my story

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Ethel52

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Somewhat new here. I wanted to share my story....


My last experiences started on April 30th. I knew April 29th that the next day they would be starting. This has been happening since I was 12 or so, but I remember reoccurring dreams as a younger child. As young as 8, I think. They come on average every two months to three. I have found no correlation with seasons, food intake. Sometimes they are in the day, sometimes in the evenings.

My hands get heavy. My body sulks. I sense the inability to move, yet I know I can if I want to. Things feel foggy. Where am I? I am here. Wait. Here it comes. A song. The same song as the last time, I hear it perfectly in my head, but a second later it’s gone and I can’t hum the tune or tell you what it was. But I am 100% sure it was the same song, because I am thinking of it now, but can’t grab it. I am back at 8 years of age again…feeling a familiar feeling from that time, but I can’t figure out what it is. Then there’s the counting. Then it gets to infinity and everything stops. Perfect. I feel the “feeling” of everything being perfect and right. By this time I have my head down in my lap and letting the time pass. I am able to realize when they come on, and if alone, I go into a near restroom and sit on the stool and feel my head pulse, I sweat profusely sometimes, but not every time. Sometimes I rock, but not every time. I look in the mirror and don’t recognize myself, even though I know it is me. People say hi, and I say hi back because they are familiar, but I don’t know their name. If I try to challenge the feeling, and keep my head up, things around me seem to happen after I suppose they are happening. If I can just talk and tell you what you are going to say next before you say it, then you will believe me. But, I feel to slow to tell you. That can is going to drop on the ground. See, I knew it before it did it.

It takes me a while to recoup. Day one it happens 3-4 times a day. Days 2-3, it happens every 2-3 hours. The last two days are once in a great while. Not last time though. The peak was May 5, where it was happening every hour or so, and I never felt as though I had come out of it. Then, May 6th it was pretty much done just like that. I don’t remember what I was doing the hours before each episode.

The days before are a distant past. I remember I was at work, but no clue of past conversations or duties.

My memories of my childhood are detailed. I can remember places, streets, scenery like I was there 5 minutes ago. Its like a picture in my head. What happened during my past is patchy. I feel as though I can be asked about one thing and answer well, yet have no recollection of another thing that is more important to me (or is supposed to be).

I remember being on 8th court in Bandon and on Vista Drive in North Bend Oregon waking up to the same dream, that had this counting, and then everything reached the pinnacle and everything stopped and froze. Minutes later it would seem, I would wake up, unable to move. Then, I would drift back asleep and wake up the next morning fine. I honestly feel at times like these dreams are happening during the day, which to me means that it may be that the illusions or auras were happening only during the night as a child, and have transitions into the day, primarily. Information I learned from a Master’s degree over the last 4 years…I have no recollection of anything that I learned. The same with information from college.

I can still type well, drive, walk, play baseball, remember details about sports, yet struggle with the names of players I am trying to remember. I see people at work and cant remember their names, people I see every day. And this is at times apart from the days that I have my experiences. Right now, I am a month and a half removed from the last experience, and I feel like I can remember a lot of the normal everyday things and people now. The weeks just following the experiences, however, are a struggle to maintain normalcy.

ANY song I wake up to in the morning, or hear first in the morning on the radio is in my head till noon or later. I hear it as I type, I hear it as I run, I hear it as I drive and listen to a whole different song.

On May 5th, I was driving around getting signatures for new CDs the foundation was opening up. While at First Bank, I had an experience where I suddenly didn’t know where I was at, but knew I should keep agreeing with the guy I was talking to, and nodded, said I had a headache, and to wait a second, and then continued with the conversation…all in a span of 10-15 seconds.

Later, on my way to another bank, I accidentally missed the street, because I lost where I was (I was on Broadway, the main street in town). I pulled over, and it took me at least 15 minutes to remember where I was, who I was and what I was supposed to be doing. I didn’t remember how to get home, I turned around and headed down broadway, eventually finding my way back to the Library, but it took a lot of turns down wrong roads.


I will try to remember to type out my feelings right after it happens again, and try to remember to write down the times and dates it happens the next time, because it has been like clockwork. Every 2-3 months, for 4-5 days at a time.
 
Hi Ethel52, welcome to CWE!

Are you seeing a neurologist/taking anti-seizure meds right now? if you are having regular seizure-like events where your memory is affected, it seems like it would be worth getting help sooner rather than later. if you are already getting treatment, then it it may be worth tweaking the medication so you get better seizure control.

Best,
Nakamova
 
I wrote this summary 3 years ago to the day. I went and saw my GP. He put me on medication for ADD....taking basically methylphenidate and another I can't remember the name of.

Its been a frustrating process as I have been able to get the intensity of them to slow, but I still have them on a 2-3 month rotating basis. I have found that they are more severe after multiple late nights in a row of really hard work.
 
He was very unfamiliar with epilepsy stuff. However, the last time I was there he suggested I possibly get some scans done. However, my wife does not want me to as she says it will change our lives if I am diagnosed with it. I live in Illinois.
 
I think it would be a good idea if you see a neurologist. I don't see how putting a name to your symptoms and getting proper treatment for them is a bad thing. Having an accurate diagnosis will definitely change your life -- for the better. Untreated seizures tend to get worse.
 
I've learned to cope with them, and minimize their impact by getting good rest every night. My wife is very hesitant to change anything as we want to ensure that I am permitted to drive.
 
I've learned to cope with them, and minimize their impact by getting good rest every night. My wife is very hesitant to change anything as we want to ensure that I am permitted to drive.

As Nakamova stated, untreated seizures can and do get worse over time. IMO, it is wise to see a neurologist and get them under control. There is a possibility that they could turn into TC's. And there is a possibility you could have even a CP seizure while driving and wreck your car, ultimately losing your driving privileges. Things will definitely change if that happens. It is better to be safe than sorry. Even getting good rest every night sometimes doesn't work. Been there.
 
They have been the same for 25 years pretty much. is there a way to get checked out without just throwing up red flags?
 
They may have been the same for the past 25 years or so, but there is the possibility that one could happen while driving. I've had E for over 30 years and never had a seizure while driving, until last December. I've even had period of time where I didn't drive for years because of my seizures. But several years ago I had my driving privileges rewarded to me again. But then, back in December out of the blue while driving, I had a CP seizure and ran into a tree. Thankfully, no one was severely injured. I didn't hit another car. Only my car was totaled. And now I cannot drive again for some time.

The way to get checked out before throwing up red flags is seeing a neuro before you hit someone else while driving.
 
I agree with Naka. and Clint.

I had absence seizures for many years, I was not diagnosed until I was 18.

My seizures changed over the years, they got worse.

Yes my life is diff. but I know what I'm dealing with and with.

Being on my meds. my seizures are under control for the most part.

I hope you will get the help you need.
 
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