Has anyone out there had the in hospital video eeg? I have had E 20ish yrs...first one for me... What should I expect? Any stories?

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Lisa, my son has had several EEG's in the last few years. Expect some boredom. :) Take a good book, your favorite DVD or something else to keep you engaged. Think of it like an airplane ride. Where are you having it?

- Annette

I am going to be @ the university of utah. The dr. Made it to be a dream vacation...no kids,laundry, they. bring you food, watch movies, wii, cable, did I say no kids? Lol! Then...the assistant mentions that they will be taking me slowly off meds...I am kind of assuming that this is if I don't perform...which would be my luck. I am so frusterated with my brain right now! My BODY is frusterated with my brain...it hurts! I had the most horrible. moments in the last 24 hrs. Yesterday, my 4yr old came up to me after a pretty strong group of myoclonic jerks. She said "mommy, I don't want you to be jumpy anymore". I explained that I don't either and what is going to happen in the hospital. That we are TRYING, but it is just that, trying. I don't want her to be dissapointed or mad if we can't at least make things liveable.
Then today...my kids were playing with my husband, wrestling around. As if it wasn't bad enough knowing I can't join in, my daughter(laughing) started yelling "mommy help me!" I was getting up to go videotape them playing...fell...couldn't make it into that room so went into the bathroom and cried instead. I was so proud that I was doing my best to be involved in some way, even if it wasn't the fun way...I would be there.

Not being able to run...or at least walk my way to the *rescue* no wonder people put epileptic parents into this "you shouldn't have kids" box.

I know, I sound horrible, sorry to be debbie downer, just one of thoes days.

I have had epilepsy since I was 12. I am 37. I have Juvenile Myoclonic Epilepsy. My sister also has JME. She had same onset and is 49? I always knew I was going to have kids..eventhough her son had so many problems from dilantin. I was doing so much better...and still am. My kids are perfect. My pregnancies were good, no probs. With side-effects(Lamotrogine & Clozenapam for both) in the last few years though my comprehension, reading, memory, ability to walk...all have gone downhill...fast. I am in therapy to try to deal with all of this...it helps, but still there is something that is not right. I want a fix. I want it now. But don't we all.



I am scared that this will be time away from my kids, that worries them, that is lots of $$$ and that it will not change anything for the better. My sweet husband is SOOOO patient. So helpful. So loving. So supportive. I am terrified that one day he will decide that I am not worth it. He has to be a single parent most of the time, I am not sure how much longer my job is going to tolerate me having to take off for bad days...falling at work...sick kids...etc. I wouldn't blame him! He is a dr! It is a safe situation for me, but my memory is no help, and when I can't be there for unknown amounts of time...what do I do?

I hope and pray that the cure for your son comes quick. Whatever it may be. We all need to get better.
Thanks! Any suggested movies ;). I will have acess to netflix...maybe catch up on some shows I have wanted to watch...lol!

Oh honey! I completely understand the frustration! You can be a debbie downer...you deserve it...just don't live there forever. :)

Bug is on both Lamtrogine and Clonazepam as well. The Clonazepam makes him a little clumsy...and my walls show it. :) 

I hope that you seize for them so they don't have to wean the meds...that sucks big time. And do NOT every think that your family deserves better or more...you obviously give them all you can and then some. Not every woman would risk what you did to bring your children into this world. That must have been a very stressful and wonderful time, being pregnant. 
 

I do wonder if you have something similar to my Bug. The folate deficiency can take years to show up and it is what you have described. Hmmm...you don't by chance have Rheumatoid Arthritis do you?

Sorry for the delay in response.

All my best. - Annette

Thank you so much Annette. Your words help so much (even if they made me cry a little...reading what I wrote before did too). I have never been diagnosed with RA. I know it runs in my family & I know I definately have some in my hips (it's letting me know a LOT lately). I really hadn't thought about that at all. I know that when I am in any kind of pain (even a headache or shoulders...stubbing my toe...) can trigger some myoclonic jerks. I have had so many kinds of problems that sometimes the line gets a bit fuzzy. What is the E and what is clumsy and what is just me? It has been so long that I can't always tell. I really am a much more positive person than when I wrote my previous post, I swear. It just gets so frusterating!

On the fuzzy line thing for example...yesterday I hit my foot on a chair but jumped a bit as I fell...they both happened about the sametime...so was it clumsy, E, both (that is kind of what I think this time) but often I can't tell if the jumpy caused the fall...or the fall caused the jumpy. Aarrrgghhh!

Thanks again for the sweet comments, they are very helpful.

Ah ha! Whenever Bug gets injured...he seizes. The folate deficiency makes his central nervous system very sensitive. 

I hear you on...was that the meds or...???? Very frustrating. And those myolconics...argh. Bug has had every type of seizure and I can not tell you how many times someone has said: Don't throw that. And I say: That was a seizure, he wasn't throwing it. Then I proceed to describe myoclonic seizures whether they want to know or not. :)

And you are very welcome. I have been in that place were things just feel so isolated and I will never let anyone feel that way...especially because of their epilepsy! It is not who they are, it is merely a condition they have. It jsut happens to suck more than most. :)

I don't mind telling people about E, it is HAVING to as almosti an *excuse*. I can't imagine what it has to be like as a parent. I feel horrible for my mom. My sister & I are both, but both my brothers have had one in their lifes. I always want to protect them so they think all is good, I guess because I have seen how they treat and feel about my sister. She has had SO many more probs. than I have. She has had to rely on them for support and has been extremely dependent on others. I can't do that. I am not a person to ask for help, to admit my weekness. To anyone. If I am having a great day, I don't mind talking to others about it, but if they see somehing, I am embarrassed to talk about it. Seems weird huh?

When was "bug" diagnosed? What kind? How old is bug?

Again, I completely understand. I didn't want any help from anyone with Bug. He started seizing right before his third birthday and regressed. During that regression, he had one T/C a month but his behavior was abismal. He liked to play with his feces, he would run from room to room hitting the walls and the run back to the other room, he would empty all the toys out of the toy bin and then, while I was cleaning up, he would drag my jewelry out and dump it on the ground. It was a little routine we had. :) And I could NOT bring myself to ask for help. Mom's would tell me "it gets better" and I would just smile and think: What you don't know...is a lot. :) I learned some smart aleck coping techniques that have served me well and kept me talking about his condition as if I am talking about how he plays soccer (which he doesn't). And no, it's not weird, not when you are getting some of the responses I have seen. 

We were old for almost 4 years that he had 'seizure disorder'. I got tired of hearing that...it was very invalidating for us. So I asked them to please say the word Epilepsy when talking about him. So, at the age of 7 the word epilepsy was first written on his chart. The year he turned 8 was a bad year and we almost lost him a few times, during one of those I demanded, instead of asking, a lumbar puncture. They caved, did it and then never called with results. A YEAR later, a year and 2 more hospital visits for Status Epilepticus and one to start the Keto diet they finally remembered to tell us that he has low levels of 5-MTHF in his brain. 5-MTHF is a major neurotransmitter. The final diagnosis was CFD (Cerebral Folate Deficiency) and a few other folate dependent things. :) His treatment is diary free and Leucovorin. He is doing much better although they are still missing some other treatments that the specialists recommend so we have a bit farther to travel to really get him the help he needs. He is 10 now and a very healthy and happy 10 at that.

What meds are you taking now?

Wow, you have been through so much! You are a pretty strong lady (I am sure you, like all of us have to fake it sometimes) but you are.

I am currently on Lamictal &Clonazepam. My PCP just put me on something that is supposed to help with the shaking. It starts with a p...I can't remember right now. Not really excited about Wed. I still haven't heard confirmation about what will happen with my meds while I am @the U, but my boss didn't seem really excited for me when I told him that was what I was told was going on. He has been uber supportive...but...lol. I work for a chiropractor, he comes in really handy when I hurt my back (or whatever) falling or a good jerk. My last major fall (a couple weeks ago) I think I may have broke my nose...looked like hell. I finally told him today that I think there has been one fall too many and I NEEDED to be fixed. Between being "out" and the arthritis...good times...ibuprophen is my friend...not a good enough one...but a friend all the same.

Amazing what a little change in your diet can do. I am wondering if my dr. is thinking about working on that next. I will definately keep you posted.

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