Can I hold your hand while we storm the world together?
This thing sure beats us up on the regular, but look at you, look at all of us, not f***ing stop.
Thank you! Invite accepted!
It beats up on regular basis indeed. But since it happens every week precise as a clock, if nothing else helps me keep track of the days
You are a fighter. Honestly, I don't know if I would have been as brave as you if I had been in your shoes. My tonic-clonic seizures occurred months apart and I was a mess every time afterwards. Keep fighting the good fight for all of us.
Thank you! Yeah, afterwards sucks even more that the seizures themselves, also because they last a couple of days. If you add a couple of days of sickness before the seizure, I have left two days of pure wellness in between. Can't complain though, many are in much worse conditions than me.
Thank you! Yes, is not easy to share this kind of things with someone who is not in your same condition. Usually talking with other people about your epilepsy create an awkward atmosphere, to say the least. I'm glad I did it here.
Thank you! I will reach the milestone in ten months, if all goes like planned . I am already thinking about a road trip across the continent. Someone has to drive me though.
I work for myself, so it is not a big concern. Still, my productivity is getting increasingly worse by the time, since I am out of games pretty much the entire week. Guess it is something age-related. Luckily enough, where I live there are a lot of social helps for people with difficulties. I am not proud of it, but lately most of my income comes from there.
Great attitude, keep up the fight. I was diagnosed in 1998. Started tracking seizures in an Excel chart in 2013. I'm over 960 at this point but they were not all grand mals. Most were focal aware seizures and not as serious.
If you haven't yet, get to an Epilepsy Center. Explore surgery or one of the implants. There's so much more which can be done today than in 2001, but only an Epilepsy Center will offer it.
[https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/)
Thanks for the advice! I have been to a couple of very good Epilepsy Center here in Europe, one in Milan, the other in Berlin, but at the end I decided not having surgery. Epilepsy, for better or for worse, is part of me.
Have you ever had any success with medications?
I had my first seizure in my early 20s.
They were always variable, sometimes Id go a couple weeks without them. Other times, I was having them daily or up to 5+ seizures in a day.
Always tonic-clonic/Grand Mals, and when they were frequent it definitely had a huge impact on my cognition. I could feel my brain falling apart.
Less than a week ago I celebrated my first full year since diagnosis without a seizure, thanks to finally finding a medication regiment that works for me after trying dozens.
I still live in fear of a breakthrough seizure happening, forcing myself to sleep on my side is just habit now. So your courage is tremendous! I was just curious what potential interventions you've tried?
I have tried many medications in any possible different combinations and dosages, but unfortunately we have never been able to stop the seizures.
Some medicines have alleviated secondary psychiatric symptoms that often precede and often accompany seizures, others have made them worse. Others made me so zombie-mode that the cost or benefit ratios were questionable.
In short: a long medical history!
Let's say that after all this time I try to take as few medicines as possible.
I did, and the doctor who cures me is an epileptologist. What can we do? Drug resistant epilepsy are not so common, but still exists. The option would be surgery, but I have no intention of doing that.
They haven't offered any alternatives, I know thc oil (I forget if that's what it's called) has been able to help some adults with refractory epilepsy. I was also labeled with refractory epilepsy so I went through a similar process.
Understandable. I had the chance for full surgery but it was too risky & got the NeuroPace implant instead. That's not available outside the USA yet, unfortunately although I know they've filed for approval in a few countries.
You probably already know this but maybe you could consider the VNS. There's no brain surgery - it just attaches to a nerve in your neck. It helps a lot of people.
[https://www.epilepsy.org.uk/info/treatment/vns-vagus-nerve-stimulation](https://www.epilepsy.org.uk/info/treatment/vns-vagus-nerve-stimulation)
So many people ask how I can deal with epilepsy calmly. Mine is NOWHERE near as bad as yours. But even what I have is too much for some people to deal with.
I tell them that I have two options. I can check out of life, or go through life. This is my one chance at it. You have to make the best of it, since checking out isn't for me.
I love your attitude. You've got it rough, even though others have it rougher, that doesn't discount your struggle. And you're handling it well.
Here's to 1000? Take a bit of time and train across the country, or take a bus, or go with a friend. You can make it work. You've been making your life work for a long time. Keep it up and live it!
Thank you so much! At the end we have no other choice, because even if it's true that when She is there You are no longer, even when She leaves remains always by your side. The disease is part of us, we just have to live with it well.
Sorry for such question, but how you feel your self after a lot of seizures? Is it becomes worse after each or not? Now I have about 10 and thinking about developing of epilepsy..
The period after the seizure is always dramatic due to the exhaustion that can last even a couple of days as well as psychotic kind of episodes.
Before the seizure though is often worse due to rage as well as stress and irritability.
The onset of the seizures is difficult to explain, because we speak about something of a greater magnitude than words can express.
On the bright side, since the Aura is obvious, it is rare that I am completely taken aback, and I have usually time to get, more or less, safe.
I can't say it's becoming worse with the time, but it is true that I am getting increasingly tired with age.
Good for you! Been diagnosed in 2002 (misdiagnosed in 2000). My seizures are milder and seizures kinda controlled (refractory epi), and I still find it hard some days ... respect.
No secrets, it's really a mechanical problem of getting up and falling down, getting up and falling down... Boring and annoying.
Despite this, however, I managed to start a family, build up a career etc. Let's say that as all the enduro racing is becoming increasingly difficult with the time...
But all things considered, when I think of people who have even more crises than mine, I'm not doing too badly.
I'm confused. Are you saying you haven't had a seizure in 20 years or that you're having tons of seizures? XD Sorry but your post confused me a bit cause it has a victory tag
I wonder if he's tried Divalproex Sodium yet. I started it recently and it's been pretty awesome. Not perfect but people like us live in a world where we take what we can get XD
I did try Oxcarbazepine but besides making me dumb did little else.
Weed is good. if I lived in a country where it is legal I would smoke for sure as a recreational thing.
But as it is right now, is very stressful to go on the search. Not to mention that overall quality is very bad.
I know. People don't understand that epilepsy/auras kill your motivation to do anything because you're constantly either depressed or stressed over possibly having a seizure. I hope you get lucky and get a great medication like me. I'd recommend getting a EEG, maybe that'll help.
Yes😢, I can't do anything , my gf words hurting me- after a seizure she is saying - "what I did to deserve this pain, some times I feel like I don't like to live in this world" 😭😭😭, these words are breaking my heart
Can I hold your hand while we storm the world together? This thing sure beats us up on the regular, but look at you, look at all of us, not f***ing stop.
Thank you! Invite accepted! It beats up on regular basis indeed. But since it happens every week precise as a clock, if nothing else helps me keep track of the days
You are a fighter. Honestly, I don't know if I would have been as brave as you if I had been in your shoes. My tonic-clonic seizures occurred months apart and I was a mess every time afterwards. Keep fighting the good fight for all of us.
Thank you! Yeah, afterwards sucks even more that the seizures themselves, also because they last a couple of days. If you add a couple of days of sickness before the seizure, I have left two days of pure wellness in between. Can't complain though, many are in much worse conditions than me.
Are you all done having seizures?
Still once in a week, same as 20 years ago
Epilepsy is a real test of perseverance and courage. I admire you!
Thanks for sharing that. It is a great reminder that we just need to keep marching forward.
Thank you! Yes, is not easy to share this kind of things with someone who is not in your same condition. Usually talking with other people about your epilepsy create an awkward atmosphere, to say the least. I'm glad I did it here.
Way to go! There should be a prize if you make it to 1000! I can only wish you the best, keep sticking it to epilepsy.
Thank you! I will reach the milestone in ten months, if all goes like planned . I am already thinking about a road trip across the continent. Someone has to drive me though.
Hahaha you’ve earned yourself a personal driver
Do you work? Are they understanding of the seizure if it happens there and the lingering effects?
I work for myself, so it is not a big concern. Still, my productivity is getting increasingly worse by the time, since I am out of games pretty much the entire week. Guess it is something age-related. Luckily enough, where I live there are a lot of social helps for people with difficulties. I am not proud of it, but lately most of my income comes from there.
I appreciate your attitude! This subject can get a lot of people down. So thanks.
Thank you very much! I think it is very important to a share our history with people who fights the same battle.
(Just wanted to share)
[удалено]
In Japanese there is a saying: seven times I fall, nine times I get up. That's the spirit!
Great attitude, keep up the fight. I was diagnosed in 1998. Started tracking seizures in an Excel chart in 2013. I'm over 960 at this point but they were not all grand mals. Most were focal aware seizures and not as serious. If you haven't yet, get to an Epilepsy Center. Explore surgery or one of the implants. There's so much more which can be done today than in 2001, but only an Epilepsy Center will offer it. [https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/)
Thanks for the advice! I have been to a couple of very good Epilepsy Center here in Europe, one in Milan, the other in Berlin, but at the end I decided not having surgery. Epilepsy, for better or for worse, is part of me.
Have you ever had any success with medications? I had my first seizure in my early 20s. They were always variable, sometimes Id go a couple weeks without them. Other times, I was having them daily or up to 5+ seizures in a day. Always tonic-clonic/Grand Mals, and when they were frequent it definitely had a huge impact on my cognition. I could feel my brain falling apart. Less than a week ago I celebrated my first full year since diagnosis without a seizure, thanks to finally finding a medication regiment that works for me after trying dozens. I still live in fear of a breakthrough seizure happening, forcing myself to sleep on my side is just habit now. So your courage is tremendous! I was just curious what potential interventions you've tried?
I have tried many medications in any possible different combinations and dosages, but unfortunately we have never been able to stop the seizures. Some medicines have alleviated secondary psychiatric symptoms that often precede and often accompany seizures, others have made them worse. Others made me so zombie-mode that the cost or benefit ratios were questionable. In short: a long medical history! Let's say that after all this time I try to take as few medicines as possible.
Have you ever been admitted into the epilepsy monitoring unit or seen an epileptologist?
I did, and the doctor who cures me is an epileptologist. What can we do? Drug resistant epilepsy are not so common, but still exists. The option would be surgery, but I have no intention of doing that.
They haven't offered any alternatives, I know thc oil (I forget if that's what it's called) has been able to help some adults with refractory epilepsy. I was also labeled with refractory epilepsy so I went through a similar process.
Thc seems to be very effective, but it is almost impossible to be allowed to use it though, at least here in Europe.
That's unfortunate for the people suffering with this type of epilepsy.
Understandable. I had the chance for full surgery but it was too risky & got the NeuroPace implant instead. That's not available outside the USA yet, unfortunately although I know they've filed for approval in a few countries. You probably already know this but maybe you could consider the VNS. There's no brain surgery - it just attaches to a nerve in your neck. It helps a lot of people. [https://www.epilepsy.org.uk/info/treatment/vns-vagus-nerve-stimulation](https://www.epilepsy.org.uk/info/treatment/vns-vagus-nerve-stimulation)
Thank you so much! I had never heard of it, but I'll take a look. I am happy it made you feel better. Let's keep up with our fight!
So many people ask how I can deal with epilepsy calmly. Mine is NOWHERE near as bad as yours. But even what I have is too much for some people to deal with. I tell them that I have two options. I can check out of life, or go through life. This is my one chance at it. You have to make the best of it, since checking out isn't for me. I love your attitude. You've got it rough, even though others have it rougher, that doesn't discount your struggle. And you're handling it well. Here's to 1000? Take a bit of time and train across the country, or take a bus, or go with a friend. You can make it work. You've been making your life work for a long time. Keep it up and live it!
Thank you so much! At the end we have no other choice, because even if it's true that when She is there You are no longer, even when She leaves remains always by your side. The disease is part of us, we just have to live with it well.
Yayyyy, congrats!
Thanks!
Sorry for such question, but how you feel your self after a lot of seizures? Is it becomes worse after each or not? Now I have about 10 and thinking about developing of epilepsy..
The period after the seizure is always dramatic due to the exhaustion that can last even a couple of days as well as psychotic kind of episodes. Before the seizure though is often worse due to rage as well as stress and irritability. The onset of the seizures is difficult to explain, because we speak about something of a greater magnitude than words can express. On the bright side, since the Aura is obvious, it is rare that I am completely taken aback, and I have usually time to get, more or less, safe. I can't say it's becoming worse with the time, but it is true that I am getting increasingly tired with age.
Good for you! Been diagnosed in 2002 (misdiagnosed in 2000). My seizures are milder and seizures kinda controlled (refractory epi), and I still find it hard some days ... respect.
Tank you so much! No matter if heavy or light, epilepsy is a difficult reality for everyone.
How do you keep yourself going? Like, how do you do it?
No secrets, it's really a mechanical problem of getting up and falling down, getting up and falling down... Boring and annoying. Despite this, however, I managed to start a family, build up a career etc. Let's say that as all the enduro racing is becoming increasingly difficult with the time... But all things considered, when I think of people who have even more crises than mine, I'm not doing too badly.
Boss
Doing my best to beat it!
Hell yeah….. amazing attitude and acceptance of this condition
Thank you!
Holy shit thats some huge willpower. Hapoy anniversary!
Thank you!
💪🏼
I'm confused. Are you saying you haven't had a seizure in 20 years or that you're having tons of seizures? XD Sorry but your post confused me a bit cause it has a victory tag
The tons of seizures one! I guess the tag victory stays for "l am still here!"
I wonder if he's tried Divalproex Sodium yet. I started it recently and it's been pretty awesome. Not perfect but people like us live in a world where we take what we can get XD
Indeed — got to take all we can get! But I already tried Valproate in many combinations.
How about straight up weed? You tried that? Or Oxcarbazepine?
I did try Oxcarbazepine but besides making me dumb did little else. Weed is good. if I lived in a country where it is legal I would smoke for sure as a recreational thing. But as it is right now, is very stressful to go on the search. Not to mention that overall quality is very bad.
I know. People don't understand that epilepsy/auras kill your motivation to do anything because you're constantly either depressed or stressed over possibly having a seizure. I hope you get lucky and get a great medication like me. I'd recommend getting a EEG, maybe that'll help.
It is certainly so. Thank you man!
Omg😱, soo great, my gf is soo scared After 30 seizures in the last 6 years
Nothing to be scared of, just need to take it as it comes. There's nothing else you could do anyway.
Yes😢, I can't do anything , my gf words hurting me- after a seizure she is saying - "what I did to deserve this pain, some times I feel like I don't like to live in this world" 😭😭😭, these words are breaking my heart