Anyone have their seizures changed?

[seizingbeauty]

Hey, I was just wondering weither anyone had their seizures change over the years? It feels like my seizures are hitting me differently. I can't explain it and I usually "lose" the day that I had the seizure. Its just this nagging feeling in the back of my head that things aren't the same as they were.

 

[Junebug]

Yes, mine have definately changed over the years. I used to have falling seizures where I would trip over my own feet and then I would have seizures where I would make a noise as if I couldn't speak and I would just flub-up over my words, very embarrassing since I was in jr high and high school at the time.
In college I would only have seizures at night and now that I'm in my mid-30's I am starting to have seizures during my waking hours and I have periods where I can't get the right words out.

 

[epileric]

Mine have also changed constantly. Every now & then I feel something new. I take note of it but I'm not usually bothered or worried about it.

Many years ago a neurologist told me that there are certain times in ones life that seizures are most likely to change, disappear or start. I remember that puberty, 22 or 23 years old & menopause were 3 of them but can't remember the others (I'll have to do a google search when I have more time).

 

[Endless]

Yes. A change in seizures is what finally got mine diagnosed and treated. In middle age the seizures increased by an order of magnitude. Before this I had 1-2 a month. I thought there was something odd going on but I pretty much just ignored it. It got as bad as 3-5 per day, plus some very unsettling complex and simple partials where I did some stuff that couldn't be ignored any more. It sent me straight in to the doctor.

Since being on meds I've also had a couple of simple partials that are different than before, but on the whole I'm much better.

You'll find lots of posts in here from people who had their meds quit working after years, got into a new environment, aged, got sick, or a whole host of other situations including random luck, and their seizures changed. A few for the better, which would be the very best outcome.

 

[tkopi]

Oh mine have changed several times in my life. I started out having gran mals as a kid and that went on for quite a while. Now I've been having complex partials, with several types in between.
I've been lucky enough to have a drivers license off and on in my life. But it seems like when I go for a while without seizures they come back as a different type.

 

[skillefer]

Yup...I didn't used to have auras...now I do...

 

[Torak]

Mine have certainly changed, both types of partial seizure, tho the grand mal seizures haven't changed much.

I'm 37 now, but aged 5 or 6 I vividly remember a seizure at school where I heard music and had deja vu.

As I got older (11 or so) this changed.

The music changed to just a buzzing, almost as clean as a tuning fork.

Then, as I got older (15 or so), the deja vu disappeared.

Now it's only the buzzing, purely a sensory seizure, and they still happen. No confusion but a break in my concentration. The prodromes are much worse than these seizures.

The other type of partial seizure I have started aged about 19, buzzing in the head, a feeling like static electricity from an old CRT tv screen but it made my skull feel like it was making it vibrate, my brain with it. Then these got worse, jamais vu as I got close to 30, with much worse postictal spells and panic attacks.

Then the number of seizures increased from 1 grand mal every year to 6-7 a year, 5-6 small + intense partials a year to 200+ (aged 33, 2006).

The intense partials grew more severe, amnesia, nausea, plus I began to have prodromes before many seizures, partial and grand mal. Between 2 mins and 5 days before a seizure I would start to have debilitating attacks of depression, lethargy, childish bad temper and aggression. As a result of this I've had a VNS (not suitable for brain surgery) and it has reduced the number of times I have prodromes before seizures.

Not able to work since 2006, so I'm trying to learn to play the guitar (into Metallica, Megadeth and Dire Straits) and write (some poetry and maybe a novel) plus studying astrophysics and cosmology to keep my mind sharp.

 

[Crystal11]

When I was 6, I had a shorter complex partial seizure and the sound centered in the middle of the room and I wasn't able to hear anything but that sound. I felt strange and didn't have any idea what it was. The next thing I remember was my teacher standing in front of me saying that it was time to get in line for lunch. The other students were saying "You're taking a long time. Lets go!" I realized years later that I've been having mild seizures that no one really knew about. I just knew that when an episode happened, my eyes would go to the right, my right shoulder would feel strange all the way down to my hand and sometimes my head and body from my hips up would turn to the right as if tracking something going by..
After finding medical records and scanning them (program for the blind that reads print), I found out that ER records and hospital records from age 4 said "possible absence seizures". Then at age 6, I was diagnosed with Absence seizures even thought the EEG was pretty normal. The description from the teachers and Mom was pretty close to the seizure type the neuro thought of. I wasn't medicated due to Mom's fear of meds..
Later I started meds at 13 then again at 22. Now 27 and been on meds since.
I noticed that when I lowered my Tegretol XR by 200mg (felt good and thought it was a good idea) I would start having drop attacks. I would be in the middle of walking or talking or doing something and just fall down. Most of the times I am going sighted-guide with my roommate or my twin. The most draumatic episodes where when I was walking downtown and my roommate caught me but you cant hold someone up with no muscle control. It scared me real bad and I refused to do much I knew people were walking by and it embarassed me. I thought they may think I was having a heart attack or drunk or lord knows what. You think crazy things when something happens to quick.. I was upset. I was afraid for a while and knew if I didn't up my meds that it would happen again.
Another time I was walking with my twin and roommate to a local shopping center and had my guide dog with me. He guides me on the left side- never the right. I tend to fall down to my left and I fell on my poor guide dog. I was so close to him that I could see him chest as he rolled over onto a curb and into a bush. It wasn't horrible enough to cause injury to him but my knees hurt a lot for a few days. I was more upset that I fell on him than anything wrong with me.
I was already on the ground and my roommate said she could not believe what it looked like to see me go down so quick. She has Atonics too so I'm aware of what they are.
Anyway- I stayed on the ground crying and looking over my dog. There was traffic and I'm sure people saw me. I didn't care and after I got myself back together, I went sighted guide with my twin. Well blind-guided? She is visually impaired herself and uses a white cane to travel. So we walked together and I have been afraid of drop attacks ever since.

I went to my neuro and explained everything and I didn't get a "You have..." but it was documented sevreal times. My previous neuro was also told about this since it happened while in college several times. I did have an ambulatory EEG and it happened while sitting at my desk in class. My interpreters were sitting infront of me and wasn't sure what happened. So I told them that next time they see an aura or seizure starting, to push the button on the machine to mark it. They could always tell when I was about to have a seizure since I look strange and pale and don't respond well. They would sign something and I would seem as if I can't see anything. I cant see well but am not totally blind.

I was able to mark it myself a few seconds after it happened. I wanted to make sure it was documented. I told my doctor about it and we didn't discuss it a whole lot because I was getting the news of the over all test. It showed a driving responce, and spike-n-waves and the overall voltage was pretty normal.

So it to me, was a good thing I asked to not have an MRI and neuro changed the testing to an AEEG instead. I have a fear of the contrast dye used. My twin had a horrible feeling with that stuff so it freaked me out. The MRI without dye that I did have a year later didn't show anything real important that would cause any damage or any disease.
I was born three months early and died 1 time. I do have other disabilities but some of it is caused my medications that are no longer used. It kept us alive but it probably had some effect on us that early on. Had heart surgery on our hearts for PDA or a hole that never closed..

So now that I've gone on long time,
Everyone take care and be safe.

Crystal and her guide Umbro.

 

[Ori]

Mine have changed too. I've only been having seizures for the last 10 months. At first they came during the daytime, then changed to daytime and bedtime (before sleep/on waking). Now the day seizures seem to have stopped, the bedtime and waking seizures are less frequent, but I wake up at the end of seizures during full sleep.