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What helps you manage anger when living epilepsy?
I have a lot of anger in my life because of my epilepsy.
I can thank the doc who delivered me for my seizures, I was a forceps baby and I've always wondered why he didn't use his hands to deliver me, My mother was in labor 72 hrs with me and obviously
my mother was to far along for her to have a c section.
I've had just a few jobs in my life and I've never driven a car.
I do remember someone telling me once her husband would never drive her places if she was unable and that is how u find out if some one truly loves you. He has seen me to h@ll and back. He also has epilepsy but his brain surgery stopped his seizures. Had surgery in 1982 got the Vns in 1999 and neither was able stop my seizures.
Not being able to drive.
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@belinda5000
Hi Belinda,
I understand your feelings well. When I was first diagnosed and put on my first AED. it gave me severe insomnia. At that time, I was still working and had an active professional life, and my doctor simply told me to push through it and continue with my life. But at a certain point, I said NO — I told him I could no longer endure that and asked him to change my medication. He pushed back, which led me to seek a second and then a third opinion, and I changed doctors.
You've been managing your epilepsy this since 1974 — that's over 50 years of learning your own patterns, and no one knows your body better than you do. I think that's something worth recognizing: we are, in many ways, the best advocates for our own epilepsy journey. Doctors bring expertise, but we bring the lived experience of what each medication actually does to us.
Are you satisfied with your current doctor? And for coming off Topamax, has your doctor given you a specific tapering schedule?
Chris
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3 Reactions@randallshields56
Hi Randy,
I'm happy to know that you've reached out to a counselor.
Take all the time you need to figure out where you belong; there's no rush!
Chris
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3 ReactionsYt......went to ER last just over a week ago, diagnosed with cellulitis lower left leg.
Made Dr appointment, got uva seen and same outcome. First week they gave me antibiotic, then another following last one. If still same swelling in three days get checked out. Everything has a cause. Thank you, have a great day tomorrow.
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3 Reactions@randallshields56
Hi Randy,
Thanks for sharing this update — I'm sorry to hear about the cellulitis. That sounds uncomfortable on top of everything else you're managing. It's good that you've stayed on top of it with the ER visit and follow-up appointment, and that you have a clear plan in place if the swelling doesn't improve.
Sending you wishes for a smooth and speedy recovery. 🙌
Chris
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2 ReactionsThank you 😊
Tha thank you 😊
Thank you for your response and prayers 🙏
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1 ReactionThank you for the like
@louissc
From my experience, don't ask and don't be demanding, tell your neurologist you NEED their assistance. He/she may write a letter to the insurance company educating them about SUDEP. The thought of them being held financially liable for one losing their life due to denying their Brand Name med, may make a difference. With each 3 month supply request, the insurance company said I had to take generics. My neuro jumped in, wrote a letter and the insurance company complied. I wish you success. You'll never know unless you try.
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1 Reaction@royanthony
Hi! That thought never crossed my mind to be honest, and I’m not sure I’m covered for lifelong medication either. I’m covered for 365 days of “recovering period” upon every hospitalization episode. I’ll have to check with my agent about that. Thanks. However, as my insurance firm is an international one (Prudential), I don’t think mine is the first case they dealt with.
Cheers,
Louis