Seizure Disorder

Hi, my name is TrackTown089. I'm here because

#MightyTogether #Anxiety #PTSD #OCD #EatingDisorder #ADHD #Alcoholism #SeizureDisorder

Hi, my name is Heidi. I'm here because I want to support others and have support myself due to having epilepsy mingled with mental health conditions. It has been a difficult road to navigate. I didn't start with a seizure disorder until I was 18years old. After living that long with a "normal" life it was challenging to begin to have to change everything and watch others, especially my mother, give up part of themselves to help me. Mom has been in this battle since the beginning and watched my thinking process and behaviors change. I know she has cried in private and been worried that each day will be my last. I have also had many moments to laugh about along the way such as, trying to take off the over door after a seizure, talking to random people and coming to with a look of confusion, or coming to and having my kitchen clean after frying sausage on the stove stop and trying to find the sausage and finding it weeks later in a Tupperware dish in the cabinet I kept them in.....needless to say I did not consume the sausage. I just want to be an advocate and educator not just for people with epilepsy (which I do think is desperately needed), but people with co-morbidities and how they affect the person's mental health. At times we are not treated as a whole person, but as our disability and when we describe other symptoms to our doctors, they can be dismissive and talk down to us saying such things as what you are feeling isn't an actual symptom of your illness. As a social worker and formally working with many populations I saw this type of treatment among them. I would see the brokenness within others when they just kept being told they were not good enough or their past and their disability define.

#MightyTogether #Anxiety #Depression #Migraine #Epilepsy

Hi, my name is clgraf2023. I'm here because I have intractable generalized epilepsy. I was diagnosed in 2002 after having my 1st grand Mal seizure. After the initial EEG & other tests, it was determined by the treating neurologist that I had been having absence seizures since infancy. After a trial of numerous combinations of seizure medications, finally found two that seemed to work but my neurologist recommended a Vagus Nerve Stimulator to add on as an adjunct therapy. My 1st one was implanted in 2011. I had a few serious hospitalizations, two because of status elepticus. Since then, my VNS has been replaced once & my seizures have reduced significantly. However over the last six months, I've had 4 grand Mal seizures resulting in injuries, & another seizure medication added to the two I'm already taking. Very frustrating. Sorry for the long post

#MightyTogether #Epilepsy #VNS #SeizureDisorder

Hello I am New Member here I would like to explore each one of us history😌

Hi, my name is chroniclife87.
I have chronic debilitating Hemiplegic Migraines and a seizure disorder that is part of the migraine auras. I am looking for help, support, resources for employment and much more!
#MightyTogether

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!

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!!!

#MightyTogether

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

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?