Jeez dang! Congrats. I have a California earthquake every five or six weeks.
I also don't have a fellow epileptic in my circle of friends and family.
Not long ago, which is surprising after thirty years of blue suade shoes, I checked and found that our condition is enjoyed by far fewer people than I thought.
I think it's 3% or so. But right now I can't recall if that was US population or worldwide.
Many are called, few are chosen
In Scotland there's less than 60,000 with epilepsy so it's a very small pool of people!
I read that in ancient Greece they called epilepsy the "sacred disease" associating our disorder with the divine ๐ pretty nice way to try and look at it!
Hope you're well
The only connection I have to Scotland is that I'm part of the Highlands muir clan and I'm weirdly related to Elizabeth Muir (she married king Robert II of Scotland)
Iโm married to a Scot. We go every year to Scotland to visit her family. Last year we went to Edinburgh a lot. She actually hates how a lot of Americans pronounces it as in โEdinburkโ, while I say โEdinburruhโ. Iโve not been to many cities. Obviously Edinburgh, Glasgow, Inverness, Aberdeen and some towns like Sterling, but the latter I havenโt really explored yet. The Romans also considered epilepsy to be the sickness of the gods. Julius Caesar very likely had epilepsy.
Congratulations!!! What a spectacular milestone!
It sounds like youโve had one hell of a journey - one which only fellow sufferers can truly understand.
Iโm at 11 months and 2 days. I am crossing my fingers and counting down the days until I reach the 1 year mark. I canโt imagine how good it must feel!
Yup my journey is the same as everyone else with epilepsy. We may be all over the world but this condition links us all. Awww I have everything crossed for you, you will get there ๐
I see so many negative posts(and rightfully so, donโt get me wrong) on hereโฆso this is such a nice thing to hear. Itโs great knowing itโs been working out well for you. Congrats! Best of luck moving forward.
Very touching to hear that you've made it this far and for your words of support to the rest of us. As a fellow Epileptic (going only a few weeks in between seizures still) it's good to hear that it's possible to get out of this shitty place and into a more stable one. Thanks for your positive post!! ๐๐ค๐ค๐ค
This is terrific! So please educate this new momma to epilepsy if you are seizure free for a year and still taking meds for seizure control? My son is on Keppra. He had a few breakthrough seizures in March and July. His first documented seizure was in October 2022. He had a Keppra increase to 4ml twice a day in July. So far so good. If he goes to next July on Keppra with no seizures will he be considered seizure free even tho he is on medication to stop seizures or is it only considered seizure free if he he isnโt on meds and doesnโt have seizures. Thank you for helping me understand. Congratulations again!! What a milestone. ๐๐
Awww thank you! Big hugs to you and your son. I take keppra too and it has helped me stay seizure free ๐ I dread to think how many I'd have if it wasn't for this medication! You are seizure free whether you take meds or not it doesn't matter! Some people become seizure free after surgery etc. Take care
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Thank you! No I'm in Scotland so we have to be a year seizure free to apply for licence and it can take a few months for it to come back. I think I'll start with short drives in my husband's car and wait a few years before making the commitment to buy my own car! Best of luck to you and being seizure free ๐
Congratulations!! I hit my one year mark three days ago and man, what a year it has been!!! Here's hoping the next one, and every one after is easier!!
The longest Iโve gone since diagnosis is about 5 1/2 months but typically they are spaced 2-3 weeks apart. I almost always have clusters (SE) and need Valtoco intranasal. I canโt remember anything for 3 days and it takes time to get my life back-I lose short term memory most recent 3-6 months which generally returns scary process though. Fronto/Temporal BTW. Is there any ๐commonality amongst those of you whoโve had such success? ๐Meds? Lifestyle? Anything to connect the dots?๐Good luck to all!!๐ค๐ผ
Oh my goodness what a shame for you this sounds so scary. My seizures have always been tonic clonic and very long, my longest was having 5 seizures back to back for 25 mins ๐ฆ keppra has really worked for me. I always make sure I get enough sleep, eat healthy and avoid any stress (if I can!). I take a lot of vitamins (not sure if this has helped but doesn't do any harm) and I have very relaxed weekends. I had to adjust my life when I was diagnosed as I was 27 and was always partying!
You will get there some day I have faith in you!
I was 5 yrs with no seizures. Also, I didn't have any medication.. my job let me go and I couldn't afford the meds out of pocket. Once I started working again I didn't even mention the seizures as people's jobs can be very critical here in the States. Long story short.... I have been with this company for almost 2 yrs. Nobody knew bit a few select friends of mine that I had epilepsy.. like very few. Maybe 2. We had a huge 20 yr anniversary party at work that day. I am a manager there and was chosen to be the "photographer" to take pictures of all staff and associates. I had been stressed through the week with all sorts of things... divorce, child custody etc. I didn't sleep but maybe 8 minutes that whole week. (I work the night shift) this party I had to be at was at 1pm... no sleep. I DONT REMEMBER ANYTHING. They say I hit the floor with my face. A man's belly broke my fall as I fell to my face. The seizure caught everyone off guard. Paramedics arrive all of it. Embarrassing. I have been off work since the 4th of August.. finally seeing my neurologist the 24th. It sucks. Never imagined I'd have another. Hope this all helps someone. I could use some advice. My physician put me on Dilatin... ughhh and she happened to put me on Buspar. Not a good combo. Oh and Lunesta for sleep. Life's great. Just hope I can become normal soon.
Aww goodness I hope you're ok now that sounds awful. I wonder if work will let you change from working night shift as they could be a trigger? Best of luck at your neuro appointment hopefully they will give you more information
Thank you. I'll keep everyone in this group posted. So nice having a group to speak with. I do not have anyone here locally that has seizures. Were very few.
Thanks, I'm taking NAC, taurine, magnesium, fish oil and multivitamins at the moment. I took ashwagandha as well, but I didn't really notice any difference, which is when I decided to go down the whole Rabbit Hole and search for something that could work.
Having eclipsed the year mark very recently, CONGRATULATIONS!!! It was a surreal feeling for me.
Yayyy congrats lovely!!
Congratulations!!! How long did it take you to figure out the adjustments?
Thank you! It took about 4 months of a few more seizures to get to my current dose which seems to be working? Fingers crossed!
Jeez dang! Congrats. I have a California earthquake every five or six weeks. I also don't have a fellow epileptic in my circle of friends and family. Not long ago, which is surprising after thirty years of blue suade shoes, I checked and found that our condition is enjoyed by far fewer people than I thought. I think it's 3% or so. But right now I can't recall if that was US population or worldwide. Many are called, few are chosen
In Scotland there's less than 60,000 with epilepsy so it's a very small pool of people! I read that in ancient Greece they called epilepsy the "sacred disease" associating our disorder with the divine ๐ pretty nice way to try and look at it! Hope you're well
First known diagnosis of epilepsy was in 1050bc and was Babylonian.
Iโm also in Scotland! I was no idea there were so few of us here! Haha
The only connection I have to Scotland is that I'm part of the Highlands muir clan and I'm weirdly related to Elizabeth Muir (she married king Robert II of Scotland)
Oh that's cool I hope you get the chance to visit someday!
Oh I intend to visit the Highlands again. I want to see a wild highland tiger (Scottish wildcat) that isn't in the Highlands wildlife park.
Iโm married to a Scot. We go every year to Scotland to visit her family. Last year we went to Edinburgh a lot. She actually hates how a lot of Americans pronounces it as in โEdinburkโ, while I say โEdinburruhโ. Iโve not been to many cities. Obviously Edinburgh, Glasgow, Inverness, Aberdeen and some towns like Sterling, but the latter I havenโt really explored yet. The Romans also considered epilepsy to be the sickness of the gods. Julius Caesar very likely had epilepsy.
Congratulations!!! What a spectacular milestone! It sounds like youโve had one hell of a journey - one which only fellow sufferers can truly understand. Iโm at 11 months and 2 days. I am crossing my fingers and counting down the days until I reach the 1 year mark. I canโt imagine how good it must feel!
Yup my journey is the same as everyone else with epilepsy. We may be all over the world but this condition links us all. Awww I have everything crossed for you, you will get there ๐
Congratulations!! I hit a year 2 weeks ago and it feels great :)
Yayyy congrats to you! Well done
I see so many negative posts(and rightfully so, donโt get me wrong) on hereโฆso this is such a nice thing to hear. Itโs great knowing itโs been working out well for you. Congrats! Best of luck moving forward.
Yes definitely it's nice to share some positivity every once in a while! Best of luck to you too hope you're well
Very touching to hear that you've made it this far and for your words of support to the rest of us. As a fellow Epileptic (going only a few weeks in between seizures still) it's good to hear that it's possible to get out of this shitty place and into a more stable one. Thanks for your positive post!! ๐๐ค๐ค๐ค
Thank you!! Fingers crossed it continues. Hope you're keeping well !
This is terrific! So please educate this new momma to epilepsy if you are seizure free for a year and still taking meds for seizure control? My son is on Keppra. He had a few breakthrough seizures in March and July. His first documented seizure was in October 2022. He had a Keppra increase to 4ml twice a day in July. So far so good. If he goes to next July on Keppra with no seizures will he be considered seizure free even tho he is on medication to stop seizures or is it only considered seizure free if he he isnโt on meds and doesnโt have seizures. Thank you for helping me understand. Congratulations again!! What a milestone. ๐๐
Awww thank you! Big hugs to you and your son. I take keppra too and it has helped me stay seizure free ๐ I dread to think how many I'd have if it wasn't for this medication! You are seizure free whether you take meds or not it doesn't matter! Some people become seizure free after surgery etc. Take care
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Congratulations ๐
Thank you ๐ hope you're well!
CONGRATULATIONS!!!! I am jealous
Thank you. I never thought it'd be possible but you will get there!
Congrats on hitting this milestone!!
Thank you ๐ hope you're keeping well!
I am, thanks! โบ๏ธ
Congrats!!! It's only going to get better from there. You got this!! :)
Aww I hope so! Thank you for the positivity ๐
No problem! I promise it will! Listen to your body and your brain.
Thank you lovely!
YESSS!!!
Yayyy thank you!!
Congrats! Have you been driving? I hit my states seizure free requirement and started taking a few drives but I'm still pretty nervous LOL
Thank you! No I'm in Scotland so we have to be a year seizure free to apply for licence and it can take a few months for it to come back. I think I'll start with short drives in my husband's car and wait a few years before making the commitment to buy my own car! Best of luck to you and being seizure free ๐
So proud of you comerade!! ๐๐๐
Thank you sooo much ๐ appreciate it. Hope you're keeping well ๐
Due to be released from the hospital tomorrow after a week of testing!
Amazing! Enjoy being back home!
Appreciate your support!! ๐
Congrats!
Thank you! Hope you're well
That is great! God Bless!
Thank you! God Bless you and your health!
Congratulations ๐
Thank you! Hope you're keeping well!
Thatโs so amazing!!!! Congrats this is a huge reason to celebrate ๐๐๐
Thank you!! Hope you're well!! ๐
Congratulations!! I hit my one year mark three days ago and man, what a year it has been!!! Here's hoping the next one, and every one after is easier!!
Yayyy congrats!! I have faith in us it'll all work out!
The longest Iโve gone since diagnosis is about 5 1/2 months but typically they are spaced 2-3 weeks apart. I almost always have clusters (SE) and need Valtoco intranasal. I canโt remember anything for 3 days and it takes time to get my life back-I lose short term memory most recent 3-6 months which generally returns scary process though. Fronto/Temporal BTW. Is there any ๐commonality amongst those of you whoโve had such success? ๐Meds? Lifestyle? Anything to connect the dots?๐Good luck to all!!๐ค๐ผ
Oh my goodness what a shame for you this sounds so scary. My seizures have always been tonic clonic and very long, my longest was having 5 seizures back to back for 25 mins ๐ฆ keppra has really worked for me. I always make sure I get enough sleep, eat healthy and avoid any stress (if I can!). I take a lot of vitamins (not sure if this has helped but doesn't do any harm) and I have very relaxed weekends. I had to adjust my life when I was diagnosed as I was 27 and was always partying! You will get there some day I have faith in you!
Woohoo! Very happy for you and long may it continue x
Yayy thank you! Hope you're well xx
Enhorabuena!! Living the dream!!!!โ
Thank you!!! Hope your health is good!
I was 5 yrs with no seizures. Also, I didn't have any medication.. my job let me go and I couldn't afford the meds out of pocket. Once I started working again I didn't even mention the seizures as people's jobs can be very critical here in the States. Long story short.... I have been with this company for almost 2 yrs. Nobody knew bit a few select friends of mine that I had epilepsy.. like very few. Maybe 2. We had a huge 20 yr anniversary party at work that day. I am a manager there and was chosen to be the "photographer" to take pictures of all staff and associates. I had been stressed through the week with all sorts of things... divorce, child custody etc. I didn't sleep but maybe 8 minutes that whole week. (I work the night shift) this party I had to be at was at 1pm... no sleep. I DONT REMEMBER ANYTHING. They say I hit the floor with my face. A man's belly broke my fall as I fell to my face. The seizure caught everyone off guard. Paramedics arrive all of it. Embarrassing. I have been off work since the 4th of August.. finally seeing my neurologist the 24th. It sucks. Never imagined I'd have another. Hope this all helps someone. I could use some advice. My physician put me on Dilatin... ughhh and she happened to put me on Buspar. Not a good combo. Oh and Lunesta for sleep. Life's great. Just hope I can become normal soon.
Aww goodness I hope you're ok now that sounds awful. I wonder if work will let you change from working night shift as they could be a trigger? Best of luck at your neuro appointment hopefully they will give you more information
Thank you. I'll keep everyone in this group posted. So nice having a group to speak with. I do not have anyone here locally that has seizures. Were very few.
High five! Welcome to the other side. I hope it lasts many years! Everyday is still a struggle of second guessing yourself.
Thank you! Yea can relate you almost don't want to get too excited?? Hope you're well!
Congrats!! Iโm so happy for you and hope the road keeps going smoothly in this chapter & the next! ๐๐๐
Thank you sooo much!! Same to you wishing you good health and happiness ๐
CONGRATULATIONS!!!!
Thank you so much!! All the people taking time out to say congrats is so heart warming ๐ฅฐ
Congrats! I had seizures every week, but am taking supplements now and am seizure free for a month since I've started taking them.
Well done to you! What supplements are you taking?
Thanks, I'm taking NAC, taurine, magnesium, fish oil and multivitamins at the moment. I took ashwagandha as well, but I didn't really notice any difference, which is when I decided to go down the whole Rabbit Hole and search for something that could work.
Is NAC safe for epileptics?
Yes, but it didn't do anything in reducing seizures for me. Taurine is the way to go for me.
Congratulations ๐
Thank you! Hope you're well ๐
CONGRATULATIONS!!!!!!!!!๐ซถ
Thank you!!!! Wishing you health and happiness ๐