Help I just found out I have seizures!

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Solicity
New Member


Date Joined Jan 2005
Total Posts : 3
   Posted 1/25/2005 10:40 PM (GMT -7)   
I had to events in the last 3 weeks and today I had a weird sensation so I went to the hospital .....Under the pressure of family and they said it sounded like i was experiencing partial seizures. They called the DMV ..So now I can't drive. I am a soccer mom so I really need to get my boys to thier events. I feel so dependent... I also have to have other tests done and was told they could cost up to and over 10,000 dollars. Can any one tell me what a partial seizure is? ohhh im so frustrated!

Huntress
New Member


Date Joined Jan 2005
Total Posts : 9
   Posted 1/26/2005 6:43 AM (GMT -7)   

Oh my gosh! I'm a mom of 3, just diagnosed w partial complex seizures in the last few weeks. I've had something like 27 in the last 2 months, 2 yesterday.

Allegedly, only half your brain is misfiring. Not the whole thing. It's still extremely disabling. They can develop into the whole thing, Grand Mal.
 
* Avoid triggers like low blood sugar. Moms forget to eat all the time. Now, I get up and start my day at 5-6am w some apples and peanut butter, followed by a protein drink. I eat nuts and raisins for snacks and don't drink pop. Stay away from refined flowers and sugars, if you can. They blast your system then bring your blood sugar down. This is even if you aren't hypoglicemic.
* Also, always get the rest you need. Lack of sleep is a major trigger.
* Ask for a blood antibody test to see if you're allergic to any foods. Food allergies can trigger seizures.
 
* The meds out there are all pretty crazy. Fairly common side effects include depression, dizziness, tiredness, weight gain, hair loss, memory problems, difficulty articulating or reading, and gum and fungal problems. My mom has seen them frequently (something like 75% of her patients have seizure disorders). I will find some websites for you and send them to you later today. 
 
* I haven't started on meds. I am pregnant. I want to, but I haven't figured out the least scary place to start. Right now, my dad (a pharmacist) says try Luminol. (dizziness or tiredness  are about the most common with this one, but it doesn't come w/ a lot of other weird ones. Unfortunately it is addictive, and kind of old school. The Dr's are worried about addicting me or the baby.  I could care. Heck. All meds take a while to get off. If this one isn't working, take me off of it slowly, just like the others. If it is working, well, then I need to take it every day anyway. It's the baby I worry about. Moving along:
 
* Have you had an EEG? They want me to have an EEG. Sounds fine, but check this: they want me to stay up 24 hours in an attempt to induce a seizure. I think not! I figure tehy can simply monitor me for a couple days. The longest I've gone w/out one is a week. It was great. But I can't fathom the need to torture me to induce one. You know, years ago, they used to put MS patients in hot baths in an attempt to trigger an episode. Now it's considered barbaric. Get tested, but don't let anyone push you around either! You are not a lab experiment.
 
* An MRI can help eliminate something like a brain tumor as cause. Get one. I just found someone who will give a prego mom an MRI and am having one at 6am tomorrow.
 
* Hmm.. what else? Stress triggers them, too. Try to be cool. Deep breathe a lot. Explain to your kids what's going on, in a calm way.Tell them there are meds available, but it may take  a bit of time to find the right one.  Make them practice dialing whoever they need to dial when you seize. Make them note the time. I don't know what else to say. No one's advised me further about what to do with my kids.
 
* It's kind of depressing to lose so much freedom. Feel free to share your thoughts and frustrations. I'm there in the trenches with you, as are a lot of people. Try not to get too many people in your world worked up about it. By the time you get settled down, they may still be hysterical.
 
* Another day we can talk about careers from home. I'm too tired now, but I'd love to brainstorm with you. 
 
* My mom said a misaligned neck can cause seizures. I went to a good chiropractor when I was feeling spacy, and I felt 100pct better. I went to another one and had a seizure immediately after. This is very tricky.
 
Good luck. Please feel free to share anything you want...about your kids, your spouse, your life.
 
Lydia
Mom of 3
searching for correct meds


Huntress
New Member


Date Joined Jan 2005
Total Posts : 9
   Posted 1/26/2005 6:47 AM (GMT -7)   
PS. Not everyone has the same symptoms. I get very spacy. All colors seem weird. Everything gets distorted. Sometimes I ehar a buzzing sound. I lose all stregnth in my body, my head tilts. I don't smack, but I can't talk, or I say weird stuff. I generally lose consciousness, but sometimes I'm still awake, just unable to speak.
Lydia
Mom of 3
searching for correct meds


Huntress
New Member


Date Joined Jan 2005
Total Posts : 9
   Posted 1/26/2005 6:50 AM (GMT -7)   
PPS Don't try to drive!!! IT STINKS NOT TO, BUT IMAGINE IF YOU ACCIDENTALLY HURT SOMEONE. That would be enough stress to make you seizure right into a complete coma. Get your soccer moms together for coffee one night and tell them what's up. Ask them to cover for you. They will.
Lydia
Mom of 3
searching for correct meds


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/26/2005 7:10 AM (GMT -7)   
I just wanted to stick a comment about meds in here. In the above there were alot of nasty side effects mentions by meds. All a possiblity but this is not true for everyone. It depends on your epilepsy and what med you are on. There are alot that make you loose weight, takes care of manice, controls concentration (improves) lessens current anxiety levels. and the list goes on and on. I didn't want the above to scare you away from meds. Being on meds is your BEST chance for seizure control and being allowed to drive again. After my first Grand mal and alot of testing I was put on Keppra (I didn't want to ) Neuro told me if I ever wanted control or maybe to drive again I had to do this. And I have had wonderful control. I passed my 6 month mark TC free and now legally I can drive again. I could never imagine the pain I would be in if I knew I had E, Drove, got in an accident due to my e and hurt other innocent people. IT is hard to deal with at first. Even for 2-3 months. But things will come togther. Your friends, neighbors and people you didn't even know were such good friends, will be more then happy to give you rides and all of that. I wasn't very accepting of that because I was a 23 year old independant nursing student. Needless to say I was yanked from the program having no license and having to rotate between 8 area hosptials. Take care of yourself, get plently of rest and follow the dr.'s orders. Keep coming here and asking questions and get on the internet as much as you can and educate yourself. Education is Key. Good luck take care, Tracy
 


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/26/2005 7:21 AM (GMT -7)   
Huntress, I hear what you are saying about inducing a seizure. I does sound like torture to you. But it is for a very good reason. SO they can find your focal point, see exactly which part of the brain is misfiring. They need this to put you on the proper med (s). I think if you could get that out of your way you could be on the road to a healthier life. I don't think they want to induce seizure activity while you are pregnant do they? Probably after your pregnancy is what would sound the healthiest for the baby. Take care, good luck
 


Solicity
New Member


Date Joined Jan 2005
Total Posts : 3
   Posted 1/26/2005 1:41 PM (GMT -7)   
Thanks guys , all your input has made me feel a bit better but to be honest i'm not sure i will fell excellent until i go through all the testing the have in store for me . I tlalked to my mother with whom I don't normaly talk to and she informed me that I actually had seizures for almost four years as a child and I was on phenobarbitol .She had never told me previos to this and I really could of used this info when i went to the doc.... ah well I know now . I guess . anyway thnks guys.

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 1/26/2005 6:23 PM (GMT -7)   

Hi Solicity, sorry about the recent diagnosis.  I have three girls and I know how frustrating it is to not drive.  I've had sz's since I was a child so not driving isn't something that's new to me but nonetheless it's still awful to be dependent on others.  It's not unusual to have sz's as a child, go for a period where you are sz free and then later in life have the sz's reappear.  I have mixed emotions about video eegs myself.  Personally with your history of sz's, and your recent symptoms, I think an eeg done in the office or even a 24 hour eeg would be sufficient. But I know from experience that when you have to be admitted into the hospital for a video eeg it's very hard on your family.  You have to be there sometimes for a whole week.  And even then it's no guarantee that they'll catch a sz because sz's at times can be elusive almost like taking your car in cause it's making a noise but when you take it to the mechanic it doesn't make any noise at all.  There are so many anti epileptic drugs out now that they can almost be tailored to your type of epilepsy and tolerance for meds.  I'd suggest you also see an Epileptologist instead of a general neuro.  You'll never regret doing it.  Hope this helps and that you're feeling better.

Christine   


Solicity
New Member


Date Joined Jan 2005
Total Posts : 3
   Posted 1/27/2005 3:44 PM (GMT -7)   
Thank you christine i appreciate the advice and i will look into it!
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