topic Re: Epilepsy in Wellness

Epilepsy

BayBarb — Wed, 10 Dec 2014 20:18:37 GMT

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.

Re: Epilepsy

Ibby114 — Wed, 10 Dec 2014 20:31:40 GMT

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.

Re: Epilepsy

fllady — Wed, 10 Dec 2014 20:47:25 GMT

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.

Re: Epilepsy

Chrystaltree2 — Wed, 10 Dec 2014 21:11:25 GMT

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.

Re: Epilepsy

BayBarb — Wed, 10 Dec 2014 21:22:33 GMT

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.

Re: Epilepsy

sfnative — Wed, 10 Dec 2014 21:52:58 GMT

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

Re: Epilepsy

sfnative — Wed, 10 Dec 2014 21:54:27 GMT

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.

Re: Epilepsy

Ibby114 — Wed, 10 Dec 2014 23:09:34 GMT

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.

Re: Epilepsy

Chrystaltree2 — Wed, 10 Dec 2014 23:25:30 GMT

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.

Re: Epilepsy

depglass — Wed, 10 Dec 2014 23:40:47 GMT

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.

Re: Epilepsy

BayBarb — Wed, 10 Dec 2014 23:42:04 GMT

Wow ok. I saw neurologist that was associated with dr in hospital that ambulance took me to. I am in process of moving this neurologist in NY said "you will have to find a neurologist in FL, I don't know of any" believe that or not. I didn't post for third degree. I posted to see if I could find some support. I was not on keppra when I had the grand mal. I have no memory of that seizure...and the aftermath and how I felt was horrible. I was having partial seizures for two years, I was misdiagnosed ....from what I'm reading that is common. I was having auras...it's hard to explain I guess in a short post. Bottom line I was looking for some support and conversation about what I'm going through.

Re: Epilepsy

BayBarb — Wed, 10 Dec 2014 23:42:45 GMT

On 12/10/2014 depglass said:
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.

Thank you.

Re: Epilepsy

BayBarb — Wed, 10 Dec 2014 23:50:20 GMT

On 12/10/2014 sfnative said:
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

Thank you Rebecca! I had all the testing done. I am not driving, which is hard as you have to depend on getting rides. It's a tough transition. I am on keppra now , hopefully that will control the seizures. God bless you and thank you for your prayers.

Re: Epilepsy

sfnative — Wed, 10 Dec 2014 23:54:19 GMT

On 12/10/2014 BayBarb said: Wow ok. I saw neurologist that was associated with dr in hospital that ambulance took me to. I am in process of moving this neurologist in NY said "you will have to find a neurologist in FL, I don't know of any" believe that or not. I didn't post for third degree. I posted to see if I could find some support. I was not on keppra when I had the grand mal. I have no memory of that seizure...and the aftermath and how I felt was horrible. I was having partial seizures for two years, I was misdiagnosed ....from what I'm reading that is common. I was having auras...it's hard to explain I guess in a short post. Bottom line I was looking for some support and conversation about what I'm going through.

I moved from CA to OR last year and asked all my docs for referrals. Only one was able to provide one, so what you said is very true. Many docs don't know docs in their specialty in another state. That's just the way it is.

Re: Epilepsy

sfnative — Wed, 10 Dec 2014 23:57:43 GMT

On 12/10/2014 depglass said:
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.

Hi depglass,

I've been on phenobarbitol for 48 successful years. Yes, it's old line, but works for me. My new neuro (moved to a new state last year) wants me on depakote. I do not like the looks of the side effects. When I see him in 2 weeks, our discussion should be quite interesting. In my book, if it's not broken, don't fix it.

Edited to add that my prescription refills cost $0.48.

Re: Epilepsy

sfnative — Thu, 11 Dec 2014 00:02:22 GMT

BayBarb,

When I wrote my original long post, I was reacting to the information you provided in your original post, which did not indicate that you had seen a neuro and been placed on Keppra. I'm glad that that occurred and hope that once in Florida you can hook up with a neuro really quick. It took me a while to hook up with one after our move. I worked with my new Internist for a while for meds, then when I got a line on a great neuro made an appointment with her. Best of luck to you.

Re: Epilepsy

BayBarb — Thu, 11 Dec 2014 00:12:04 GMT

On 12/10/2014 sfnative said:
BayBarb,

When I wrote my original long post, I was reacting to the information you provided in your original post, which did not indicate that you had seen a neuro and been placed on Keppra. I'm glad that that occurred and hope that once in Florida you can hook up with a neuro really quick. It took me a while to hook up with one after our move. I worked with my new Internist for a while for meds, then when I got a line on a great neuro made an appointment with her. Best of luck to you.

Thank you so much. I already made an appt with a new neurologist that accepts my insurance, and that was a chore ....no appt until February. So I have to pray that keppra continues to work and side effects are minimal. I don't have prescription plan so meds cost $50 per month. (Generic version)

Re: Epilepsy

Ibby114 — Thu, 11 Dec 2014 01:25:04 GMT

I recommend you see a neurologist that's associated with a teaching hospital- they're up on the medical findings and new research that's out there.

My daughter has never been aware of her grand mal siezures- all she knows is that she's lost a gap of time and is physically exhausted.