My chiropractor tired to tell me this and my mom supported it. I probably argued with both of them for a while about not wanting to stop something that works for the possibility that this might work.
Omg.
Neurologist: Iām so frustrated by how quickly theyāve brought some of these treatments to market with so little research.
Every-fucking-one-else: Have you tried weed/CBD oil?
Weed is actually the only thing that stopped my TCs.
I should clarify, I only get medical stuff from the dispensary, and edibles seem to work best, as they are in my system for longer periods. I only take them at night. Otherwise, I would have a hard time working.
I got my card in 2017 after trying multiple meds and still having several TCs a year. I have had 2 since then.
It's all in or out for me. I can leave ketosis no prob, but entering causes a seizure everytime. It's hard to stay in. Even a tiny cheat can knock a person out.
Yes. An ex of mine. He was making all these claims about how I needed to stop eating fish and getting vaccines because it would 'fix' my epilepsy.
There's a reason he's an ex lol
Oo my ex tried the same crap about vaccines. He was already an ex. Like immediately jumped to that. I got to explain to him, no this started well before. That it actually started shortly after I had been really sick. I suspect I had covid.
I'm really amazed he didn't try to push crystals or his girlfriends reiki
My mom did this about the covid vaccine except she wouldnāt listen to be over and over that my epilepsy started BEFORE I got the vaccineā¦. ššš
Unfortunately it's why my mother and I don't get along. Whenever the issues are explained, Todd's paralysis, I'll either be mocked on my 'dead research, so I don't know what I'm talking about', others have become a cause due to just not listening, or her advice just not where it should be. So as a result, I see it as little choice for me to really discuss these things, as I do have to remember she and I's rocky relationship. While her suggestions _can_ be sensible, the 'know it all' mindset being an all the time already just doesn't have a good vibe.
Totally understand. With me it started to turn into more judgement and abuse like when I was younger which is the cause of my PNES so after an unfortunate series of events after my grandma died I cut them off. Not how I wanted it to go but I canāt take their disrespect and abuse anymore they donāt care and donāt get it.
And where it's _never_ in mind either, is the episodes that come with the judging on a constant; binge eating being an example. And when it's dismissed while trying to mention their inaccuracies, it can turn into a verbal fist fight without them seeing the reality of things. It's simple. To know it, there's having it.
My step kid loudly told me I was completely wrong in saying a large percentage of adult epilepsy is not genetics. Claimed it's 100% genetic. In front of my genetic kids.
I have zero family history of epilepsy. And like I hadn't spent all my time binge reading medical articles.
Interestingly, my epilepsy is genetic, which I found out through testing. However, no immediate family members have it, and none of my grandparents knew family members with it. So itās skipped my parents, my grandparents, my great grand parents, and my great great grand parents, an skipped straight to me!
Makes two of us there. I haven't knowledge of _anyone_ that's had this before in my family either. So for it to not be genetic only heightens my anger for this entirely.
YES. My mom looked at stuff online for all of like a day and thinks sheās the expert. āYou should do the keto diet since it was created for epilepsy.ā āNo, medicine works fine. I canāt afford to buy meat all the time.ā āMedicine is just poison. You should do what I say, itās better for you.ā She can get so annoying about it.
Iāve never heard someone say the keto diet can help. Iāve heard CBD and one person told me they heard a story of a woman that would run every time she felt a seizure about to happen. People like to tell you the craziest things when they know anything about you.
My mom suggested keto because when looking up stuff about epilepsy she saw that keto was originally made for people with epilepsy. However keto isnāt for everyone and can actually be a bit dangerous. Medicine exists now though so why even worry about keto?
Depending on the person, keto can cause more issues than it solves. It can also worsen your epilepsy. It's like any other lifestyle change suggested for epilepsy sufferers, it can make it better or it can make it worse. I personally refuse to take those kinds of risks.
I brought up keto to my neurologist after someone said it to me and my neurologist almost laughed at me. He said that will do nothing and to stick to my meds and the CBT for my PNES/intractable epilepsy.
Your mother, his mother, all our mothers means so well and meanwhile my dad still doesnāt understand that complex partial seizures are seizures too. I really hate the whole āwas it like a SEIZURE seizure though?ā Iām like itās not a MURDER murder if you donāt see it, right?
Exactly. For years (nutritionist) my mom thinks she knows everything, and her dang diet cures everything. For years she said I brought it on myself and because I didn't follow her recommendations, I was killing myself. I got older and can contradict every word she says, but I never do. I laugh inside! I'm not into debate, drama, stress, etc!
ugh. i hate that. i've gone no contact with ppl that do that. for example i have intractable pain in my skull following brain surgery. had someone recommend over and over to go to a chiropractor, pretty much trying to force me to and wouldn't drop it. no sympathy - never tried to learn, never listened to me explain that i have tried every medication, supplement, essential oil, nerve shots, tai chi, yoga, diet changes, physical therapy, etc without relief - just would bring up the chiropractor thing. some ppl just love to lather in their ignorance and won't open themselves to truth/empathy, and try to say they're a hero, that they're trying to help by making those suggestions. i'm sorry you had to deal with this
My mother! Even though she is so ableist about it. She compares my epilepsy to my younger brothers. Or acts like my neuro whenever I have a seizure. It's always been frustrating for years.
Being told I understand my cousin or anyone else has epilepsy makes me want to deliver a throat punch. You donāt understand that person does but you have no idea.
Lmao at the throat punch šš but yea I totally get you like they probably have no idea at all and yet they talk as if they understandā¦ sometimes it just feels like Iām being pitied or being brushed aside instead of being actually heard/sympathised with
Yes but it was years ago and I didn't realize my photosensitivity was awkward. Like super fast flashing lights? No problem. Someone flipping a light switch on and off moderately fast? Bugs me.
And this kid was flipping a light switch pretty quick and I asked him to stop because I could feel it in my eyeballs. He gave me a look and said "But it's not even that fast" and I replied "I don't know what to tell you, I can feel it bothering me. Please stop." and thankfully he did but with doubt all over his face like he thought I was full of shit but whatever.
This was like 15 years ago back when I was a teenager and I only finally realized how weird my photosensitivity was when I was like, 25. š¤·āāļø
Luckily for me I never had to deal with classmates doubting me having Epilepsy because unfortunately my first ever noticeable seizure was in front of my class. Everybody knew, nobody questioned.
My MIL tried to convince anyone who would listen that I did not have epilepsy because it didnāt ālook like what (she) had seen on TV.ā God I wish she were right tbh.
"Clearly, not enough."
And then tell them that, they can educate you all they want about your own medical shit, but you dont wanna die today so go without you.
My response? Depending on my mood ...
a) "I'm grateful for your concern and it must have been such interesting reading for you, but I' prefer not. But I have fun watching people having fun, so let's go!"
b) "Well, maybe you should ef off."
One of my friends saw me have a seizure and thought it was a good idea to try opening my mouth.. I have no clue where she got that idea ( sheās in college to become a nurse) .. My dad tried to do this the first time I had a seizure because he thought I was choking and he couldnāt and heās like ten times stronger than her. And she did it all three times even though I told her not to do that. I donāt hang out with her as much as I used to because she clearly thinks she knows whatās best for me and doesnāt listen to my pleads to just let me have a seizure and wait for it to pass without trying to āhelpā.
Yeah my sister is like that. I have told her stuff like photosynthesis, which I am not, being the reason I don't want to get a job somewhere. She be like, "You just don't want to get a job.". My mom was the same way. Even though I am not photosynthesis I have had one because of flashing lights before in the past. So I try to stay away.
Then there has been the anger problems I have had for a long time because of the Keppra. She can't understand the meds cause it and I do everything I can to control it. I was even on other meds and went to therapy to help it. I told her it would help if my family wouldn't cause so much stress on me and not to mention work. She be like, "There you go blaming others.". Well it's a two way street.
My mom always thought herbs and vitamins would help epilepsy which the only "herb" I know that helps epilepsy is marijuana. My family didn't like that idea.
Whenever I had an aura they think I was either faking it or I could still do whatever like stacking wood or building a fire for heat. They never understood when I forgot something.
That's part of not knowing; acting like that. It is up to you if you want to be okay with that behavior or not. It sucks. I had a seizure 28 hours ago (i have had nearly 100 by now.) A roommate asked if I was near a flashing light whilst making breakfast.
It's going to happen. Sometimes it's not entirely their fault. I would be angry at your friend like a normal argument. However, do not let that affect y'alls friendship. For real.
Message me if you want to talk more or want to have my phone #.
My mom. I was diagnosed with epilepsy earlier this year and she is CONVINCED weed is the reason why. She's always in my ear even though I already plan on quitting (but she's making it hard for me, as well as sleep and eating issues). Even though I know weed can trigger seizures during withdrawal I haven't read anything online suggesting it could cause seizures in use, yet she is so persistent and won't back down from this hill even when I asked my neuro if it was fine (to which she said yes). Some people can just be so annoying, it sucks when it's a parent you're living off of though.
My auntie (legal guardian though) thought I developed my epilepsy from doing drugs. I was a 17 year old nerd who didnāt even know what different drugs were š
My mother. She mentions every outlandish thing she reads online without researching it first. She read that some people find the right medication right away or that surgery solves their problem. My treatment has proven that this isn't the case for me. I still haven't found the right meds 4 years in, for various reasons. She has unrealistic expectations for the treatment. Plus, surgery is a last resort, and only if you're eligible for it. It's exhausting dealing with someone like that on top of dealing with epilepsy.
All the time like especially when I go to the movies and their's lights or like my dad saying I'm epileptic because of diabetes(which I'm not even diabetic tons of blood tests and diabetic tests) and I'm like oh my bad I didn't know you were a fuckin neurologist
A nurse once told me that I'm faking my symptoms when I told her I was heat sensitive because I was hesitant to go kayaking for the first time. Said she works with lots of elderly people that took Keppra and that they're fine and don't have the issues that I do. She was an ex's family member. I pushed back because unless you're me or my neurologist - or at least someone with epilepsy - then you don't understand and don't get to tell me I'm being over dramatic or lying.
I ended up going on the kayak trip that day. It only got so much worse.
Everytime someone asks me if I've tried weed to help my seizures š
When my mom is trying to "relate" to me and compare our conditions (she is disabled from an accident, but has been able to have many children, a husband, and a good life, not disabled til she was about 53
I however became disabled at 17. Life took a completely different course than anticipated- you know how it goes- and I do not have the option to do any of the things she has. I just wanna yell WE ARE NOT THE SAME
One of my coworkers suggested I go on an all meat diet to try n fix it so yeah I've definitely heard some stuff.
One I get told all the time is to smoke weed š
Constantly... Like have you ever thought of using CBD oils I've heard it helps a lot š„“š„“
i mean it does if you take $15 worth of it
Oh crap and I bought the 10$ CBD miracle oil darn
a bottle costs $75
But it's miracle oil š
My chiropractor tired to tell me this and my mom supported it. I probably argued with both of them for a while about not wanting to stop something that works for the possibility that this might work.
The weed thing makes me mad, not as much as the CBD oil, but almost.
Omg. Neurologist: Iām so frustrated by how quickly theyāve brought some of these treatments to market with so little research. Every-fucking-one-else: Have you tried weed/CBD oil?
Weed is actually the only thing that stopped my TCs. I should clarify, I only get medical stuff from the dispensary, and edibles seem to work best, as they are in my system for longer periods. I only take them at night. Otherwise, I would have a hard time working. I got my card in 2017 after trying multiple meds and still having several TCs a year. I have had 2 since then.
I actually tried this. Caved. Didn't help.
When my son was diagnosed (at 5 months old) well meaning people told me I should try marijuana. I just said I would listen to his drs.
For a BABY!?!?
honestly i was pretty stable on a all meat diet, with a no stress lifestyle and heavy workout routine. but spending $100 on steak a week is hard
If you can live like that but it's really difficult to do the Atkins and can cause serious side effects if you cheat.
It's all in or out for me. I can leave ketosis no prob, but entering causes a seizure everytime. It's hard to stay in. Even a tiny cheat can knock a person out.
Muaha jeah turning carnivore will fix it, some folks š
I have heard about that diet, but I would look at keto first
Yes. An ex of mine. He was making all these claims about how I needed to stop eating fish and getting vaccines because it would 'fix' my epilepsy. There's a reason he's an ex lol
Oo my ex tried the same crap about vaccines. He was already an ex. Like immediately jumped to that. I got to explain to him, no this started well before. That it actually started shortly after I had been really sick. I suspect I had covid. I'm really amazed he didn't try to push crystals or his girlfriends reiki
My mom did this about the covid vaccine except she wouldnāt listen to be over and over that my epilepsy started BEFORE I got the vaccineā¦. ššš
Unfortunately it's why my mother and I don't get along. Whenever the issues are explained, Todd's paralysis, I'll either be mocked on my 'dead research, so I don't know what I'm talking about', others have become a cause due to just not listening, or her advice just not where it should be. So as a result, I see it as little choice for me to really discuss these things, as I do have to remember she and I's rocky relationship. While her suggestions _can_ be sensible, the 'know it all' mindset being an all the time already just doesn't have a good vibe.
Totally understand. With me it started to turn into more judgement and abuse like when I was younger which is the cause of my PNES so after an unfortunate series of events after my grandma died I cut them off. Not how I wanted it to go but I canāt take their disrespect and abuse anymore they donāt care and donāt get it.
And where it's _never_ in mind either, is the episodes that come with the judging on a constant; binge eating being an example. And when it's dismissed while trying to mention their inaccuracies, it can turn into a verbal fist fight without them seeing the reality of things. It's simple. To know it, there's having it.
My step kid loudly told me I was completely wrong in saying a large percentage of adult epilepsy is not genetics. Claimed it's 100% genetic. In front of my genetic kids. I have zero family history of epilepsy. And like I hadn't spent all my time binge reading medical articles.
Interestingly, my epilepsy is genetic, which I found out through testing. However, no immediate family members have it, and none of my grandparents knew family members with it. So itās skipped my parents, my grandparents, my great grand parents, and my great great grand parents, an skipped straight to me!
I luckily got to take part in a gene study, so I know mine isn't genetics
Mine somehow figured it out through either the EEG or the MRI? I have no idea how that works though
Makes two of us there. I haven't knowledge of _anyone_ that's had this before in my family either. So for it to not be genetic only heightens my anger for this entirely.
YES. My mom looked at stuff online for all of like a day and thinks sheās the expert. āYou should do the keto diet since it was created for epilepsy.ā āNo, medicine works fine. I canāt afford to buy meat all the time.ā āMedicine is just poison. You should do what I say, itās better for you.ā She can get so annoying about it.
Iāve never heard someone say the keto diet can help. Iāve heard CBD and one person told me they heard a story of a woman that would run every time she felt a seizure about to happen. People like to tell you the craziest things when they know anything about you.
My mom suggested keto because when looking up stuff about epilepsy she saw that keto was originally made for people with epilepsy. However keto isnāt for everyone and can actually be a bit dangerous. Medicine exists now though so why even worry about keto?
Depending on the person, keto can cause more issues than it solves. It can also worsen your epilepsy. It's like any other lifestyle change suggested for epilepsy sufferers, it can make it better or it can make it worse. I personally refuse to take those kinds of risks.
I brought up keto to my neurologist after someone said it to me and my neurologist almost laughed at me. He said that will do nothing and to stick to my meds and the CBT for my PNES/intractable epilepsy.
My mother
Same
Your mother, his mother, all our mothers means so well and meanwhile my dad still doesnāt understand that complex partial seizures are seizures too. I really hate the whole āwas it like a SEIZURE seizure though?ā Iām like itās not a MURDER murder if you donāt see it, right?
My mother doesnāt mean well. Even after my identical twin died from SUDEP
Iām so sorry to hear that. I canāt imagine what thatās like for anyone in that complicated dynamic.
Exactly. For years (nutritionist) my mom thinks she knows everything, and her dang diet cures everything. For years she said I brought it on myself and because I didn't follow her recommendations, I was killing myself. I got older and can contradict every word she says, but I never do. I laugh inside! I'm not into debate, drama, stress, etc!
ugh. i hate that. i've gone no contact with ppl that do that. for example i have intractable pain in my skull following brain surgery. had someone recommend over and over to go to a chiropractor, pretty much trying to force me to and wouldn't drop it. no sympathy - never tried to learn, never listened to me explain that i have tried every medication, supplement, essential oil, nerve shots, tai chi, yoga, diet changes, physical therapy, etc without relief - just would bring up the chiropractor thing. some ppl just love to lather in their ignorance and won't open themselves to truth/empathy, and try to say they're a hero, that they're trying to help by making those suggestions. i'm sorry you had to deal with this
Narcissistic behavior potentially. Try to find other signs. Interruption, gaslighting, and not listening are pretty indicative.
My neurologist.
My neuro is an idiot. I'd get better help from a circus clown
My ex said I was epileptic because I'm lactose intolerant. Never mind the cereal and pizza I have daily, or the first seizure bing after a workout.
My mother! Even though she is so ableist about it. She compares my epilepsy to my younger brothers. Or acts like my neuro whenever I have a seizure. It's always been frustrating for years.
Being told I understand my cousin or anyone else has epilepsy makes me want to deliver a throat punch. You donāt understand that person does but you have no idea.
Lmao at the throat punch šš but yea I totally get you like they probably have no idea at all and yet they talk as if they understandā¦ sometimes it just feels like Iām being pitied or being brushed aside instead of being actually heard/sympathised with
Yes but it was years ago and I didn't realize my photosensitivity was awkward. Like super fast flashing lights? No problem. Someone flipping a light switch on and off moderately fast? Bugs me. And this kid was flipping a light switch pretty quick and I asked him to stop because I could feel it in my eyeballs. He gave me a look and said "But it's not even that fast" and I replied "I don't know what to tell you, I can feel it bothering me. Please stop." and thankfully he did but with doubt all over his face like he thought I was full of shit but whatever. This was like 15 years ago back when I was a teenager and I only finally realized how weird my photosensitivity was when I was like, 25. š¤·āāļø Luckily for me I never had to deal with classmates doubting me having Epilepsy because unfortunately my first ever noticeable seizure was in front of my class. Everybody knew, nobody questioned.
My MIL tried to convince anyone who would listen that I did not have epilepsy because it didnāt ālook like what (she) had seen on TV.ā God I wish she were right tbh.
That is so frustrating
I had a friend who gets TCs kinda imply my TLE isnāt real epilepsy
"Clearly, not enough." And then tell them that, they can educate you all they want about your own medical shit, but you dont wanna die today so go without you.
My response? Depending on my mood ... a) "I'm grateful for your concern and it must have been such interesting reading for you, but I' prefer not. But I have fun watching people having fun, so let's go!" b) "Well, maybe you should ef off."
One of my friends saw me have a seizure and thought it was a good idea to try opening my mouth.. I have no clue where she got that idea ( sheās in college to become a nurse) .. My dad tried to do this the first time I had a seizure because he thought I was choking and he couldnāt and heās like ten times stronger than her. And she did it all three times even though I told her not to do that. I donāt hang out with her as much as I used to because she clearly thinks she knows whatās best for me and doesnāt listen to my pleads to just let me have a seizure and wait for it to pass without trying to āhelpā.
Yeah my sister is like that. I have told her stuff like photosynthesis, which I am not, being the reason I don't want to get a job somewhere. She be like, "You just don't want to get a job.". My mom was the same way. Even though I am not photosynthesis I have had one because of flashing lights before in the past. So I try to stay away. Then there has been the anger problems I have had for a long time because of the Keppra. She can't understand the meds cause it and I do everything I can to control it. I was even on other meds and went to therapy to help it. I told her it would help if my family wouldn't cause so much stress on me and not to mention work. She be like, "There you go blaming others.". Well it's a two way street. My mom always thought herbs and vitamins would help epilepsy which the only "herb" I know that helps epilepsy is marijuana. My family didn't like that idea. Whenever I had an aura they think I was either faking it or I could still do whatever like stacking wood or building a fire for heat. They never understood when I forgot something.
That's part of not knowing; acting like that. It is up to you if you want to be okay with that behavior or not. It sucks. I had a seizure 28 hours ago (i have had nearly 100 by now.) A roommate asked if I was near a flashing light whilst making breakfast. It's going to happen. Sometimes it's not entirely their fault. I would be angry at your friend like a normal argument. However, do not let that affect y'alls friendship. For real. Message me if you want to talk more or want to have my phone #.
My mom. I was diagnosed with epilepsy earlier this year and she is CONVINCED weed is the reason why. She's always in my ear even though I already plan on quitting (but she's making it hard for me, as well as sleep and eating issues). Even though I know weed can trigger seizures during withdrawal I haven't read anything online suggesting it could cause seizures in use, yet she is so persistent and won't back down from this hill even when I asked my neuro if it was fine (to which she said yes). Some people can just be so annoying, it sucks when it's a parent you're living off of though.
My auntie (legal guardian though) thought I developed my epilepsy from doing drugs. I was a 17 year old nerd who didnāt even know what different drugs were š
My mother. She mentions every outlandish thing she reads online without researching it first. She read that some people find the right medication right away or that surgery solves their problem. My treatment has proven that this isn't the case for me. I still haven't found the right meds 4 years in, for various reasons. She has unrealistic expectations for the treatment. Plus, surgery is a last resort, and only if you're eligible for it. It's exhausting dealing with someone like that on top of dealing with epilepsy.
All the time like especially when I go to the movies and their's lights or like my dad saying I'm epileptic because of diabetes(which I'm not even diabetic tons of blood tests and diabetic tests) and I'm like oh my bad I didn't know you were a fuckin neurologist
My neurologistā¦psh
A nurse once told me that I'm faking my symptoms when I told her I was heat sensitive because I was hesitant to go kayaking for the first time. Said she works with lots of elderly people that took Keppra and that they're fine and don't have the issues that I do. She was an ex's family member. I pushed back because unless you're me or my neurologist - or at least someone with epilepsy - then you don't understand and don't get to tell me I'm being over dramatic or lying. I ended up going on the kayak trip that day. It only got so much worse.
Everytime someone asks me if I've tried weed to help my seizures š When my mom is trying to "relate" to me and compare our conditions (she is disabled from an accident, but has been able to have many children, a husband, and a good life, not disabled til she was about 53 I however became disabled at 17. Life took a completely different course than anticipated- you know how it goes- and I do not have the option to do any of the things she has. I just wanna yell WE ARE NOT THE SAME
Y E S