Validated...keep your chin up :0)
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chaddy4 posted:
I used to post here a lot. I have had E since I was a child. Didn't know until I was 20s that I was having seizures. THEY GOT BAD! I was having 100-200 a year for over 10 years. Finally I went to the right dr and it turns out I was on too high of a dose of meds. They cut down a lot after taking me off of most the meds. During all this, MANY ER DOCS And nurses said I was FAKING. Not all, but many. My EEGs were all "normal". But the seizures continued. I didn't want them. But they kept happening. It lead them all to think pseudo-seizures. Until recently. Finally!!! I had an EEG and it showed one of the places where the activity was coming from. After 17 years of uncontrolled seizures, finally! This doctor has brought control and put me on the right medication. I felt validated that I was not faking all this time. I knew I was Not faking or having emotional seizures, but i felt vindicated from all the doubt all these years. Keep looking til you're satisfied with the answers you get! God bless! Chaddy
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saxofone1 responded:
Hi Chaddy,

That is some storm you have been though!!

I understand your frustration of being accused of 'FAKING" it. I bore the same back in 75 when mine first started. I was accused of the same when my initial EEG came back "normal".

VALIDATED, VINDICATED, AND VIBRANT.

I wish you continued good health. Thanks for sharing this.

BTW, there is a gentleman, "seizures for the 1st time", who might benefit from your support. Just a thought.

angie
 
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chaddy4 replied to saxofone1's response:
Hey Angie!

Thanks for the heads-up! I just responded on "seizures for the 1st time" thread. Hopefully somewhere in the big long reply I gave him/her it will be helpful.
 
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dancer86442 replied to chaddy4's response:
Hi Chaddy,


Welcome back. It's good to hear your update. I'm sure glad you continued changing docs & doing your tests. So, now, all is Good. Meaning Rite Diagnosis, rite med, control of your seizure activity. I can just imagine the Relief you feel.


I wish I had More answers. But, the nearest EMU w/ Epilepsy Specialists is 10 hrs away. Hubby feels there is no need for Drs to tell me what I already know. I haven't seen my Neuro since she told me about my portable EEG results. She told me I had a new syndrome, but, didn't explain what it meant. Still Mad! Although I am Considering going back to see her. Just need to get some Finances under control.


Best news for me??? Hopefully, I can work a few hrs a month & if that works out, hopefully, I'll be able to work a few hrs a week. Just waiting on the Word to come on in. But, I have a feeling that is all a couple more mths away. I Hope Not! I would be an Usher at an entertainment center in a Casino. I did get to work the rooftop concerts. Even got to hear/see ZZ Top. But, shows ended for the Summer. Got one coming up in Sept, though.


Thank You for replying to 1st time seizure post. You did Good! I do hope you will visit as often as you can & help us support others'. We all know how much it helps knowing we aren't alone. We are, truly, all in this together. Every Voice Counts! But, don't get discouraged if a poster doesn't respond/reply.


Hope you are having a Great day. Hugs!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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chaddy4 replied to dancer86442's response:
Hey Candi!! You might be able to get your PCP to request a copy of med records from your Neuro and they might be able to explain the results? Mine does that for me from others docs I've been to. I'm blessed that my neuro is 30 minutes away and communicates readily via phone and email. She is the best neuro! Will write more later
 
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saxofone1 replied to chaddy4's response:
Hi Chaddy,

Happy to hear that you responded to "1st time".

Hope you hand around and continue to share. Each voice is important.

angie
 
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dancer86442 replied to chaddy4's response:
Hi Chaddy,


I already found out what Continuous Wavy Line Syndrome is. I expanded my wings to support others' on Facebook & got my answer there. I have seizures in my sleep. But, different then Nocturnal gran mals. Seems these seizures have no apparent activity. My brain is firing, but, no Physical activity.


The new Neuro is Nice. She knew what abdominal seizures were. None of my other Docs did. She, took time to talk w/ me, like none of my previous docs did. I'm thinking she Assumed I already Knew what CWLS was. I really shouldn't be mad anymore. When previous neuros wanted to change my Pheno's I went back to my Old Neuro & met her. She is his Assistant. Fresh from School. Or was back then. She agreed w/ me! If it ain't broke, don't fix it.! So, I got to stay on my Phenos. Reason other docs wanted to change: It's addictive. DUHHH! 20 yrs on a controlled substance, of course it's addictive. Possible Liver damage. Well, I know several meds do the same. But, I keep up w/ my blood work. 3rd reason was, been on them tooo long. Well, others' have been on worse or just as bad of meds for as long or longer. I saw no point in jumping on the med merrygoround just becuz, of their Opinion!


So, that updates you a bit more. Hope you had a great day. Lots of Hugs. Thanks for your suggestion.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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chaddy4 replied to dancer86442's response:
I'm having seizure activity today. My Aptiom isn't working so good right now. This is my 10 med I've tried. Feel terrible. Tired of these. Remember me in prayer please Thank you God bless Chaddy
 
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dancer86442 replied to chaddy4's response:
Hi Chaddy,


Prayers! I'm so sad to hear this. I do hope you do better today. Are you keeping a Daily Journal? I know I probably suggested it b4. But, look in out Tips on the rite & be sure you are including all necessary Info! It's more than just keeping track of seizures. How long have you been on Aption? When was your Last seizure? Did you call your Dr? You may need to up your dose.


Hugs Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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chaddy4 replied to dancer86442's response:
I need to keep a journal. Had auras this morning but I'm afraid sometimes auras and seizures have become so common to me that I don't think much about them. VNS is looking more tempting all the time. Hmmm... Thank you for prayers, I really do appreciate it
 
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dancer86442 replied to chaddy4's response:
Chaddy,


Are you aware that Auras are/can be considered seizures, also? Simple partials. Yes, please do start a Journal. If you have a cell phone there may be an app that will make it easier.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.