Newbie Here. Are all seizures epilepsy?

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sbncmo

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Hi everyone. This is my first time to post, so I will give you my seizure history. When I was a year old, I apparently had a grand mal seizure. My parents didn't have money to have me checked out & I never had another grand mal, but I did continue to have episodes for the next 4 years where I would stop talking, stare into space & be totally unresponsive toeveryone calling to me or clapping their hands, etc. I guess I didn't have any other seizures until I was in my twenties.

At that time, I started losing consciousness. Once I was driving with my son & nephew, passed out & came to a little ways down the road on the shoulder of the other lane - just missed going off the road. Then I had several episodes when I would be a passenger & in midsentence, just go out & come to several minutes later.

I started seeing a neuro/psychiatrist. He started treating me for bi-polar & when I told him of losing consciousness, he ran an EEG. It confirmed seizures. He never told me if it was epilepsy, just seizures. I was started on neurontin. I had to d/c it because it caused complications. After three years, another EEG showed I was still having seizures. I was tried on a couple of others meds. Then I was put on Depakote. It caused me to have tremors, so it was d/c & I was on Trileptal for 3 years before the tremors stopped.

Then I lost my health insurance & weaned myself off my last bottle of Trileptal. That was three years ago. Then 18 months ago, I started having some weird sensations. I felt like I was being shocked all over, my muscles would get rigid, I felt like my muscles were going to explode, I would do things & not remember doing them, etc. At this point I was no longer seeing the nuero/psych. My family MD thought it as muscle spasms & gave me a muscle relaxant. Then she gave me Valium as well. She sent me to a new neuro, but he dismissed the shocking sensations.

Two months ago, I started having auras. The seizure activity greatly increased. After having auras at least twice a week, I went to my family doc again. She said it might be seizures & sent me back to the neuro who had dismissed it the year before. I went back, fully loaded with a written history of all seizures & medications. He said since I wasn't losing consciousness, I wasn't having seizures, even tho I told him I was losing consciousness sometimes. But he did order an EEG & it again confirmed seizures. So he started me on Keppra. He still didn't tell me if it is epilepsy - just seizure disorder.

I did research on-line. Complex partial seems to fit a lot of my symptoms, especially the shocking sensation. But I have other symptoms that seem to match other types of seizures. I read one of the posts here where the woman had the seizure but it lasted for more than a day & a comment was made that it sounded like multiple seizures. I know that I will have several seizures a day, despite being on the Keppra & Valium. And the side effects of he Keppra are horrible.

So I am wondering, could I have more than one type of seizure? Are all these seizures epilepsy? I need help.
 
:hello:Hi SB,
I'm not an MD but it is possible to have different seizure types. I have grand mal (aka Tonic Clonic) and now complex partial (new to me as told to me by my new neuro). I'll agree with the Keppra as I started it back in April/May. I'm now up to 2500mg/day. I was just weaned off of Carbamezapine (400mg/day) since it didn't seem to help. I've also just recently noticed the auras too (seeing dizzy spins but only for about 20 seconds). I also notice the "shock" feeling before the "big one" and it feels like I'm being zapped by electricity (trust me, I've done that by accident in the past so I know the feeling). What I've noticed with the Keppra is a lot of memory loss and always tired. There are a lot of other side effects people have reported but so far that's the worst of it for me. But with all that, you've found a good place with great people that are more than willing to offer help and support. Feel free to ask anything. Hang in there.

Neil
 
You will hear from many more knowledgeable people than I here, and I know nothing about the types of seizures you're having, but just to address the terminology, the way my neurologist explained it to me was that, "epilepsy," is an out-dated term and they prefer seizure-disorder now... No difference, I believe the thought is that, "epilepsy," has negative connotations (think diagnostic criteria for witch-hunts). My neurologist acted like I had said a curse word whenever I said epilepsy. I wonder how others feel about it... This site is called "coping with epilepsy," after all... Personally I have no problem it, and the public has no idea what I mean if I say, "seizure disorder," so it's just a matter of preference as I understand it. (and after two seizures they will attach the diagnosis of epilepsy, or a seizure disorder...)
 
Hi SB, welcome!

Epilepsy just means you have had more than one seizure. It's a loose term for many different kinds of seizures and seizure disorders. The kinds of seizures that are NOT considered epilepsy are things like a single seizure caused by a fever, drug overdose, head trauma, or infection that does not lead to further seizures. There is also a kind of seizure called Psychogenic Non-Epileptic Seizure which is considered to be caused by emotional stress or PTSD (rather than abnormal electrical activity).

Your family doc was incorrect to say that if you weren't losing consciousness then you weren't having seizures. Absence seizures simple partials, and myoclonics are some of the kinds of seizures that don't involve loss of consciousness, and complex partials usually just involve impaired consciousness. Many people have more than one kind of seizure, and a seizure that progresses from a simple or complex partial to a full tonic-clonic (convulsions and loss of consciousness) is said to have "secondarily generalized".

There's certainly a lot of confusion over the different kinds of seizure disorders, even among health care providers. You've come to the right place -- here at CWE, we are not doctors, but the collective wisdom and support of the membership can go a long way towards figuring things out.

Best,
Nakamova
 
Hi, sbncmo,

Welcome to the forum! I'm really glad you found us. Seizure disorders can be pretty confusing. The people in here really helped me with all their knowlege, and support.

Hey, Naomi, please excuse my use of the word "epilepsy" but it's still used in so much of the terminology.

I'm not a doctor either, but it sounds like you may have several seizure types. It's important to know which types you have because different medications are used to control different types of seizures. The zoning out can be Complex Partial seizures, Absence Seizures, or another kind. It takes a good neurologist to totally sort it out.

You could still be having seizures because either:
- it's the right med but not the right dose,
- it's the right med for the types of seizures you are having but the wrong med for you,
- or you are having several types of seizures that require different meds and the one you are on now doesn't cover them all.

Do I understand right that you have no insurance right now? You must live in the U.S. That makes it hard. I would have suggested that you see an epilepsy specialist - an epi. But they are about $300 a visit, even more for a first-time extended appointment. If there is a regional epilepsy center near you, you could call and ask about financial arrangements and if they take hardship cases.

It's really good you are keeping a seizure diary to keep a record of the seizures. In it you should include your medication, possible seizure triggers like lack of sleep or food, side effects, etc. It will help your doctor figure things out.

Please hang in there. This is all going to get better sooner or later, with the right treatment.
 
Neil & Naomi, Thank you for your replies.

My auras consisted of visual & audio distortions. With the visual distortions, I simply have to close my eyes & sometimes they can last for a while. With the audio distortions, I feel like reaching into my head & pulling my inner ear out. They are quite disturbing.

Neil, you mentioned your side effects to Keppra as tiredness & memory loss. I have those, but the worst part is the severe anger, an intense rage that lasts for days followed by intense depression. I also have a gret amount of dizziness. In the first two weeks on Keppra, I spilled an average of 4-5 drinks a day (that's coffee & water). The dizziness is a little better now, but not the emotional stuff. The last two days I've felt like everyone must hate me, not want to be around me or listen to me. I've even been reluctant to go to bed, thinking my husband doesn't want to be near me. Of course I know it's not true, but it's hard dealing with those thoughts.

Like you, Neil, I feel the shock before the seizure. And as I mentioned before, they happen several times a day. Afterward, I find it difficult to speak or think. I have trouble getting words out & somtimes slur the words or comprehending what others are saying. Being on the computer has been terrible the last few weeks. It takes me forever to write anything, because I am always hitting the wrong keys. (I tend to be a perfectionist, but am trying to deal with the limitations) I want an "L", but type a "Q" or some such nonsense, yet I'm a person who has been able to type 120 wpm with no mistakes.

Naomi, I have found the same stigma associated with epilepsy. I was pretty sure that epilepsy is now "seizure disorder", just like manic-depression is now bi-polar disorder. I think the stigma with epilepsy is that when people hear "epilepsy", they think of people falling on the floor, thrashing around, foaming at the mouth, biting their tongue, etc. But from what I have read on different types of seizures, it seems they are almost all epilepsy. That's why I had the question. It's no big deal to me to say I have epilepsy. I mean, say it like it is. And you are right, people don't understand "seizure disorder".

It is frustrating that the seizures have become more frequent & intense lately. Maybe that's because I was on seizure meds for 12 years & then went off of them for a while. But in any case, it is nice to be able to talk with others who know how I feel.

My question now is should I stay with my current neuro who dismissed my symptoms for the past year, who doesn't listen to what I say to him or read my seizure history that I wrote down for him & accepts my seizures only after an EEG verifies it, and I might add, who has a nurse that wants to argue with me & doesn't listen to me, or do I seek another neuro? Do I give him another chance or give him the boot? I don't know what to do. Am I being unreasonable? I know I don't always make sense after a seizure, but I felt I was being very clear with both the nurse & the doctor. Any thoughts?
 
Most of us in here, including me, have been on the doctor merry-go-round, switching from doc to doc until we find the right one. It's really hard to find a doctor that has the right combination of knowlege, a good office, and caring about their patients.

Do think about switching. A doctor that doesn't listen to you and doesn't take your seizures seriously will probably never get on top of the problem and get you treated properly. Do think about seeing an epilepsy specialist - an epi.

Do you live near a major metrolpolitan area? If so your state may have a regional epilepsy center. You'll get super care there.
 
Nokamova, Thanks for the reply. I do believe my main epiletic seizure is the complex partial, but I also believe I have other forms as well.

As a simple correction, it wasn't my family doctor who made the statement about me not having seizures because of not losing consciousness. My family doctor actually said she thought it was seizures & sent me to the neuro. The neuro was the one who made such a bonehead statement. Thus my question in a previous post - do I give him another chance or give him the boot?

And thank you for your reply "Endless". I do have my insurance again. It is Medicaid & with all the financial problems & cutbacks the state makes, who knows how long I will continue to have it. But I am thankful to have it again.

I called my neuro's office yesterday about the complications I'm having with the Keppra, but still haven't heard back from him. I have a lot of difficulty with medications. I believe it stems from also having CFIDS. That used to be cimply called Chronic Fatigue. Over the years, Immune Disfunction has been added to it, because so many have immune problems & med resistance/intolerance as well.

Anyway, thanks again everyone. I like this site & think it will be very helpful for me.
 
sbncmo said:
Neil, you mentioned your side effects to Keppra as tiredness & memory loss. I have those, but the worst part is the severe anger, an intense rage that lasts for days followed by intense depression. I also have a gret amount of dizziness. In the first two weeks on Keppra, I spilled an average of 4-5 drinks a day (that's coffee & water). The dizziness is a little better now, but not the emotional stuff. The last two days I've felt like everyone must hate me, not want to be around me or listen to me. I've even been reluctant to go to bed, thinking my husband doesn't want to be near me. Of course I know it's not true, but it's hard dealing with those thoughts.



Naomi, I have found the same stigma associated with epilepsy. I was pretty sure that epilepsy is now "seizure disorder", just like manic-depression is now bi-polar disorder. I think the stigma with epilepsy is that when people hear "epilepsy", they think of people falling on the floor, thrashing around, foaming at the mouth, biting their tongue, etc. But from what I have read on different types of seizures, it seems they are almost all epilepsy. That's why I had the question. It's no big deal to me to say I have epilepsy. I mean, say it like it is. And you are right, people don't understand "seizure disorder".


My question now is should I stay with my current neuro who dismissed my symptoms for the past year, who doesn't listen to what I say to him or read my seizure history that I wrote down for him & accepts my seizures only after an EEG verifies it, and I might add, who has a nurse that wants to argue with me & doesn't listen to me, or do I seek another neuro? Do I give him another chance or give him the boot? I don't know what to do. Am I being unreasonable? I know I don't always make sense after a seizure, but I felt I was being very clear with both the nurse & the doctor. Any thoughts?
Click to expand...

I would suggest you get a 2nd opinion, since your current dr. doesn't want to listen to you, especially if you're having problems with the meds and increased seizure activity. Find someone who WILL listen. It is their job!

As far as the "stigma"- it's no big deal to me either. Why are the specialists who deal with seizure disorders called "epileptologists"?
And then there is the "Epilepsy Foundation"and "The American Epilepsy Society". I have CP seizure and TC seizures, where I've fallen to the floor, thrashed around, bit my tongue, ended up with cuts and bruises, black eyes, etc.

I also take Keppra- 3000 mgs a day and initially it did cause cause intense anger and added to the depression. One more reason to find a new dr. to talk to about this emotional baggage that goes along with epilepsy at times.
 
I think I'm getting somewhere

I mentioned in my earlier posts that I had tried to contact the doctor yesterday & ended up with a confrontational nurse. I waited & waited for a return call. Well today I called the pharmacy & explained how I've been feeling & how the seizure activity has increased. They said I need to contact the doctor & get off the Keppra. I was hesitant about confronting the nurse again, so I finally called a friend & she called my doctor's office & left a message. They called back immediately.:clap: The nurse had a completely different attitude & my doctor was right beside her answering my questions as I asked them. So, the situation now is I'm being weaned off Keppra over the next two weeks, then start Topamax, which will have an increase each week for the first three weeks. I'm starting to feel like they are listening to me now instead of fighting with me.:fight:

I do have concerns over the Topamax. I was on it before & had to quit taking it for some reason. It does have the same side effects as the Keppra, but that doesn't necessarily mean I will have the same problems. I have several years of my previous neuro's med notes, so I am going to look thru them & see if I can find the Topamax in there. Let's hope this one works when I start it.
 
Hi, sbncmo,

I'm glad you were able to get some answers. I would still keep it in the back of your mind (if the lack of service and communication issues happen again) that you might look for another doctor. It sure wouldn't hurt. In fact, our doctor even told us he wouldn't get his feelings hurt if we did (we didn't - yet). In my opinion, I'm learning that while there are similarities with our cases, these seizures, treatments, triggers, and treatment options are so very individual. This is such a great resource!! I've learned so much already. Good luck and keep us posted.

PS - my husband takes 1500 mg/Keppra per day, and today was prescribed an increased dosage of 2000 mg per day. The symptoms you described about Keppra appear to happen to others, too. Now that you're on Topamax, I'll bet someone here can give you some support and/or ideas about it. Cheers, D
 
Hi D. It certainly relieved some of the stress when the doctor & nurse finally contacted me. It is frustrating when a doctor doesn't listen & just blows you off. I'm glad he listened & acknowledged I am not able to tolerate the Keppra. But like you said, I will keep in mind the option of another doctor. What's that saying? Once bitten, Twice shy. Well I'd say he's "bitten" me at least a couple of times. But I will give him another chance.

At least the side effects should decrease over the next couple of weeks, even if the seizures don't. And although I have taken Topamax a number of years ago, I'm going to go at it again with an open mind. On Drugs.com, it is listed as having pretty much the same side effects as Keppra, but I'm not going to develop a fear of and contribute to those symptoms psychologically.

And you are right too about everyone being individuals, needing to be treated as individuals. Epilepsy, from what I am continuing to learn, is not "one size fits all." Our symptoms can differ according to the type or types of seizures we have & the response to treatment differs for everyone. This is a really nice sight for learning & for helping each other.

I noticed your join date - you are new here yourself. I'll have to look for your other posts to learn more abot what you & your husband are dealing with. Thanks again for the support.
 
I'm so happy you called your doc. I'm so happy your doc listened to you! Sometimes they are under stresses we don't know about, just like every other human being. Maybe things are going better for him now. Do you know what kind of message your friend left? Maybe he/she said something about you being afraid to call in. That'd probably change their attitude quick.

Gosh, every drug is different for every individual, just like E is different for every individual. Even though a couple of drugs may list the same side effects, the side effects you actually get from each may be different. You just have to try them and see. The side effects may or may not get better, too. I'm on my 5th drug, and I wish there was some kind or order or reason to it all, but there isn't.
 
Hi Endless,

I am glad my doctor called too. My friend has helped me thru so much over the last 20+ years. She said the message she left was that I had called yesterday, but because of not being able to think clearly, that I wasn't sure if I explained the situation well enough, and that I had called the pharmacy & they said to get hold of the doctor today & get off the medicine.

I must say I appreciate the point you made about the stresses doctors & nurses are under. They see so many patients every day. And when we are suffering, we tend to think only of ourselves & not of the ones treating us. Thank you for the humility lesson.

I mentioned being a little concerned about the Topamax. I went thru the med records from my previous neuro. I found where I had been on Topamax for one month in 2005, but I couldn't read his notes, so I don't know why it was d/c. I was on a number of other meds at the same time. Who knows - maybe the drug cocktail caused me to have a negative reaction to it. Anyway, I'm off those meds now, so hopefully te Topamax will work this time with no problems. I'll find out in a few weeks when I start it.

I do wonder why I have started having so many seizures every day. Is it because I had been on ep med for so many years & then went off of them? Any ideas anyone?
 
sbncmo - I found when my daughter was taking medication her seizures would morph into unusual types. Now that she is off of all meds she no longer has any of those, and the tonic clonic seem to be becoming fewer in number as well.

Making nutritional changes has certainly been our best course of action.
 
Hi Robin. What meds was your daughter on? Was it going off the ep meds that calmed the frequency of her seizures? I just wonder, because it was after I'd been off them for 3 years that mine came on with such frequency & intensity.
 
Hi, sbncmo,

One thing I have learned is to not always take for granted the PA relays details to the doctor. The PA we have isn't that reliable...so I try to find ways around her, if possible. Sometimes it's just easier to schedule a very quick appointment so the doctor knows everything going on.

I'll be happy to share our story. I can send you a private message. We're in our 40's, no kids. He had a seizure first time New Year's Day 2010 (HAPPY NEW YEAR - ugh).
 
HI

HI: It sounds like you have been having a number of different types of seizures over your life. Further, for those on Keppra, check with your doctor b/c for 1% of those who use Keppra, it is an awful medication for controlling seizures- if you are having mood swings, anger management problems (you didn't have before), depression, etc, then Keppra is NOT the right medicine for you. I know, because I was placed on Keppra for a brief time, because supposedly it is one of the better meds if you are pregnant; however, I was taken off of it because I fell in the 1% it did not work for. Hang in there and push for a diagnosis; often it takes time- I was not diagnosed for a month; I was told I had syncope (fainting spells)- it was not until a nurse actually witnessed me having a seizure in the hospital that I was diagnosed. Also, auras are miny seizures as well, so hang in there and get your diagnosis. If you were pregnant when the seizures happened, it is possible you have catamenial epilepsy; there is a neuroendocrinologist that specializes in catamenial epilepsy in New York; if you type this information in google, you will pull up his name . . . Anyway, many blessings with your situation, and YOU CAN WIN!!!
 
Hi aaroberson,

From the information I have read, I know I have had different types of seizures. I'm pretty sure I mainly have complex partial seizures now, but there are other types happening at the same time.

In speaking with the pharmacist yesterday, I learned that it is actually 10-15% that cannot take Keppra. I'm thankful that my neuro is taking me off of it. I've never felt the extreme rage that I've been having on the Keppra. I have bi-polar, and sometimes the manic episodes are in the form of anger, but I've always been able to control the anger before. With the Keppra, I lost that control after just one dose. My dear husband simply walked in the door, said something about work & I lashed out at him & that continued for the next few days. I wasn't angry at him, I was just angry. I'd spend all day alone & when he came home & we tried to talk, I'd burst. He is such a blessing to me. I've had bi-polar all my life & he has been such a support for 28 years. He's still a wonderful support with the difficulties I have with the seizures & the meds. I am in great hope that the Topamax will work for me. Some of the seizures (the muscle vibrations, hallucinations, auras, unresponsiveness, etc.) are a big nuisance, but the ones that feel like I'm being electrocuted are quite painful. And I have as yet to understand if my difficulty speaking & comprehending what others say & slurring my words are the after effects of a seizure or another form of seizure. I guess it is something to ask the doc.

It has been frustrating with the new neuro with him brushing me off despite all the history, but I think he is coming around. I certainly have enough witnesses of my seizures with family & my previous neuro.

While it is difficult to deal with serious illness, I don't mind saying I have epilepsy. It's a fact of life. It brings restrictions just like any other disease, but I can live with it. I have all my life. The hard part is trying to find a medication that I can tolerate & that will help control the symptoms. Hopefully we are on the right track now. And hopefully I will be able to keep my insurance or be able to afford the medication & not have to go off of it again. I can't prove it, I don't know if anyone can, but I really think that being on ep med for over 12 years & then quitting it is what has made the seizures so bad now.

I hope you are on a med that is controlling your symptoms now. You hang in there too!
 
HI back (again)

You know what, my husband and I have been "arguing" recently about communication and how I don't say things I believe I have said. Here is an example, he will ask me a question and I will respond (or at least I think I do). Then he will start arguing, because he says I did not answer the question. I then get defensive, because with everything within me, I believe I have said the answer. He then says I did not.

It is SO frustrating, because my mind 100% believes I said the answer- I even heard it come out of my mouth. It is so frustrating too, because I do not know how to fix this.

I believe a number of reasons why doctors do not diagnose, etc, is because they just do not know. Even now, there is little truly known about Epilepsy to the point of "cure." There is another awesome website the CURE website; if you type it in google, the foundation will come up- it is a foundation that looks for cures for Epilepsy. There are a great number of websites on there that are reqlly useful and helpful with trying ti find answers.

Anyway, sometimes, it just helps to know there are others out there and you are not alone. Another important thing is to get your spouse support too, because they are dealing with their own battle fighting Epilepsy as well.

Andrea
 
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