Hello everyone

[kris1230]

Hi my name is Krista and I'm 20 years old. I've been struggled with heart problems for the last two years and I had surgery for that a year ago in december. The surgery was successful, but recently my EKGs started showing problems again. On top of that this year I was diagnosed with epilespsy. I have grand mal and absense seizures. I was having almost daily grand mal seizures and they come in clusters. They just changed my medication to depakote and I went one whole week and three days without having a grand mal!! Yesterday was the first time I had a grand mal since the medication change. I still have daily absence seizures though. The doctor's aren't sure what brought on my epilepsy. They also tell me I'm difficult to treat because of my heart and because I have extremely low blood pressure. I don't really know why the blood pressure matters. I'm having a hard time because it feels like my life was riped out from under me. There's days where I want to crawl out of my own body. I have to wear a helmet till we get things under control because I've had to many concussions. I was out with one of my friends the other day and she asked me if I could just take it off when we were in public because people look at us funny. I felt really bad and I don't even want to wear it anymore. I also hate not driving and having to depend on others for transportating. It takes away all of my freedom. I'm not this negative all the time but right now this is the hardest thing I've ever had to handle. I'm just kinda looking for some advice and to hear others stories.

 

[Bernard]

Hi Krista, welcome to the forum. :hello:

There are several discussions here about the relationship of the cardiac system to seizures. I don't have time to dig them up for you, but you can likely find them if you use the forum's search function and the word cardiac.

 

[RobinN]

Welcome!
I barely got through half of your post, and I am thinking .... are they not connecting the seizures with the heart issues?

I bet you are having a tough time. I don't blame you for your frustration. I know what my daughter does through at the age of (almost) 16.

I personally would be looking for the best heart specialist that understand how this can bring on seizures and see if there is a connection. If not... then you can rule it out, but I would get several opinions.

Hang in there

 

[kris1230]

misc..

I am currently working with a specialist because I was refered there from my cardiologist. About a month ago I was hospitalized for 10 days on a unit just for epilepsy and it was in the heart hospital so my cardiology doctors were able to come up and communicate with my neurologist. At the time I was there they didn't believe my heart was related to my seizures at all. Although they suggested putting in a recorder before I left so they could monitor my heart while I'm out in my normal routine and during my seizures just to make sure. I did do that and the monitor has caught some abnormalites that happen throughout the day. He said that i have spikes of a really fast heart rate, in the 200s. I was just at the neurologist and to me it seems that the two doctors aren't commicating the best. The neurologist described it to me as he believes they're two different things. He said the cardiologist was supposed to fax him but didn't so he was going to call him. I got the impression from my cardiologist to that they were separate but he wasn't sure. He said that in my history I've been known to suprize them. When they did my heart surgery they went in orginally just looking and were VERY surprized when they found I had an extra pathway. I really don't like my new cardiologist. He explains things to me but I don't understand and he doesn't really seem to care. My old one drew pictures for me, took time explaining things to me, and helped me make decisions. After my surgery I didn't wake up till late that night because they had to knock me out. Will he stopped by late that night to talk to me. I was sad because my family was celebrating christmas the next day and I couldn't go. So that next day he brought me up a teddy bear and visited with me, it made my day!! I totally flew out of the bed and gave him a hug....I was supposed to be on bed rest too. So anyway I've thought about getting other opinions. You think that's a good idea? I just don't want to hurt my doctor's feelings. I've been looking at the mayo clinic. Have you heard of it? If anything I'd really like to go back to seeing the cardiologist that did my surgery.

Yeah some days it gets really tuff for me and I get scared. Thinking about how something else can just take over and I have no control, scares me. Yeah I have a hard time with the loss of freedom, but I think more than anything I'm scared. I'm scared because I've stopped breathing, I'm scared because I don't know how to fight it. I hate the medication because I feel no good on it. I'm TIRED. Then I also there's the other side when I get really upset because of how I can't do everything my friends do and the not driving thing. So tell me about you're daughter......I would really like to hear about it.

 

[RobinN]

Don't you even think about "hurting" your doctors feelings. You think about yourself and what you need to do to find the clues to solve the problems. Yes I have heard about the Mayo Clinic and their excellent reputation. Why not just make a consultation with the cardiologist you like. Get some ideas about your next step. Go get more opinions and even more until you are satisfied. It seems odd that the two are occurring at the same time.

It is a scary time. You not only have the heart issues but now you have the seizures too. Do you have good support from your family?

My daughter will be 16 next Saturday, and a year and a half ago she had her first two seizures on June 23. I remember exactly what happened that day. She is an athlete, and had figure skated for three hours after having a Starbucks Frappichino Drink (cafeine, sugar, MSG...). I didn't witness the first seizure, and I thought she was just getting the flu so I loaded her up on chicken broth (MSG!) she had another seizure in her sleep. Odd how I was guided to the bed, but as I reached to turn out the light around midnight (she rolled over and seized). I called 911 because I witnessed this one.

She had abnormal EEGS a week later, but everything since has been normal.
Her MRI shows an area of the gray matter that is heterotopic which means it isn't where it should be.. it migrated in utero. Two doctors point to that as being the focus of her seizures, but another-UCLA says it isn't enough to classify it as epilepsy.

We are seeing a neurologist at USC right now, and she is very sweet, but she basically fills the prescriptions and monitors that. I am going fully loaded with questions and ideas about what I see happening on our next appt. Rebecca has had hormone related seizures, but now that is not as common since we put her on bio-identical progesterone. Her latest seizures can all be traced to MSG related foods. She only has tonic clonic seizures. She is trying her fourth med right now as all of the side effects have been terrible on the others.

I think her thought process, has a lot to do with how the seizures occur. I believe her body has an extremely low threshold due to nutritional factors, perhaps a genetic auto immune issue, hormonal factors, heterotopic gray matter, and stress that is self induced. So the route I am taking is nutrition-first, hormonal balance-second, stress relief, positive thinking and a better sense of self-third and the rest is in God's hands.

Sorry for the long answer.

 

[speber]

Hello Krista!....

Hang in there! Man, what a deal, huh?

Look...right now it's SO new to you that it's scarier than it might have to be....and it bites your life just changed SO greatly! But that doesn't necessarily mean you won't come to terms with this---OR (better yet and hopefully)--- find something that really helps you out!

Keep your mind focused on YOU being in charge of you....not the E.

PS. My friends would've put on matching helmets to make me feel better!....but we were all a bunch of dorks anyway and they would've matched the pocket-protectors!
:rock:

 

[kris1230]

Robin don't worry about the long answer, I like it...besides I write a lot. I'm going to schedule that appointment with my old cardiologist first and from there I can make more decisions. I'll take it one step at a time so that it doesn't add on to much stress. As for my family being there...sometimes. My moms in school for nursing and has 3 little kids with my step dad. She's really busy and really isn't around much. My dad isn't in my life, every once in awhile he'll come around, but he never stays long.

So you're daughter's really young to be going through that. How often does she have them? Does she have a hard time with it? I think it would be hard to go through that in high school. It sounds like she has a good mom though that's really by her side, making sure she's getting the best. I don't really understand why they can't diagnose her with epilepsy. I was actually diagnosed with epilepsy. That diagnosis came from my EEG. They just question if there not all epileptic seizures. They took me off of my medications in the hospital and tried to provoke seizures when I was there. As soon as they took me off of them my EEG started showing abnomalities. They only caught one seizure will I was there. Also will I was there was when they started finding abnormalities on my EKG again. So with your daughter what causes the gray matter to move like that? I like what you said about the rest is in Gods hands. I always say God only gives people what they can handle so I'm going to come out of this a much stronger person.

 

[kris1230]

speber thanks for the encouragement, you made me smile. I'll try to stay focused on me. I think it's pretty cool that your friends would wear matching helmets to make you feel better. I don't think that dorky at all, I think it's cute. The pocket-protectors too! The dean of students at my college wore one with me for the first couple days and helped me decorate mine so that I would wear it. My favorite colors pink so I made her sign her name in pink. She's been the most helpful for me going through this. She's seen quite a few also and she's been threre for me...holding my hand. She's even gone with to the hospital.

 

[RobinN]

I don't really understand why they can't diagnose her with epilepsy. I was actually diagnosed with epilepsy.

Oh they have.. I just don't buy the label. By that I mean of course she has had two or more seizures of unprovoked causes. My only frustration with labeling it is that the cause is not looked into. I ask the question of why was she doing fine for 14 yrs. I want to get her body to be back in balance and to raise her seizure threshold. I have come to the realization that we all have a seizure threshold. Some are just lower than others. I need to raise hers back up to where she no longer is haveing them.

It is a tough age to deal with them. In September she had 6 tonic clonic, in October 3, and now so far (knocks on wood) she hasn't had one. But I am serious about the MSG related ingredients in our food and ingredients that are neurotoxins. I really think this is a serious problem with many. Especially after head trauma. I would love to see if seizure reported to doctors went up after the increase of this product on our food shelves.

She has the majority of them at school, so I am not sure if there is a blood sugar drop, or a kindling effect going on here, or if certain nutrients are causing her a problem. The school has slowly learned how to deal with the situation, but for a while it was very traumatic. She pushes herself to get back into the game though. Hates to be away from school. I am proud of her for that.

 

[speber]

Maybe it's the helmet?....

NERDS ROCK!.....(>>>WARNING! if you are photosensitive the video has some parts that might bother you....be careful!)
:rock:

 

[kris1230]

Yeah I guess I don't buy the label either. I don't really understand the whole thing. So your daughter has quite a lot of seizure. I know what they're like. It's intresting that she has most of them at school, I also have most of mine at school. I go in at 7:30 and am there til 3 somedays other day's as late as 6. Mostly how late I'm there depends on my ride for the day. So you're daughter is pretty tuff, I would be proud of her too. She has a lot on her plate for a young girl. I would also question why it just came on. Mine just came on and the doctor told me that, that happens a lot. He said a lot of the times a cause is unknown. I'll have to start watching MSG, I was not aware of that. What types of foods have MSG?

 

[kris1230]

Love the video!! One guys wearing a helmet! I'm totally going to wear my helmet with pride. Those that are my real friends will be okay with it......what else matters? Where did you get the video?

 

[speber]

You go girl!....

That's a band called 'The Spazmatics'. My wife Renee and I caught 'em here in Austin once downtown at a club they're TOTALLY HILARIOUS...and yet?...TOTALLY ON! I don't want to seem like I'm pluggin' their band so I'll just say 'Google'...get it?
:tup:

:rock:
:agree:...Pssst! Bernard!...My favorite Smiley needs a helmet man!

 

[Bernard]

I think you are going to need to talk to the artists on the board about that. I'm stretched too thin right now to go searching for one.

 

[execwife2002]

Krista,
Hi and welcome. I'm a mom of a 19 yr. old son who has nocturnal seizures since the age of 12 1/2. He did go 2 1/2 yrs seizure free but for the past 5 years he's been having nocturnal seizures every 30 days or so. I know how frustrating it must be not to drive as we are dealing with the same situation with our son. He is very fortunate to have a number of friends who drive him around. He gives them gas money to help them out too.Patients is the keyword. All good things happen in time. It's also important to have a doctor(s) that you can talk to and understand what's going on without feeling bad. This is one thing you can control.
Marian

 

[brain]

:hello: Kris

Welcome to CWE!

I'm with you on the Cardio-Neuro Team.
I have them both on my side so I can
totally relate what you're undergoing.

I've been through it all:

Cardiology from Holter to BP/HR montorings
to no end in sight that usual readings end
up with Rare PACS without atrial runs or
RARE PACS. And S-Tachs. And EKG Readings
that gives Cardiologists headaches.
I've had Echocardiogram to TEE to Stress
Tests - as well as EKG recordings.

But my Super Brilliant Cardiologist finally figured
it out after studying all these Holters especially
at nights; he could tell when I was going to
have a seizure and he timed it (He has Neurology
knowledge had has connection and ties with my
Neuro-Team). And it just dawned on him.

Then going back with all the vEEG's, and EEG's
and they began to look at them, and began
to see it all.

Then on the Neurology side - have had
Scans of all types: MRI's, FDG's, CT's, X-Rays.
EEG's of all kinds - from standard to quantitative
to biopolar digital to name a few. Neuropsych
tests to psych me out to no end. Wada. And
my gosh - I forget what all. Just no surgery
yet ....

However - in the light of it all, because of
my brilliant Cardiologist saw something
that it did line up with the Neurology,
It made it so much easier now in the ER
(Emergency Room) to hook me up to the
Cardiac Unit and set the alarm, because once
it went off, they know I was going to seize
again and would rush to see what type of
seizure(s) would arise. (Tonic Clonic, Complex,
Absence, etc) And if it's status, the ER Doc
would then order up Ativan to stop it.
EKG is so much easier to hook up than EEG.
But of course, I have no memory of it until
after it's over with and they tell me.

In fact I see my Cardiologist next month
and my Neurologist next month... Oh Joy!
NOT!

 

[speber]

I think you are going to need to talk to the artists on the board about that. I'm stretched too thin right now to go searching for one.

word.

 

[RobinN]

hmmmm have very little digital ability.
I can sketch you many different designer styles, but to upload them into smilies... not my gig.