S.U.E.D. Seizures

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Porkette

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Hi Folks,

I hope all is going well for all of you. I'm getting a little concerned I have noticed that my seizures are getting worse and my neuro has had me on many different seizure meds but nothing will work. My seizures are lasting much longer and I am getting a rapid heartbeat that won't stop. Sometimes I won't even have a seizure and my heartbeat will become rapid. I know that this is one warning of sued epilepsy and I have had 1 cousin that died from his epilepsy. I am looking for more info. on sued epilepsy and what can be done to stop it if at all possible. Thanks for your time and help. May God Bless You!

Sue
 
Sue,

Our seizures can change all the time; that is nothing new when it comes to my sz's you can die from a seizure also you can go into status there is not a cure for epilepsy.
I have two cousins that have epilepsy mother and son the son grew out out his seizures but the mother still has them and she is in her mid sixties by now.
 
Hi Porkette,
Sorry your seizures are getting worse. Hope things get better for you.

Is S.U.E.D. liked SUDEP?
Do you have Temporal Lobe Epilepsy?
I see your profile mentions Simple Partial, Complex Partial, and Absence but do you also have Tonic Clonic with status epilepticus?
Have you seen a cardiologist?
 
I agree with Frink that it may be worth seeing a cardiologist if you haven't seen one recently, esp. since the rapid heartbeat can happen without a seizure. Also I google "sued epilepsy" and couldn't find this term. What does it mean?
 
Hi Folks,

Thank you for your kind words and support I really appreciate it.
Sorry about the mix up I meant to say S.U.E.D.

Frink- I've seen a heart specialist and have been told I have a weak muscle in my heart but the seizures were lasting longer before that problem. I do have Temporal lobe epilepsy with absence, complex partial and simple partial seizures but the problem is the seizures are lasting much longer like a status seizure and I don't like this at all. My Epileptologist has done tests on me and they can't even figure out what's causing the problem.

Belinda & Charming Bird,

Thanks for your support and understanding, you are very kind.


Clint- thanks for sharing the webpage with me

I want all of you to know I really appreciate all of your help and support you are all wonderful friends. May God Bless All of You!

Sue
 
S.u.e.d.!

Porkette,
Another way to find out information about this type of E is to look up SUDEP. This is another way that the same type of seizures are categorized. I have read many articles and tests that have used this name.
Just GOOGLE SUDEP and you will get a long list of websites.


ACsHuman
 
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My question is what medicine are you on?

Lamotrigine made my seizures 4x worse then what i had been used to, they would beat me up. One time to the point where i felt like if it were to go on longer, my neck would break. I told my doc and he upped the dosage, this made me short of breath, so after that, i demanded to be switched. I knew it was the medicine, even after being on it for over a half a year, symptoms can still show up. And it was good that i was on only one medication, otherwise it might be a guessing game one which caused what.

Glad i switched meds, since now I'm on Gabapetin and it's been a wonder drug sofar. You can read about it in my profile page if you are interested.

Cheers,
Zolt

:piano: :pop:
 
Zolt brings up a good point, and a reminder for (although why I should need one I don't know!). The first med. I was put on was clonazepam which was then switched to clobazam but both had the same effect on me: worse and longer seizures (but no changes in heart rate or breathing or anything like that).
When I finally saw a neurologist I was put on Keppra and did well in terms of side effects up to 1500 mg, but as soon as I tried to go higher (tried twice), at night I would have racing thoughts along with increased heart rate, and I have never before or never since experienced anything like that. Needless to say the keppra was eventually dropped.

So, perhaps it is a medication effects of some kind. Worth bringing up with your neurologist and cardiologist.
 
Hi Folks,

I've been taking mysoline (primdone) along with vimpat and Diamox for along time. My Epileptologist did a DNA test on me and found out I am drug resistant to all seizure meds that are out on the market now. This summer when I don't have to work because school will be out the Dr. wants to try me on the medical marijuana since nothing else has worked. Over the yrs. I've been on at least 12 or more seizure meds and nothing has helped me at all. Thanks again for your support and information. May God Bless all of You!

Sue
 
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