Alternative Theories and/or Treatments of simple partial seizures
September 24, 2020 10:41 AM Subscribe
YANMD. I think both my daughter and I experience simple partial seizures. If not, what do you think they may be? In any case, what steps might you take to reduce our "episodes"? More below the fold.
I never told anyone about my "episodes" until my teenage daughter started to describe the same phenomena. I will try to describe them to the best of my ability, but sometimes I have a dissociative state in which I feel like I am having a premonition - I usually have a vision in my head of a person or event and there is particular song that accompanies it - and it make me nauseous to the point I have to stop what I am doing until it passes. It doesn't last for very long, 30 seconds or a minute. I feel very unsettled. I have had them for as long as I can remember but they are infrequent enough I've never bothered to be concerned about them. (Also - I didn't want to be looked sideways for saying I can see thing and have premonitions).
Now my teen daughter is describing the same thing to me. Googling it seems to suggest that they could be simple partial seizures (I am guessing psychic variety) - also possibly related to hormones (catamenial epilepsy). Under normal pre-covid time I would bring this up with her doctor, and I assume the doctor would say - "huh - that's weird - let me know if it impacts routine functioning." Well my daughter has been complaining about their frequency lately. (Four in one day to my four in one year). I am at the point that I am willing to take the first step and ask random internet strangers for advice.
My first question is what are the other possible explanations for these episodes if any? And then, what would you do to reduce or treat them? Things I am planning on doing:
- keeping a diary of them for her - and maybe myself but I am less concerned about me
- tracking food/sleep/menstrual cycle for patterns
Even if covid weren't a thing right now, I'd be hesitant to rush to a doctor for this (If you think otherwise, why is that?) I will bring it up the next she has her annual exam. In the meantime, do you have other suggestions? TIA
I never told anyone about my "episodes" until my teenage daughter started to describe the same phenomena. I will try to describe them to the best of my ability, but sometimes I have a dissociative state in which I feel like I am having a premonition - I usually have a vision in my head of a person or event and there is particular song that accompanies it - and it make me nauseous to the point I have to stop what I am doing until it passes. It doesn't last for very long, 30 seconds or a minute. I feel very unsettled. I have had them for as long as I can remember but they are infrequent enough I've never bothered to be concerned about them. (Also - I didn't want to be looked sideways for saying I can see thing and have premonitions).
Now my teen daughter is describing the same thing to me. Googling it seems to suggest that they could be simple partial seizures (I am guessing psychic variety) - also possibly related to hormones (catamenial epilepsy). Under normal pre-covid time I would bring this up with her doctor, and I assume the doctor would say - "huh - that's weird - let me know if it impacts routine functioning." Well my daughter has been complaining about their frequency lately. (Four in one day to my four in one year). I am at the point that I am willing to take the first step and ask random internet strangers for advice.
My first question is what are the other possible explanations for these episodes if any? And then, what would you do to reduce or treat them? Things I am planning on doing:
- keeping a diary of them for her - and maybe myself but I am less concerned about me
- tracking food/sleep/menstrual cycle for patterns
Even if covid weren't a thing right now, I'd be hesitant to rush to a doctor for this (If you think otherwise, why is that?) I will bring it up the next she has her annual exam. In the meantime, do you have other suggestions? TIA
Four episodes in one day of severe nausea and dissociation sounds like a significant enough problem to talk to a doctor about, sooner rather than later. If this was happening to me I would absolutely make an appointment with my doctor.
posted by mekily at 10:51 AM on September 24, 2020 [23 favorites]
posted by mekily at 10:51 AM on September 24, 2020 [23 favorites]
Almost all doctors are in some way emailable at the moment, and most are doing virtual visits too. Please ask her doctor as soon as you can.
posted by brainmouse at 10:57 AM on September 24, 2020 [3 favorites]
posted by brainmouse at 10:57 AM on September 24, 2020 [3 favorites]
Response by poster: Thanks for the encouragement to speak to a doctor right away. Will do. It'd be helpful to hear responses to the other questions.
posted by turtlefu at 11:00 AM on September 24, 2020
posted by turtlefu at 11:00 AM on September 24, 2020
Seizures are not great for your brain, according to this article from the American Journal of Neuroradiology.
If your reluctance to talk to a doctor comes from a fear that this condition seems “strange” or unbelievable, I can promise you that neurologists deal with much stranger things every day. You don’t want to find that this condition has gotten worse one day when your daughter is behind the wheel of a car, for instance.
In terms of your other questions, neurologists sometimes treat seizures with medication, diet, or by identifying triggers such as getting overheated or overtired. But you really need a qualified expert to help you pin those things down and you are doing the right thing by keeping a diary of potential factors.
posted by corey flood at 11:05 AM on September 24, 2020 [3 favorites]
If your reluctance to talk to a doctor comes from a fear that this condition seems “strange” or unbelievable, I can promise you that neurologists deal with much stranger things every day. You don’t want to find that this condition has gotten worse one day when your daughter is behind the wheel of a car, for instance.
In terms of your other questions, neurologists sometimes treat seizures with medication, diet, or by identifying triggers such as getting overheated or overtired. But you really need a qualified expert to help you pin those things down and you are doing the right thing by keeping a diary of potential factors.
posted by corey flood at 11:05 AM on September 24, 2020 [3 favorites]
These sure sound like focal seizures, but without knowing your medical history, medication regimen, etc., there's no way to get very diagnostic about a diagnosis or possible differentials. You both may be experiencing some variation on the theme of complex migraines, which come in several baffling flavors and are worth checking out. Getting these symptoms on the record, and letting a practitioner track any inapparent signs that accompany these episodes over time, is a big part of why the internet won't be able to help you much here.
keeping a diary of them for her - and maybe myself but I am less concerned about me
This is great and something to begin doing now, for both of you, but please do that alongside seeking medical advice. If you ever drive or operate heavy machinery etc., you should show yourself the same concern that you show your daughter.
tracking food/sleep/menstrual cycle for patterns
Sure, but don't do this in lieu of medical consultation.
posted by late afternoon dreaming hotel at 11:06 AM on September 24, 2020 [6 favorites]
keeping a diary of them for her - and maybe myself but I am less concerned about me
This is great and something to begin doing now, for both of you, but please do that alongside seeking medical advice. If you ever drive or operate heavy machinery etc., you should show yourself the same concern that you show your daughter.
tracking food/sleep/menstrual cycle for patterns
Sure, but don't do this in lieu of medical consultation.
posted by late afternoon dreaming hotel at 11:06 AM on September 24, 2020 [6 favorites]
Tracking when they occur is obviously a great step because it gives you data, however, I would make an appointment with her pediatrician or GP right away. They will refer you to a specialist (almost certainly a neurologist) and give you suggestions on what you should keep an eye on before her appointment so you bring as much relevant information to the specialist as you can.
posted by lydhre at 11:10 AM on September 24, 2020
posted by lydhre at 11:10 AM on September 24, 2020
Best answer: Here's an anecdotal data point for you. I asked a similar question a while back. We went through many steps:
-- Pediatrician said "it sounds like seizures" and referred to a neurologist.
-- Had to go through insurance hoop of seeing a GP first. GP said, "Maybe it's anxiety. Keep track of food/water/stress/sleep/etc. and see if it keeps happening.
-- It kept happening. GP referred to neurologist.
-- Neurologist said "sounds like seizures" and referred us to an MRI to rule out brain tumors or other stuff like that. MRI was clear. (Though, hilariously, they told us they couldn't get great pictures because my kid had braces at the time.)
-- Neurologist referred us to the single place (!!!) in our large city that does pediatric EEG, which happened to be at the local children's hospital. There was a multi-month wait for this appointment.
-- Kid kept having the symptoms. We went to the ER at the children's hospital after one event, hoping this might lead to further info while we were still awaiting our EEG appointment. No dice. Children's hospital said they don't even really run further testing via the ER unless the seizure is longer than 30 minutes straight.
-- Meanwhile, neurologist said "It could be cardiac" and we went to a pediatric cardiac specialist who gave kid a bunch of tests, all of which were normal. However, cardiologist said "These are intermittment, so I think we're just not catching it happening." Prescribed us a monitor that could be worn and activated in a particular manner. Because Reasons, we ended up not being able to use this.
-- Eventually had that EEG. Neurologist said "it looks fine, it must be anxiety." This...just didn't sit right, to me or the kid. Did not fit everything else going on with the kid and his life.
-- That EEG appointment, per the children's hospital system, entitled us to an appointment with a neurologist there. When we finally got this appointment -- by now, probably 6 months had passed -- kid had gone a month or so without any symptoms.
-- Neurologist 2 said "I def. think it's seizures, and had I been triaging when you showed up in the system, I would have brought you in immediately. If it happens again, we will admit your kid for 48 hours to do round-the-clock monitoring to try to catch it."
-- And...kid never had another one. That was almost 2 years ago.
My advice to you is yes, keep a spreadsheet of these events (as I did). Time of day, what was happening right before, sleep, stress, diet, even the weather. Just as many data points as you can manage, because you never know what might be useful.
posted by BlahLaLa at 11:23 AM on September 24, 2020 [4 favorites]
-- Pediatrician said "it sounds like seizures" and referred to a neurologist.
-- Had to go through insurance hoop of seeing a GP first. GP said, "Maybe it's anxiety. Keep track of food/water/stress/sleep/etc. and see if it keeps happening.
-- It kept happening. GP referred to neurologist.
-- Neurologist said "sounds like seizures" and referred us to an MRI to rule out brain tumors or other stuff like that. MRI was clear. (Though, hilariously, they told us they couldn't get great pictures because my kid had braces at the time.)
-- Neurologist referred us to the single place (!!!) in our large city that does pediatric EEG, which happened to be at the local children's hospital. There was a multi-month wait for this appointment.
-- Kid kept having the symptoms. We went to the ER at the children's hospital after one event, hoping this might lead to further info while we were still awaiting our EEG appointment. No dice. Children's hospital said they don't even really run further testing via the ER unless the seizure is longer than 30 minutes straight.
-- Meanwhile, neurologist said "It could be cardiac" and we went to a pediatric cardiac specialist who gave kid a bunch of tests, all of which were normal. However, cardiologist said "These are intermittment, so I think we're just not catching it happening." Prescribed us a monitor that could be worn and activated in a particular manner. Because Reasons, we ended up not being able to use this.
-- Eventually had that EEG. Neurologist said "it looks fine, it must be anxiety." This...just didn't sit right, to me or the kid. Did not fit everything else going on with the kid and his life.
-- That EEG appointment, per the children's hospital system, entitled us to an appointment with a neurologist there. When we finally got this appointment -- by now, probably 6 months had passed -- kid had gone a month or so without any symptoms.
-- Neurologist 2 said "I def. think it's seizures, and had I been triaging when you showed up in the system, I would have brought you in immediately. If it happens again, we will admit your kid for 48 hours to do round-the-clock monitoring to try to catch it."
-- And...kid never had another one. That was almost 2 years ago.
My advice to you is yes, keep a spreadsheet of these events (as I did). Time of day, what was happening right before, sleep, stress, diet, even the weather. Just as many data points as you can manage, because you never know what might be useful.
posted by BlahLaLa at 11:23 AM on September 24, 2020 [4 favorites]
Another potential cause could be vasovagal syncope, which is apparently surprisingly common and also unfortunately regularly dismissed by doctors. I had a friend who had had a history of fainting, auras (with nausea) and intermittent weird sensations. It was only diagnosed when she was training to be a cardiac care nurse and she had an episode while her lab partner was giving her a test ECG.
Getting an actual diagnosis may take a bit of a runaround through different specialists, but at least your daughter has your support in knowing she isn't alone. It's probably worth finding out what this is, for your family's health and well-being. In the case of my friend, shortly after her diagnosis she passed out while driving in heavy traffic, and her boyfriend had to grab the wheel to get them off the highway. She now has a pacemaker to manage the condition, which is quite rare for people living with syncope.
posted by scruss at 11:48 AM on September 24, 2020 [1 favorite]
Getting an actual diagnosis may take a bit of a runaround through different specialists, but at least your daughter has your support in knowing she isn't alone. It's probably worth finding out what this is, for your family's health and well-being. In the case of my friend, shortly after her diagnosis she passed out while driving in heavy traffic, and her boyfriend had to grab the wheel to get them off the highway. She now has a pacemaker to manage the condition, which is quite rare for people living with syncope.
posted by scruss at 11:48 AM on September 24, 2020 [1 favorite]
Flashing lights can trigger seizures even in people who probably would not otherwise have developed them (as in the infamous Pokemon Shock incident in 1997).
So it might be worth taking a break from screens for a couple of days to see what happens, and if that has an effect, to make sure other lights in the room are on when she's looking at a screen.
A diagnosis of epilepsy could put extra hurdles in the way of getting a driver's license, as well it should, but if the situation is ambiguous, that's something to bear in mind.
posted by jamjam at 11:57 AM on September 24, 2020
So it might be worth taking a break from screens for a couple of days to see what happens, and if that has an effect, to make sure other lights in the room are on when she's looking at a screen.
A diagnosis of epilepsy could put extra hurdles in the way of getting a driver's license, as well it should, but if the situation is ambiguous, that's something to bear in mind.
posted by jamjam at 11:57 AM on September 24, 2020
Just wanted to point out that if you are both women its very worth keeping a records of dates and times and any patterns you can track. Doctors don't actually like solving mysteries and will diagnose you with anxiety in order to get you and your hard to solve puzzles out of their office. If she knows something is wrong with her body stick to your guns and try and get her the help she needs.
posted by edbles at 2:14 PM on September 24, 2020
posted by edbles at 2:14 PM on September 24, 2020
I think a lot of the answers above understand or are touching on this, but I want to say explicitly that focal seizures can generalize — i.e., someone with focal epilepsy can have a seizure that turns into a “Hollywood”-style convulsive seizure involving broader regions of the brain than the focal origin. In addition, focal seizures can in themselves cause or be symptoms of other problems. This is part of why no reputable neurologist is going to wait to investigate frequent suspected focal seizures because symptoms aren’t “impacting daily functioning,” and why you both should not delay seeking medical advice.
(Also, like the rest of the Internet I have and have heard nightmare stories of trying to get a diagnosis for vague neurological symptoms. I also have a kid who was put on a 20-minute EEG by a semi-skeptical physician for possible epilepsy and diagnosed almost immediately. You never know, and I hate to see the worst case scenarios scaring people away from seeking qualified help for troubling symptoms.)
Good luck!
posted by LadyInWaiting at 2:30 PM on September 24, 2020 [4 favorites]
(Also, like the rest of the Internet I have and have heard nightmare stories of trying to get a diagnosis for vague neurological symptoms. I also have a kid who was put on a 20-minute EEG by a semi-skeptical physician for possible epilepsy and diagnosed almost immediately. You never know, and I hate to see the worst case scenarios scaring people away from seeking qualified help for troubling symptoms.)
Good luck!
posted by LadyInWaiting at 2:30 PM on September 24, 2020 [4 favorites]
You both may be experiencing some variation on the theme of complex migraines, which come in several baffling flavors and are worth checking out.
This made me think of an ocular migraine/migraine with aura.
I think it's worth asking a doctor to be sure.
posted by PhoBWanKenobi at 4:14 PM on September 24, 2020 [1 favorite]
This made me think of an ocular migraine/migraine with aura.
I think it's worth asking a doctor to be sure.
posted by PhoBWanKenobi at 4:14 PM on September 24, 2020 [1 favorite]
Nthing all the recommendations to speak with a neurologist. Ideally a pediatric neurologist, but if not, an epileptologist (they do a lot of peds/adolescent neurology as part of their fellowship training). Ask for a tele-consult if covid is a concern.
If you are having trouble finding someone and are located in the US, MeMail me.
posted by basalganglia at 4:33 PM on September 24, 2020 [5 favorites]
If you are having trouble finding someone and are located in the US, MeMail me.
posted by basalganglia at 4:33 PM on September 24, 2020 [5 favorites]
PS If you or your kid drive, you/they may need to stop until these episodes are resolved.
Relevant State Law Database.
Another reason to get an answer quickly, covid or no.
(NOT MEDICAL ADVICE)
posted by basalganglia at 4:39 PM on September 24, 2020 [1 favorite]
Relevant State Law Database.
Another reason to get an answer quickly, covid or no.
(NOT MEDICAL ADVICE)
posted by basalganglia at 4:39 PM on September 24, 2020 [1 favorite]
My friend's kid had seizures, and they were violent. His doctor suggested he be put on anti-seizure medication.
His father asked, "What are the side effects?"
"Seizures."
"Well, if that happens he can stop."
"No, that could cause seizures."
His father took the kid home, watched him eat, and put him on a diet that wasn't all junk food. He hasn't had any more seizures.
I'd say to get all the medical help you can, but not to forget that diet and lifestyle make a big difference.
posted by AugustusCrunch at 7:17 PM on September 26, 2020
His father asked, "What are the side effects?"
"Seizures."
"Well, if that happens he can stop."
"No, that could cause seizures."
His father took the kid home, watched him eat, and put him on a diet that wasn't all junk food. He hasn't had any more seizures.
I'd say to get all the medical help you can, but not to forget that diet and lifestyle make a big difference.
posted by AugustusCrunch at 7:17 PM on September 26, 2020
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