Hi; My doctor wants me to tell him how frequent my seizures are. I only know about them due to witnesses who have seen them happen. I have neither an aura nor any recollection of events. How, therefore can I keep track of them? Seems impossible to me. Thanks all.
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Hi Phtzzz,
Welcome to the forum! When I have an aura seizure I get a nervous feeling in my stomach and sometimes I see colors
flashing back and forth in my eyes. I also will smell odd odors but I'm conscious during the entire seizure. If you notice
anything like this you just had a aura seizure. Also if you should notice you have a headache or feel really tired and you
are confused as to what just happened a couple of minutes ago that is a possible absence seizure.
Each time I have a seizure I have a calendar and write down what time the seizure happened along with a discription of it
by doing this it will help your Dr. see a possible pattern in your seizures. I often have seizures when there's a low pressure
in the weather or lack of sleep and stress these are the 2 main things that trigger seizures for me. Also if I'm around a lot
of people using a cell phone or if I drink diet soda the nutra sweet with trigger seizures up with no problem because it
causes more electrical activity in the brain.
I wish you the best of luck and May God Bless You,
Sue
Welcome to the forum! When I have an aura seizure I get a nervous feeling in my stomach and sometimes I see colors
flashing back and forth in my eyes. I also will smell odd odors but I'm conscious during the entire seizure. If you notice
anything like this you just had a aura seizure. Also if you should notice you have a headache or feel really tired and you
are confused as to what just happened a couple of minutes ago that is a possible absence seizure.
Each time I have a seizure I have a calendar and write down what time the seizure happened along with a discription of it
by doing this it will help your Dr. see a possible pattern in your seizures. I often have seizures when there's a low pressure
in the weather or lack of sleep and stress these are the 2 main things that trigger seizures for me. Also if I'm around a lot
of people using a cell phone or if I drink diet soda the nutra sweet with trigger seizures up with no problem because it
causes more electrical activity in the brain.
I wish you the best of luck and May God Bless You,
Sue
BIGMAN131307
Veteran
- Messages
- 3,665
- Reaction score
- 195
- Points
- 178
When I was younger I used to have auras before my seizures. I'd get a chill up my back, and start to feel nauseous. Then I'd have a CPS that would last about 5 minutes or less. Afterwards I'd have a headache and be very tired. As I got older my seizures changed and I no longer had any auras.
They'd just hit me at anytime. But I would always have a headache and be very tired afterwards. So even without a witness I could keep track of when I had a seizure.
How do you feel just before a seizure? How do you feel afterwards? Know one or both of these answers is the key.
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
Hey Phtzzz -- Are your seizures tonic-clonics (convulsions with loss of consciousness) or are they complex partials (where you are unaware, but still conscious, sort of like sleepwalking)? For the former, you can look for things like long-lasting headaches, back pains, unexplained injuries, fatigue, bitten tongue, etc.
For complex partials, it’s definitely trickier. If your partials are relatively long you might be extra-tired. If you think you are having them at night, a video camera or a fitness watch or tracker that monitors sleep might help. If you are alone during the daytime you can ask friends or family members to check in regularly via Facetime or similar app -- they might catch a seizure that you are unaware of. If you're at a monitor, you can possibly set up your computer camera to record yourself, and review later.
- Messages
- 533
- Reaction score
- 95
- Points
- 133
I can often time my absences because I watch a ton of streaming TV. Just check how far I need to rewind the show before I can tell where I checked out. Falling episodes are reasonably the same, even the ones I don't remember. Just rewind the show. Otherwise, the big ones for instance (which are rare) I am usually too out of it to even know the day of the week but I can log it within an hour easily enough.
Depending on your episodes, it would seem to ME that you need simply log whenever you wake up on the floor, and give your neuro that log.
Depending on your episodes, it would seem to ME that you need simply log whenever you wake up on the floor, and give your neuro that log.
If you have any witnesses you know personally, ask them for what exactly happened so that you can write it down and take it to the doctor. I've interviewed my husband a few times before doctors appointments and written it down to review and then tell my doctor.
If you're able, at least right the day they happen or the time of day, these things can give the doctor some idea if you're able.
For those that have seizures/epilepsy, it varies from person to person. If you feel unaware of what's going on and can't seem to write any notes for your doctor, tell them that.
Any time you might remember a minute detail later on, write it down. Even small bits of information can help the doctor out.
A last resort option is to have cameras in your home so you can relay footage to your doctor, but as I mentioned - probably a last resort option.
For me when I have a seizure, I generally recover a lot of memory from the event and then there's other times where I was so out of it I don't even know unless someone told me. It depends on the seizure I had. Before a seizure these days, I get to feeling super shaky and I get dizzy. At first it will be a bit of dizziness, but will continue to escalate until I'm so dizzy that I can't even stand or think properly. Waves of nausea are also common around that point. A lot of times I get this light headed feeling like I'm in a dream kind of. I know I'm out of it also when my emotions aren't all there. Someone could tell me something super exciting, but it doesn't seem to click or I might feel happy about something, but it's hard to express that because I'm like in zombie mode or something.
After a seizure, though, I'm flat out exhausted for a few days. Waking up with a major headache sometimes tells me a lot. I've also had horrible dreams that I've had seizures so I wonder if I have in my sleep in the past.
I hope that you figure out a way to get what you're doctor is looking for.
If you're able, at least right the day they happen or the time of day, these things can give the doctor some idea if you're able.
For those that have seizures/epilepsy, it varies from person to person. If you feel unaware of what's going on and can't seem to write any notes for your doctor, tell them that.
Any time you might remember a minute detail later on, write it down. Even small bits of information can help the doctor out.
A last resort option is to have cameras in your home so you can relay footage to your doctor, but as I mentioned - probably a last resort option.
For me when I have a seizure, I generally recover a lot of memory from the event and then there's other times where I was so out of it I don't even know unless someone told me. It depends on the seizure I had. Before a seizure these days, I get to feeling super shaky and I get dizzy. At first it will be a bit of dizziness, but will continue to escalate until I'm so dizzy that I can't even stand or think properly. Waves of nausea are also common around that point. A lot of times I get this light headed feeling like I'm in a dream kind of. I know I'm out of it also when my emotions aren't all there. Someone could tell me something super exciting, but it doesn't seem to click or I might feel happy about something, but it's hard to express that because I'm like in zombie mode or something.
After a seizure, though, I'm flat out exhausted for a few days. Waking up with a major headache sometimes tells me a lot. I've also had horrible dreams that I've had seizures so I wonder if I have in my sleep in the past.
I hope that you figure out a way to get what you're doctor is looking for.
I can feel my simple partial seizures start and know what's going on during those. They last less than 5 minutes. My complex partials are another story. Unless 1) somebody witnesses them, 2) I hurt myself, or 3) I realize a lot of time has lapsed due a totally different show suddenly being on TV, I don't know when/if one occurs.
Family members know I record when it happened, what I did during it, & how long it lasted in a notebook.
Family members know I record when it happened, what I did during it, & how long it lasted in a notebook.
- Messages
- 5,831
- Reaction score
- 846
- Points
- 268
I usually don't know when I've had a seizure, unless someone sees me have it, and I very rarely have any type of aura before hand to know it's coming on.
I usually have horrible headaches after a seizure then I assume I had one. At times I'll loose my bladder. Once I'd been doing a crossword puzzle and looked down at it and saw that I'd scribbled all over the page. There was even a time that my ex went into the kitchen and saw that the curling iron was sitting on the kitchen table. Turns out I'd had a seizure while I was fixing my hair and carried it from the bedroom to the kitchen, holding onto the hot part. I ended up with third degree burns on my hand and I never felt a thing, even after I came out of the seizure. No one can believe that, even me.
I usually have horrible headaches after a seizure then I assume I had one. At times I'll loose my bladder. Once I'd been doing a crossword puzzle and looked down at it and saw that I'd scribbled all over the page. There was even a time that my ex went into the kitchen and saw that the curling iron was sitting on the kitchen table. Turns out I'd had a seizure while I was fixing my hair and carried it from the bedroom to the kitchen, holding onto the hot part. I ended up with third degree burns on my hand and I never felt a thing, even after I came out of the seizure. No one can believe that, even me.
Similar things have happened to me. I have burned myself severely--second and third degree--at least 7 times during complex partials. I've lost my bladder a few times, too (though I usually don't). For this reason, I will wear protective pads when I'm going to be out for a long time just in case.
Hi to all
I am new to this forum. I just wanted to share my experience and seek for a similar story here and advice.
Last year, beginning of March (while having a traumatic situation), I have started to have very strange kinds of a seizures. All were starting after waking up (around 30-60 min after) with "funny" fear sensation of unknown and having deja vu which I can't determinate if I had dreamed that or really happened. At the same time I was experienced smell of something burning. I was conscious all of the time. Just something was drowning me down to my thoughts to start analyzing if that was a dream or real and this was making me feel even worse. It was lasting for maximum 1-2 minutes. All of the time, the seizure was ending with heavy nausea, urge to vomit and cry. For a period of 3 months, I had 12 of them. Beginning of June, I went to doctor to check what is happening. My MRI was clear and 2 EEGs were normal. They listed me like suspect to temporal lobe epilepsy without impaired awareness and put me on Tegretol CR 400 mg/day. Since than I had +3 EEG controls and non of them showed any problem. I am still suspected and not diagnosed with epilepsy. Since I take the meds, everything seems ok for now but I have started to gain a weight (I am pretty slim and trying to stay like that because meanwhile I have high form of Hashimoto's thyroid and any plus kg on my body is worsening the situation). Whatever I do, I can't get rid of that extra 6-7 kg from the meds. Btw, my doctor doesn't want to change the Tegretol since it functions good. But, they are still not 100% convinced that I have epilepsy.....
They are afraid to cut the meds also, but I am afraid to take them forever if I am not really epileptic case. To note, I am going to the best doctor in this field in my country, so I don't have many other options and choices.
Does anybody else has experienced something similar and have you been diagnosed with epilepsy like this.
Thanks for your help in advance
I am new to this forum. I just wanted to share my experience and seek for a similar story here and advice.
Last year, beginning of March (while having a traumatic situation), I have started to have very strange kinds of a seizures. All were starting after waking up (around 30-60 min after) with "funny" fear sensation of unknown and having deja vu which I can't determinate if I had dreamed that or really happened. At the same time I was experienced smell of something burning. I was conscious all of the time. Just something was drowning me down to my thoughts to start analyzing if that was a dream or real and this was making me feel even worse. It was lasting for maximum 1-2 minutes. All of the time, the seizure was ending with heavy nausea, urge to vomit and cry. For a period of 3 months, I had 12 of them. Beginning of June, I went to doctor to check what is happening. My MRI was clear and 2 EEGs were normal. They listed me like suspect to temporal lobe epilepsy without impaired awareness and put me on Tegretol CR 400 mg/day. Since than I had +3 EEG controls and non of them showed any problem. I am still suspected and not diagnosed with epilepsy. Since I take the meds, everything seems ok for now but I have started to gain a weight (I am pretty slim and trying to stay like that because meanwhile I have high form of Hashimoto's thyroid and any plus kg on my body is worsening the situation). Whatever I do, I can't get rid of that extra 6-7 kg from the meds. Btw, my doctor doesn't want to change the Tegretol since it functions good. But, they are still not 100% convinced that I have epilepsy.....
They are afraid to cut the meds also, but I am afraid to take them forever if I am not really epileptic case. To note, I am going to the best doctor in this field in my country, so I don't have many other options and choices.
Does anybody else has experienced something similar and have you been diagnosed with epilepsy like this.
Thanks for your help in advance
Hi Ivy,
Welcome to the forum! You may be having myoclonic seizures and this type of seizure happens when a person goes to bed
and when they wake up. I had this type of seizure until my Dr. put me on vimpat and after that they stopped. When you smell
the burning smell you are having a aura seizure also called a simple partial seizure.
I had brain surgery to reduce my seizures and just like you my Dr. did many test to see where the damage was and they found
scar tissue on the right temporal lobe but when they did the surgery they found damage so deep in my brain on the left side that
not a single test would show it and this could be what's going on with you. The thyroid problem can also trigger more seizures I have
hypothyroid problems but I'm not taking any med for it because it's a hormone pill and once you start messing around with the
hormones I start having seizures. Have you tried using cbd oil (med. marijuana) my Epileptologist told me to start using it and since
then my seizures have decreased to the lowest in the past 50 yrs.
Please get a calendar and start keeping track of these seizures. Write down what time they happen and the type of seizure you
had. Also write down when you start and stop your monthly cycle or if you have been sick. By doing this your Dr. may see a pattern
in your seizure as to what days of the month or what time of day/night you are more likely to have a seizure.
Do you ever feel tired after a good nights sleep? If you do you may want to ask your Dr. to do a sleep study along with an
e.e.g. and e.k.g. all at the same time. I had this done and my Dr. found out I was having seizures in my sleep 1-2 hrs. before
I woke up. I wish you the best of luck and May God Bless You!
Sue
Welcome to the forum! You may be having myoclonic seizures and this type of seizure happens when a person goes to bed
and when they wake up. I had this type of seizure until my Dr. put me on vimpat and after that they stopped. When you smell
the burning smell you are having a aura seizure also called a simple partial seizure.
I had brain surgery to reduce my seizures and just like you my Dr. did many test to see where the damage was and they found
scar tissue on the right temporal lobe but when they did the surgery they found damage so deep in my brain on the left side that
not a single test would show it and this could be what's going on with you. The thyroid problem can also trigger more seizures I have
hypothyroid problems but I'm not taking any med for it because it's a hormone pill and once you start messing around with the
hormones I start having seizures. Have you tried using cbd oil (med. marijuana) my Epileptologist told me to start using it and since
then my seizures have decreased to the lowest in the past 50 yrs.
Please get a calendar and start keeping track of these seizures. Write down what time they happen and the type of seizure you
had. Also write down when you start and stop your monthly cycle or if you have been sick. By doing this your Dr. may see a pattern
in your seizure as to what days of the month or what time of day/night you are more likely to have a seizure.
Do you ever feel tired after a good nights sleep? If you do you may want to ask your Dr. to do a sleep study along with an
e.e.g. and e.k.g. all at the same time. I had this done and my Dr. found out I was having seizures in my sleep 1-2 hrs. before
I woke up. I wish you the best of luck and May God Bless You!
Sue
Hi Sue
Thank you a soooo much for your reply! It really mean to me that I am not going crazy...
Actually I have noticed that without meds I was having seizures several days before my period. This was also reported to my doctor. I think he is convinced that it is epilepsy but since he doesn't have a proof, I am still under evaluation. I forgot to say that I am living in a country where epilepsy is still a stigma, unfortunately, since there are not a lot of cases....
As a reason for the seizures, my doctor stated that I have very developed brain or "highly gifted with intelligence" and under certain circumstances like high stress, period etc., it makes the triggers.
I had an eeg with sleep deprivation also but again everything was clear. To note here, I was already taking the meds. And also it is a true that sometimes I wake up more tired than before sleep (especially after a longer sleep than usual which I also found that is triggering my seizures).
I can't cut off my hormones because I am taking them for more than 15 years and I almost don't have thyroid gland. At the beginning I was left without them, but it just worsen the situation and I was like a zombie...I can't function without them.
I will take your advices especially for the cbd oil and ask my doctor to try it. I really hope something will work better for me.
I wish u all the best and May God be with all of us!
Ivy
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
Hey Ivy -- A good/experienced neuro is able to diagnose epilepsy (at least provisionally) from the symptoms. A positive EEG can confirm an epilepsy diagnosis, but a negative one doesn't rule it out. Your symptoms (burning smell, sense of nausea, etc.) are classic for temporal lobe epilepsy. as for the negative EEG -- sometimes seizures are too transient or occur too deep in the brain to appear on an EEG.
Your doctor's comments about seizures being caused by being highly intelligent sounds like a load of bunk. Whether he’s referring to non-epileptic seizures or epileptic seizures, stress can be a trigger, but intelligence has nothing to do with it. Not saying you aren't smart, just saying I’m wondering about your doctor’s “intelligence.”
Anyway, welcome to the forum!
Hey Ivy -- A good/experienced neuro is able to diagnose epilepsy (at least provisionally) from the symptoms. A positive EEG can confirm an epilepsy diagnosis, but a negative one doesn't rule it out. Your symptoms (burning smell, sense of nausea, etc.) are classic for temporal lobe epilepsy. as for the negative EEG -- sometimes seizures are too transient or occur too deep in the brain to appear on an EEG.
Your doctor's comments about seizures being caused by being highly intelligent sounds like a load of bunk. Whether he’s referring to non-epileptic seizures or epileptic seizures, stress can be a trigger, but intelligence has nothing to do with it. Not saying you aren't smart, just saying I’m wondering about your doctor’s “intelligence.”
Anyway, welcome to the forum!
Hi Nakamova
Thanks for your reply. I also didn't want to sound as I am smart, because I even don't know if I am really that
. Just seeking help for me since I really don't have a lot of choices for a specialist in this field here. With the meds I am ok for now but they are ruining my overall health since my liver enzymes are way too high after I started with them....I will try to seek a specialist in the nearby countries because on long term I cannot function like this.Thanks again a lot!