Epilepsy patient and former phlebotomist recounts her mismanagement by a neurology NP
An unsupervised nurse practitioner's negligence results in disastrous consequences for an epilepsy patient, including loss of her job and a trip to the ER for status epilepticus.
Originally posted on Reddit. Reposted with permission. Lightly edited for grammar and clarity.
I wanted to share my story and also know, maybe get some validation, that what I experienced was wrong but hopefully doesn't happen often. Sorry if it's a bit of a story.
I have epilepsy and began seeing a highly-rated epileptologist in 2014 who was considered my area's leading expert. I was very satisfied with how he treated me and the medication regimen we started, which was the first one that showed any signs of improvement in my condition. I started at Keppra 500 mg BID and Lamictal 100 mg BID. After my first two appointments with him and a week-long video EEG stay, my future appointments were scheduled with his NP or PA, whoever was on rotation that week. I didn't have any immediate issues with them, but I was still having seizures, so we were still working through trying to balance my medications. By 2019, I'm seeing the same NP every six months. Since I'm still having seizures and auras, every six months she ups my meds. She never suggested that we do another EEG or try other medications, but I trusted her.
Fast forward to 2020. I'm on Keppra 2,000 mg BID and lamictal 350 mg BID. My last medication change was in May 2020, going from 300 mg to 350 mg BID of Lamictal in one day. Within a week, I start feeling side effects I've never felt before. Hand tremors, dizziness, confusion, face/mouth numbness/tingling, all within 15-20 minutes of taking. I mentioned this to the nurse practitioner, and she told me to "wait it out". My symptoms continue to increase in severity. I tell her this. Her response? "Well, it's either the side effects or seizures, so choose what you'd prefer.” I was more scared of seizures and trusted her judgement, because she's working under an MD, right? By December of 2020, I'm completely incapacitated between 20 minutes to three hours after taking my medications. I can't walk around the house without falling over, because I had really bad double or blurry vision (I felt like my eyes couldn't focus and that they were darting all over the place), couldn’t hold a conversation, and was completely reliant on husband just to help me to the bathroom, including just holding me upright on the toilet. My hand tremors had gotten so bad that I lost my job as a phlebotomist because they were near-constant and unpredictable. By the end, I had developed what appeared to be the Lamictal face rash. After losing my job and independence I had a mental break, skipped my medications for two days and went into status epilepticus, and ended up in the ED.
While talking to the ED docs once I was stabilized, they asked me who my MD was. I gave them the name, and they said he hadn't worked there in two years. (My neurologist and the ED I went to are the same health system/facility.) They said I must be confused; I told them that I've been seeing his NP. Well, it turns out that I've been seeing his NP unsupervised for two years. I don’t know who signed off on any decisions she's made, or who was overseeing her (assuming someone was supervising her at all). Nobody in the ED knew. They set me up to follow up with an actual MD a month later, through the same clinic. I refused and made a pilgrimage to the Mayo Clinic for help. I finally got the help I needed, safely came down on my Lamictal dose, and am finally working again and living a normal life.
How was this nurse practitioner able to practice without me ever hearing from another MD? Why was I never told that the MD I went to see in the first place had left? I'm no neurologist, but I feel like the NP’s dosing and dosing schedule was completely inappropriate. Because of her, I lost my job and career. I'll never be able to confidently practice phlebotomy again as I still have hand tremors occasionally and I don't want to hurt a patient. I'm healed now, and I've moved on in life. But this is an experience I'll never forget and I still find myself questioning sometimes what happened and how I got here.
Thanks for reading. Let me know if I've missed any details or pertinent info.
I wanted to share what dosing I'm on now and what Neurology has said about the whole thing, since I'm getting this a lot in the comments and neurology is a specialty field. I'm now on only Lamictal 200 mg BID but still on Keppra 2,000 mg BID. I've never had problems with Keppra, and as I’m currently pregnant, I’m getting tested monthly at the current dose to ensure my blood levels remain within appropriate (therapeutic) range. My MD neurologist said that one of the issues was that the NP did not properly titrate when increasing dosage and moved up on the dosage of both meds at the same time, along with failing to following up with any diagnostic tools. She should have gone up on Keppra first as it is generally a safer anti-epileptic drug and Lamictal, not so much. My MD even said that if upping the Keppra didn't help, he wouldn't have messed with increasing the Lamictal and that he would have tried a different med instead. I personally think 700 mg of Lamictal a day is overdose territory, but I'm not a doc. However, the bigger issue is how the NP operated, not necessarily the dosages. I know for sure that the level of Keppra I'm on is a safe dose, although not common, but is the max for Keppra. (Editor’s note: maximum daily dose of Keppra, or levetiracetam, is typically 3,000 mg, although higher doses are sometimes used with the side effect of increased somnolence.) I'm not sure what the maximum for Lamictal but I'm pretty sure it's less than 700 mg/day. (Editor’s note: the usual daily maintenance dose of Lamictal, or lamotrigine, is 225-400 mg, assuming no drug interactions exist.)
For those who know/understand, I have left temporal lobe epilepsy, which presents with simple to complex partial seizures originating on the left side. Occasionally tonic-clonic seizures can occur but happen very rarely and usually only under extreme circumstances (such as illness).