hi im new here and could do with some advice

[vely2101]

hi everyone. i could do with some advise. i have just seen a nurologist last week who said i have epilepsy. it all started this time last year when i was way way over medicated for my thyroid problem by a very silly gp and since then ahd spells of feeling very unwell i.e dizzy , blured vision , headache , confused and then just 2 months ago hd a very strange turn , my jaw locked up , i could taste a metallic taste got very dizzy and unresponsive and then blacked out. this has happened 10 or 12 times in the last to months. what i need to no is that when an epileptic is un medicated do you very strane even in between seizures. the reson i ask is that after my first few seizures my gp put me on carbamazipine and i felt great for a week or so but the i refused to take them because i refused to belive i might have epilepsy. and a few days after i stoped taken them i felt bad again even in between seizures.
hope this makes sense
and sorry for my poor grammar

[RobinN]

Vely - WELCOME to CWE

All that epilepsy means is that you have had more than two seizures. You can have abnormal brain function due to a lot of reasons. One major one is nutritional choices. If your diet is BAD then your brain does not receive the nutrients that it needs to function in the way we have come to expect it to. Your "feelings" are a response to something.

It isn't a good idea to go on and off medication like you have done. This medication is very very strong, and unless you are careful increasing and decreasing the dosage you can cause your brain to malfunction even more than it has already done.

My daughter tried four major meds and we hated the side effects. We are now controlling her seizures with alternative methods. I suggest that you read up on the basics so that you have a clearer picture of what is happening. Then you need to get down to business and find out why your body is responding this way. You can do a lot to control it. You should begin with keeping a journal or calendar of all events along with diet, sleep patterns, and emotional changes that are occuring.

Check out:
Epilepsy 101 - Part FAQ, Part tips and advice

[skillefer]

Hi Vely! Welcome to CWE. AS Robinn said, you shouldn't just take yourself off of a medication. When you do, you can cause your seizures to become even worse because the lack of meds can cause your brain to basically go haywire. Most of all, you need to go to your doctor, and explain what happened. Feel free to ask questions, chime in, or just vent if you need to.

[Meetz1064]

and welcome to CWE!

Robin has given you some WONDERFUL advice. Please listen to it. Also take the time to keep a journal.......and write down EVERYTHING. And this will be able to help you to help yourself, and the doctor to help you in the long run, too. I promise.

Take care,

Meetz

[vely2101]

sorry i should have said that i am now taking my meds. but just wanted to no if before people are medicated do they feel bad between seizures and thanks for all the advice i have been looking after myself better of late

[jgbmartin]

Vely,
I just got diagnosed this year(I am 48 year old Female). I knew something was wrong...but I thought it was a sleep disorder...had 2 doctors tell me that they thought I was having seizures...I really thought it was a bad joke and was in denial. After the EEG showed seizure activity in May, I still tried to deny it. I really have just accepted it in the past few months. It is hard pill to swallow.
My father had 2 grande mals when he was my age...but they found out that it was related to change in my medication and he never had it again. My roommate's brother had several grande mals in my presence in the 70s....It was hard to wrap my head around I was having seizures (mine are petite mals) when I knew what I had seen and I did not fit into those patterns. Learning about the different types of seizures (in here), have helped me to understand and accept what is going on with me. Oh, I am still struggling, but this forum has helped me a lot...hope the same for you.

[brain]

Vely,

Welcome to CWE!

I too, had "swept Epilepsy" under the carpet and
wished it would go away, disappear, vanish, depart.
I hated it with a passion. I was ashamed of it, and I
too was in denial, and wouldn't even talk about it.
Of course I would mention the Neurological problems
(the other issues) but I wouldn't dare mention that.
Sufficient enough that the seizures themselves were
a major pain in the rear-end!

Want to know how much I enjoyed ending up in the
Hospital (and not even knowing it)? Oh I loved it...
NOT!


It's even worse when one doesn't have any memory of
anything and you're getting all these stories and you're
mind is completely blank, and for years - I had thought
they were telling me "fish stories". (HONEST!)

Sure, I'd talk about anything - but just don't mention that
"E" word or the "S" word (Seizure)!


But whatever you do, never stop your medication(s)
without your Doctor's supervision / advisiories! It's
just plain too dangerous and you put yourself in a dire
risk in doing so.

[Bernard]

Hi vely, welcome to the forum.

I think you are going to find that there are as many different experiences with seizures as there are colors in the rainbow. Pay attention to what is happening with you. Write it down if at all possible (as others suggested) and keep your doctors informed so they have a complete picture.

[drarvindr]

Dear vely ,
About the metallic taste in you mouth from what you've told us my best guess is that it is a side effect of your thyroid medication. Look up your medication on the internet and check it up. Do you smoke ? Do you eat well ? Heavy smokers have alterations in taste and some vitamin deficiencies can manifest as taste abnormalities.Most of your symptoms sound like a complex partial seizure. Don't worry about epilepsy . If you were prepared to accept a thyroid diagnosis then epilepsy is nothing to be afraid or ashamed of. Be certain about your diagnosis. It's your body. you need to know what is wrong before you start medications. Have you had a thyroid hormone blood level test (t3 t4 tsh) ? You need to know which type of epilepsy you have , what options your neurologist can give you , what the side effects of the various drugs are , and wether your thyroid problem interferes with any of your epilepsy medication. Write a list of pertinent wuestions you have and ask your neurologist. Don't feel intimidated or scared. He's there to help you. If he charges you then get your money's worth !!!
Get well soon . Hoping to see you seizure free on CWE !