Wanted to say hi...I'm new to this site...

[WhyMe]

Little about me...sorry so long....its nice to get it out...

I had my first seizure when I was 21yrs old (09/2000)while I was sleeping. I was told to see my doctor, so I got up got ready and layed on the couch waiting to go and next thing I knew I woke up to the paramedics standing over me. I went to the hospital and they ran all their tests and didn't find anything and no one had any answers for me. Just told "take this medicine". I was than put on Dilantin.

Well after about 1 1/2 yrs I decided to go off my medicine. That didn't go so well, I woke up to my ex telling me I had just had another seizure. I went back to my neurologist and he told me to go back on my meds, so I did....
I hated taking a medicine and no one could give me a reason why, besides "you have Epilepsy".

I got pregnant in 2003 and everything went great and I had a healthy baby boy. I again stopped taking my medicine a year or so after having him. I didn't have any seizures and was happy to be off the meds...

I started having Deja Vue spells which I couldn't figure out. My mom thought I was crazy and didn't understand it. I just blew it off, thought it was stress...

I got pregnant again in 2007 and I had a healthy baby girl...I had again stopped my meds....and thing were fine UNTIL...

June 2009 I had a seizure while in the shower....I started to have a "Deja Vu" spell and next thing I knew I woke up laying in my bed and not sure how I got there. I knew I had a seizure because my tongue hurt like hell. I later checked the shower and there was blood in there.

I had to go back to the doctor and I mentioned to my neurologist about the deja vu spells and told him I had done some researching online and found out it had to do with seizures and he was like "yep"....I had never thought to mention this to him sooner..opps... I am now on Levetiracetam (which is the generic Keppra - much cheaper and works just as great for me)

I went back on my meds and was fine. I thought I would try to cut my meds in half so they would last long (I was paying $20 for 3 months last yr and now I will be paying $263 for 3 months this year).

Thanksgiving morning I started having a Deja Vu spell in the shower again and tried to get my mind off of it...Well I woke up to my husband holding him and telling me I just had a seizure. I hit my head really good this time and bruised my knee...Talk about a horrible day...

I now have come to the realization that I have to take this medicine no matter what....I hate it, but I know it is what is best for me....

I feel so bad for my husband to have witnessed my last seizure....I unfortunatley witness my 2yr old having a Febrile Seizre last month and that took a few days to get that image of of my head.....

Looking forward to chatting with others and getting great advice!!!!!

[epileric]

I was born with seizures & have been on meds since I was 3 or 4 years old. When I was 18 (a very long time ago) I did exactly what you did & decided that I would not take my meds as I was sort of sick of them. I was OK for 3 days then I had my first convulsion. That convinced me never to do that again lol.

Most my seizures are like yours with the deja/vu feeling. Something that a neurologist taught me & does help is when you feel it come on, count backwards by 2's starting at 99. You probably won't get very far (farthest I ever got was 91 and not often) but having to focus on that lessens the intensity of my seizures. Sometimes it lessens the after-effects (post-ictal effects).

Something else I do when I feel a seizure coming on is to take deep, long, slow breaths & try not to hyperventilate. It also seems to help. It took a few seizures for me to remember to do it before it was over.

In the meantime make yourself at home, have a cup of coffee and check out all the different rooms. The library has some great references (like a good library does) & the people here are really supportive.

[WhyMe]

Thank you so much for your post...I hate the Deja Vu feelings and any time I felt them coming on I would try to think of something else. This was before I had a seizure following one. The 2nd Seizure I had in the shower, I again tried to think of something else and I knew I should of said something to my husband standing right outside the shower giving my daughter a bath, but I of coarse didn't (shame on me)......have a great night....

[Bernard]

Hi WhyMe, welcome to the forum.

Your story sounds so familiar. It took a long time for my wife to come to terms with her need to take meds as well. We've explored a lot of alternatives and some have helped, but she still needs Dilantin to stay seizure free.

[skillefer]

Hi WM! Welcome to CWE. I am also on Dilantin. For me it works great. Like you, I also have a baby. ( Born in July of 09..) Feel free to ask questions, vent, etc.

[Cint]

June 2009 I had a seizure while in the shower....I started to have a "Deja Vu" spell and next thing I knew I woke up laying in my bed and not sure how I got there. I knew I had a seizure because my tongue hurt like hell. I later checked the shower and there was blood in there.


I now have come to the realization that I have to take this medicine no matter what....I hate it, but I know it is what is best for me....

I feel so bad for my husband to have witnessed my last seizure....I unfortunatley witness my 2yr old having a Febrile Seizre last month and that took a few days to get that image of of my head.....

Looking forward to chatting with others and getting great advice!!!!!

I started having simple partial and complex partial seizures when I was in my early 20's also. Then one morning when I was stepping out of the shower, I had another complex partial that went into a tonic clonic seizure. Somehow I fell backwards and fell onto the hot water and was there seizing long enough to suffer 1st and 2nd degree burns on my arm and back. I had been to the dr. because of these "spells", but he didn't make the correct diagnosis. If I'd only known back then what I know now. I don't think it is a good idea for anyone who is suffering from these kind of seizures to go off medication "cold turkey". You never know what can happen.

I was married, had two children still had seizures, which my children unfortunately had to witness many times because their father was a pilot. So, I had to train my children what to do and when to/not to call 911. (Now that they're grown, they would know instantly what to do if they were to witness a seizure in public). After brain surgery + VNS, I still have to take medication to keep the seizures at bay and I, too, hate it, but I am still live and kicking!!

[Nakamova]

Hi and welcome!

I know it's hard to commit to the meds, but it's a good idea to stay seizure-free for at least 5 years before trying to taper off under doctor supervision. I know because I've tried to taper off twice in the 10 years since I was diagnosed. No luck unfortunately, although I've learned something each time, and I know that if I try again in the future I will taper off extremely slowly (over the course of at least a year). In the meantime, I'm learning a lot from this site about keeping a journal to track potential seizure triggers, and also about the role that diet and neurofeedback might play. You can search for more info about those topics, and also post questions or just chat.

Best,
Nakamova

[dfwtexas]

Hi, welcome to our group. It is a place that is comforting to come to if you want to talk with others that understand what you are going thru. This place has been a Godsend for me for information, understanding or just venting. I got diagnosed at age 47 with both simple and complex partials. It has almost been 2 years ago and I am still stuggling with getting my Keppra level correct. My close friends and family know about my condition and I have educated them what to look for and to simply keep me safe until the seizure pass.
I am glad the generic is working for you, but there is a lot of information on here about dangers of generic seizure meds. I did not have a good experience and take brand name only
jenn

[BuckeyeFan]

Welcome WHYME.

Your screen name really reflects the feeling most of us have. Why me? Unfortunately, we have not yet found an answer to that in here, but do find a lot of answers that can make it easier to deal with E.

I have been on dilantin for over 28 years. I also had keppra as a 2nd med for 5 years until switching to lamictal last February. Those meds can offer some real challenges, but taking them as prescribed is SO important. I have not had a tonic-clonic in 6+ years, but I know the E is still there due to auras (actually a type of seizure and the source of deja vu) and other symptoms. If I miss a dose or two over a few days, the E lets me know it is still there.

Anyhow, welcome to CWE. By the way, I make better coffee than Epileric.

[hootie]

Hey...Is it just me or does it seem that many of you have seizures in the shower??? Could it be the chlorine in the water or the heat/cold or the sound, etc. that sets everyone off??? HMMMMM very interesting.

[epileric]

I thought it would be more likely to be the stimulation of the water hitting (stimulating) the skin.

Also it's one of the scariest places to have a seizure so it might just be where we're most likely to remember having one.

[skillefer]

possibly...or the fact that people tend to take showers at the beginning of the day or end of the day. Both times when people are tired.

[epileric]

It also occurred to me that too much steam in a shower might effect someones breathing & trigger a seizure as well.

[Nakamova]

Sometimes it's the lighting in the bathroom, or the sound of the fan (I think mentioned by someone in another thread). And for me if I raise my hands over my head too quickly (as when I'm washing my hair) that can be a trigger.

[Meetz1064]

Why Me? I love the screen name. I know I have certainly felt that way more than a time or two.

Like Eric, and quite a few others here, I too was born with E. I'm up to four different types of E, although mine are all nocturnal (in my sleep).

It sounds like you need to stick with the meds for a while, and possible consider some other alternatives to add to that regimen to help control them. Things like changing your diet, neurofeedback and vitamins (if you're not already taking any) will definitely help.

Keeping an E(pilepsy) journal would also be very beneficial to you to. It would help you to try to figure out what your triggers are. Some people (like me) have better control when their diet is under strict control....

I do know that there are others who are literally triggered by being too hot, or too cold....so yes, it could be the heat in the shower, or the steam or the lights. Lights are one of the most notorious triggers for seizures in addition to stress and lack of sleep.

Welcome to CWE, before I forget. I'm sure you're going to like it here. Lots of information to find in the Kitchen and Library, friends to make and even a Padded Room to vent in. So feel free to check things out, kick up your feet and relax.

Hopefully someone will bring some decent coffee.....mine's burnt again. Mr B, our host, has built us an AWESOME home here.

Take care, and don't worry, we'll be here for you whenever you need us.

Meetz

[RobinN]

Welcome to CWE
I hope you find support to help you deal with your situation here.

[Ruth]

Hi WhyMe, that is a great screen name. Epileric has a great signature line.

Bernard made this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

It's not so much as WhyMe, but educating ourselves and learning to live with it.

Glad to have you aboard!!

[Kween]

Hi WhyMe,
I see many have suggested possible seizure trigger(s) while in your shower besides these 2 which were my triggers, them being any kind of scented soap and shampoo not knowing I had allergies to them all, I now use only scent free products to clean everything with and 99% seizure free today because of it.

Sincerely
Kathy

[Ruth]

Protections for being in the shower:
1. Grab bars
2. No glass to fall through. I got rid of my glass frame and put in a shower curtain.
3. Shower Chair- you can buy one at WalMart. If you do not feel well, sit down and take your shower.
4. No slippery area rugs. Make sure you get rugs for you bathroom that will not skid.

Hope this helps, it works for me!!

[dfwtexas]

I am blessed that one of my adult sons lives with me so I don't have to be alone. I always take my showers at the same time of day and try to keep it short. I never shower if he is not home. I have been sick with a flu-bug this week and took my first bath in such a long time, but needed it to help with body aches, I told me son to give me ten minutes and if I didn't come out, come to get me. I lost a dear friend many years ago that had seizure in shower, it is always a scary place for me