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Devastated

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Refractory Tonic-clonic seizures but mild in frequency.

I need to be with people who get how scared I am. Do Seizures Harm the Brain?

I'm scared.

I have only had two though in two years. So I am confused? They won't put me on anything?

I don't even go to the hospital etc...i feel ..lost.
 
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My cousin has it too but he has something structurally wrong with his brain. Whereas my MRI came back completely normal. I have another cousin with a history of seizures in childhood on the other side of my family. But none since adulthood.
 
Hi, Devastated, and welcome to CWE;

The neurologist who oversees your care should be able to tell you why medication is not indicated in your case (you mention you have only had two and that they were a year apart so perhaps your neurologist is preferring to monitor things for now?) Generally the term "refractory" seizures is given to those who continue to have multiple seizures despite several medication trials, so you might want to speak with your neurologist and get some clarification from him/her about your diagnosis. Often specialists go over information so quickly it is difficult to absorb information in just one or two visits.

You mention your MRI was normal, which is great, but have you had an EEG? While a normal EEG does not rule out seizures, when and EEG is abnormal it can help identify where in the brain the seizures are originating.
 
! ! ! ! WELCOME TO CWE, Devastated ! ! ! !

You will find many people that understand you and can really help you deal with your E. You will find out that talking is the best way to feel better and learn how to deal with E. :clap:

acshuman
 
Hi Devastated, welcome to CWE!

Seizures ARE scary and weird, but you might find that having more information will help you get some perspective and relieve some of your anxiety. So... don't be afraid to ask your neuro questions -- it's his/her job to make sure you comfortably understand your diagnosis and treatment options. As masterjen points points out above, "refractory" doesn't seem to be the correct term in your case, so you should seek clarification there. An EEG is standard procedure when someone has a seizure, so it's worth asking about that as well. As for medication -- brain meds are very powerful, and many neuros will hold off in prescribing medications when there's a chance that they might not be needed.

Feel free to ask questions here to0 -- CWE members can offer plenty of support and info. :

Best,
Nakamova
 
Hi Devastated,

Please, don't say that just yet. As nakamova and masterjen have said, your case doesn't seem to be "refractory". If your seizures have been a year apart, I'd say that is good. My E is refractory because I was having 4-5 CP's a day plus 1-2 TC's a month. And after brain surgery, the tonic-clonics intensified.

And as Nakamova said, DON'T be AFRAID to question your Dr.!! It IS their job. Ask to have that EEG done to see what is going on.
 
Hi Devastated, Welcome! It can be very scary having seizures, but you won't feel this scared forever. This site is a great place to come for supplementary information and support. I agree that it sounds like you also have some questions that your doctor should absolutely be able to answer for you (even if it's just, "We're not really sure, but it's possible that ___"). I know sometimes doctors don't do a great job with listening, that's why sometimes I think it's helpful to write down a list of 3 questions before an appointment or phone call.

Do you want help coming up with a list of questions for the doctor? It sounds like your first two might be, "Do you think medication would be beneficial for me (and why or why not?)" and "Should I be worried about brain damage from my seizures?"
 
Hi Devasted,

Seizures are scary to those who experience it and to those who witness it!

My perspective:

I'm the parent of a young man with autism who had his first seizure 3 years ago. I just wish that I wasn't so terrified then. In spite of being aware that my son was sensitive to any kind of medication, (how I wish that the two neurologists we saw did not recommend medication), we began to medicate our son with AEDs. Believe me, it's been more than 3 years, and I'm still searching for my son who's many many layers beneath the chemical factory he's become.

Take care, talk to a doctor who will give you the time, make a list of questions that you need answers to. Best!
 
Hi Devastated, welcome to CWE. I understand how scary it can be to get a diagnosis for people, but rest assured there are plenty of people living with epilepsy who have perfectly normal lives. I've had epilepsy since birth, and none of my MRIs have ever shown any abnormalities (so my brain can't be all bad! lol).

The one thing I fully recommend is finding the right neurologist for you. I have a neurologist in 2 countries (one my native country and one in the country I now reside in). In my current country, I actually went through 3 neurologists until I found the one that a) gave me the most concrete and informational answers, and b) who I was comfortable with.

The latter is very important, I think, because you need to be comfortable to ask questions, and you need to have a certain level of trust, so don't be scared to shop around!

Anyway, you will always get a warm response and information here, so hang around!
 
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