Medical Mystery Me

[Featherfool]

Hello. I found this forum looking for back-to-work supports. To be honest, I'm not even sure I have epilepsy- the doctors sure are confused about it so far. I do get something like absence seizures, though apparently the presentation is not in line with the results of my recent tests. My father had seizures until he was in his fifties, and they just kind of stopped. My sister had seizures when she was a child, and they stopped after puberty. I'm in my mid-thirties, and my episodes started after I recovered COVID-19 infection.

I've been dealing with Long COVID for about 18 months, along with recurrent infections. I've had COVID five times in that time period. I feel like I have COVID more than I don't have COVID at this point. No one really has an explanation for that- I had three vaccines before my first infection. I've been managing with the exhaustion, the brain fog, the excessive sleep, random rashes. I kind of figured out how to live with it, to an extent. I took six months off work, but recently was back three or four days a week and looking to add another day shortly. Then I got COVID for the fifth time. It was really mild, compared to the others, but when I recovered and had returned to work, I had my first "episode". Freaked my boss right out let me tell you. Freaked me out, the pharmacist (I work at a pharmacy), and my husband who came to pick me up. Freaked out the triage nurse at the ER too, who definitely thought I was having a stroke.

It's been three weeks now, and I'm having one to three episodes a day, and the odd day of none. I'm not really calling them seizures yet, because my GP, the ER doctor, the internal medicine doctor who specializes in complex COVID cases, and the neurologist they consulted are a bit at odds on what I'm dealing with. There are really only two hospitals where I live that deal with neurological issues, and last year apparently every single neurologist at one of those two walked out and never came back- and they have not been able to hire any more. Not sure what's up with that, other than there are definitely better places to live than here. It does mean that neurologists are now incredibly thin on the ground, and wait times for EEG are over a year, and more specialized tests even longer. Seeing a neurologist at all basically takes an act of God unless you are actively bleeding out of your ears. I have a consult to see one, but it will likely be many months until I do, and possibly longer. So finding out what's going on is going to take a long, long time.

Meanwhile, no one really has a treatment option for me. No one wants to try seizure meds because none of the results really match each other to select which to even try. I have something that looks like absence seizures, but I also get incredibly confused and stop being able to write or tell time, or know where I am or what I'm doing, or even talk, sometimes for more than an hour after the episode itself. Initially the ER doctor thought it was psychogenic seizures, but then they found a damaged area in my brain... but instead of the temporal area where they might expect to see that with my symptoms, it's on my corpus callosum, the bridge between the right and left hemispheres, which should cause very different symptoms. My EEG showed seizure-like activity when I was at rest, but the lights triggered an episode and when that happened the reading went completely normal- when it stopped, it went back to abnormal. So now everyone is confused.

Honestly, I don't really care what is causing it. Maybe it's seizures, maybe its undealt with trauma I don't actually remember having, maybe it's even the narcolepsy which was thrown around at one point. It LOOKS like seizures, so I figured people who know and experience epilepsy would have some suggestions on how to live with this until I can at least get some answers. I'm honestly afraid to take the bus to work- what if I have an episode on the bus and forget where I am, where I'm going, where to get off or how to go home? After several of my events, I wasn't even able to use my phone to call for help. How do I go back to work if I can't remember where I am or what I'm supposed to be doing? My GP couldn't really answer these questions, and I have no idea who to ask. How do I keep myself safe and on-track? I love my job- I seriously love my job. I don't want to take more time off.

Anyways. That's where I am. Medical Mystery Me.

 

[Nakamova]

Hey FF, welcome to CWE!

If you have a family history of seizures, then that's the most likely diagnosis for what you're experiencing. But it would be great to know for sure! Another EEG might help with that (a positive EEG can help conform an epilepsy diagnosis, but a negative one can’t rule it out). But even better would be an experienced epileptologist. My two cents: what you describe sounds like seizures, even given the anomalies in the EEG results. Given that there are short-term and long-term risks if they’re left untreated, I would ask the neuro about starting a dose of Keppra -- you can get up to a working dose within a day or two, and if it helps then that would be another indication of an epilepsy diagnosis. If it doesn't help, or has intolerable side effects then you taper off it.

In the meantime, it might help to look for secondary seizure triggers -- physical, physiological, environmental, emotional stressors — that may be playing a role. Keeping a journal can help with that. (Don't worry if you can't identify a trigger or pattern). More good info can be foundat this CWE thread:

Proactive Prescription for Epilepsy

Disclaimer: The following is a synopsis of my opinions/advice regarding epilepsy after a decade of listening to doctors, researching the subject and caring for a wife with epilepsy. I am not a doctor, and you should talk to your neurologist/epileptologist about your care. Epilespy 101 - An...

www.coping-with-epilepsy.com

And feel free to keep asking questions (and venting!) here.

Cheers,
Nakamova

 

[Porkette]

Hi FF,

Welcome to the forum! You could be getting your seizures from your family genes and it could be coming from the covid
my cousin is a Dr. that has had to deal with the covid and he told me that sometimes if a person has had severe covid it can
sometimes bother the nervous system months later and that could be the problem.

Nakamova gave you great advice keeping track of your seizures I was told to do that when I saw my Epileptologist and
they found a pattern in my seizures every month and they saw how I would have more seizures in the fall and winter
compared to the spring and summer and that's do to the lack of serotonin that time of yr.

Ask your primary Dr. to refer you to start seeing an Epileptologist which is a Dr. that specializes in epilepsy. I saw many
neuros. over the yrs. but I got the most help seeing a Epileptologist and the Dr. even did a DNA test on me to find what
seizure med would help me the most with the least side effects. In the meantime try taking zinc 50 mg. once a day that
will help fight off the covid along with stop the seizures.

I could be wrong but I'm wondering if you are having complex partial seizures because you are walking around. Don't
let the seizures stop you I worked in a public school for 35 yrs. and I had seizures in front of the students but everyone
understood because I told them about it.

I wish you the best of luck and May God Bless You,

Sue

 

[Bernard]

Hi FF, welcome to CWE.

Any chance your docs checked you out for cardiac issues? Did the docs rule out your episodes as being TIAs?