New here.

[ilbrop]

Hi everybody,

New here. Epileptic for 55 years. Started @ age 7 from tbi, 2 grand mals. 20+ years of phenobaribital. Have had countless events that were labelled as petit mal which i've learned recently are likely focal awareness seizures. I no longer take medication. Have learned to spot the signs, confusion, tunnel vision and interrupt the sequence with awareness.

Always remembered my first few eeg's were with pins that they pierced the scalp with, then they switched to a glue that smelled like nail polish and stuck in my hair for months then to a white glop which was the last i remember.

Typical situation going into a store looking for a product, every episode starts with confusion and progresses to tunnel vision. It's always the same situation, same triggers. Other instances would be if trying to play any sport, baseball, volleyball, etc. Heavy exertion with certain lighting conditions.

I've not seen a neurologist for 30+ years as i've learned to live with the condition and when i did the medication was of no help for this condition. any time i said something they simply increased the dosage. i learned to keep quiet. perhaps things are different these days.

I've learned mindfulness many years ago, practice diaphragm breathing and eat a whole food plant based diet.

 

[ilbrop]

Epilepsy held me back in life for sure. Back when i was diagnosed it was something to hide, maybe even shame and not discussed unless necessary, much prejudice. I still lived and had to dance to the beat of my own drum. Often not explaining to people why I wouldn't do things other people would because of the potential for seizures. But i got on with life, learned to adjust, learned to develop a tough skin and not care about people's criticism's and judgements. I haven't lived an easy or sheltered life and took many risks because i could see the risk of not engaging in life. Most of my life has been lived solo because people can't understand and I don't have the energy to try. Sounds morbid but i've lived a mostly happy life not dealing with attachments other people got themselves into. Learned to live with what i can get without struggling for the gold rings.

 

[Sabbo]

Hello, and welcome to CWE, ilbrop! You've definitely come to the right place, whether you want to get info or just vent about your epilepsy. I've had epilepsy since childhood, but it wasn't diagnosed until AFFTER I had a few grand mal seizures when I was 14, in 1987. I recall complaining about "strange feelings" in my head even when I was 5. During an EEG being done after the grand mal seizures, I had one of those "feelings"--THAT is when the neurologists recognized them as simple partial seizures. Approximately 27 years ago I began having complex partial seizures as well, which TRULY screwed things up.
In high school I HAD learned how to drive but never got my license. The day of my final behind the wheel practice, I had a simple partial right before class. Right then & there I decided I NEVER wanted to risk driving--when the complex partials started, I was VERY glad I didn't since those occur without any aura.
Despite completing degrees in accounting & economics, I have never been able to work. The complex partials put me in such dangerous situations that my family said DO NOT DO IT. Once, for example, I nearly fell onto the tracks at the commuter train station. I've burned myself so many times--2nd & 3rd degree--that I no longer cook on the stove unless another person is in the house.

I spend my days sewing quilt tops, crafting, & doing jigsaw puzzles or word puzzles in books. I make hairclips & barrettes using beads/ribbons & beaded bracelets.

 

[Bernard]

Hi ilbrop, welcome to the forum.

 

[ilbrop]

Hello, and welcome to CWE, ilbrop! You've definitely come to the right place, whether you want to get info or just vent about your epilepsy. I've had epilepsy since childhood, but it wasn't diagnosed until AFFTER I had a few grand mal seizures when I was 14, in 1987. I recall complaining about "strange feelings" in my head even when I was 5. During an EEG being done after the grand mal seizures, I had one of those "feelings"--THAT is when the neurologists recognized them as simple partial seizures. Approximately 27 years ago I began having complex partial seizures as well, which TRULY screwed things up.
In high school I HAD learned how to drive but never got my license. The day of my final behind the wheel practice, I had a simple partial right before class. Right then & there I decided I NEVER wanted to risk driving--when the complex partials started, I was VERY glad I didn't since those occur without any aura.
Despite completing degrees in accounting & economics, I have never been able to work. The complex partials put me in such dangerous situations that my family said DO NOT DO IT. Once, for example, I nearly fell onto the tracks at the commuter train station. I've burned myself so many times--2nd & 3rd degree--that I no longer cook on the stove unless another person is in the house.

I spend my days sewing quilt tops, crafting, & doing jigsaw puzzles or word puzzles in books. I make hairclips & barrettes using beads/ribbons & beaded bracelets.

Sabbo, thanks for the welcome. I've never connected with any community regarding epilepsy. Sound's like you've had a time of it as well. Has the condition been stable since the complex partial seizures began? Are the seizures completely random? For me it's random however the conditions are always the same, in otherwords it doesn't always happen when the conditions arise. Perhaps there are conditions i'm not aware of which are contributing. Maybe that's why i'm here, to hear how it affects others...

 

[ilbrop]

Hi ilbrop, welcome to the forum.

Thanks for the welcome Bernard.

 

[Porkette]

Hi ilbrop,

Welcome to CWE! I started having absence (petit mal) seizures when I was just 10 yrs. old then 2 yrs. later the complex partial
seizures started also. I found seeing an Epileptologist was the best thing I did this Dr. did a DNA test on me to find the best
seizure meds only to find I was drug resistant. Then I started using vinegar with mother to lose weight and I would take 2 Tablespoons
in the morning and sure enough my seizures dropped to the lowest in my life.

Take my word everyone here is a great friend and support to others and I don't know where I would be if it wasn't for\ee
everyone here. I found that using Nutra Sweet (aspartame) ex. diet soda was one thing that triggered seizures for me and
when the cell phones came out I was working in public school and I noticed my seizures increased then and my Dr. did a
e.e.g. on me and he was firing up his cell phone every now and then during the test but I didn't know he was doing that
and each time he fired up the cell phone the spikes in the e.e.g. went sky high so they found out I was cell phone sensitive
due to the frequency the phone was using.
I wish you only the best of luck and May God Bless You,

Sue

 

[ilbrop]

Hi ilbrop,

Welcome to CWE! I started having absence (petit mal) seizures when I was just 10 yrs. old then 2 yrs. later the complex partial
seizures started also. I found seeing an Epileptologist was the best thing I did this Dr. did a DNA test on me to find the best
seizure meds only to find I was drug resistant. Then I started using vinegar with mother to lose weight and I would take 2 Tablespoons
in the morning and sure enough my seizures dropped to the lowest in my life.

Take my word everyone here is a great friend and support to others and I don't know where I would be if it wasn't for\ee
everyone here. I found that using Nutra Sweet (aspartame) ex. diet soda was one thing that triggered seizures for me and
when the cell phones came out I was working in public school and I noticed my seizures increased then and my Dr. did a
e.e.g. on me and he was firing up his cell phone every now and then during the test but I didn't know he was doing that
and each time he fired up the cell phone the spikes in the e.e.g. went sky high so they found out I was cell phone sensitive
due to the frequency the phone was using.
I wish you only the best of luck and May God Bless You,

Sue

Thanks for the welcome Porkette. Great information. Thanks for sharing!

 

[Sabbo]

Hello. My complex partials have been reduced GREATLY since I began Xcopri. The longest stretch I've gone without any of those seizures was approximately 7 months, last year. Then I suddenly had 2 on 1 day, while at my mother's house helping her pack for a trip. My neuro wanted to raise the dose by 50mg, but I couldn't pick up the prescription due to cost--I would have had had to pay $700 out-of-pocket for that. I currently take 500mg Zonisamide & 300mg Xcopri/day. I've taken EVERY AED out there for the seizures I have. IF I'm not allergic to them, they seem to work for a while, then I begin having breakthroughs again, almost as though my brain becomes immune to them! Xcopri is the 16th AED/AED combo I have tried.