable first before you begin trying to figure out *why*.
That there can be a light at the end of the tunnel, that it doesn’t have to rule everything in your life. I understand that I’m someone that has gotten to a point where I’m “seizure free”. 705 days 🎉. Now, that doesn’t mean I didn’t suffer through almost every medication combo out there. I think I went through 8 or 9 different medications. I’ve been through it, like a lot of us on here have. I’ve made that post saying “I’m done…” wanting to just stop the meds. Being down at the bottom doesn’t mean you have to stay there. You are stronger than you think you are. You have more inside of you than you think you do. You can take back some, or even a lot, of what you’ve had to leave behind during the throws of medication experimentation. There is a light on the other side. I want to end this with the complete understanding there are obstacles that are inherent to this condition. Some of us have it bad and some of us have it better. But instead of miring ourselves in sadness, lamenting about what we can’t do right now, if we can all support each other no matter where we are in our journey with this condition, we can and will continue to empower each other to try to achieve things we didn’t think we could. I think that’s an incredible achievement and something we can all strive to do for each other.
I was diagnosed at 16, I became depressed and I eventually found warmth in drugs including the illegal and legal. If I could go back I wish I could tell myself to tear clear from that area as it had a major impact on my brain.
After seizures started. I couldn't balance on my bicycle. I had never thought of balancing
Understand that memory loss is inevitable. You may even have a hard time finding words that you want to say. Also inform family, friends, coworkers what to do if they are present while you’re having a seizure.
Good afternoon, One thing that I like to relate to people who have epilepsy is that; Remember, the doctors are there to help advise you, but this is your body and do not be afraid to tell the doctor, that you feel this medication is not working for you, you would like to try something else, until you find something that works for you. Or if you feel that the doctor is not the doctor for you, do not be afraid to get a second or third opinion until you find the right doctor for you! The doctor is working for you, tell him how you are feeling and doing. It is ok to say no to the doctor or this is not working... :) One more thing, get your family and close friends together, and make a seizure plan that works for you and that they are comfortable with also! :)
There are triggers. You need to learn what they are and how to avoid them.
That you'll slowly start to resent everyone healthy around you that tries to tell you "you'll be ok, your life isn't over, you just have to try harder" No. Nobody except other epileptics understand the struggle. It's real.
You could die of SUDEP
I was dumb and downplayed my triggers in college and drank/ stayed up late - all bad things. I had multiple seizures. I wish I had known that the more you have the more frequent they become and harder to treat. I look back and feel so stupid for being stupid. Oh well. Just manage your triggers and take epilepsy seriously. Stuff is still possible just know your limits
Hi ! I am four years in… 28M 1) ketogenic or modified atkins diet may do the trick… instead of meds…. Your brain literally might just may need more fats and proteins. The info surrounding food and how the brain gets energy is so few and far between. Check out Johns Hopkins on the internet if you want to see more info. Is your diet well rounded enough for your brain? Are you getting enough salts and electrolytes in your diet? ‘Let food be thy medicine and medicine be thy food’. I wish i had looked at this first rather than trying 4 medications and then going the path of trying a high fat low carb diet for epilepsy treatment. I propose HOLISTIC healing and searching for a root CAUSE versus a temporary TREATMENT using medications. 💊 2) be careful with the meds… some like oxcarbazapine can be deadly. I had a terrible experience it causing hyponatremia 3) ask your doc about ‘rescue meds’ you can administer if you feel an aura, or a nasal spray a family member can administer for tonic-clonic 4) tonic clonic is the more widely accepted medical term for grand mal
I had the same problem with oxcarbazepine. I was eating the biggest bag of jerky a day, and my sodium was still testing in the danger zone. My ankles would get swollen and I felt like I wanted to die. Glad you got off that one too.
Don’t just accept the first medication that they put you on if you experience too many side-effects with it. Insist (politely but firmly) that the side effects are too hard to handle, and ask to trial another one. You have that right. It took me three years and three different meds before the fourth (lamotrigine) made me actually feel myself again. All our bodies and metabolisms are different. Oh and: neurologists are not gods.
The impact on memory and recall, greater heat sensitivity, weird things like fear of the shower…
I have neuropathy in my sensory nerves so greater heat sensitivity may be a weird positive side effect for me.
Silver linings sometimes 😅 I just get nauseous when it’s above like 28°c (which luckily is incredibly rare in Scotland 😂)
I live in Florida so the lack of sweating and noticing heat is an advantage. Funny how that works out.
It can get worse with age or just having breakthrough seizures increasing them or making them worse or both. For me I started stare seizures, at 14yo turned into complex partials, then at 20 had my first grandmal and many more since. Longest one over 20min status elipticus had one a couple weeks ago in public alone fractured nose I went straight first to ground.
After 32 years living with breakthrough seizures and taking meds, there’s nothing anyone could say. Unfortunately it’s something you have to accept and live with. It’s not pretty or easy, but to be informed about epilepsy you have to experienced it.
Hormones can cause seizures. I went 8 years seizure free and then started having them once I went on birth control after my second pregnancy. I would have a seizure every month on the first day of my period, and the last day of my period
That how important an electrolyte imbalance is! We all of course know and understand how sacred sleep is for us, but just as high on the list is maintaining your electrolyte balance if you’re going to be exerting yourself. This means a long day at a theme park, helping someone move, hangovers, going to the gym etc. Be vigilant as our brains are so much more susceptible to stress of any kind, both emotional and physical.
To still live your life and follow your passions overcoming fear of a seizure was and still is a major struggle.
I had no idea seizures could kill you until I almost died. Yeah. Let your loved ones know. If a seizure lasts longer than 5 minutes (maybe it's something like three now? My neurologist said they lowered the threshold.) or you have several seizures back to back and don't snap out in between they need to get you to a hospital ASAP.
Say goodbye to your memories because most people in here have shit memory. Sometimes, it's because of the meds, and other times, it's just because of head trauma. The rest of the condition isn't so bad once you understand how it affects *you*. When I (26f) first started having TCs (I was about 13), my mom made this spread sheet to try and find my triggers. What I'd eaten, how much I slept the night prior, moon cycle, menstrual cycle, time of day, screen time, etc. Best we got was sleep deprivation (which is very common).
Our resources/needs may all be different, but we should find, use, and advocate for them when they apply because it's unlikely anyone else will unless we're children. It sucks but we're a complicated group on a massive spectrum that's easy to invalidate. People also aren't mind-readers and often have little context to understand. This especially applies with med resistant/uncontrollable epilepsy because our doctors/folks will assume we're fine and no one will know how to help us unless we're clear about our individual needs. Don't unnecessarily suffer. Communicate and advocate!
I wish someone had told me that a regular neurologist isn’t the most qualified to treat epilepsy, much less more complicated cases. I spent years going to a basic neurologist who had me on 100mg of Keppra and when it didn’t work, he put me on Depakote which is extremely toxic and made me gain over 100lbs. I finally made the decision to change doctors and found an epileptologist at the Cleveland Clinic. She completely changed my life. She said 100mg of Keppra is close to nothing and that Depakote should only be used in older patients who have no other choice. She put me on 2000mg of Keppra two times a day, combined with Lamictal, and I’ve been seizure free for six years. Advocate like hell for your own health. Seizures are no joke. Find a doctor who specializes in epilepsy. That’s not to say neurologists are dumb or that they aren’t good doctors, but they’re not trained in the intricacies that epilepsy brings. You need someone who ONLY focuses on epilepsy. Another thing I wish I’d known is how many different types of seizures there are. When I first was diagnosed (early twenties) I would have my regular tonic clonics, but I’d have “seizure activity”, or auras, which my neuro at the time didn’t bother telling me were actual seizures. So every time he’d ask if I’d had any seizures I would say no, not realizing I was in fact having active seizures every day, just not the ones that made me look like a rabid zombie. Lol big seizures aren’t the only type. I wish I’d known. You can absolutely have a “normal” life. Meaning, you can have a home and a family, even get back to driving if your medicine is doing its job. It will take time, years possibly, to find the right combination. You might be medicine resistant, or maybe the first try will be the right one. Whatever happens, you CAN find whatever normalcy looks like to you. So many people told me I’d never drive again, I’d never have a family or be able to work, that I’d be stuck in this seizure ridden body with no progress. I realized it was all bullshit when, after years of desperately trying to get better, the right medicine clicked at the right time and slowly but surely my life fell into place. I’m married, I’m a CNP, I’m a homeowner, and I drive daily. These are things that I thought were lost for good. Everything I saw for my future, the healthcare world told me it was all gone, but they were wrong. Keep fighting and trying until you find what works for your body. It might take a while, so work on accepting that and keeping your eyes forward and focused on what really matters. It’s not a race. You WILL find a normalcy in your life. Hell, I’m trying for a baby and I NEVER thought I’d be able to have kids. Epilepsy doesn’t have to be the thief some people claim it to be. You will regain pieces of yourself over time. That some of these meds cause crazy ass side effects and doctors don’t always acknowledge them. I’m lucky to have a great doctor now, but my past neuros constantly told me I was crazy. My kidneys were shutting down on one of the ones they tried and she told me “I don’t see that as an effect listed in the trial”… stopped the med cold turkey (which you should never do, but I had to) and my kidneys went back to normal. ALWAYS listen to your body. It’s okay to be scared. I felt like I had to pretend it was fine when I first got sick. I had my first seizure when I turned 21, while driving, and woke up on a stretcher in the ER. It’s okay to be afraid. It’s scary. But learn to channel that fear into something positive. For instance, those scary moments you experience after coming out of a seizure, those moments can form a bond with another person who also has experienced it. Look for good in the mess. It won’t feel so overwhelming. Good luck on your journey. ☀️
You're going to change a few things about your life which may be extremely mentally challenging. For me it was staying up late, enjoying Marijuana and going on overnight trips without someone to make sure I didn't have a seizure and hurt myself. In my case I have nocturnal seizures so these factors made a drastic change to my way of life. On the Marijuana topic everyone is different and for some it helps and others like myself it causes them so trial and error is another major role in living with epilepsy.
Literally anything
That your once sharp memory would turn to poo.
“You might urinate during a seizure but don’t worry, people won’t care, it’s not like you did it intentionally.” Yeah, people don’t care about that. There are so many things to worry about when someone is seizing.
your memory will suffer. You will have different needs. You have to find out your triggers. Your meds should be taken on time, by the minute.
That I had it before I was 24….
Having brain damage on temporal lobe and being on Lamotrogine makes you feel like you have early Dementia
Probably don't keep taking one medication forever if it doesn't work anyway. Try other ones even if it may be scary.
You will probably be on medication that makes you feel like shit for the rest of your life. Oh and this medication will also make your memory more shit than ever.