new ;( to it all

[julie wishes]

Of course I'm not happy about this new diagnosis... but what is even more frustrating is that the information is all over the board when you google search it. I found I kept coming back to this site because the stories from real people were the most informative and your site was so extensive. So first and foremost, thank you for being here. I think what you're attempting to do... is working.

I was rear ended on a normal day less that ten minutes from home. Thought i was okay, but 11 months later, here I am diagnosed with mtbi and now seizures. I have a few questions, but the answers seem to already be here. I'm still upset, in denial, and just trying to adjust to the meds. Also trying to figure out how to tell my kids. Ugh!

Thanks again for being here for those of us lost in google land. My MD has been vague because we are still in the diagnosis phase. Makes it all that much harder

Julie wishes this wasnt happening right now

 

[Silat]

Hello Julie and welcome!
Feel free to ask away! Everyone here is going through, or have already gone through, much the same thing, so don't be afraid to ask
The diagnosis phase is always the worst... Just try to keep your head up, and a positive attitude about it!

If I may make a suggestion... I'd suggest getting your MD to be open with you along the way. Get involved in the process, and get his/her ideas and thoughts, and bounce ideas back and forth. Ask questions if you have them! It's not wrong to be active in your own medical health. After all... this is your body, and your life, and you are paying your MD to treat and diagnose you... so why shouldn't you be involved in the process?

 

[DadofTwins]

Welcome!

julie wishes,

Welcome to CWE. I too am a new member. As the parent of a newly diagnosed daughter, I have found the site to be friendly, informative and extremely helpful.

You can ask anything and not be judged.

Everyone is here to help.

Good luck as you begin this Journey!

Tom

 

[MaryK]

Hi Julie and welcome. I just want to echo what Silat said about remembering to keep active in your care. Also, keep a journal and also a separate note pad to write down questions to take to your neurology appointments. No matter what doctor's appt I go to I always take a friend or my husband. It is great not only for the moral support, but an extra pair of ears is very helpful. We are glad you found us.

Take care
Mary

 

[Nakamova]

Hi julie wishes, welcome to CWE!

Information can be a huge part of understanding and coping with a diagnosis of epilepsy. As you've discovered, there's a ton of info here at CWE, also wonderful support and empathy too. I hope you feel free to ask questions as they arise.

Best,
Nakamova

 

[julie wishes]

Thank you all so much. Its hard to know what to expect, so I really appreciate your advise.

Do any of you know if epilepsy is a progressive disease? I guess I'm wondering if its going to get worse. Because over the past two months it has been worse. The mild dizzyness and stuff, changed to obvious buzzing and muscle weaknesses. I started the Keppra a couple weeks ago and since then, they seem even worse. Or ... all the little ones got under control and the bigger ones stand out more and my dose isnt high enough. ???

I just hate the feeling of them. And I've never even had a bad one. Im scared to death of them getting worse or something happening in front of my kids. Ive hid this from them for a long time. Are they going to get worse?

All this stress makes them worse, but its hard to control the fear after what I've been through.

 

[qtowngirl]

Progressive in a sense, mostly depends on whether there's a cause. If it is due to a brain injury or lesion of some kind and it is left to medication, chances are the seizures will worsen. Surgery is usually the only option there.
Triggers make all the difference as well; if stress is what does it for you and the stress isn't eliminated or alleviated, chances are the seizures will worsen. Sigh.
E is so much about constant diagnosis and the right doctor, right tests, and identifying one's own triggers that you ALWAYS have to do what you can to keep the seizures at bay, because unfortunately the more you have, the more damage is being done.

 

[Nakamova]

Epilepsy isn't degenerative like Parkinson's or MS, but seizures can change or progress in kind, frequency, or duration. Ideally you want to get things under control so that the brain doesn't get in the habit of seizing. Unfortunately, seizure control can be elusive -- secondary triggers can come and go, and some meds can actually make seizures worse. Are you on meds at the moment? Make note everything that you are experiencing -- side effects and symptoms (even if you aren't sure which are which) -- and let your neuro know that things are getting worse.

 

[julie wishes]

Oh Boy

I had a car accident. Then all these symptoms that the docs said were post concussive syndrome. Then an MRI showed spots all over my brain ( not sure what that means) then EEGs showed generalized seizure activity... but my symptoms mimic the simple seizures. Ive had 100s of episodes in the past six months, most stress or sleep deprivation induced. I have kept a journal, just didnt realize i was journaling my own seizures until now. So thankful I did that.

Anyway, Keppra now, 1000 mg day. I call it my miracle drug. It changed my life. I felt very odd since the accident. I even journaled several times that I didnt feel like myself. I told people all the time, " I know I look normal, but I'm not. Something is wrong in there (pointing to my head)" Since on Keppra, I've felt like "ME" every single day. A true miracle in my eyes. I hate to give up my Keppra, but honestly, I think they are worse.

Its all so confusing. I will share all of this info with the neurologist. But specifically, does anyone know if Keppra is the appropriate drug for simple seizures?

 

[julie wishes]

This is very helpful. The words "in the habit" feel close to what I'm experiencing. Except the episodes on Keppra are although more infrequent, more intense. just wondering if its the Keppra or just me as I'm still recovering from the car accident and I feel my brain is in turmoil, not in healing yet. If that makes any sense.

 

[Bathtub]

Sorry to be ignorant but can you translate mtbi please? (I haven't found and studied the common abbreviations page yet!) Is it a sort of post traumatic brain injury cause by the car crash? Certainly hope that your healing and recovery, both physical and mental, continues.

Thanks

 

[Silat]

Sorry to be ignorant but can you translate mtbi please? (I haven't found and studied the common abbreviations page yet!) Is it a sort of post traumatic brain injury cause by the car crash? Certainly hope that your healing and recovery, both physical and mental, continues.

Thanks

Minor traumatic brain injury.
AKA: A concussion from the wreck

 

[julie wishes]

They call it mild truamatic brain injury because I wasnt in a coma for over 30 mins, but I instantly went into fetal position for over an hour and I lost conciousness for less than 10 seconds and one pupil was completely dialated for two weeks straight. My whole life is upside down, and I lost my job. Feels more than mild to me...lol.

 

[julie wishes]

Oh yeah... and ended up with epilepsy

 

[Nakamova]

does anyone know if Keppra is the appropriate drug for simple seizures?

There are quite a few different treatment approaches for Simple Partial seizures. See: http://www.hopkinsmedicine.org/neur...y/seizures/types/simple-partial-seizures.html.

As far as medications go, Keppra is definitely on the list, as are Lamictal, Depakote, Topomax, Trileptal, and others. Everyone reacts differently to the meds, so what works for one person, might be lousy for someone else. Keppra has the advantage that you can ramp up on it very quickly. For some folks it can cause mood issues, but it sounds like that was not a problem for you.

 

[Cint]

Do any of you know if epilepsy is a progressive disease? I guess I'm wondering if its going to get worse. Because over the past two months it has been worse. The mild dizzyness and stuff, changed to obvious buzzing and muscle weaknesses. I started the Keppra a couple weeks ago and since then, they seem even worse. Or ... all the little ones got under control and the bigger ones stand out more and my dose isnt high enough. ???

Are they going to get worse?

Epilepsy is a progressive disease and the seizures did get worse for me....... SP, CP seizures then brain surgery, 9 more drugs and then the VNS to get mine under control to some degree. And I'm still on 3000 mgs. Keppra + some Topomax. Some days I still want to SCREAM!!!!!!! :bigmouth:
Oh, and now the docs are saying I have a MTBI, due to the brain surgery and memory loss that goes along with it.

 

[julie wishes]

My MD specifically said, "these are only going to get worse"... she seemed pretty positive I had to take meds if I wanted a better life. I've been in denail for a while about this. Then I started thinking she was only trying to keep me as a patient by telling me these things. I haven't been the easiest patient.

Cint, I'm sorry your case is so severe. It must really suck. I have had glimpses of real brain trauma. I can't work because of it. But worst memory loss was of my son. I forgot I had one of my children. It was about 6 months after my accident. It was so upseting I can hardly speak of it now.

Thanks for your input.

 

[julie wishes]

thanks for the hopkins link

 

[huskymom]

A car wreck with the parting gift of epilepsy! Your one luck girl I find that they tend to get much better when I start a different drug or dose and then after several months they kick back up again. Just one of those things. Hang in there, we are here for you!

 

[qtowngirl]

I find that they tend to get much better when I start a different drug or dose and then after several months they kick back up again.

:agree:

Same for me, every time. Refractory's a bitch.