Hi! New here and new to epilepsy. 🙂

[MountainMama]

Hi everyone! I'm new here and I was recently diagnosed with complex partial seizures/symptomatic epilepsy. I had a major neurological event early this summer that began with what we thought was a stroke but ended up being a hemiplegic migraine without an actual headache. It was followed by clusters of what turned out to be seizures and I spent almost a month mostly out of it (confused, suffering extreme vertigo, able to read, but unable to understand what the words I was reading meant, sleeping 14-20 hours a day, suffering bouts of extreme and irrational panic for no reason, etc.). These symptoms eventually faded, but everything is different now than it was before.

I am still trying to wrap my head around what all that means and what it means for me personally. I can't figure out when I am having seizures (outside of the event described above) and I am currently unable to distinguish between what is seizure related and what is related to migraines or cluster headaches. It has been incredibly frustrating.

I started taking AEDs at the end of June and while they made my migraines substantially worse, (still trying to get that under control) they completely and immediately eliminated a slew of mental health issues that have plagued me since early childhood. My neurologist now believes thise issues were probably manifestations of temporal lobe seizures. I would like to believe that means the seizures are controlled, but I still have periods where I get nauseated, my ears will ring and everything feels slow and cloudy. I feel very ill and tired following these episodes, which makes me suspicious that I may still be experiencing seizures or seizure like activity.

Anyway, the whole experience has been strange and disorienting (literally and figuratively!) but I'm greatful that it is slowly getting sorted out. Looking forward to meeting everyone else here and getting to talk to other people who understand what I am going through.

 

[Porkette]

Hi MountainMama,

Welcome to CWE! When I was a kid I started having migraine headaches and they in turn lead to temporal lobe seizures. I have both absence and complex partial seizures and once in awhile I have simple partial seizures also called aura seizures.
I often have clusters of seizures for 1-2 days and that's all do to hormones changing in my body. My best advice to you is to ask your neurologist to do a video e.e.g. on you by doing that the neuro will be able to see what area of your brain is triggering the seizures and they will also see you having the seizure since it will be on camera. I had this done and my neuro found I was having seizures from both sides of my brain and later on I had to have a sleep study done and they found out I was having seizures in my sleep.
What has really helped me is the CBD (medical marijuana) I was amazed when my neuro wanted to put me on this but I found out I was drug resistant to all seizure meds out on the market now so once I was put on the CBD my seizures decreased. I wish you the best of luck and May God Bless You!

Sue

 

[MountainMama]

Thanks Sue! My neurologist has mentioned a video EEG, but said I didn't *have* to have one. I haven't scheduled one yet because I've already missed so much time off work since this whole thing started (most of June, some of July), and I'm afraid they will think I am unreliable now due to health issues. He also mentioned it would likely mean legally having to surrender my license, which for some reason I just can't cope with currently. Not driving by choice is one thing, but being told I'm not *allowed* to anymore...that's a line in the sand I can't deal with on a totally irrational, emotional level...at least not right now. (I'm totally still still clinging to just the tiniest sliver of hope that someone is going to call me and say, "just kidding! Everything is totally fine! Carry on as though none of this ever happened!" Which is crazy, but also where I am in the process right now.)

Is it significantly more helpful than the sleep deprived EEG? My EEG showed (among other things) generalized dysfunction as well as bilateral (left more than right) temporal lobe dysfunction. I didn't have a seizure during it, but he said my entire brain looked "irritable" and that it was a clear record of seizure activity. That combined with my symptoms during the neuro event described above, as well as personal and family history landed me with the complex partial seizures/symptomatic epilepsy diagnosis.

Never in a million years would I have guessed that any of my issues were seizure related. Even going into that EEG, I just did it to definitively rule seizures out. HA!

 

[Topcat]

Welcome fellow Arizonian.

 

[Porkette]

Hi MountainMama,

If you find that you are often tired when you wake up in the morning after a good nights sleep it may be because you are having seizures in your sleep, that's when the neuro may want to do a sleep study along with a e.e.g. and e.k.g. all at the same time.

Be sure to keep track of your seizures and write down on a calendar what time they happen and the type of seizure you have this will help your neuro see if there's a pattern in your seizures as to what time of day/night and what days of the month. I also have more seizures in the fall and winter because there's a lack of serotonin this time of yr. Just like you I have bilateral seizures. I wish you the best of luck and May God Bless You!

Sue

 

[Shaggy15]

Hi MountainMama,

Welcome to the boards. I like you was very reluctant in the beginning to have certain tests done because I did not want to have to surrender my driving privileges. I understand completely what your saying about not driving by choice vs. not being allowed to anymore. When I was first diagnosed my neurologist told me I couldn't drive, then she allowed me to drive again after a certain length of time being seizure free, can't remember off hand what that length of time was, chances are its a different length of time in Arizona than it is in Minnesota anyway.

Both times I've had a video E.E.G. done the docs kept me awake for longish periods of time, so I was sleep deprived for part of it.

I started keeping track of my seizures and writing them down on a calendar at the advise of Sue (the post above mine), it has been very helpful in trying to narrow down a pattern to when my seizures happen, and also helped me find a couple seizure triggers that I have, that I was not previously aware of. I hope things work out well for you, and the doctors find all the right answers to help you. God Bless

Shaggy

 

[acshuman]

Welcome To A Place That Will Help You If It Can, MountainMama!!

You will find that the members of CWE are as helpful as they can be! You will need to ask any questions that you have to get the answers or advice that you may feel you need to get, so feel frre to ask these questions at any time!
The fact that your case started only 2+ months ago it may take some time before your doctors find the correct medication that is needed to aid you in controlling your seizures. It is necessary for anyone w/E to have patience because it will be needed many times because determining what best helps a person is NOT a certainty because of the wide variety of causes and effect E may have for a person. Another big reason is that there are billions of cells in a person's brain and each one of them can cause a different type of seizure just by the way that person's brain transmits it's signals.
Always feel free to ask me any questions you may have and I will try to get the right answer for you. :clap:
I have lived with E for over 51 years now, so I have seen many things that can happen in a person's life!

Steve

 

[Mari]

Porkette, most of the time I do not know that I have had a seizure, how then can I tell what time it happened, how I behaved when having it, or when it ends? This is a legitimate question Porkette. I would love to find an answer to this question. It may actually help my son...and me, come to think of it...smile.

 

[Mari]

Aschuman do you know how to do a seizure diary if you don't even know when you have had one? Thank you.

 

[MountainMama]

Hey Mari, I don't have clue when I have seizures either. I Have started keeping a seizure diary though. In it I wright anything that is out of the normal. Headaches, fuzzy feelings in head or body, numbness, dizziness, nausea, changes in perception, issues with language or speaking, pounding or racing heart, unexplained emotional changes, deja vu, etc. just anything odd no matter how minor. Hopefully one day it will be helpful to me or the neurologist.

 

[Mari]

Thank you MountainMama. Unfortunately this does not work for me. I am often injured by the tonic-clonic but do not find out for months or even years, (incidental findings). This gives many unusual symptoms and doctors never believe it when you tell them that you woke up like that. Mostly though I, after the post-ictal, run, and either find myself in my bed feeling like I got hit by an 18 wheeler or sitting in some strange place, exhausted, and wondering where I am, and how I got there...scary stuff...brrrr.
A fellow member here gave me a very simple way to keep track. Given that I know how I feel after the 'big ones'...chuckle...I simply write that down and check the time. Knowing how long the seizures last: ictally, and post-ictal is most helpful. For me 1 minute of seizure=1 hour post-ictal. I just go backwards from that. Take a look at the clock and voila, at least you know how often you are having them, and it is not too hard to figure out what you were doing before the seizure, soooo with even a modicum of luck you can even figure out how long it took...still haven't tested that aspect lol... but I will...smile. I know, I know long winded...duh, sorry.




































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[Sabbo]

I've been keeping a seizure diary for over 5 years now. I use a sturdy notebook, and note the date, time & length of my seizures.
It's easy to keep track of my simple partials since I'm aware of my surroundings. For the complex partials, I have to rely on witnesses--if I'm alone, I know 1 occurred only if I've hurt myself, done something to surroundings, or note a huge time lapse.