Please Ladies Give Me Your Advice. Sorry Is a Little Long

J.,

I believe you are in denial, what you have described exhibits many signs of epilepsy. If you do not trust your present physician by all means seek a second and/or third opinion.

With proper medication this disease can be well controlled. Without it, your doc is correct; you could have a grand maul seizure. (Not a happy thing).

I’m not saying this to frighten you, I’m saying this because I have observed it with a close family member and after he received the proper dosage of Phenobarbital he was fine and lived a very long life with very few seizures. Take care of yourself for your sake and all those who love you.

Blessings……..

I understand what you are saying, andI have also been in a similar situation. I went and had a second and third opinion.

I was just positive the health issue was not as bad as they were saying. Something I could control and it was slowly going away or growing out of.

The diagnosis was confirmed and so I decided to accept it and to be as pro active about this condition as possible. It actually took a lot of the fear away to know what was going on, what may happen and how I could be involved in my health.

It has also been important because I am now very aware of limitations and do not feel like I have to prove anything to anyone or to myself. I am who I am. My body is capable of certain things and not others.

I did suffer depression. I went to a therapist and it really helped a lot. I was angry, frustrated and embarrassed, but these were all normal feelings when dealing with a major health issue. I realized I had friends and family that just cared and loved me, they were not trying to tell me what to do or be "up in my business".

You know your body best. You are the one that has to live in your body. Get as much information as you can. Do not be afraid of the truth, whatever it may be.

I am sending you strength and clarity.

I think you are more worried about the label than you are about just dealing with your symptoms. I don't see what harm a diagnostic procedure will do except to provide you with more information (inconclusive results are a pain - they are pieces of a puzzle that no one has figured out yet). You do need a doctor you can work with. With these things, it's often like a boulder on the top of a hill. Up to a certain point, if you are aware, you can stop the boulder from rolling. But after that there is a point of no return, and the boulder will roll no matter what you do. If it catches you by surprise (like while you are driving), the seizure will be the least of your problems. Research all you can. Find a support group. The more you talk about it, the better you will feel about it.

My husband has epilepsy. MRIs and EEGs never showed anything. There was one medication that allowed break through seizures (I think that's what they called them) that are exactly as you describe. He was aware of his surroundings and felt like he was far away and could actually stop the seizure from coming on. But that would have led to grand mal seizures eventually. He has grand mal seizures in his sleep. He has tried many many many many medications (I think probably every epilepsy medicine out there). He has finally found one that gives him little side affects. He is the 1% who always has complications and bad side affects so if he can find a medication that works for him you'll find something that works for you no problem. Definitely find a doctor that you feel comfortable with. But don't feel like this is the end of the world. I get so aggrevated with people who put such a bad label on epilepsy. No one should look at you any differently. It's like lots of other medical conditions... it can be maintained with the right medication. And if the medicine stops them you shouldn't have a problem keeping your driving license. But being ignorant and in denial is NOT the right thing to do. If you don't treat it you could hurt yourself or someone else. Get a second opinion but if that neurologist says you have epilepsy do your family and yourself a favor and accept your situation and treat the condition.

J. go to the library and do some research on your own about epilepsy and exactly what it is. Look it up on the internet too, but beware that the information you get is from a reputable source. If you really understand what epilepsy is and are informed and knowledgeable you can have a much more productive conversation with any doctor. I know you don't hold a medical degree but it is extremely important for patients to be fully involved in their care. No one cares more about your health and diagnosis than you---so make sure you are searching for your own answers and trying to really understand what is going on with your body. This will be even more important if you do have epilepsy or if your child does. Knowledge is power---don't just wait for some doctor to label you, be proactive and research research research! All the best.

HI - I would definitely get a new neuro - it does not sound as if yours was listening to you.

As fars as your worryng - pray. God can help you find the strenght within your self to get through this. Worrying won't help you and cn only make you sick - change your worry to prayer and you will feel better. I apologizr if that sounds a little goofy, but it after you get teh hang of it, it really does work.

I will say a prayer for you, your DD and the rest of your family.

God Bless!

I am not a doctor, this is just my opinion. It sounds like the times you are able to stop the seizure what might be happening is; you are having the aura without a full blown seizure and you just think that you are stopping the seizure. passing out for 5-10 minutes is extremely dangerous. The symptoms you describe sound like seizure activity, I would be more inclined to trust the neurologist who has expertise in brain disorders than I would a primary care physician or your parents who do not have a medical degree at all. An EEG not an MRI will determine if you are having any seizure activity. An MRI can give the MD information regarding the cause of the seizures, such as a tumor or abnormal brain structure. You can insist that the MD order the MRI of your brain as well as an EEG. I am surprised you have not already had these test?

I do agree with you, you should also see another neurologist for a second opinion. When you go for the second opinion, bring all the test results from the EEG and MRI and any other bloodwork etc... that you have done. If you do have epilepsy, there are many medical interventions that can help you lead a full, normal life.

You may be in denial and need to talk with a therapist.

The other thing that I want to mention, if you are having seizures due to another cause such as a psycological cause, they are still seizures and still a medical conditions that needs treatment, just different treatment methods. Also, if the seizures are caused by a tumor or structure abnormality treatments are available. Your neurologist will determine the cause and review the best treatment options with you.

Best to you, let us know how things go.

hello , please take good care if you're self listen to you're body and what it's telling you... also take the advice of others around you, they may see alot of what is happening that you don't. i lost a good friend who had epilepsy she did not take advice and her dr ov's were also very short 5 min or so. this angered her but she never looked for another dr. she cut her meds in half and endured the side effects because she thought she did not need them as much and she lost her life. find another dr who you feel comfortable with. good luck and try to be open minded to others who have advice.

trust your gut and get a second opinion.

i am going for my eeg next week-i start yawning and know i will be going out-last one was in dr office-he felt it was a seizure,one says it is a drop in blood pressure,--waiting for eeg and neurologist opinion-this last one was different with shaking arm..now i can't drive till we get an answer...here is to good news for both of us