Living with epilepsy - Introduce yourself & meet others

Started 30 years ago I was 39 has a 8yo, 10yo & 13 yo had a fever and then after 2 day I developed seizures had more in the ER and more while hospitalized. Then I went home did not have any more for a few weeks but got sick again - no fever but had seizures this time my daughter called 911 & they told her she shouldn't 911 call 911 because it was for emergencies = she is so tiny even no at 39 her voice was like a whisper so her brother had to call - they were so scared after that we had an in-law stay with us. I have had several more episodes of grand mal seizures like that but not many most after that have been the petite mal, so after that first ones I had my license taken away after them for 6mos. but I'd get it back. Looking back is that nobody knew I was having generalized seizures until 7 years after the grand mal and a highway patrol officer looked at the fact I had gone through two stop signs and now in less than a week later had not put my brakes on hard enough when the traffic slowed to stop. He took my license away I would have had to go to court but I never did I called the highway patrol and ask them to thank the officer for taking away my license - nearly 7 years driving my kids all teenagers gosh and I never killed anyone on the road! So that's just a very short synopsis of what went on during the 30 years There are more medical, work, family all both a combination of social and professional. Ask any opinion or question that can be thought of I am glad to oblige 🙂 I am light hearte because if you aren't, your next step is always always really hard.

@1775house
Thanks for the update.
That’s a long time , 30 years. Guess I don’t have to tell you. Only lost your license for 6 months, in California it’s 1 year although I once got it back within a couple months when changing medication.
You mentioned having Absence seizures. Are you still on medication and are your Tonic Clonics and Absences controlled?
I had Absences too, one while driving and nearly hit a guy. Thankfully it was really short. He didn’t stop so I followed him and at a red light I explained what happened, then I went to see my Neurologist who upped my meds. Have you had any problems like Neuropathy, Ataxia or Aphasia? I guess most all of us have memory problems and fatigue. Have you ever been subjected to Epilepsy stigma?
I’ve had Epilepsy for 56 years and thousands of seizures, mostly Tonic Clonic and number of Status Epilepticus seizures, Focals (aware & impaired) and Absence mostly when first diagnosed at 14. Jack Benny used to say it was his 35th anniversary of his 39th birthday so it’s my 56th anniversary of my diagnosis when I was 14.
Are you still taking seizure meds?
Take care,
Jake

Hi Jake! Well if my addition does me well 56 + 14 = 70 so since I turn 70 in Nov. we are just about the same age, if my addition isn't very good I'll talk with my soon to be 7th graders for help 😉 Yes my seizures are pretty well controlled; my neurologist over here calls me a "puzzle" I do not fit the typical picture of those with seizes mine are mono Clonic if that is right. I would have seizures like you said absence seizures but there were times when I was coming out of it and I would be talking and then stop I would see their face my daughters, EMT, MDs etc next thing it was hours later and totally unaware of what happened. The neurologist I have now I have had for 15yrs and he teaches in neurology clinics on epilepsy - so he has been pretty goo one thing he always asks me is how well have I been taking my meds - Even with the little daily med containers I find a way to miss once or twice it is that I fall asleep. I would ask friends and family not to feel bad but to ask me if I took my meds if I wasn't talking "right" which was always a precursor to some seizure. But it helped. Was it 12 mos. in California because I live in the South Bay and I was sure it was 6 mos. but that was 30 years ago. . Epilepsy stigma like you've got something catchy? If that's what you mean yes but frankly unlike having it start younger it was like I did something wrong and could no longer do my job right - hey- you look just fine! you're not dying get on with things but no= you can't do that :). I'm glad you didn't get hurt in that accident that is what is so dangerous about this disease it is such a silent one - my meds are in control but I've been in the hospital twice this year because of this. They aren't exactly sure what goes on the doctors in the hospital think it is too high a level of one med my regular neurologist says the level I had is not unusually high - so I am on a different dosage and the VNS stopped the jerking movements that I would have on a regular if not steady basis. Yes, I also deal with neuropathy - I thought it might be due to me having diabetes but it has gotten worse even though my diabetes is well controlled. it was at first just my left foot, then after this last hospitalization my left hand and my right hand and foot have started - it is not major but I am more likely to think it is caused by other things - Oh - like the right side weakness that developed after my first seizures 🙂 Oh I sure hope Jake that life has treated you kindly since you got diagnosed. my 14 y/o grandson has temperature driven seizures and my firstborn (43 now) had a day after he was born - but I worry about my grandson because he already fears getting sick and as he starts high school what effect will that worry have on him. Well you did not think such a few questions would end up having to put up with reading this much Take care --- Leslie

@1775house
Hello Leslie,
Well, unfortunately, it appears your math skills are up to par.
I certainly don’t like being 70 but I only have eight more months to go, but I suppose I’ll like 71 even less.
I’m not familiar with the term “mono Clonic” seizures. What type of seizure is that? Could you possibly be thinking of myoclonic seizures? You mention seeing people then not being aware for hours. I assume you were sleeping during that time. And the weakness which may possibly be Todd’s paresis. Although unqualified, what you described doesn’t sound like absences that I’m familiar with. but I am no doctor. Just curious if they might be focal impaired seizures. The two are often misdiagnosed. The weakness, I believe is more common in Focal seizures. Have you ever been diagnosed with JME Juvenile myoclonic epilepsy or TLE Temporal Lobe Epilepsy?
@santosha can speak more about TLE and if she had any of your symptoms.
Easier said than done but no use worrying about getting sick. Whatever is going to happen will happen. Live and enjoy each day without fear, worry, stress and anxiety. There will plenty of time for those emotions. Why ruin a perfectly good day with those unnecessary feelings that are creating illnesses in exchange for one that will likely never occure? They say 90% of what people worry about never happens anyway.
My brother also has it as do his two kids. None of his grandchildren have it.
My Epilepsy has been a challenge. I had frequent seizures usually daily or every other day up to 12 a day unless I went into Status Epilepticus and had to be put into an induced coma. Comas lasted days, weeks, or months. The longest coma was 8 months. I was 15 and lost every memory for those 15 years and with subsequent episodes I lost more memories. For me, the hardest part of having Epilepsy is the loss of my ability to play the piano. I get emotional dusting it even nearly 60 years later even though I don't have any memories of when I played well.
My seizures were uncontrolled for 45 years. I take 1000mg of Carbatrol & 162mg of Phenobarbital. I refused neuromodulation and epilepsy surgery. Fortunately, my parents supported my decisions. What meds are you taking?
Take care,
Jake

Hi @1775house Good Morning
It will be a pleasure to share my experience with you.
As @jakedduck1 has mentioned I have Temporal Lobe Epilepsy. I have lived with it since I am a teenager, but without knowing it until I was 48 years old (2019), when my seizures became more frequent and stronger and I had many sleeping issues. As my epilepsy is refractory, I have been on alternative treatments (medical cannabis/ CBD, diets, suppression of my periods, yoga & meditation, etc.). I was about to prepare myself for brain surgery as AEDs did not work for me (some had terrible side-effects and others caused more and stronger seizures). Thankfully, I got to know someone who advised me to look for a second opinion with her neurosurgeon. And this neurosurgeon was not in favor of that surgery in my case, advising me to explore other alternatives and recommending me an epileptologist with whom I have been since 2001. I still have not yet controlled all my seizures, but I have reduced
them much and weakened them. I have about 2 complex seizures per month. I prefer to have those two seizures rather than controlling them and having all those terrible side-effects I had with some AEDs. I am back to live and smiling again.
I very much agree with what @jakedduck1 has written: 90% of what people worry about never happens anyway. This is very true in my opinion. With hatha yoga I have learned to focus more in my present time and enjoy every single moment of life.
If I can be of any help, please let me know!
Wishing you all a nice day!
Santosha/Chris

@santosha
Hey Chris,
You probably told me multiple times but what happens during your seizures? Do you usually react the same way each time? Do you wander? Have aura?
Jake

Hi Jake (@jakedduck1)
Ask me how many times you want, no problem. I also do have memory issues.
During my seizures, I first get an aura and then a complex seizure. My awareness and speech are not impaired during the aura, which is so quick and lasts 3 seconds. But when the complex seizure is there, my husband says I just stare, stop speaking and stay quiet. I do not have any body movements (I had those when taking AEDs). When he is next to me, he takes me to sit down and holds my hand. He says I do correspond to that, even though I am not able to speak. When alone, I also try to sit down or go to bed if I can and stay quiet. Deja vu feeling is something always present. When younger I also had some smell and taste in my mouth (very typical for temporal lobe epilepsy) during a seizure. But this has disappeared when getting older. With my current treatment with medical cannabis (CBD) my seizures have become milder, with very light body contractions and fast recovery. Right after a seizure, I am very confused and can not speak. How long? It depends on the intensity of the seizure. But it does not last longer than 1 hour. Ah, my seizures last less than 1 minute nowadays.
BTW, this afternoon I have seen a webinar on brain stimulation methods to stimulate memory, even in people with neurological disorders like Alzheimer's. It has not been yet studied in people with epilepsy, as they fear this might cause a seizure. It is still a study, a very interesting one with great results on people with Alzheimer's. But to evolve, as it was mentioned, it needs financing. The pharma industry in the US seems not to be much interested as this method can not be patented. Hope, this doctor receives some financing to continue his studies.
If you have any other questions, feel free to ask me.
Chris/Santosha

Hi Jake, actually go t back from my neurologist yesterday what the dx specifically is generalized convulsive epilepsy with intractable epilepsy CMS-HCC. Specifically where in the brain all that is you got me. Yes myoclonic is the word. There have been so many words thrown out over the last 30 years. The weakness I have is likely due to a stroke like episode I had somewhere around the same and perhaps even precipitated the epilepsy to being brought to the forefront even with these last two hospitalization with all the MRIs they've done my PCP/internist is putting me on a stroke preventative protocol because it shows multiple events. I wholly agree with you Jake you really can't worry too much I feel if you got at each incident in your life with the idea that you'll address it, you'll accept it' you'll fix it (if you need too) and you move on that moves to the my next statement every success begins with a failure and the only failure that starts another failure is not asking what's wrong OH! you've now made your first success in that situation 🙂 I will have this long staring spell and now my neurologist asked if I wanted an emergency med (Ativan) for the seizures that bring me to the ER. The on in Jan were seizures of and on over 5hrs and on for 1hr straight while I could sometimes respond to them. He thought if someone around me could treat me I could avoid the hospital and all the problems along with it. That is pretty good for a professor who teaches at the hospital I would go to, or maybe it is he is just tired of seeing me :). Well the meds I take are Lamictal and Zonesamide (sp) I've been taking them for probably 7years and they work really well they have been titrated up and down depending on the circumstances but I started out 30 years ago with Depakote and that did not work. Well I've rambled you take care - Leslie

Hi, I have sometimes complex seizures where the doctors are the complexed ones 🙂 Well I'll be talking and then I'll tell them my arms are feeling strange they will start shaking a little bit and then I don't remember anything for hours. Sometimes I am staring for hours and someone (daughter, or husband) will find me they will either sit me down or lie me down and then how I respond decide what to do with me. Those type of episode I don't do well with. The small on and off ones I'm OK with usually I am sitting by myself and I just realize a show that I was watching is over and I only saw a few minutes. Everything is strange in its own way.

Hi @1775house
I do have exactly the same experience you described during my partial complex seizures.
"I am sitting by myself and I just realize a show that I was watching is over and I only saw a few minutes."
I started to shake a bit while I was medicated with AEDs (Lamictal, Tegretol, Trileptal, Vimpat and Gabaneurin). But those shaking during the seizures have disappeared with the CBD medication. Quite earlier, before being treated with AEDs did you have also shakings during your seizures?
I liked your saying "Every success begins with a failure and the only failure that starts another failure is not asking what's wrong". As I have heard from someone, we have to look not at our falls, but at our uprise or lifting after falling. Sorry, I can not remember the best word in English now.
If I can be of any help, please do not hesitate to contact me.
Take care,
Chris/Santosha