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sasha_featherAppointment: advanced practice nurse Practitioner AR, Neurology at UW. (about 2 weeks ago). Unlocked post temporarily; will be locked at some pt. in future.
cut for length
1. AR started this appointment with Arguing / schooling me about inhaler use.
"My vision was swimming so I thought I'd try my inhaler." This is my last memory before the seizure, I've said this several times while reporting my story to people.
AR: "Actually you shouldn't use an inhaler for visual aura. Asthma does not cause visual aura."
Me: confused…. "Okay…"
AR: "It's a placebo."
Me: silent but wondering why a placebo is bad….? Feeling defensive. In the past, my inhaler has helped me when I get visual aura. This may be because i am having asthma and migraine at the same time, right? It does not seem so far-fetched to me.
2. AR Saying I didn't (for sure) have a seizure.
Katherine (my friend): The doctors at St. Mary's seemed really certain.
AR: Well I don't know them. and we use the criteria from the Epilepsy Study Group" (or something). "This could have been a spell or a drop attack."
Me: feeling very upset, confused, and like she didn't watch the video.
My first memory from waking up in the hospital,
is the doctor there saying "S you are in the hospital, you had a seizure."
Me: A seizure! Wow!
Him: We looked at the security cam video and you were convulsing.
The notes from St. Mary's said "witnessed, tonic clonic seizure."
I felt that she was being rude towards these other doctors who took very good care of me. She was arguing with their diagnosis, but why? What does calling it a spell or drop attack have to do with me? Why are we talking about terminology?
Maybe this is my own stigma but calling it a "spell" seems to minimize what I went through. I was in the hospital for 3 days! I hit my head so hard I broke it!
So, I don't understand why she was so strict about nomenclature, but, I also wasn't quite sure why I was so upset until I realized something. That first doctor in the hospital was the only one to be like, "here is what happened." And he said seizure. I trusted him. With an impaired memory, I built up a little story that I told myself: "you had a seizure. You hit your head and got a concussion. You are (were) in the hospital. You are OK." Then repeated that.
I felt like AR undermined not only that doctor, who I remembered as kind and competent, but she also undermined that little story I told myself. I suppose that part is not her fault. But the common, everyday use of the word seizure is one that people understand and take seriously, and is one that I will continue to use for my story.
3. Diagnosis.
The Hospital doctors thought that this could be caused by a UTI, or a change in my brain meds that I recently tried– I started duloxitine, and stopped it due to nausea. They treated for a UTI with antibiotics, but cultured nothing, so it's another unknown.
But, a hospital doctor said, "Anything that stresses the body or brain could cause a seizure." I found this relaxing to hear. "It could literally be anything" is consistent with my life experiences as a chronically ill person. Bodies are mysterious. Sometimes looking for the cause has steeply diminishing returns. I confirmed with the neurosurgeon that it might never be possible to determine the cause.
When doing some casual reading of the internet, it does seem true that anything can cause a seizure, including infections, tumors, high or low blood pressure, high or low blood sugar, lack of sleep, alcoholism, etc.
AR seems to think the "spell" was one of three things: Epileptic seizure, PNES (Psychogenic non-epileptic seizure), or cardiac syncope.
She would like to change my medication from lacosamide to Keppra. The reasoning here is that: If you don’t seize with the Keppra, it’s a sign you have epilepsy, if you do, it’s more likely PNES. While Lacosamide would protect against both of these conditions, Keppra only protects against epileptic seizures. How I think this works is that Lacosamide has a mood stabilizer in it. The docs at the hospital really wanted to get me off my previous antidepressant, under I think the idea that it could have caused the seizure. This is why having a med that does both (anti-seizure, mood stabilizer), makes sense to prescribe.
This is complicated, and I turned it over and over again in my head. This is using a medication as a means to a diagnosis; furthermore, it would put me at risk of another seizure – in fact it depends upon me having another seizure, if the condition is PNES.
There may be benefits to diagnosis, I of course understand that. But if we need a diagnosis (which requires a seizure) I would rather do it in a controlled environment such as a hospital, rather than out in the world, where I could hit my head again. A video EEG appears to be the gold standard here. I have talked to several friends whom I trust and they seem to agree.
I tried to convey to my PCP Lauren that I am not focused on diagnosis at this time. My primary goal is to stay safe. While she seemed to understand me, she was unwilling or unable to go against AR, and said she was uncomfortable prescribing anti-seizure medications. Lauren: "AR notes that she does not want a second head injury, but having the diagnostic clarification is very important for how to treat you for your recent episodes and to protect you going forward." Lauren: "I will add that this diagnostic clarification is also important for a number of other reasons, including whether we need to avoid medications that may lower the threshold for seizures (certain antibiotics, anti-nausea meds, anxiety/depression meds, etc.' [honestly this is all so enraging\
AR and now Lauren remain focused on diagnosis and do not acknowledge that I have legitimate fears here. Lauren says I could "make the switch to Keppra and monitor." I am not sure who is doing the monitoring here; I have only myself, and I have memory impairment and cognitive impairment from the concussion.
In the absence of trust-worthy advice, I am staying on Lacosamide for the time being, and staying off citalopram, which is what the St. Mary's doctors recommended. Lauren said, well, you'll eventually run out of Lacosamide, right? That is kind of a yikes comment in retrospect because it reads a bit threatening, though I don't think she meant it that way.
The idea that this could be a "one-off" seizure of unknown cause, or if there could be other causes, is not discussed. Or if they were, I don't remember.
4. PNES
When doctors don't want to say "unknown cause", they will say that a seizure was generated by the psyche. Psychogenic. (what's the proposed mechanism for this?)
What they really mean is that people who had a seizure, and also had a mental illness, were prescribed therapy, and then stopped having seizures. Correlation is not causation.
I almost went down a deep rabbit hole on this one, looking at PubMed articles at 4 AM, wondering about randomized controlled trials and if they looked for previous brain injuries as a possible cause of both mental illness and seizures, then realized I was spiraling, and made myself stop. So I gotta let this one go for the time being.
5. AR not knowing how to deal with a concussed patient, despite working in neurology.
Katherine: Yeah at one point she was just listing medications!
The appointment was about 5 weeks out from my head injury (skull fracture! hematoma!). Now, able to write this all out, I am about 7 weeks out and have improved a lot according to my friends.
6. The birth control convo
AR: are you currently sexually active?
Me: No.
AR: What do you use for birth control?
Me (confused, wasn't this just asked and answered?): um… lesbianism?
KCB was especially aggrieved by this one, and said later: "What they should ask is "are you having sex that could possibly result in a pregnancy."
7. I almost fucking forgot this exchange:
Me: Do you think my facial pain could be connected to the seizure?
AR: Ok, have you ever heard of Trigeminal Neuralgia?
Me: Uh yeah... I've had it (a form of it) for 20 years....
I am unsure if she answered my question but I think it was no, not connected.
8. What would help?
A doctor that I trust!
I am unsure what to do. I suppose I will make phone calls tomorrow. It did help a lot to write this out. If I have enough Lacosamide I can just wait a little longer to deal with some of it.
cut for length
1. AR started this appointment with Arguing / schooling me about inhaler use.
"My vision was swimming so I thought I'd try my inhaler." This is my last memory before the seizure, I've said this several times while reporting my story to people.
AR: "Actually you shouldn't use an inhaler for visual aura. Asthma does not cause visual aura."
Me: confused…. "Okay…"
AR: "It's a placebo."
Me: silent but wondering why a placebo is bad….? Feeling defensive. In the past, my inhaler has helped me when I get visual aura. This may be because i am having asthma and migraine at the same time, right? It does not seem so far-fetched to me.
2. AR Saying I didn't (for sure) have a seizure.
Katherine (my friend): The doctors at St. Mary's seemed really certain.
AR: Well I don't know them. and we use the criteria from the Epilepsy Study Group" (or something). "This could have been a spell or a drop attack."
Me: feeling very upset, confused, and like she didn't watch the video.
My first memory from waking up in the hospital,
is the doctor there saying "S you are in the hospital, you had a seizure."
Me: A seizure! Wow!
Him: We looked at the security cam video and you were convulsing.
The notes from St. Mary's said "witnessed, tonic clonic seizure."
I felt that she was being rude towards these other doctors who took very good care of me. She was arguing with their diagnosis, but why? What does calling it a spell or drop attack have to do with me? Why are we talking about terminology?
Maybe this is my own stigma but calling it a "spell" seems to minimize what I went through. I was in the hospital for 3 days! I hit my head so hard I broke it!
So, I don't understand why she was so strict about nomenclature, but, I also wasn't quite sure why I was so upset until I realized something. That first doctor in the hospital was the only one to be like, "here is what happened." And he said seizure. I trusted him. With an impaired memory, I built up a little story that I told myself: "you had a seizure. You hit your head and got a concussion. You are (were) in the hospital. You are OK." Then repeated that.
I felt like AR undermined not only that doctor, who I remembered as kind and competent, but she also undermined that little story I told myself. I suppose that part is not her fault. But the common, everyday use of the word seizure is one that people understand and take seriously, and is one that I will continue to use for my story.
3. Diagnosis.
The Hospital doctors thought that this could be caused by a UTI, or a change in my brain meds that I recently tried– I started duloxitine, and stopped it due to nausea. They treated for a UTI with antibiotics, but cultured nothing, so it's another unknown.
But, a hospital doctor said, "Anything that stresses the body or brain could cause a seizure." I found this relaxing to hear. "It could literally be anything" is consistent with my life experiences as a chronically ill person. Bodies are mysterious. Sometimes looking for the cause has steeply diminishing returns. I confirmed with the neurosurgeon that it might never be possible to determine the cause.
When doing some casual reading of the internet, it does seem true that anything can cause a seizure, including infections, tumors, high or low blood pressure, high or low blood sugar, lack of sleep, alcoholism, etc.
AR seems to think the "spell" was one of three things: Epileptic seizure, PNES (Psychogenic non-epileptic seizure), or cardiac syncope.
She would like to change my medication from lacosamide to Keppra. The reasoning here is that: If you don’t seize with the Keppra, it’s a sign you have epilepsy, if you do, it’s more likely PNES. While Lacosamide would protect against both of these conditions, Keppra only protects against epileptic seizures. How I think this works is that Lacosamide has a mood stabilizer in it. The docs at the hospital really wanted to get me off my previous antidepressant, under I think the idea that it could have caused the seizure. This is why having a med that does both (anti-seizure, mood stabilizer), makes sense to prescribe.
This is complicated, and I turned it over and over again in my head. This is using a medication as a means to a diagnosis; furthermore, it would put me at risk of another seizure – in fact it depends upon me having another seizure, if the condition is PNES.
There may be benefits to diagnosis, I of course understand that. But if we need a diagnosis (which requires a seizure) I would rather do it in a controlled environment such as a hospital, rather than out in the world, where I could hit my head again. A video EEG appears to be the gold standard here. I have talked to several friends whom I trust and they seem to agree.
I tried to convey to my PCP Lauren that I am not focused on diagnosis at this time. My primary goal is to stay safe. While she seemed to understand me, she was unwilling or unable to go against AR, and said she was uncomfortable prescribing anti-seizure medications. Lauren: "AR notes that she does not want a second head injury, but having the diagnostic clarification is very important for how to treat you for your recent episodes and to protect you going forward." Lauren: "I will add that this diagnostic clarification is also important for a number of other reasons, including whether we need to avoid medications that may lower the threshold for seizures (certain antibiotics, anti-nausea meds, anxiety/depression meds, etc.' [honestly this is all so enraging\
AR and now Lauren remain focused on diagnosis and do not acknowledge that I have legitimate fears here. Lauren says I could "make the switch to Keppra and monitor." I am not sure who is doing the monitoring here; I have only myself, and I have memory impairment and cognitive impairment from the concussion.
In the absence of trust-worthy advice, I am staying on Lacosamide for the time being, and staying off citalopram, which is what the St. Mary's doctors recommended. Lauren said, well, you'll eventually run out of Lacosamide, right? That is kind of a yikes comment in retrospect because it reads a bit threatening, though I don't think she meant it that way.
The idea that this could be a "one-off" seizure of unknown cause, or if there could be other causes, is not discussed. Or if they were, I don't remember.
4. PNES
When doctors don't want to say "unknown cause", they will say that a seizure was generated by the psyche. Psychogenic. (what's the proposed mechanism for this?)
What they really mean is that people who had a seizure, and also had a mental illness, were prescribed therapy, and then stopped having seizures. Correlation is not causation.
I almost went down a deep rabbit hole on this one, looking at PubMed articles at 4 AM, wondering about randomized controlled trials and if they looked for previous brain injuries as a possible cause of both mental illness and seizures, then realized I was spiraling, and made myself stop. So I gotta let this one go for the time being.
5. AR not knowing how to deal with a concussed patient, despite working in neurology.
Katherine: Yeah at one point she was just listing medications!
The appointment was about 5 weeks out from my head injury (skull fracture! hematoma!). Now, able to write this all out, I am about 7 weeks out and have improved a lot according to my friends.
6. The birth control convo
AR: are you currently sexually active?
Me: No.
AR: What do you use for birth control?
Me (confused, wasn't this just asked and answered?): um… lesbianism?
KCB was especially aggrieved by this one, and said later: "What they should ask is "are you having sex that could possibly result in a pregnancy."
7. I almost fucking forgot this exchange:
Me: Do you think my facial pain could be connected to the seizure?
AR: Ok, have you ever heard of Trigeminal Neuralgia?
Me: Uh yeah... I've had it (a form of it) for 20 years....
I am unsure if she answered my question but I think it was no, not connected.
8. What would help?
A doctor that I trust!
I am unsure what to do. I suppose I will make phone calls tomorrow. It did help a lot to write this out. If I have enough Lacosamide I can just wait a little longer to deal with some of it.
