New to the neiborhood

[tkopi]

Hi everyone my name is Tom and I just found this site and I think it is sooo great at how much support you show each other. I live in a small town in Pennsylvania and I am 43yrs old. I had my first siezure when I was 8yrs old. Since then I think I have been on every seizure med. ever made without much luck. I can go for it seems like a couple of months without having a seizure but then all of a sudden I can have as many as 4 or 5 in one day. I don't know if this happens to anyone else out there but I seem to have alot of my seizures in the shower. I am carefull not to have the water to hot or to cold so it's not a big shock to my body but I still have them there. Has any body been in this situation before?
Well so much for the short intro. Nice to meet you all.

[Crazy Monkey]

Hiya Tom

Welcome to CWE

You're right, everyone on this site are very supportive of each other, I have found it a great place to chat and make friends. Thats for the shower situations - I cannot relate to this as I have absence seizures and blip out about 50 times a day, maybe someone will be along soon who have had similar incidents happen to them.

Take care

[josieb]

Hi Tom,
I'm also from Pennsylvania and wanted to welcome you to the group. I'm certain that you will find it to be a great site with so many wonderful members.
Sincerely,
Josie

[Nancy]

Hi Tom -- Welcome aboard. It's good to meet you.
Can I ask what kind of seizures you're having?
I was having those complex partials.

[tkopi]

Hi Nancy
Nice to meet you. I also have complex partials. What a pain they can be (literally) I have come out of the seizures with bruised knuckles even burns one time when I sat on a lit kerosene heater.

[skillefer]

Hi tkopi! Welcome to CWE. I've never had a seizure in the shower (knock on wood....and sawdust counts...) So I can't really respond to that aspect of your post....however, welcome to CWE. Feel free to ask questions, vent, or just chime in.

[tinasmom]

Hi Tom -
I'm so glad you found CWE. This place has been so informative and helpful to me. I'm sure you will enjoy being here as much as I have.

[Homer Taylor]

Hello Tom

It seems we suffer from the same problem.I also have partial complex seizures in clusters .Miy afteraffects are not as severe as yours.I'm courious about your medications and freguency of taking them.I'm considering med. change and how to best work a new medication in with the least amount of damage to my body.I'm new to this site also and hopr to build meaningful and productive relationships.

Good luck 1

[BuckeyeFan]

Come on in and stay awhile. I'll get some coffee. There is plenty to read here from some really good folks.

I have read of a couple of others who had hot water as a seizure trigger (don't know about cold). I had my first at age 20 in the bath, but do not think that was the trigger. Many years later I had one either in the shower or while I was getting out (tonic-clonic). All I remember is waking up on the bedroom floor with a couple of bruises and still wet from the shower.

Stick around and I think you will find many benefits to this site. Support, information, some humor, and good friends from several nations.

[Cint]

HI TOM & WELCOME,

I started having seizures 25 years ago. Before being diagnosed as epilepsy, they started as complex partial and then one morning as I was stepping out of the shower, I had a complex partial seizure so I set down on the floor for a few minutes, the next thing I remember I was at the hospital and ended up with burns on the right side of my body from the hot water. They say I had somehow stood up and when I did is when I went into another seizure (tonic/clonic) and fell backwards into the bathtub and ended up hitting the hot water, lying unconscious long enough to suffer 1st & 2nd degree burns on my back & right side. So I was in the hospital for several months for the burns and for testing for seizures. But back then, we didn't have the technology we have today nor did we have the medications available.

For me, I don't think the hot water triggered the seizure. At the time, I was having seizures 1st thing in the morning. I just happened to be in the wrong place at the wrong time. Even after being on multiple different meds now, having a temporal lobectomy & VNS surgery, I've had seizures at morning, noon & night.

Hang in there and I hope you find the answers you're looking for!

Cindy

[alivenwell]

Welcome!

It does sound like there must be some trigger that's causing the seizures. Since you said 'most' are done in the bathroom, it may be something outside the bathroom as well.

Does your bathroom light flicker? Some people with seizures are sensitive to flashing lights.

Do you take your shower at the same time every day? It could be that the time of the day is when your dosage is at its lowest. I've been instructed to get blood tests in the morning when levels of meds are at their lowest.

If seizures are at night, that can narrow it down to time of day, bathroom products or the inside lighting.

Have you had your water tested? When I was a kid, my mom found floating stuff in our drinking water. Nobody believed her. Right after we moved away from the neighborhood, everybody got sick and they determined it was our drinking water. Have you felt sick?

My water company was about to add chloramine (it has ammonia in it) to our water supply rather than chlorine. Do you use well water or a water company's supply? Have you had your water tested for various unsafe chemicals, toxins or bacteria?

I knew somebody with well water. There were toxins in the water even with a water filter built in the house. They went to the store and bought bottled water for drinking.

Maybe if you bathe using bottled distilled water (purified w/out fluoride, chlorine...), that could eliminate chemicals added to the water. Then, you'd know if it was chemical content of water. If you use bottled distilled water set at room temperature, that may eliminate the temperature factor as well.

Just a few random thoughts.

[brain]

Tom!

Welcome to CWE, as I had posted to Homer,
seizures DO change as we grow older, even in
as young in our 40s ... and the link I provided
to Homer would be of benefit for you too:

You might find this link may be of more help for
you from the Epilepsy Foundation:
Seizures In Later Life - Epilepsy Foundation

I, myself, am experiencing changes in life, as
well as many other things, including increased
seizure activities. After the upcoming tests this
week, then the next move will be back to my
Primary's Office and then I believe from there
everything will be moved forward.

It can be a major pain in the rear end for all
who are undergoing through these. But you're
encouraged to make yourself a home here and
feel free to browse around and make yourself
a home!

[Meetz1064]

TK, and how do ya do? It's nice to "meet" you! You've found quite a neat place to be here at CWE!! Mr B has made us an AWESOME home here.....

Alivenwell, and Brain both brought up some wonderful points. Seizures can suddenly start up later in life as Brain brought up. And, as Alivenwell stated, sometimes, something as odd as ammonia or chlorine or even fluoride in the water can trigger a seizure.

Another thing to consider is the TEMPERATURE of the water. You stated that it seems to happen apparently no matter what the temperature of the water is. Why not keep a journal to really keep track of that for sure? As well as other things, like sleeping? what you've eaten and your meds, etc?

The reason I bring this up is that the TEMPERATURE of the water can sometimes be considered a trigger for a seizure--a type of seizure called a REFLEX seizure--they can also be triggered by sound, light, food....amongst other things.

Good luck, and take care. Oh, and don't let E run your life. Knowledge is power. As long as you have knowledge, you can have some control.

Take care!

Meetz

[Bernard]

Hi Tom, welcome to the forum.

There is a class of seizures called reflex seizures which are triggered by stimuli to one of the five senses. Touch is one of them. Anything is possible (as far as what could trigger a seizure) and everyone is different.

There are a few reports here and there of folks having seizures in the shower, but I think in many of those cases it is because the water is too hot.