Should I see a neurologist?
September 2, 2018 12:24 AM
And if so, how do I get them to actually listen to me?
Sorry, it's a long one.
Background: strong family history of adult-onset epilepsy. My mom has epilepsy (with full grand mal seizures), along with 2 of her siblings and potentially a cousin of mine. We have absolutely no history of migraines. No, really, no one in the family has had a migraine. Not even one.
With that said, for the past few years I have had very occasional migraine auras. No actual painful migraine. I get the visual disturbance in the center of my vision that expands into these flashing dancing zigzag zag lines, and maybe tunnel vision. It mainly happens in classroom settings. I typically take an advil afterward and do not get a headache. Not a big deal, and it hasn't happened very often. I have never had a migraine headache, just these weird auras.
The other day, however, I was sitting in class when suddenly I developed a gray blind spot, like a cloud spreading over my vision. It happened quickly and then broke up into these smaller blind spots, with what looked like white glowing floaters dancing around the periphery. It lasted maybe 20 seconds, and I got a mild headache a couple hours later. Also of note: I had had mild pain when I moved that eye for a couple days beforehand that cleared up after this episode. Scared the shit out of me, though. I went to the health center, where they checked my eyes and did a basic neurological exam and said I was fine. I was still nervous, so I called an eye doctor. They said it was a retinal migraine and not to worry about it.
It probably is a migraine. But I was reading about the connection between migraine auras and epilepsy and I'm wondering if I should have it looked into further. The aura is always on one side (the left) and I never get nausea or light sensitivity.
Also of note: I get very occasional deja vu, jamais vu, and derealization. The latter 2 were diagnosed as a panic disorder, but it was always very strange. I'd be sitting somewhere (mainly a classroom) and all of a sudden I would look around and it would be like I had never seen the room before. Then suddenly I would feel like the room was just falling away from me, and I'd hit with the most horrible wave of fear I have ever felt. So that was fun. It happened a lot for a while, but once I learned it was probably "just"anxiety the panic part got a lot better, though I'd still get derealization. That has improved a lot the past couple of years, though I'm not sure why.
The deja vu was more straight forward: I would be doing something, and all of a sudden I would be struck that I had seen it before, most likely in a dream. I can practically remember seeing it. It's very surreal. It used to happen all the time as a kid . It happens less now, though it happened twice this summer.
I just don't want to go to a neurologist and be told it's migraines and sent home. I'm young, female, and look wildly healthy. I am used to being dismissed by doctors, and I don't want to be treated like I'm overreacting. It is probably nothing. But it's also weird because absolutely none of my relatives get migraines like this. My parents are worried I'm having seizures and they're afraid of me driving and they really want me to see a neurologist because of the family history.
I understand the overwhelming consensus will be to see a neurologist. Okay. So if I go, what do I ask? What do I ask for? How do I advocate for myself?
Sorry, it's a long one.
Background: strong family history of adult-onset epilepsy. My mom has epilepsy (with full grand mal seizures), along with 2 of her siblings and potentially a cousin of mine. We have absolutely no history of migraines. No, really, no one in the family has had a migraine. Not even one.
With that said, for the past few years I have had very occasional migraine auras. No actual painful migraine. I get the visual disturbance in the center of my vision that expands into these flashing dancing zigzag zag lines, and maybe tunnel vision. It mainly happens in classroom settings. I typically take an advil afterward and do not get a headache. Not a big deal, and it hasn't happened very often. I have never had a migraine headache, just these weird auras.
The other day, however, I was sitting in class when suddenly I developed a gray blind spot, like a cloud spreading over my vision. It happened quickly and then broke up into these smaller blind spots, with what looked like white glowing floaters dancing around the periphery. It lasted maybe 20 seconds, and I got a mild headache a couple hours later. Also of note: I had had mild pain when I moved that eye for a couple days beforehand that cleared up after this episode. Scared the shit out of me, though. I went to the health center, where they checked my eyes and did a basic neurological exam and said I was fine. I was still nervous, so I called an eye doctor. They said it was a retinal migraine and not to worry about it.
It probably is a migraine. But I was reading about the connection between migraine auras and epilepsy and I'm wondering if I should have it looked into further. The aura is always on one side (the left) and I never get nausea or light sensitivity.
Also of note: I get very occasional deja vu, jamais vu, and derealization. The latter 2 were diagnosed as a panic disorder, but it was always very strange. I'd be sitting somewhere (mainly a classroom) and all of a sudden I would look around and it would be like I had never seen the room before. Then suddenly I would feel like the room was just falling away from me, and I'd hit with the most horrible wave of fear I have ever felt. So that was fun. It happened a lot for a while, but once I learned it was probably "just"anxiety the panic part got a lot better, though I'd still get derealization. That has improved a lot the past couple of years, though I'm not sure why.
The deja vu was more straight forward: I would be doing something, and all of a sudden I would be struck that I had seen it before, most likely in a dream. I can practically remember seeing it. It's very surreal. It used to happen all the time as a kid . It happens less now, though it happened twice this summer.
I just don't want to go to a neurologist and be told it's migraines and sent home. I'm young, female, and look wildly healthy. I am used to being dismissed by doctors, and I don't want to be treated like I'm overreacting. It is probably nothing. But it's also weird because absolutely none of my relatives get migraines like this. My parents are worried I'm having seizures and they're afraid of me driving and they really want me to see a neurologist because of the family history.
I understand the overwhelming consensus will be to see a neurologist. Okay. So if I go, what do I ask? What do I ask for? How do I advocate for myself?
I am used to being dismissed by doctors, and I don't want to be treated like I'm overreacting.
Totally valid concern. Is there someone you can bring with you (preferably with a medical background) who can be a rational (not emotional) advocate for you? It is stupid, but it is also the only way I am aware to counter-act the doctor’s bias.
posted by saucysault at 3:34 AM on September 2, 2018
Totally valid concern. Is there someone you can bring with you (preferably with a medical background) who can be a rational (not emotional) advocate for you? It is stupid, but it is also the only way I am aware to counter-act the doctor’s bias.
posted by saucysault at 3:34 AM on September 2, 2018
Go, especially as I do not see any EEG or MRI mentioned here. I second seeing both an ophthalmologist and a neurologist. As someone who has a history of both seizures and migraines: you ask around locally for a good migraine-competent neurologist. Even if this is “only” migraines, you need to see someone who will not look at that diagnosis as dismissal, help you consider treatments better than Advil, AND have a relationship established for long-term monitoring given your family history. This should not be “if it’s seizures, I get taken seriously [slash take my own symptoms seriously], and if it’s migraines, that’s the end of the story.”
posted by LadyInWaiting at 3:59 AM on September 2, 2018
posted by LadyInWaiting at 3:59 AM on September 2, 2018
Well, that deja vu description sounds exactly like my TLE seizures. Here's the thing though: even with epilepsy, it often can't be clearly diagnosed (unless there is a big structural issue that would show up in a scan.) I'd been having those seizures for my entire life, and it took three week-long in-hospital VEEG sessions for it to show up on monitor because I finally had a seizure while hooked up and they could finally see something out of the ordinary. Otherwise, my brain waves looked 'beautiful' and nothing looked weird on all the scans they did. Even after the diagnosis, I still don't take meds because that weird psychedelic deja vu isnt debilitating and there just doesnt seem to be any point in dealing with the side effects. I havent even been back to my neurologist in 6+ years. But of course that's just my experience with the type of seizures you seem to be describing.
But if you consider your visual auras and migraines and the deja vu experience to be really problematic, then yeah, fight for a diagnosis if it will set your mind at ease, but know that even if the doc takes you seriously, there may be no conclusive answers. At any rate, I'd try to get referred to an epileptologist, not just your everyday Neurologist. I was lucky and got referred to one right away. But to try to set your mind at ease, there's no real actual danger with these types of seizures, so personally I wouldn't worry too much, despite how freaky and creepy they are. But I hope they can help manage your migraines.
posted by thegreatfleecircus at 4:16 AM on September 2, 2018
But if you consider your visual auras and migraines and the deja vu experience to be really problematic, then yeah, fight for a diagnosis if it will set your mind at ease, but know that even if the doc takes you seriously, there may be no conclusive answers. At any rate, I'd try to get referred to an epileptologist, not just your everyday Neurologist. I was lucky and got referred to one right away. But to try to set your mind at ease, there's no real actual danger with these types of seizures, so personally I wouldn't worry too much, despite how freaky and creepy they are. But I hope they can help manage your migraines.
posted by thegreatfleecircus at 4:16 AM on September 2, 2018
Absolutely see a neurologist. The key phrases are "strong family history of epilepsy" and "I have had deja vu/jamais vu episodes since childhood and newer adult-onset auras without actual migraine." No neurologist worth her salt would blow this off. (Sadly, there are plenty of bad neurologists out there. If you MeMail me your location I might be able to help you find someone on the better side of the spectrum.)
posted by basalganglia at 6:48 AM on September 2, 2018
posted by basalganglia at 6:48 AM on September 2, 2018
Can you see your mother's neurologist? They'd have a head start on your condition hopefully and would be more inclined to take you seriously as the family member of a long time patient.
posted by fshgrl at 8:57 AM on September 2, 2018
posted by fshgrl at 8:57 AM on September 2, 2018
A good question to help doctors keep their minds open and share their thinking with you is, "What else could cause these symptoms?"
With both migraine and seizures, as mentioned above, they can legit be very challenging to diagnose with certainty, and the benefits of treatment do not always outweigh the downsides.
posted by latkes at 1:34 PM on September 2, 2018
With both migraine and seizures, as mentioned above, they can legit be very challenging to diagnose with certainty, and the benefits of treatment do not always outweigh the downsides.
posted by latkes at 1:34 PM on September 2, 2018
I’ve actually had good luck with neurologists taking migraines seriously. I haven’t liked them all - but they know the severity of how it feels. So give one or two a try.
No other specialty has had the same track record of listening, in my experience. We weren’t even sure that what I was having, and they were all really helpful.
There are a ton of things to treat with. Migraines don’t all come with pain - which is why I didn’t know what it was. I had some issues with one of the meds, so I stopped it. Now I get shots and it’s great.
posted by crankyrogalsky at 4:29 PM on September 2, 2018
No other specialty has had the same track record of listening, in my experience. We weren’t even sure that what I was having, and they were all really helpful.
There are a ton of things to treat with. Migraines don’t all come with pain - which is why I didn’t know what it was. I had some issues with one of the meds, so I stopped it. Now I get shots and it’s great.
posted by crankyrogalsky at 4:29 PM on September 2, 2018
This is a long shot, but a very good friend of mine is a neurologist, specializing in migraines, in Grand Rapids, MI. If that's at all remotely near you, please feel free to message me and I would be happy to send you her contact information.
posted by augustimagination at 2:28 AM on September 3, 2018
posted by augustimagination at 2:28 AM on September 3, 2018
Something on your side is that neurology is one of the specialties in medicine that seems to attract the brainiacs in the class. Rheumatology is another one. These people love to work a puzzle, and will dig for answers. The really good ones consider a wide spectrum of solutions.
I worked with neurologists for several years, once in an in-patient seizure unit, and was generally impressed with their focus on their patients. This is not a hugely remunerative specialty, and chronic illnesses are not usually interesting to lots of doctors, but neurologists are among the most involved with their patients. Their relationships may last decades and they know what is important to each patient.
If your mother, or cousin perhaps, are happy with their doctors, you might ask them to recommend a doctor in your geographic area. They are probably most familiar with epilepsy-focused sub-specialists, but that does sound appropriate for your family history. But there are very few neurologists outside of research who are so sub-specialized that they would not also be competent with migraine. Best of luck to you.
posted by citygirl at 3:24 AM on September 3, 2018
I worked with neurologists for several years, once in an in-patient seizure unit, and was generally impressed with their focus on their patients. This is not a hugely remunerative specialty, and chronic illnesses are not usually interesting to lots of doctors, but neurologists are among the most involved with their patients. Their relationships may last decades and they know what is important to each patient.
If your mother, or cousin perhaps, are happy with their doctors, you might ask them to recommend a doctor in your geographic area. They are probably most familiar with epilepsy-focused sub-specialists, but that does sound appropriate for your family history. But there are very few neurologists outside of research who are so sub-specialized that they would not also be competent with migraine. Best of luck to you.
posted by citygirl at 3:24 AM on September 3, 2018
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posted by The Underpants Monster at 1:29 AM on September 2, 2018