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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.
no subject
Date: 2023-05-01 05:15 am (UTC)I am sorry that some of the health professionals you are dealing with are being so unhelpful
I completely agree re wanting to avoid risk of further head injury, and can see a strong argument that if you do switch to Keppra, it should be after your existing brain injury has healed up more
(and also other safety precautions, which might include
a) being in hospital
b) having a friend come and stay with you for a few nights
c) wearing one of those padded helmets disguised as hats/beanies designed for people who have seizures to prevent head injury like https://dejay.com.au/ribcap
no subject
Date: 2023-05-01 05:41 am (UTC)no subject
Date: 2023-05-01 05:47 am (UTC)https://ribcap.com/
no subject
Date: 2023-05-01 09:39 pm (UTC)Wow those helmets are so cool.
I’ve had friends who’ve worn the old-fashioned kind that look like wrestling helmets. They work and that’s great but combining impact protection with a tyle is much better.
no subject
Date: 2023-05-01 06:47 am (UTC)Very minor thing from my own life, but I've been having a medical issue for months that doctors dismissed because the tests came back negative for their hypotheses, & then finally I got back one of my old doctors and she was instantly like, oh yeah, here's what you have, it's super common, let me immediately give you meds & a referral. I say this to validate the reality of what you're going through! Not all doctors are created equal, some just do not listen or care, and it's not your fault that these particular medical professionals are behaving badly.
I hope you get someone who listens to you better <333
no subject
Date: 2023-05-01 08:14 am (UTC)It's prescribed for epilepsy/seizures BUT it has side effects that can delay your healing from concussion
no subject
Date: 2023-05-01 09:36 am (UTC)I am also not a fan of the diagnosis by prescription trial right now, or at least that's my gut feeling. As you said, "monitor" in this case doesn't have a useful or safe meaning because you'd just be going about your daily life without someone else there to always monitor for you.
It's so frustrating how hard it is to find a doctor you can trust to be holistic and to actually listen. The sheer amount of work and effort that goes into each visit: YARGH.
no subject
Date: 2023-05-01 09:43 pm (UTC)Yeah I was backed in to a bipolar 2 dx because I responded well to lamatrogine, first FDA approved med for that diagnosis.
no subject
Date: 2023-05-01 12:03 pm (UTC)makes me wonder if you should see a cardiologist? to rule things out/in but also potentially get you into a new diagnostic setting since it sounds like your current docs kinda suck. syncope can look a lot like a seizure (it's what was happening to me when I was fainting a lot about two years ago, and one instance involved convulsions) so even if you/your original docs are sure it's NOT that, it would still get you a new perspective/different docs. idk!
hang in there, bud 💜
no subject
Date: 2023-05-01 04:38 pm (UTC)My friend who I took with me gave me notes but it just says "ask cardiology" LOL. I suppose I can put this in my questions for my PCP.
no subject
Date: 2023-05-01 04:51 pm (UTC)no subject
Date: 2023-05-01 12:48 pm (UTC)no subject
Date: 2023-05-01 04:09 pm (UTC)more later but what she said
no subject
Date: 2023-05-01 07:40 pm (UTC)no subject
Date: 2023-05-01 04:10 pm (UTC)There are some fairly bizarre diagnostic criteria out there, eg you can't get an MS diagnosis until you have had at least two episodes (not even if the first one has absolutely classic MS symptoms), you may or may not get an EDS diagnosis depending on whether a relative already has an EDS diagnosis, etc. So it's possible you're running into one of those with AR and she's refusing to recognise it as a seizure for that reason. At the very least I'd get them to explain that reasoning if you deal with them any more.
With the two drugs and the possibility of seizure, the thinking may be that if they find out which it is overall risk goes down more than if they don't know, even if finding that out includes the risks associated with a seizure. That's asking you to take a risk, so they should be giving you the option to decide, doing a better job of explaining it so you can make an informed choice, and not expecting you to take that in while still experiencing concussion after-effects!
It's definitely something that should be put off until after you're fully recovered, and they should know that. If nothing else, a recent traumatic brain injury introduces an uncontrolled random factor, which invalidates the test.
Okay, that had me crying with laughter.
no subject
Date: 2023-05-02 03:33 pm (UTC)Doctor: And what do you use for birth control?
Patient: Cynthia.
Doctor: I'm not familiar with that one, is it an oral contraceptive?
Patient: Some of the time, yeah.
no subject
Date: 2023-05-02 04:33 pm (UTC)no subject
Date: 2023-05-01 04:16 pm (UTC)I very much hope you can get one.
*hugs*
no subject
Date: 2023-05-01 04:43 pm (UTC)I don't know if me and my medical database access might be helpful, but let me know if there's anything you want me to look into. I was wondering if you have access to the security camera footage and how high-resolution it is, because I did read something in my searches so far about video footage of the seizure being useful in doing a differential diagnosis between epileptic seizures and PNES.
no subject
Date: 2023-05-01 04:54 pm (UTC)They are talking about video EEG:
https://www.epilepsy.com/diagnosis/eeg/video-eeg
You have to have leads hooked up to your head; they induce a seizure and record it.
I'm not sure if the store video even still exists or how to get it. :(
no subject
Date: 2023-05-01 05:05 pm (UTC)I don't have any practical advice, only hugs and validation for you, because it should not be like this. at all. I hope that you continue to recover and are able to stay safe while doing so.
no subject
Date: 2023-05-01 05:07 pm (UTC)I was curious about something so I looked up Keppra vs. Lacosamide on Amazon Pharmacy. Generic Keppra without insurance is $10/month. Generic lacosamide is either $81/month or $300/month (they show the $300/month price and then note that with Amazon Prime you can get it for $81, who even knows). The generic version of Lacosamide only became available a year ago.
So my theory on this: the insurer wants them to try you on Keppra first, because it's an older, cheaper drug, and they will approve lacosamide if Keppra doesn't work for you. My further theory is that this was a much stricter policy until last year (when the generic arrived for lacosamide) and the nurse internalized the idea that there was a medical validity to putting everyone on Keppra to see if it worked.
It seems like your reasons for preferring lacosamide are super valid, and I'm sorry this nurse is being useless.
FYI I have a former elementary school classmate who is both a neurologist and a psychiatrist now, working in Madison. No idea if he's any good, though, or if he's in your network. He was a pretty good elementary school classmate, though. https://www.ssmhealth.com/find-a-doctor/doctor-details/frederick-j-langheim-md
no subject
Date: 2023-05-02 07:11 pm (UTC)I would definitely push against switching to the Keppra. Even if the Keppra does work... that doesn't mean you have epilepsy! As you said, it could be a one-off. Risking another seizure and the risk of a one-off being read as epilepsy are both things that need to be taken into consideration. Also, the fact that the lacosamide is doing double duty is important -- you don't want to switch to a medication that will, overall, increase your med load.
I don't know much about PNES, but the name would indicate... a rather large amount of psychological pain kinda short-circuiting your brain and causing a seizure. And that feels very much like the dismissive "it's all in your head" bullshit that you get with a lot of doctors when faced with patients with chronic illness. I would ask for more information about their opinions of PNES before allowing that to be given as a diagnosis.
I get that, in the case of seizures, it's important to know the cause of things. But, otoh, this is the first time you've had a seizure, right? You've been told it could possibly be a one-off. Yes, monitoring the situation does risk another seizure. But, if I were in your shoes, forcing me to commit to a diagnosis that requires heavy duty life-long meds before knowing if this is something that will happen again would make me very hesitant. If you have another seizure, you'll know that it's something that you need a legit, set-in-stone diagnosis for. But, since we have no idea whether this is a one-off or not, prescribing lacosamide for its mood stabilizing functionality seems like it's the safest bet. Lacosamide would limit the chance of having more seizures if you have epilepsy, while not being as strong as Keppra. If you get a breakthrough seizure, you know that you have epilepsy and need stronger medications.
It seems like the doctors you're dealing with are running towards the fear of you having epilepsy without any actual evidence that you do have epilepsy. One seizure does not equal epilepsy! And overmedicating someone is just as dangerous as undermedicating them.