Seizure Disorder

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Update #exhaustion

I've been completely exhausted and in pain for quite a while (not counting the chronic pain I have because of cerebral palsy, which is a life long thing). This situation has been going on for six months. I went to the doctor the other day and among other things she had me do a blood level concerning my seizure disorder meds. I got the phone call yesterday - it turns out that my Keppra levels were high, which causes at least exhaustion.

So now, I have to change up my med routine. I take Keppra, 100mg and 500mg twice a day (I also take Lamictal 150mg, but there's no problem there). What my doctor wants me to do is keep me taking Keppra 100mg, but instead of taking the 500mg, I'll take it differently - cut it in half at 250mg. I think it'll wind up being 500mg somehow, but things'll be different because I'm taking it at 250mg at a time. Luckily, all of the instructions will be on the bottle so I'll get it all straight - I have ADHD, so if the information wasn't on the bottle, I'd be in big trouble.

Now, the irony of this is that the Keppra may be making me exhausted, but at the same time I know by experience that any time I change my seizure meds for any reason, it takes me 10 days to 2 weeks to get the cobwebs out of my brain and used to the new dosage.

Ah, my life is so much fun! Reminder: develop a better attitude about life, ASAP! 😉

Oh yeah...about the pain not caused by having cerebral palsy - how am I going to get rid of that? I have no freaking idea!

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We Are Getting There #Hyperthyroidism #CKD #Anxiety #SeizureDisorder

Update from my last post. The black cat in the picture is my hospice foster Lady Greensleeve AKA Green Bean as I call her. The yellow cat is my foster fail Hatch. Yesterday I posted about how stressed and overwhelmed I was with Green Bean. Today, I had a seizure at church and I'm fine but was exhausted so I laid down for a nap. I woke up to her and a total of 5 out of my 6 cats in bed with me. These two were the only ones left when I was able to get a picture. First time she's actually slept with me. I am still tired but glad she is doing better than yesterday and I am going to eat then the cats and I are going to get more sleep.

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I'm new here!

Hi, my name is LavaMoon74. I'm here because my person and soulmate and love of my life has DID, and its been almost 2yrs now since her repressed childhood trauma and her alters have surfaced and in our 27yrs together we were both/all completely speechless and dumbfounded bcuz although weve known and were aware of her having mental illness and a seizure disorder, we had no clue or idea about any abuse or trauma in her early childhood or any alters or splitting or dissociation or any of it, now we also know its partly due to the fact my persons family hid it, buried it and inserted another life over it and narcissistically abused me spouse with denial, deflection and lying to her her whole life. We have a Love we know to be rare, unique, alien and unheard of in modern civilzation. We connect and operate on a level and existence deeper, stronger and more pure and bound in truth then anything weve ever known Love to be or described as. She is gifted and blessed with so many abilities and dare i say powers, its the stuff fictonal stories are filled with, but she is also severly dissociative and lost in her mind sometimes and the disparity is wreaking havoc on our marriage and our 3 daughters and some family members are turning it into the worst possible scenario in some areas and im looking for others out there that Love and are devoted to their person with plurality and it helps me to understand her more and be more forgiving when i connect with others in our same or similar circumstances, thanks for having me, be sound and be grateful for each other everyone!!!


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My Lonely Brain Lipoma

Hi, I'm looking for others who have this rare type of benign brain tumour. What are some of your symptoms and what has been your journey in getting help? I have a lipoma in the middle of my brain and have headaches, limb weakness and some other issues but can't find anyone to relate to and it's lonely being part of the 0.1% thank you 🤕 #BrainTumor #braintumors #SeizureDisorder #neurology


The Heck? Has anyone else heard of this? #Undiagnosed #Allergies #Migraine #Asthma #SeizureDisorder

So, all those hashtags are stuff I have thought this is but apparently it's really something else... although I do have the seizures.

For years I have thought I had all this stuff and sometimes I just passed for apparently no reason besides that my head apparently likes the floor. I always got a whole batch of seemingly unrelated symptoms, often at the same time. The real winner was the crushing headach (I mean really impressive) with nausia, dizziness, and sometimes confusion or difficulty speaking, or memory loss. But this came with a bunch of scary level "allergy" looking symptoms too.

There has also usually at least seemed to be an "alergy trigger." That
has usually been a water damaged building or bread baking, although deasil fuel absolutely hates me, as do some perfumes, and second hand pot. Also, just plain exercising in cold air does bad-bad things. The result is a bunch of surpluss mucus in all the wrong places, a serious tightness in my chest, a cough that just wouldn't let me catch my breath. I have passed out plenty of times, or else had periods of time I can't remember, and then there would also be inflammation to follow, usually sore joints and just bone crunching exhaustion.

I never got a real allergy test because I guess I was raised to be tough (not in a good way) and, the allergy wasn't life threatening ( I have had people conclude otherwise, but I always took it for granted this thing is survivable). I figured, what could anyone do about it anyway?

A few times friends bundled me into an emergency room, to get checked for a brain aneurysm, stroke, cancer, or a concussion, but when nothing showed on the scans the hospital staff was usually shockingly disrespectful and I guess I just didn't like the implication that I was "faking," "wasting their time," or "being a sissy." That stuff was always getting thrown around both in medical settings and at home too, especially when I was still a kid, though it continued as an adult (on the few occasions when I did try and get some help). I absolutely felt guilty for being sick and kept it to myself as much as I could.

Milder forms of this kind of symptoms were already part of my life when I was 7 or 8, but as an adult things have mostly gotten more dramatic. These days I am dizzy (at minimum) most of the time, I have also had car accidents during periods of time I am pretty sure I can't remember. I currently don't drive because I'm scared of killing someone by accident.

I don't go places where I might encounter the stuff I think are triggers. A lot of those are fun places that I really want to go (restraints, breweries, concerts, people's houses), but the simple fact is that accidently convincing everyone I might be iminently dying of a brain aneurysm (that seems to be the go-to bystander assumption when I have a bad eppisode) is about the most surefire way there is to ruin a perfectly good evening FOR EVERYONE (especially me, obvs.)

I also don't want to go to the ER for scans that show nothing and staff that are rude, and so there is usually a big argument between me and whoever is around. Durring that argument I'm probably not actually saying anywhere near all the words I'm thinking, and if I'm conscious enough, getting enough air, and also not puking, then i'm probably heavily slurred. A lot of the stuff I'm reporting is stuff I don't remember either. People tell me about it afterwards.

This experiance is a lot like having been really drunk, but without the alcohol. Whatever I'm saying, during one of these episodes, nobody is particularly inclined to think much of my judgement at the time, also, much like if I was drunk. That said, as the years have passed, most people who are close to me have gradually learned to accept that the emergency room is going to be a way to spend all night and a bunch of money being really uncomfortable, to no result.

Recently, I started to see a therapist for PTSD and she started to get nosy about why I don't do most of the things I want to do. These days I mostly stay home, full stop. Keeping me employed in a way that doesn't constantly trigger my symptoms has proved to be either impossible or just more trouble than the pay is worth. My wife has a good job, a sec onds income would be nice, but we don't really need the income, though my ego definitely wants that, and so much else that isn't comparable with having PTSD and a mystery disease. Part of the reason I stay in is the result of the PTSD that got me to see the therapist, but a lot of it is that I'm just scared of encountering mold, bread, diesel, pot smoke, etc. and ending a perfectly respectable day with an unwanted trip to the ER. Sure, at this point that might be a perfectly respectable second reason to have PTSD, but my therapist started pressuring me to see an allergist, in the hope I might get allergy shots and just end up with less risks to worry about.

My wife also finally saw me pass out, on Christmas morning no less, and what she described was textbook for a seizure. This is the first time I have gotten a clear description of what it looks like when I am out. My doctor gave me referrals to both an allergist and a neurologist.

So, just a couple days ago, I went to the allergist. What he told me has me absolutely shocked and confused. The allergy tests he did were almost all negatives and nothing that was positive was really, really strong positive. What he told me is that it's probably my nervouse system that does all this weird stuff, even actually triggering off stuff like mold, yeast, diesel, perfume, etc. much as if it were an allergy, but just neuro, not an allergy.

It really sounded like this allergyst didn't have much real information. He is an allergist though, not a neurologist. I do have a consult with the latter coming up, thanks to the Christmas seizure thing.

All the allergyst really told me was that the condition he thinks my nervouse system has usually gets worse over time and that I need to keep avoiding all this stuff, which feels like half the world, to try to minimize how fast things get worse. On one hand I'm actually more glad than I can express to have somebody just finally say they have heard of other people living like I do, but I'm also just stumped and confused because this is absolutely the first I have heard of this. I'm also scared of this getting worse and sad to still get told nobody can actually make my situation work any better. Has anyone else on here heard of this condition?

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Hello everyone I have come too make you aware of a Epilepsy awareness short film it’s really good and their trying too get enough funding too make the full movie I know moneys tight but every dollar counts. Shares help as well.^^ #Epilepsy #CheckInWithMe #SeizureDisorder #MentalHealth #Insomnia

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🎶🎄12 Days of FND Christmas🎄🎶

I love Kirsty-Ann Johnstone’s re-writing of the classic Christmas song ‘The 12 Days of Christmas”! Such an amusing and creative way to raise awareness of FND.
#FND #FNDAwareness #FunctionalNeurologicalDisorder #FunctionalMovementDisorder #FunctionalNeurologicalSymptomDisorder #ChronicIllness #ChronicPain #SeizureDisorder @sassyfndlife

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I'm new here!

Hi, my name is Feral Donut. I'm here, I'm queer, my disabilities make my life one of those crappy disaster movies with bad CGI and a plot you'd never believe is real unless you've lived it.

#MightyTogether #AutismSpectrumDisorder #PTSD #SeizureDisorder

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I have non epileptic seizure disorder. This past Saturday I had an “absence seizure “ while driving, luckily I had no accident before awakening.



One foot forward

The doctor appointment went well Monday. He didn't have much information about it due to it being so rare and unfortunately understudied
He did try his best to explain it better and take more notes. He will send the scans to my new neurologist and hopefully he will have a bit more info.
His main concern for the most part are the seizures. He, like us want them better under control. No one can really put a label to what they are I have been told NES and I've been told Epilepsy. I know that colpocephaly can cause seizures among other things. It's been a frustrating journey since December 2020 when they first started.

On the upside my parents are glad that I have a name for what's going on with me. When I told one of my parents they said I had your mom look it up and this is definitely what was going on with you growing up but nobody had a name for it.

It was rough growing up in the 90s-early 2000s with some of the issues I was dealing with but I made it through. Thanks to the support I had growing up with school teachers and my parents trying probably pouring over books and phone calls trying to figure out how to help me.

I'm hoping here on out it'll be a bit more smoother sailing on trying to figure this out more. I know life has speed bumps and every day I have to adjust and accommodate to my needs but I just need to put one foot forward even if that means wheeling that foot forward too.

#Spoonie #Colpocephaly #SeizureDisorder #AmbulatoryWheelchairUser

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