guess er trips and seizures in the shower don't matter

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stormydys

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I have been trying to relate to this group and so far a few have helped and been kind, I have said I am sick and falling in shower with seizures, scared , last night I went to er, I was hoping for more contact or atleast some answers to my threads or just a hello, well that didn't happen , I can't say I dont belong here ,I do but am very upset by the lack of communication I have run across. I will stop talking about my seizures here, way too little communication, wish I didn't feel pushed out, or better word my posts are being ignored , you know someone else felt that way earlier and I didn't understand now I do, god bless
shonette
 
Sorry you took it personally. I guess folks are just busy. I know for me, I never have time to read all the posts. And sometimes I just read and don't respond because I don't have an answer.

I hope you stay. This is a very supportive group. Keep posting!
 
Hi Stormydys,

I'm so sorry your post fell through the cracks when you really needed some support. We are especially vulnerable in the shower; it makes the already awful experience of having a seizure even worse.

But I agree with CathyAnn, try not to take the lack of response personally. I think a lot of people, like me, browse through topic headings and only even read them if they think they will have something helpful to say. I rarely read many, let alone answer because my seizure experiences are kind of limited and specific. I only happened to read and answer a post yesterday because it had to do with strange sensations. I had been looking into explanations for some things I've been experiencing, and remembered reading something I thought might be helpful to the poster.

I've also sometimes felt that people here didn't care and quit coming for a while, but then had something come up that prompted me to come back and ask a question. Then I got many helpful responses. Sometimes it's just hit or miss as to whether or not we get responses. I really think people here are caring, just sometimes busy and preoccupied.

Please stay with us! We are all stronger together.

{{{HUGS}}}
Take care!
 
I think that the majority of us that use this forum have spells where we are on a lot, then times when we are off. You may notice by the counts next to your post that a lot of people probably read it, but felt that they had nothing to add that would help your issue. I know that I do that quite a bit. A lot of the posts are about seizures that happen during the day, and all of mine are nocturnal. Just depends on what the post is I guess.

Have patience and hang in there. We are here!!
 
Sorry Stormydys,

I missed that posting. Like others have said, please stay because we too have lives and sometimes we either get busy or have illnesses or loved we have to deal with. And that is what happened to me. My father is very sick and in the hospital again. Anyway.....
My 1st tonic/clonic seizure happened while I was on my out of the shower. I fell on the hot water faucet and lie there seizing long enough to suffer 1st and 2nd degree burns on my back, arm, and hip. I ended up staying in the hospital for 2 1/2 months for skin grafts and EEG's and more testing. That was back in 1980. I have temporal lobe epilepsy and over the years have tried numerous medications, had a left temporal lobectomy, and now have the VNS and still take two AED's, and on occasion still have a seizures.
I've also had a CP seizure while at the stove and suffered another 1st degree burn on my hand. Had to see another burn specialist for another skin graft on my hand. So my word of advice is: Be very careful in the kitchen and bathroom if you suffer from epilepsy. They can be the most dangerous places in the home, along with the bed. If one has the advantage of an aura, listen to it and get to safety ASAP!
 
Hi Stormydys,

I'm sorry that you feel there is a lack of communication on this forum but like the others have said we can get busy & sometimes miss posts or just don't get a chance to reply.

I always have a quick look at this forum in the morning but I am usually about to go out so don't always have time to post straight back. I also sometimes take a little bit longer to reply to some posts as I think about how I will reply as I want to make sure my reply makes sense & I don't rabble on too much.

I did see your post but didn't have a chance to post straight away, I was meaning to reply that night but forgot all about it :paperbag:.
 
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I saw your thread just now and wanted to say hi. Im sorry you feel there is not alot of communication on the board. I know alot of people log on when they have time. For me, Im a stay at home mom of little boys, so Im mostly able to log on during the evenings when I have alittle free time of my own. I hope you continue to post. Im sorry you feel like no one wants to talk or help you. Im sure there are alot of people here who would love to help.
 
I didn't have anything to say regarding seizures in the shower cuz I've never had one. I think its cuz I find my shower one of the most stress free places. I have been found at work in the wash room and have to say am really glad I don't remember cuz I'd never be able to look at that person again X) I know its tough sometimes waiting for an answer or feeling left out but we are here for you!
 
I read everything everyone wrote and I do apologize for feeling like no one wanted to reply to my posts, I'm having some rough moments that just wont go away ( thats putting it mildly) I am still seizing throughout the day and taking more klonopin to keep them from becoming dangerous. found out I am allergic to lamictal xr.
 
Stormydys,

I'm glad you decided to stay & sorry to see you are having rough times at the moment.

I see you have to be taken of the Lamictal because of an allergic reaction, has the neurologist put you on another medication to replace the Lamictal.
 
Glad you're back with us, stormydys :) I just hope and pray that you can get your seizures under control.

Take care!
 
New on this site and I am glad that I have joined, finally I can communicate with wonderful people who can relate to all the terrible side effects of epilepsy. Maybe even get some advice when needed. '' ''
~
 
Hi Stormydys,

I too had problems with Lamotrigne so was switched to Clonanzepam. My seizure are fewer but I'm being weaned off of Tegretol, and I'm feeling the effects- I think I need to continue on Tegretol.

Clonzepam is supposed to be good for anxiety- I'm struggling with that.

Re your seizures in the shower, put plenty towels on the floor and all around the shower area to help soften your fall.

We are a caring group- it does go quiet from time to time- stick in here with us, we all need one another!

Take care
Nick
:)
 
nicholasscott21 said:
Hi Stormydys,

I too had problems with Lamotrigne so was switched to Clonanzepam. My seizure are fewer but I'm being weaned off of Tegretol, and I'm feeling the effects- I think I need to continue on Tegretol.

Clonzepam is supposed to be good for anxiety- I'm struggling with that.

Re your seizures in the shower, put plenty towels on the floor and all around the shower area to help soften your fall.

We are a caring group- it does go quiet from time to time- stick in here with us, we all need one another!

Take care
Nick
:)
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I have been on quite a variety of anti epileptic meds including Lamicton, Epilium etc. The only meds that really worked for me without severe side affects is Tegretol. I rememeber when I had to take Lamiciton for a trial period. One of the side effects I will not forget is that it made the left side of my face and body go numb for a day or two.
 
I have been on quite a variety of epiletic meds including Lamiciton. I am currently on Tegretol. When my Neurologist put me on Lamicton for a trial period the side affects who not pleasant. I remember when the whole left side of my body went totally numb for a day or two. Tegretol is about the only one where the affects are not that bad.
 
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