Good news and bad news

[bighealey]

I saw two Neurologists yesterday.

The good news is I am seizure free for 3 months now and it seems the seizures can be controlled with drugs and lifestyle changes. I am recommended to be cleared to drive. Yea!:clap:

The bad news is I will be on the drugs to control seizures the rest of my life. So the diagnosis I have been denying is official now. :giveup:

Very, very weird, it was always supposed to be someone else. How selfish I have been......very mixed emotions on all this today.onder:

This "give-up smiley" kind of tells my tale today :giveup:

 

[daviscy60]

Just curious. Did they give you a reason why meds the rest of your life? They actually know what caused the seizures and they can be controlled with meds???

 

[arnie]

You haven't been selfish, just not wanting something bad to happen to you. That's what we all want, but when it happens, we deal with it, just like you are. I'm not surprised you have mixed emotions, in fact I would be surprised if you didn't!

Keep us posted. We're here to support you or give you a kick in the butt, whichever is most appropriate at the time!

Onward!

 

[SlimBlue]

It's extremely hard to accept a life-long meds regime, but having your seizures controlled like that is awesome

I'm very glad for you, life's weird lol but it's much better than being not controlled

 

[Dolores]

There is a buddhist saying - "Life is 10,000 joys and 10,000 sorrows".
For me it means to focus on the joys in life, however small they may be. And when sorrows occur - remember that there are joys and they will occur again. It's all about focus.

Is it a bummer to be on medication for the rest of your life? I suppose. I was given that diagnosis at age 10. I've taken medication for over 40 years to control my seizures. It's the only medication I absolutely make sure I take as I hope to never have a grand mal again.

I will also be on cholestrol medicine for the rest of my life. I will be taking aspirin for the rest of my life. There are in fact a lot of things I will be doing for the rest of my life. I can get upset over them or I can just deal with it and focus on the very good things in my life.

You seem to have your seizures under-control and a driver's license will give you back a great deal of the freedom you have lost. Taking medication for the rest of your life is, for me anyway, a small price to pay to be able to do that which I love in life.

Just looking at it from a slightly different point of view.
Congrats on the good news!

 

[notime]

@daviscy60

I know this is off topic and it's not my thread, and it may not be the OP's problem but my neurologist told me the same thing. I have primary generalized epilepsy which means it's idiopathic or something like that, but he says that's really an error because usually it's related to the genes.

He says that it's genetic and when it's adult onset like I have then usually it's for life. I asked about being taken off about 3 to 5 years from what I read, and he said that would be a bad idea and I'd probably be on medicine for the rest of my life. It's hard to accept, and it's depressing knowing I'll have to see a neurologist for the rest of my life but I just have to accept it. There is no alternative, and the only surgery I would qualify for is invasive such as neuropace or VNS, even then I heard VNS only reduces seizures by 40 to 50% and mine was treated until I got off of kepprea. I suppose there's no other options since there is no specific region of the brain that can be removed to stop it.

 

[N Sperlo]

The good news outweighs the bad IMHO. Glad to hear things are getting back to normal for you.

I'm on my meds for life, as are most here, I think.

 

[marika853]

It is what it is! We have to move on. Like others have said, look at the positives and be grateful for what you have.
M

 

[bighealey]

Thanks guys.

 

[Belinda5000]

Glad to hear you've been seizure free 3 months.Your lucky youn can drive I've never been able to drive and been on seizure meds 50 years since I was 2 years old.
I've never had a life without epilepsy.

 

[Cint]

I have primary generalized epilepsy which means it's idiopathic or something like that, but he says that's really an error because usually it's related to the genes.

He says that it's genetic and when it's adult onset like I have then usually it's for life. I asked about being taken off about 3 to 5 years from what I read, and he said that would be a bad idea and I'd probably be on medicine for the rest of my life. It's hard to accept, and it's depressing knowing I'll have to see a neurologist for the rest of my life but I just have to accept it. There is no alternative, and the only surgery I would qualify for is invasive such as neuropace or VNS, even then I heard VNS only reduces seizures by 40 to 50% and mine was treated until I got off of kepprea. I suppose there's no other options since there is no specific region of the brain that can be removed to stop it.

My seizures started when I was 22 years of age, and they are idiopathic, meaning unknown cause. That was 34 years ago and I've never been told that my seizures are genetic. I am the only one in my family that has them and I've never had a brain injury, encephalitis, meningitis, etc. I have mixed seizures--CP & TC. I would never dream of being taken off meds because for me, bad things can and do happen. I've also tried many meds, had a left temporal lobectomy and the VNS and now my neurologist mentioned the neuropace implanted in my brain. NO THANKS!!!!! So IMHO, we can choose to go on living with this disease and making the best of life that we can OR, we can let it overcome us and stay depressed all the time and not go out into the world, worrying about having seizures all the time. I choose the first option.

 

[Belinda5000]

I got a vns in 2001 had battery replaced twice I had a RTL in 1982 in Montreal , Canada at montreal neurological institute.

I've been to my share of epilepsy clinics.
I was at N.H.H 6 months whenI was in High school, been to UAB(university of Alabama) a few time) Georgia medical institute in in Augusta.

I also live 15 minute car ride from Emory/universityhospital in Atlanta,GA and I couldn't tell you how many times I've been there.
I've lost track of how many docs I've seen about my epilepsy.:soap::agree:
It's been my entire life!!!!!!!!!!!!!!!!!!!!!

 

[bentwanderer]

I saw two Neurologists yesterday.

The good news is I am seizure free for 3 months now and it seems the seizures can be controlled with drugs and lifestyle changes. I am recommended to be cleared to drive. Yea!:clap:

The bad news is I will be on the drugs to control seizures the rest of my life. So the diagnosis I have been denying is official now. :giveup:

Very, very weird, it was always supposed to be someone else. How selfish I have been......very mixed emotions on all this today.onder:

This "give-up smiley" kind of tells my tale today :giveup:

Good for you bighealy! I had my first seizure exactly 12 months ago. In my state, AZ, one must be seizure free for 90 days before being able to drive. Took me about 8 months to be sz free for 90 days, drove 6 weeks and then lost my driving rights again cuz of more seizures. But, what I was struck with for those few weeks I was able to drive again was that driving really is a privilege, not a right, which I think most Americans think it is.

I don't know if I'll ever be able to drive again, but living with epilepsy this past year has certainly given me pause to reflect on my vulnerability, exploring alternative ways of navigating my world, and lots of gratitude for the people in my life who can, and do, support the vagaries of my life that are attributed to my life with E.

Enjoy your returned privilege to drive.

Thanks for sharing.

 

[daviscy60]

I understand the reasoning for them not wanting you to drive. They say you have an illness and could hurt or even kill someone else. What I don't understand in Texas is I have a nephew whom has a serious alcohol problem. Alcoholism is considered t be an illness. I understand this too. What I do not understand is he has been locked up behind bars three times for such and each time he gets out he is able to obtain a DL as soon as he is out. Why will they let someone like him get a DL and get into trouble repeatedly but someone like me, which I feel my seizures coming on and would stop if I felt one coming on. Yet I have to prove that everything is under control prior to being able to drive again. What about people that are so overweight and could have a heart attack or stroke while driving at anytime because of being over weight.

 

[qtowngirl]

daviscy :agree: with everything you said.
that is a common topic here in Canada. when comparisons are made between the number of people hurt and killed b/c of a drunk driver opposed to those hurt and killed from someone having a seizure... polar opposites.
I live in BC and admit it's gotten much better here with DUI laws in the past two years, but still, it doesn't explain the numbers. yes... bring in stiffer penalties for those who purposely drink and drive, aka break the law... and 'ease' up a bit on those who have NOT. in Canada it ranges from six months to a year for loss of license after a grand mal, which I find insulting and totally unnecessary. a whole year? gimme me a bloody break... someone gets a DUI and only lose their license for three months.

 

[Janellie8]

This makes me so happy! Seizure free for three months! I would be grateful if I didn't have them for a whole week. Don't be too bumbed about being on the meds rest of ur life- just think, you have been seizure free for three months! Hope the streak doesn't stop Great news

Janellie

 

[bighealey]

Positive thoughts, positive thoughts, repeat after me

I received the paperwork from the Department of Motor Vehicles. They set up a telephone interview for October 3rd. That set me off into another depressive / anger episode. Got to get these negative emotions in check. It just seems ridiculous that they drag their feet so. I feel like Moriarty in the cult classic Kelly's Heroes. So with self reflection I say to myself.

"Cool it with the negative vibes Moriarty, the bridge will be there, and it will be beautiful baby!".

PS - Did everyone notice Janniles beautiful smile.: blush