emma
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This is going to be long, and complicated and I apologize for that in advance, I want to be as accurate as possible so I can get the best answers to help my family.
I have a 4 generation (that we know of) family history of migraines.. with random other family members suffering chronic headaches. And, my grandmother and mother both have seizures that we know for SURE.
I've had 'shaking' episodes as far back as I can remember, where I could tell I was shaking but couldn't make it stop and would just have to lay in bed until it stopped. I've had accidents where I've fallen down stairs a couple times and wasn't sure how it happened. (I learned to hold on to guard rails.)
I get bumps and bruises and don't remember how I got them, and I routinely almost walk into things that even though I "see" them in front of me, my brain doesn't always register the connection that i'm about to walk into it, until I do. (I gave myself a black eye once as a kid by walking into a door frame.)
Part of me has made excuses my entire life- and so did my family "you're clumsy, klutsy, pay more attention"
i've ruled out almost every psychological disorder (besides anxiety, but who WOULDNT be mildly anxious when dealing with doctors who never have answers for you? - I lived with the "crazy" label for years with no real diagnoses...)
And, I compensated, I walk with my hands out in front of me, I make lists to keep track of everything - On my foggy bad days, I don't leave the house.
Well, my son suffered what "appeared" to be a grand mal??? (I had one when I was 12, but they said it was a reaction to depakote and took me off it and I never had another one that they "saw" in person.)
neither of us have ever confirmed that we have seizure activity.
Here's the rub.
We both suffer auras, and headaches, almost every aura list on there is what we suffer from, sight, smell, hearing, dazed, confused...
I had an EEG to see if my "Twitches" and zone-outs were related to seizure activity - I didn't really HAVE any during the 20 minutes EEG - it was one of my "good" days as I call them.
my son and I present the exact same symptoms - I want to make sure he's not misdiagnosed and that we aren't medicated for the wrong things.
My grand mother and mom both have had migraines and seizures.
right now, we saw a seizure expert who spent 2 hours with us and said "You both are suffering from seizures" because of watching us have them right in front of him and would have diagnosed us on the spot - I was hesitant and said "no meds until we do further testing."
I go to a different neurologist, and he said it COULD be seizures, but since my EEG came back clean, he wants to do an MRI/CT scan and a 24 hour cap at home to monitor brain wave activity.
He suggested that maybe it's migraines and not seizures.
the problem is, some of my symptoms fit migraines and some of my symptoms fit seizures.. Is it possible to have both? is it possible to have seizure like episodes that don't show up on EEG machines?
My son and I both have the exact same symptoms and one doctor said "yep seizures" and another said "i want to rule out seizures and make sure it's not X X and X"
I'm so confused. Both doctors have told me, that it appears to be genetic and that none of our symptoms fit into any "neat" box...
my brain is very analytical and I cope by understanding what's going on... having a day where i'm basically told "sorry, everything's inconclusive, you're not crazy, something wrong, but we don't know What" was hard for me to digest.
We've had blood work, thyroid, etc, everything comes back amazing.
I don't know what to think. We were both able to induce seizure like activity with the hyperventilation blowing test... that was consistent each time, we both "zone out" we both have trouble with lights - but many of the symptoms could be either, or... or both.
but our issue is, it could be either, or or both... how do we know for sure what is what if the EEG tests and others come back with no proof of activity, or spikes, but we are still manifesting as seizure-type activity?
what do we do if they can't decide? I don't want my son on epilepsy medication if seizures aren't what were dealing with.
I have twitches and shaking episodes where I can't make myself stop and my son has hysterical emotional outbursts accompanied by his auras (which I did as a child as well until I learned to avoid stress and how to defuse situations and recognize the warning signs in me that something was wrong - and to go hide in a dark quiet calm spot until it passed - sometimes I shake, sometimes I don't.....)
I've had a dog trained to alert to these episodes in me - I'm training my NEW dog to alert to these episodes... they ARE real - but if they aren't seizures, WHAT THE HECK ARE THEY?!
and now my SON is having them - and witnesses by doctors who've confirmed in both of us that it's "Real"... but what happens if they can't prove it?
this has been a life-long issue of "well, I guess i'm just crazy and no one knows whats wrong with me"
Now, we might have a diagnoses, but it seems like doctors disagree about things, such as you don't have epilepsy if the EEG and MRI don't show anything???
and how do you know if its migraines, or epilepsy, or BOTH?
has ANYONE been in a situation like this with a genetic history of both and doctors not knowing how to interpret all the data?
(I can give more details if needed, but I have a killer headache right now, the doctor today flashed lights in my eyes and it triggered a headache - sorry if the post was a bit rambling, I was trying to be as detailed as possible but I know I left a lot out.)
Edited to add :
We also eat a gluten-free diet, with low carbs because they reduce these symptoms in both of us, we take fish oil, calcium, vitamin D, folic acid and other vitamins that help reduce symptoms in both of us.
We've ruled out diabetes and blood sugar issues, though I manifest with low-blood sugar drop symptoms - but no actual blood sugar issues are present in blood work or testing and I try to snack every couple of hours - but eating frequently didn't stop my auras. I have auras on an almost daily basis, but don't always have the "Fogs" or even the headaches accompanied by them and sometimes my fogs can last a few days in a row. and my "shaking fits" are fairly rare, and more common around bed time or under stress.
both my son and I have horrible balance issues and we both have a tendency to hold on to things because we mis-step a lot or seem to zone out while walking for a few seconds and almost stumble and fall down, i've learned to compensate for it over the years and were trying to teach him how to do it as well.
we've both have a history of falling out of trees and not knowing how it happened, crashing our bikes into ditches and not knowing how we got from the middle of the road to the ditch...
and neither of us have done drugs or suffered major head trauma.
I have a 4 generation (that we know of) family history of migraines.. with random other family members suffering chronic headaches. And, my grandmother and mother both have seizures that we know for SURE.
I've had 'shaking' episodes as far back as I can remember, where I could tell I was shaking but couldn't make it stop and would just have to lay in bed until it stopped. I've had accidents where I've fallen down stairs a couple times and wasn't sure how it happened. (I learned to hold on to guard rails.)
I get bumps and bruises and don't remember how I got them, and I routinely almost walk into things that even though I "see" them in front of me, my brain doesn't always register the connection that i'm about to walk into it, until I do. (I gave myself a black eye once as a kid by walking into a door frame.)
Part of me has made excuses my entire life- and so did my family "you're clumsy, klutsy, pay more attention"
i've ruled out almost every psychological disorder (besides anxiety, but who WOULDNT be mildly anxious when dealing with doctors who never have answers for you? - I lived with the "crazy" label for years with no real diagnoses...)
And, I compensated, I walk with my hands out in front of me, I make lists to keep track of everything - On my foggy bad days, I don't leave the house.
Well, my son suffered what "appeared" to be a grand mal??? (I had one when I was 12, but they said it was a reaction to depakote and took me off it and I never had another one that they "saw" in person.)
neither of us have ever confirmed that we have seizure activity.
Here's the rub.
We both suffer auras, and headaches, almost every aura list on there is what we suffer from, sight, smell, hearing, dazed, confused...
I had an EEG to see if my "Twitches" and zone-outs were related to seizure activity - I didn't really HAVE any during the 20 minutes EEG - it was one of my "good" days as I call them.
my son and I present the exact same symptoms - I want to make sure he's not misdiagnosed and that we aren't medicated for the wrong things.
My grand mother and mom both have had migraines and seizures.
right now, we saw a seizure expert who spent 2 hours with us and said "You both are suffering from seizures" because of watching us have them right in front of him and would have diagnosed us on the spot - I was hesitant and said "no meds until we do further testing."
I go to a different neurologist, and he said it COULD be seizures, but since my EEG came back clean, he wants to do an MRI/CT scan and a 24 hour cap at home to monitor brain wave activity.
He suggested that maybe it's migraines and not seizures.
the problem is, some of my symptoms fit migraines and some of my symptoms fit seizures.. Is it possible to have both? is it possible to have seizure like episodes that don't show up on EEG machines?
My son and I both have the exact same symptoms and one doctor said "yep seizures" and another said "i want to rule out seizures and make sure it's not X X and X"
I'm so confused. Both doctors have told me, that it appears to be genetic and that none of our symptoms fit into any "neat" box...
my brain is very analytical and I cope by understanding what's going on... having a day where i'm basically told "sorry, everything's inconclusive, you're not crazy, something wrong, but we don't know What" was hard for me to digest.
We've had blood work, thyroid, etc, everything comes back amazing.
I don't know what to think. We were both able to induce seizure like activity with the hyperventilation blowing test... that was consistent each time, we both "zone out" we both have trouble with lights - but many of the symptoms could be either, or... or both.
but our issue is, it could be either, or or both... how do we know for sure what is what if the EEG tests and others come back with no proof of activity, or spikes, but we are still manifesting as seizure-type activity?
what do we do if they can't decide? I don't want my son on epilepsy medication if seizures aren't what were dealing with.
I have twitches and shaking episodes where I can't make myself stop and my son has hysterical emotional outbursts accompanied by his auras (which I did as a child as well until I learned to avoid stress and how to defuse situations and recognize the warning signs in me that something was wrong - and to go hide in a dark quiet calm spot until it passed - sometimes I shake, sometimes I don't.....)
I've had a dog trained to alert to these episodes in me - I'm training my NEW dog to alert to these episodes... they ARE real - but if they aren't seizures, WHAT THE HECK ARE THEY?!
and now my SON is having them - and witnesses by doctors who've confirmed in both of us that it's "Real"... but what happens if they can't prove it?
this has been a life-long issue of "well, I guess i'm just crazy and no one knows whats wrong with me"
Now, we might have a diagnoses, but it seems like doctors disagree about things, such as you don't have epilepsy if the EEG and MRI don't show anything???
and how do you know if its migraines, or epilepsy, or BOTH?
has ANYONE been in a situation like this with a genetic history of both and doctors not knowing how to interpret all the data?
(I can give more details if needed, but I have a killer headache right now, the doctor today flashed lights in my eyes and it triggered a headache - sorry if the post was a bit rambling, I was trying to be as detailed as possible but I know I left a lot out.)
Edited to add :
We also eat a gluten-free diet, with low carbs because they reduce these symptoms in both of us, we take fish oil, calcium, vitamin D, folic acid and other vitamins that help reduce symptoms in both of us.
We've ruled out diabetes and blood sugar issues, though I manifest with low-blood sugar drop symptoms - but no actual blood sugar issues are present in blood work or testing and I try to snack every couple of hours - but eating frequently didn't stop my auras. I have auras on an almost daily basis, but don't always have the "Fogs" or even the headaches accompanied by them and sometimes my fogs can last a few days in a row. and my "shaking fits" are fairly rare, and more common around bed time or under stress.
both my son and I have horrible balance issues and we both have a tendency to hold on to things because we mis-step a lot or seem to zone out while walking for a few seconds and almost stumble and fall down, i've learned to compensate for it over the years and were trying to teach him how to do it as well.
we've both have a history of falling out of trees and not knowing how it happened, crashing our bikes into ditches and not knowing how we got from the middle of the road to the ditch...
and neither of us have done drugs or suffered major head trauma.
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