Middle age epilepsy onset

Shelley3297

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Being newly diagnosed as having some form of epilepsy, and being the kind of person who incessantly researches everything, i have been on the computer for several days. Most of what i am finding is either related to epilepsy in children, or later in life onset. I know i am no spring chicken, but at 49, i refuse to consider that i have entered the "later" part of my life yet:) I am really curious to know how many people are not diagnosed until their 40s with this heartbreaking condition? Does anyone here have any resources that you could suggest to help me in my research? Do people like me develop epilepsy, or is this something that i have had all along, that just hasn't been recognized for what it is? Looking back on my life now, i am starting to see "episodes" throughout my past, that may in fact have been types of seizures, but I just don't know. My neurologist does believe that the dizzy spells that i have been aware of over the last year and a half, were actually auras, or seizure activity of some sort. Most of the websites i am finding during my searches online, turn out to be drug ads of some sort, its kind of annoying at times.....just another reason i am absolutely grateful to have found this forum. Any info would be great, thanks!
 

Porkette

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Hi Shelley,

Do you know if anyone in your family has ever had epilepsy because it can be genetic. Also if a person has a heart problem that can sometimes lead to seizures. I started having seizures when I was 10 yrs. old and I'm 59 now. My Epileptologist told me that if a person has temporal lobe epilepsy that sometimes the seizures can increase of decrease when a woman goes through her change. Your seizures may be all hormone related and that's why you are having seizures now. Have you ever noticed getting a nervous feeling in your stomach, smelling an odd odor that wasn't around like something burning or have you ever seen colors going back and forth in your eyes and you are totally conscience. If you have then you have been having aura (simple partial) seizures.

Sometimes when a woman goes through her change the seizures will either start or stop because of the way the hormones have changed in the body. There's less estrogen which can trigger seizures and more progesterone which helps calm the nerves but when it come to temporal lobe epilepsy the seizures can increase or decrease it all depends on the persons body chemistry.
Wishing You the Best of Luck and May God Bless You,

Sue
 

Lisa36

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To Shelley,

If you’re trying to educate yourself on a medical condition and wish to be directed to legitimate studies in lieu of ads and sponsored websites, use Google Scholar for your searches. If you want to first just get an overall intro to the disease, the website epilepsy.com is a good place to start.
 

XxBlaqkxX

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Welcome, Shelley =)

It probably isn't as uncommon as you think. Epilepsy can be developed at any point in life, you only need a brain for that to happen - unfortunately.

Even if you are diagnosed now, it doesn't mean you've always had it. I was diagnosed at the age of 9 with a seizure disorder. Before then, I was a considered a happy, healthy kid - never any major issues.

Dizzy spells can be a warning sign of a seizure or that a seizure is about to get worse. Totally possible. Before a seizure these days, I've noticed that I get insanely dizzy. Like, if I stand up, I fall, and then I struggle with my speech a little bit like my tongue doesn't want to move much or my brain can't sort out thoughts because I feel like I'm on an insanely intense carousel ride at x10 speed.

I had a friend that said she had a friend whose daughter was in college and she was in her 30s and got newly diagnosed. I've also heard of others around their 30s that have suddenly started noticing issues that were seizure related.

My advice is document any seizure activity to bring up to your doctor. This can help them as they diagnose and treat you.

If you can, it's helpful to know if you have any food allergies/sensitivites or vitamin deficiencies that can be making things worse.
 

Shelley3297

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Porkette--I do not know of any epilepsy in my family, but am still checking. Unfortunately, i do not have the best relationships within my family, and gathering info has not been easy. I do have various heart and heart related problems in my family, as well as cancer (but i do not know what kind).
Nervous feelings in my stomach--maybe, but i have had GI problems for years, so most of my stomach issues have been chalked up to that....
I am actually still struggling with both esophagitis and gastritis, due to a severe gerd flareup following covid last year.
I have not necessarily seen colors going back and forth, but i so have ocular migraines from time to time. I am also the 1% of people that get all the side affects from just about every med i try for various ailments.....I have already decided that if i do end up having to go on anti-siezure meds, i will ask my docs to perform the genetic testing to help to determine what meds might work best for me. (I read about that on a few other posts in this forum)
I did once have the most intense de-ja-vous (i can remember it precisely to this day) about 7 years ago. This was an episode which i thought at the time was an anxiety attack, but i had never had an anxiety attack that presented with de-ja-vous before or since. I have had other episodes that were thought of as anxiety attacks, but the two can be similar so now i am wondering.........

Lisa--thanks, i will def try google scholar, and i did stumble on epilepsy.com, and have found a TON of great info on there!

XxBlaqkxX--I have started a journal, and i am tracking everything that i am feeling, good, bad, or indifferent. I have been doing this for several months to a lessor extent, as i just knew something was wrong with me, but no one could figure out what. I was even at a point where i told my GP that i would go to therapy if she thought it was hypochondria....anything to help figure out these dizzy/lightheadedness/tingly episodes i was having.
I do have food alergies, lactose and gluten, and a B12 deficiency, with some others that seem to fluctuate right on the edge of being deficiencies. I am in the process now of compiling a list of specific questions/concerns for myself to bring up at my next neurologist appt, to make sure i dont forget anything.

This is all so surreal to me, but i do find sharing here, as well as just journaling for myself, seems to help a great deal....just getting stuff off my chest so to speak:)
Thanks All!
 

Porkette

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Hi Shelley,

For many yrs. I tried seizure med after seizure med and nothing worked so my Dr. did a DNA test on me and took some blood along
with some salvia from my mouth and sent it to the lab. The lab was able to see the amount of enzymes in my liver and my body chemistry
and it was then my Dr. found out I was drug resistant to all seizure meds out on the market now. By doing the DNA test your Dr. will be
able to tell you what is the best seizure med for you with the least side effect or if you are drug resistant like me.

One thing I've always found that triggers seizures for me is when I get a cold or stomach bug. My body chemistry is correct
or I've taken an over the counter med to help me and that in turn can sometimes trigger seizures. I found the best thing for
me to take when I have a cold or the flu is the Aleve Cold and Flu med. Alka Seltzer cold plus always triggered seizures for me.

Wishing You only The Best and May God Bless You,

Sue
 

Peanut

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Being newly diagnosed as having some form of epilepsy, and being the kind of person who incessantly researches everything, i have been on the computer for several days. Most of what i am finding is either related to epilepsy in children, or later in life onset. I know i am no spring chicken, but at 49, i refuse to consider that i have entered the "later" part of my life yet:) I am really curious to know how many people are not diagnosed until their 40s with this heartbreaking condition? Does anyone here have any resources that you could suggest to help me in my research? Do people like me develop epilepsy, or is this something that i have had all along, that just hasn't been recognized for what it is? Looking back on my life now, i am starting to see "episodes" throughout my past, that may in fact have been types of seizures, but I just don't know. My neurologist does believe that the dizzy spells that i have been aware of over the last year and a half, were actually auras, or seizure activity of some sort. Most of the websites i am finding during my searches online, turn out to be drug ads of some sort, its kind of annoying at times.....just another reason i am absolutely grateful to have found this forum. Any info would be great, thanks!
Being newly diagnosed as having some form of epilepsy, and being the kind of person who incessantly researches everything, i have been on the computer for several days. Most of what i am finding is either related to epilepsy in children, or later in life onset. I know i am no spring chicken, but at 49, i refuse to consider that i have entered the "later" part of my life yet:) I am really curious to know how many people are not diagnosed until their 40s with this heartbreaking condition? Does anyone here have any resources that you could suggest to help me in my research? Do people like me develop epilepsy, or is this something that i have had all along, that just hasn't been recognized for what it is? Looking back on my life now, i am starting to see "episodes" throughout my past, that may in fact have been types of seizures, but I just don't know. My neurologist does believe that the dizzy spells that i have been aware of over the last year and a half, were actually auras, or seizure activity of some sort. Most of the websites i am finding during my searches online, turn out to be drug ads of some sort, its kind of annoying at times.....just another reason i am absolutely grateful to have found this forum. Any info would be great, thanks!
Welcome, Shelley =)

It probably isn't as uncommon as you think. Epilepsy can be developed at any point in life, you only need a brain for that to happen - unfortunately.

Even if you are diagnosed now, it doesn't mean you've always had it. I was diagnosed at the age of 9 with a seizure disorder. Before then, I was a considered a happy, healthy kid - never any major issues.

Dizzy spells can be a warning sign of a seizure or that a seizure is about to get worse. Totally possible. Before a seizure these days, I've noticed that I get insanely dizzy. Like, if I stand up, I fall, and then I struggle with my speech a little bit like my tongue doesn't want to move much or my brain can't sort out thoughts because I feel like I'm on an insanely intense carousel ride at x10 speed.

I had a friend that said she had a friend whose daughter was in college and she was in her 30s and got newly diagnosed. I've also heard of others around their 30s that have suddenly started noticing issues that were seizure related.

My advice is document any seizure activity to bring up to your doctor. This can help them as they diagnose and treat you.

If you can, it's helpful to know if you have any food allergies/sensitivites or vitamin deficiencies that can be making things worse.
 

Peanut

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Hello Shelly,

I too, developed epilepsy in my 40’s. Out of nowhere. Like you, did alot of research but nothing! It just is what it is, one of life’s mysteries I guess. I was having seizures for almost a year (initially just abscesses seizures) and would be at my desk working and suddenly become so fatigued and weak and didn’t know why. Then I started having short term memory problems and foggy brain - finally went to the doctor - who sent me to a neurologist..and eventually (after also starting to get partial complex? Seizures that I had epilepsy. I honestly didnt believe it at first! Like how do you suddenly get epilepsy!. After CT’s, MRI’s and EEG’s found out I have 10 small lesions in my frontal lobe, likely the cause BUT how they suddenly got there? They told me it could have been a good bump on the head OR a VIRUS!! Apparantely there are viruses that can cause deafness, blindness, brain lesions etc. Crazy!! Then I remembered a neighbour in her 50’s who had lost her hearing 2 yrs previously from a virus!! Wow - who knew!, Maybe think back to the period before you started getting strange feelings - even before the seizures and you may think of something. In the meantime - don’t get too caught up on the how, it’s hard enough to accept sudden epilepsy in your 40’s without trying to figure out the how. Don’t drive yourself crazy trying to figure it out. Work on acceptance and moving forward. Hugs
 

Sabbo

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I have been having simple partial seizures since I was little, but they weren't diagnosed as seizures until I was 14, after I had 3 or 4 tonic clonic seizures. That's when one occurred during an EEG, & they realized that those "weird feelings" I kept complaining of were actually seizures. Around 24 years ago I began having complex partials as well. They occur without any aura, have put me in many dangerous situations, and have caused me to hurt myself many times.
 

Shelley3297

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Thanks so much for the responses! My second neurologist (who will NOT be my permanent neuro) turned out to be worse than the first guy i saw. He is not classifying it as epilepsy yet. I had another 72 hr amb EEG and i had several seizures during this time frame. Upon getting the results of the EEG (even after begging for help during the EEG), all i got was a brief message on my portal stating that Dr did see "abnormal activity", but that he doesnt think they are seizures, just auras, and he doesnt treat auras. These were seizures, i lost control of my body, and have reviewed the video I took multiple times, and yes they are seizures. In the meantime, I am trying to get a PoTS diagnosis, and have had multiple severe flare-ups of my PoTS symptoms. I have contacted the Epilepsy foundation in my state, and am on the way to getting some help in finding an actual epileptologist to help me figure out what this "seizure disorder" is. My cardiologist, and current neurologist have outright stated that they do not treat/manage PoTS patients, so i going back through my GP to move towards an official diagnosis on that as well.
Right now, it is 5:30 pm, and i have decided that i am done "adulting" for today.
Honestly, all of you folks here are wonderful, and thank you so much for listening and supporting me:)
 

Army Vet

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Yeah, epilepsy is one of the hardest conditions to live with. It's near impossible to describe what it is and feels like from the patient's perspective. This makes it hard to discover what's going on and if something is temporally wrong. Also it is very difficult to find a solution for since everyone has a different thing causing it. Also the variables are constantly changing. The limitations it makes you have such as not being allowed to drive, tiredness, memory loss and many other things. So much for getting the rights to live independently. Have fun with income as well. Any medication gives everyone some kind of side effect. Plus the overall unpredictability of it. As you said, if you don't get a snapshot at the exact time you're being examined, then you're looked at with a blank face like you're not really experiencing anything. People hear the word "seizures" and all they think of are tonic clonic seizures.

I have to admit guilt of not knowing what epilepsy was before I started having seizures. I felt weird, had panic attacks, tired, lost memory etc. It wasn't until I was at dinner with some friends and family that they noticed I had a blank stare and wasn't responding. Other times I got up and just wondered around for no reason. Once I started to google all of these things, epilepsy popped up and I at least found something to talk about as opposed to feeling like it was something only I had going on. Am I going crazy?? No, it's something other people can relate to and possibly find a solution for. Along with that, finding a doctor that will listen and actually investigate to find an actual solution. I've been having them for 12+ years now. I started taking Lamictal and they went away for two years. I started working after going to college and I started having them again. I have at least 2 to 4 episodes a month and those are mostly ones that my parents see. I might have some while alone or maybe even in my sleep that I don't even know about.

Anyway, didn't mean to give my life's history, but I can relate and this might help someone else who can relate if they start having seizures (simple complex) yet don't know if it's something temporary and impossible to describe.
 

Sabbo

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My current neuro constantly says that I'm having too many seizures. It averages out to 1-3 for the complex partials/month, which are the seizures that are the real troublemakers. The actual number I have in a single day/month vary greatly. He wants me to have an extended EEG in which they can change my AED doses. I will call the neurologist he's told me to consult at the start of May because it's Ramadan right now, & I have to prepare breakfast before dawn for my husband & sons, & dinner after sunset.
 
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