The "something new" i didnt expect...

[Rae1889]

Thanks Joan!
Again Thank Jena for me too. She is one of the reasons i decided to go. Without her video i would not have decided this was possibly epilepsy and something that should be done about it. She is truly an amazing person.

Im 20yrs old and your 16 year old daughter and my fiance are my idols. She handles it all so well and cna talk about it so freely.

I think one of the reasons i never went earlier was embarrasment. I didnt want to go have a disorder or disease or anything and kept hoping it would just go away. Except it didnt and it got worse.

Im so thankful i found that while searching youtube for answers. This was straining my relationship with my fiancee as he was tired of me putting off going to the doctor and i was tired of him snapping at me to go to bed earlier and quit worrying about stuff. But i gave him full instructions on what to do next time i have a Grand Mal. (okay, i may have that term wrong, they arent crazy violent or anything but i do end up on the ground and keep staring and twitching my hands. Sorta like my absence ones but on the floor) Or if i ave a crazy violent one.

I told him no if ands or butts he has to call an ambulance no matter how much i beg and plead him not too. Because I want those to be made sure that this is taken care of quickly.

Still anxiously waiting for my results of the blood test.

 

[darcness]

You really don't need to go to the ER or take a ride in the ambulance if the seizure isn't longer then 5 minutes or if you don't go status. Or of course if you hurt yourself during the seizure itself.

They are scary, but not really a medical emergency unless they are out of the norm. To be honest I wish that me and my wife wouldn't even have went to the ER the 2 times we did. The first time they didn't even know it was a seizure and just gave her IV fluids. The second time they KNEW it was a seizure and they didn't even ask her about AED meds or put her on anything for it. Total waste of time and money to be honest.

 

[RobinN]

I would prefer that Rebecca NOT go to the hospital. They do not do anything there for her. They take unnecessary tests, and tell me that I know more about her condition then they do. I am given instructions to take her to see her doctor the next day. I always promise that I will, and after about 4 hrs we are sent on our way.

Waste of time for the most part. I guess it takes some time before you feel comfortable enough to feel this way though.

 

[epileric]

I would prefer that Rebecca NOT go to the hospital. They do not do anything there for her. They take unnecessary tests, and tell me that I know more about her condition then they do. I am given instructions to take her to see her doctor the next day. I always promise that I will, and after about 4 hrs we are sent on our way.

Waste of time for the most part. I guess it takes some time before you feel comfortable enough to feel this way though.

:agree: I don't see any reason to go to the hospital either. The people there don't know your seizure history like your neurologist or GP do and all they can do is let you rest until you're able to go home. Besides, After a convulsion the last place I want to be is the hospital if there's nothing they could do.

The only time I see it as a good reason is if the convulsions won't stop & someone goes into status.

 

[joan]

Thank you* I also want you to know we have good days and bad days. HEck we have good weeks and bad weeks. We really try to take it one day at a time. It is alot to absorb. It is alot to deal with, but YOU are not alone : ) We are all taking this journey together. I hope that brings you some comfort.
For the record, when my 20 yo son has grand mals, they always last 5 - 9 minutes. When it is over, he will sleep at least 24 hrs and probably not be totally himself for at least 24 hrs. It does take alot out of you and tire you. That seems normal. GOod news is.. my son can go, so far, 15 months without seizures. As of this month, he has been seizure free for a year. Hang in there, helps coming ** I have a freind in Canada, who I met in Baltimore. Her 7 yo on MAD and doing well. I could also hook you up with her. Maybe she can help as well, if you like?

be well
joan*

 

[Rae1889]

I could imagine. Im waiting for a week where i am really low and down. but I have found a new home here to speak to people who know what might be happening and how to cope with it. This site is too good to be true. I am pushing for the fiancee to join. He's not a forum kind of guy he says but i told him he would like it and to talk to darcness. He'd help. **uber hugs to you darcness*

 

[darcness]

Thanks Rae!

I'm just here to learn as much as I can. Helping others is a bonus.

I'm a member of many forums, including here and a great mental health forum too. I find that I feel better by helping others, so I do it because I like to. No need to thank me.

 

[Rae1889]

No problem. You all need huge hugs. I've been here for a short time and the support and information has been overwhelming in the best possible way. Thanks Muchly

 

[Rae1889]

:woot: i support y'all!!!!

Found a home within my home!

 

[moonchild1970]

Welcome! We are so glad that you could join us!:cheers:

I know what it is to be looking for answers and support. Oh- and I had the CT scan and EEG and neither was painful.

 

[Loudmouth]

Beleive it or not, after my last sleep deprived EEG, I had to have an MRI scan straight after (before I had a sleep). Now, if you've ever had an MRI (and most of us have), then you KNOW how irritating the noise is. I FELL ASLEEP!!! :roflmao: Well, if they will schedule it directly after a SD-EEG, what on earth do they expect?! :bigmouth: