Handling Life with seizures

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Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 10/4/2005 7:27 PM (GMT -7)   
I don't know where to begin. My beautiful 15 year old has been "passing out" since she was 9. Her primary care physician said "some girls just do that". When it got worse I asked for a referral to a neurologist. He referred me for an EEG which came back showing no seizure activity. I never even got to speak to a neurologist. Long story short, I finally had enough and insisted on another referral since she was doing this more often and had all the blood sugar tests and cardio work up. This time I went to a neuro that a friend told me about. She had another EEG that showed no seizure activity. The doctor listened to me and what happens to her. He gave her an MRI with contrast that showed scaring on the temporal lobe.
 
ANywho, she has gotten worse these last three months. He put her on Keppra, she seems to be tolerating it very well. He still doesn't call it epilepsy but seizure disorder and migraines.
 
My daugther is so tired of this. She had went almost a month without seizure and then had two long ones this weekend while away with her dad. Do seizures get worse with stress? She had a fight with her Stepsister over something her stepmom did. How do I keep her spirits up? She is a wonderful caring child. I took care of my bedbound grandmother for almost two years. You would not beleive how this child helped me, holding bags open for the ?*&@# I had to clean up and patiently feeding her to give me a break. I just need prayer and advice for my girl. HELP!

Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 10/5/2005 5:54 AM (GMT -7)   

MandiAnn, Thanks you're so sweet.

The answer is yes, most of her seizures come a few days after her period. This last one was before but she was stressed. yeah

Thanks for the advice. She loves music. She had to quit band because they are a nationally competitive band and if she went out, they would just march over/around her till they were done, or at least they would need to to compete. She gave it up for the rest of the band. Like I said she's a great and thoughtful girl. I'm just worried about her.

Beth B. in TN

 


cCindyg
Regular Member


Date Joined Sep 2005
Total Posts : 123
   Posted 10/5/2005 12:39 PM (GMT -7)   
Beth,

I can only speak from my personal experience and toss in what I know medically as well. (I'm a pharmacist and keep up my hours but due to illness haven't been able to practice but having grown up in pharmacies and my dad still having them that gives me some extra knowledge...or also know where to get it when needed to which to me has always been most important.)

Like your daughter I started the "passing out" thing when I was around 9 or 10 y/o. Things like once I was sitting at the table eating a bowl of cereal after track practice and just talking away 90 to nothin' ...then poof!....there I went face first into the cereal. Several times after some sort of strenuous excerise usually for whatever reason?? I would be in the shower and "pass out" only to wake up on my back with the water hitting me in the face as I lay there. Several other similar type episodes.

As I'd always had low blood pressure (average for me is around 90/55) it was blamed on that for some reason? Then when I was in pharmacy school and wouldn't you know on rounds with the med students and instructors I went into a patients room with everyone and noticed a smell. I'm not one for smells to get to me or gross me out, make me sick, that sort of thing. Noone else smelled it but me I later found out too. I just remember smelling that and not so much that it was gross or anything but I just felt this feeling come over me that I was going to pass out. I knew it was going to happen if I didn't do something fast so made a quick dash for the nurses station outside the room.  Evidently I barely made it that far as I thought I was trying to just lean on it for a sec and feel better but I then went down ripping my dress all the way down the front on the corner of it. I woke up when they were taking blood gases. I remember then being told I had had a seizure and was sent to the ER. I got very beligerant about it and kept informing the neurologist I had low blood pressure and had done this my whole life and it wasn't a big deal. Well, as everyone had witnessed it they were able to say just what had happened and evidently when I was on the ground I stiffened up like a board with my arms straight to my side, my head went straight back and my jaws were clenched tight.

I still don't know just EXACTLY what type seizure it was with that particular one but since then have been diagnosed with a number of different types and have had all from grand mals, petit mals, complex seizures where I would just walk around, pick things up and put them back down and just be in this fog and not be able to think straight or figure out where or what I was doing. I've done things like go to WalMart or Kroger and end up there for 12 hours or more only to be found in usually the magazine isle for some reason most of the time and either zoned out and unable to speak clearly or really at all and didn't know where I was to having a grandmal right there. My doc has told me the lights in those places can really make things worse and now I'm always supposed to ...and do...wear a cap that has a long bill on it to block out the lights and can tell you it has made a world of difference.

I've also done things like talk about something or really more just "jabber" for who knows how long...probably somewhere between 3-5 min to then "wake up" and realize I don't remember one thing i said or even what was being talked about. I'm at least to the point I can say to whomever it is...usually friends or family in that case for whatever reason?....that "sorry....I don't remember what I just said or was talking about" and they understand and will refresh me. That doesn't mean I remember what I said of course but I can usually remember the fact that that's what we were talking about. Sometimes I'll remember what I was wanting to say but usually not. This also seems to happen when I'm typing and one thing I've noticed is that the computer moniter will most definitely increase my seizures or at least certain types. I try to limit my time to say 15 to 20 min on then will take a little break. If not I'll go back and read whatever I'd written and honestly don't even remember typing it, what my point was, what I was thinking...or really even doing it for that matter.

Some of the scariest types I've had are ones where I actually "do" things and don't remember it. For instance....one time I just had the strangest feeling all day that something bad was happening or had happened but that noone was telling me. I thought they were keeping something from me knowing I was sick and had enough worries. I spent the entire day calling close family members and friends over and over...and over and over!!....asking the same thing constantly. What was going on and why wasn't anyone telling me?? What had happened?? Who was hurt? I was in tears and upset the whole day. There was NO doubt in my mind something severe had happened and it was being kept from me. After I went to sleep that nite I just remember "waking up" once and I was standing in front of the refrigerator with the freezer door open.  I went back to bed and thankfully my dad was living with me at the time as I'd lost my vision prior to that and had other health problems going on and he was able to calm me down. After I got back to sleep I evidently got out of bed again and "woke up" to find myself sitting on the toilet. How I got there is of course a mystery to me! If anything else happened that nite I don't remember it but there have been other times I did things my dad told me about that I don't remember.

Do I feel lack of sleep contributes to any type of seizure? Without a single doubt!!! I've since been diagnosed also with narcolepsy and cataplexy and honestly wonder alot just where the line is on it. I mean the grandmals? That's obvious to me I've had a seizure ad my tongue has been chomped through and it's a very different feeling than the other "seizures", "narcoleptic/cataplectic episodes", combination of both ...or just whatever they are? I do go to the sleep clinic for the overnite stay part of it this coming Monday and am hoping to get some more answers then.

Ok, as to what I feel as helped me and also what I would advise for your daughter? I wasn't put on any seizure meds until my late 20s. I was put on numerous ones and even then would have problems. I then started doing some research on my own and yes, am thankful for the fact I didn't even realize I had a problem yet when I chose "seizure disorders" as one of the 9 week rotations in pharmacy school during the last year. That was informative but honestly what I've found out on my own has been more helpful in keeping me seizure free as the other had more emphasis on the causes and types of different seizures.

The things that have helped me in addition to medications (which btw I now only have to take Tegretol and as long as I take it and follow my other "things to do" I do extremely well....as I said before....BETTER than extremely well even.)
I've found that I have to:
1.Make sure I get plenty of sleep and am never sleep deprived or you can bet your last dollar something will be triggered and cause me to do or have some type of somthing! 2.Diet is HUGE. I avoid first of all ANY artificial sweeteners as well as even too much sugar. Some doesn't seem to be a problem but too much is certainly a problem! I have low blood sugar as well so have to have some and have found it's the "refined sugar" that can cause a problem as opposed to getting your sugar from natural sources. Even then don't overdo it.
3. Exercise for whatever reason makes more of a difference than I can tell you. This must be kept in moderation of course as TOO much exercise and me being tired either or both physically or just my muscles feeling not sore but rather that I've overdone myself will set me off.
4. As I mentioned I watch for lights in various ways. First in stores where they have the large flourescent kind you can bet I'll have on a long-brimmed baseball cap.
5. I try to limit my time on the computer.
6.  Stress if the biggest factor of all for me. It will trigger all sort of things in my body but most definitely seizures. If I don't watch out and keep my stress load to a minimum I know just what I'm headed for and as I want to avoid all the other have learned both good coping/avoiding skills

ok, I REALLy am sorry for this HUMONGOUSLYpost I've just written!! I did want to fit in as much as possible and while I'm sure I'll even think of a few more things I think I've given you more than plenty to read and think about for the time being! ACK!  I do hope you find some of it helpful and please feel free to contact me with any questions or just whatever! I believe we all go through things in life for different reasons however some are constants and apply to everyone. One of those "constants" is being able to help others through what you've been through. I simply don't believe we're put through things in vain unless by our own choosing. We all need each other and if I can help only one in some small way then it is all worth it.

...take care and keep me informed!!! cindy

Post Edited By Moderator (MandiAnn) : 10/5/2005 2:07:42 PM (GMT-6)


cCindyg
Regular Member


Date Joined Sep 2005
Total Posts : 123
   Posted 10/5/2005 7:30 PM (GMT -7)   

LOL!!....glad we can laugh about it Mandi!:)  I didn't realize I'd not only written a novel but topped Moby **** until after i posted it and looked back and then nearly passed out myself!!oy!!  .....wouldn't say that was a seizure related pass out though but just a "WOOOOOOOOOOOOOOOOW!!!....what got into you there Cindy??" passout!:)

 


DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 10/6/2005 11:51 AM (GMT -7)   

Hi Beth, your story could have been written by my Mom.  She struggled for years with neuros and Dr's trying to convince them that I wasn't just "Daydreaming" and that there was something wrong.  This was back in the 70's though and it seems that we should have moved beyond that by now.  Sorry about your struggle but you're on the right path atleast.  I've had sz's since I was 1.  I initially had a grand mal but no sz's again til I was six.  They were complex partials so they were not as easy to diagnose.  I would just stare off and not talk.  I didn't have a positive EEG until I was 19 when I had another grand mal.  But to this day they can't ever catch a sz on an EEG unless i'm in the hospital for a week.  My sz's are also catamenial like your daughter's and so usually it's better to try and schedule a future EEG around her period.  Keeping a journal of her sz's and period start dates will help alot.  I still do to this day.  My scarring was in the right temp lobe and my Epileptologists have all told me that this type of Epilepsy is very difficult to treat.  Don't give up.  Seek out an  Epileptologist once your daughter has officially been diagnosed.  You'll get awesome treatment because this is their field of specialty.  My best to you and your family.

Christine

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