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Contributor
Posts: 44
Registered: ‎10-18-2014
Hi, I was wondering if anyone here has any input.... I was diagnosed with epilepsy..... I don't know anyone personally that has ever even had a seizure...so I'm having a rough time of it as far as support and advice. Been getting most of my info on line , moving to florida this week so I will be going to a neurologist there. Only saw emergency/hospital dr as of now, and didn't get much support or answers.
Esteemed Contributor
Posts: 7,423
Registered: ‎03-10-2010

An ER doctor diagnosed you? You should definitely see a neurologist for proper testing and diagnosis, seizures can result from a whole host of things. When you do see a neurologist, make sure it's a Dr who specializes in seizure disorders.

My daughter has epilepsy- she wasn't given that actual diagnosis until a month or two after her first seizure. We had lots of testing- saw a specialist first, etc.

Contributor
Posts: 47
Registered: ‎06-08-2010
I had a tumor of brain in 1992.Had several seizures after surgery.Was diagnosed as epilepsy.Doctors wanted me to turn in drivers license.I live in Florida.Have not taken any meds or had another seizure since.Would not get concerned yet.I know is scary.
Respected Contributor
Posts: 2,112
Registered: ‎12-08-2014

I don't know where you went but an ER doc wouldn't be the one to diagnose epilepsy, one can have seizures but not have epilepsy. I think you are jumping the gun. You just need to wait until you see a neurologist and have diagnostic procedures done and if you do have epilepsy, the neurologist will answer all of your questions.

Contributor
Posts: 44
Registered: ‎10-18-2014
Thanks for your reply. I was having partial seizures for 2 years, misdiagnosed. I was seen by a neurologist here but needed to find one in my new state. I was diagnosed after two years of seizures and after I had a grand mal. I was tested, EEG, MRI etc. I am on keppra now.
Esteemed Contributor
Posts: 5,258
Registered: ‎03-10-2010

Hi BayBarb,

First, I know you're in the process of moving, BUT YOU NEED TO GET IN TO SEE YOUR PRIMARY CARE PHYSICIAN ASAP SO THAT HE/SHE CAN WRITE YOU A SCRIPT FOR A BASIC ANTI-SEIZURE MED - NOW. CALL THEM AS SOON AS YOU READ THIS.

I am now 67. Had my first seizure at 16 on a streetcar in S.F. Had 7 grand mal seizures between the ages of 16 and 19. When I met the guy who was to be my husband, he asked why I was still having seizures. Well, he went out and got me an appointment with a neurologist, as I had only been seeing my family's GP. As it turned out, this GP was prescribing a pediatric dose of Dilantin. This is why I continued to have seizures. My new neurologist placed me on two different meds and I have been controlled since then - very, very blessed.

A seizure is an electro-chemical "storm" in the brain manifesting in numerous ways. Petit mal seizures are generally mild vice the grand mal, which are the "fall on the floor, extremity seize&release, flailing of the entire body, sometimes frothing at the mouth/biting of the tongue and gums, etc." When you wake up from a grand mal, your head feels as though someone has hammered it. The pain is horrible. Additionally, you will be quite sleepy, may not be able to verbally communicate very well, thought processes confused and should really go to bed and sleep it off.

Many medications exist to treat epilepsy, but first you must:

1. Get in touch with and make an appointment with a neurologist specializing in seizure disorders/epilepsy. Stick with this doctor for life.

2. This doc will order an EEG, which is a test where by they place electrodes on your scalp (doesn't hurt) in order to get readouts of your brain waves. This is a very necessary diagnostic tool.

3. Since you have no previous history of seizures, the neurologist may/will order x-rays, an MRI/CT of your brain. This is par for the course. I've had several. There is much to rule out here, so be patient.

In the meantime, please do not drink any alcohol or take any medication that has not been ordered by a physician. Also, stay off all OTC meds and GINSENG. Ginseng is NOT recommended for those with seizures.

Also, physically take it easy until you have been medicated. DO NOT DRIVE. DO NOT DRIVE. DO NOT DRIVE. Because you don't have a handle on your seizures, be careful going up stairs and such. Personally, I would be hesitant to be out in a public place until I was properly medicated and had had the tests. What you want to prevent is grave injury to yourself due to your location duriing a seizure.

Note: When you arrive in Florida and go to their Department of Motor Vehicles to get a driver's license, you will have to answer to having had seizures. Be prepared to be placed on restriction which will deny you the ability to drive. This varies per state. Please know that this is for YOUR safety and that of other drivers. When I had my first seizure at 16, I could not drive for 3 years, according to the law at the time in California.

I wish you well and will pray for you. If you want more info, just ask.

God Bless - Rebecca

Esteemed Contributor
Posts: 5,258
Registered: ‎03-10-2010
On 12/10/2014 BayBarb said: Thanks for your reply. I was having partial seizures for 2 years, misdiagnosed. I was seen by a neurologist here but needed to find one in my new state. I was diagnosed after two years of seizures and after I had a grand mal. I was tested, EEG, MRI etc. I am on keppra now.


Did you have the grand mal while on Keppra? If so, a med change is in order as well as re-testing.

Esteemed Contributor
Posts: 7,423
Registered: ‎03-10-2010
On 12/10/2014 sfnative said:
On 12/10/2014 BayBarb said: Thanks for your reply. I was having partial seizures for 2 years, misdiagnosed. I was seen by a neurologist here but needed to find one in my new state. I was diagnosed after two years of seizures and after I had a grand mal. I was tested, EEG, MRI etc. I am on keppra now.


Did you have the grand mal while on Keppra? If so, a med change is in order as well as re-testing.

My daughter is on keppra- and it took about 6 months of slowly introducing it to her system to find the 'right' dose. We'd adjust the am dose for a week - then run tests. And then adjust the pm dose - then more tests! She's been seizure free for almost 2 years now.

Respected Contributor
Posts: 2,112
Registered: ‎12-08-2014
On 12/10/2014 BayBarb said: Thanks for your reply. I was having partial seizures for 2 years, misdiagnosed. I was seen by a neurologist here but needed to find one in my new state. I was diagnosed after two years of seizures and after I had a grand mal. I was tested, EEG, MRI etc. I am on keppra now.


Okay, this changes things. Why, in your original post, did you say you've only seen ER docs? If you are moving to FL and you already have a neurologist who is treating you, why don't you ask them to refer you to a neurologist in FL? That's usually how it's done. They refer you to one in your new state and forward your medical records and that way there is no disruption in care. I've never seen a situation like this where they tell the patient to go find their own doctor. Also, if you were diagnosed two years ago and you are taking anti seizure meds; you should be getting all the information you need from that doctor. There would be no reason for you to have to resort to the internet.

Honored Contributor
Posts: 13,936
Registered: ‎03-10-2010

I think OP is resorting to the internet for support, particularly on this board. I only know one person with epilepsy and she has been controlled for years with phenobarbitol, a very old line drug. Best of luck with your move, if there's anything Florida has, its an abundance of medical care.