Newbie Here. Are all seizures epilepsy?

[aaroberson7]

HI; what nutritional changes did you make with your daughter?

Thanks,

 

[sbncmo]

Hi Andrea,

It is indeed difficult when you are certain you said or did something, and then find out you didn't. I feel for you in your situation with your husband & his reactions. Epilepsy is hard to deal with for everyone concerned. I've also been in the situation where I thought I said something or even thought I heard my husband say something, but it didn't actually happen. Thankfully, my husband doesn't get upset about it. He just takes me in his arms & says something encouraging, like "It'll be okay. We'll get thru this." I'm so thankful that he didn't lash out at me on those occasions when I lost control. And you are right - it is just as difficult for our spouses & family to deal with our epilepsy because they only want to make it go away & that is something that just can't be done. But it is nice to have these different forums to learn more and to exchange encouragement or even to vent our frustrations.

My husband is one of the most laid-back men I know. He is so patient. And over the years I've come to realize that I just don't know what I am saying or doing sometimes. So if I mess up, I feel frustrated with myself, but I try not to get angry about, especially toward others. That doesn't mean I don't get into a ranting fit sometimes. But my husband just takes it all in stride & calms me down. Boy does he have his hands full with me!

Hang in there & try to stay calm in those frustrating moments. It's work for everyone, but with cooperation, it can be endured.

Shelia

 

[lonnie]

Hello sbncmo, Welcome I'm glad you came here. It took me a long time to find such a wonderful support group.

I just got back from my neurologiiiist. It was my first appt. in 4 months. The next will be 6 months.

My last appointment he told me I was having epileptic and non epileptic seizures.

That is what got me reasearching it more.

First a short accoint of my seizure history. The seizures started 17 years ago. I'm now 56. I have been to several neurologists as they moved in and out of town. Some of my EEG's were considered positive and others not. I have been on every anti epileptic drug out there.

I have had several types of seizures and yes you can stay concious during some of them.

I had, three day stays, in hospitals hooked up to the EEG. I would have no seizures so they showed nothing.

Because of my symptoms and periodic possitive EEG's they diagnosed me as having epilepsy. I lost my driving rights 17 years ago and I am supposed to wear one of the medic bracelets.

Four years ago a neurosurgeon did many highly sophisticated tests which led them to actually put a grid right on my brain along with probes in my brain.

The neurosurgeon said the seizures I had lit up like a Christmas tree. They were able to see my seizures were probably coming from my right temporal lobe so they took my right temporal lobe out.

I still have seizures.

Through the years I have had many different types of seizures. Yes you can have more than 1 type.

During my last neurologist appointment I was told that now I was having both epileptic and non-epileptic seizures.

I felt bad being diagnosed as having some non-epileptic seizures. I felt like it was saying I was just doing them for attention.

This is something people around me ( especially my family) have accused me of doing to get attention and that I could/can stop them whenever I want.

Today I hammered my neurologist to convince me that was not the case.

He confirmed the research I had done. Non-epileptic seizures can often be caused by repressed memories from a traumatic childhood. Boy does that describe me.

My research and then his confirmation states they definitely are not hysterical, coming from someone who deals with hypochondriac symptoms nor are they fake. They are very real.

I have been told that there are a few things you can do to try to reduce them but it comes down to the fact people who have them are not at fault. People can have them solely or in combination with epileptic seizures. Like me I guess.

Seizures can happen for reasons other than epilepsy. They can be a problem with a combination of different drugs, partial brain damage, brain dysfunction etc.

Hang in there and I suggest staying with this group to ask questions and have wonderful fellowship and support. lonnie

 

[sbncmo]

Hi Lonnie,

I'm glad to be on this site too. It sounds like you have had quite an ordeal with your seizure history. How terrible to have brain surgery & it not even work!

I guess you have read this entire thread. I suppose I could be having epileptic & non-epileptic seizures. My original neuro never said what kind have & as you have read here, my new neuro hasn't been that helpful. I stated in an earlier post that I am sure I have the complex partials since the shocking sensation a symptom particular to that type of epileptic seizure.

As far as non-epileptic seizures from a traumatic childhood, that could very well be part of what I am dealing with. I won't go into detail here, but I had a very traumatic childhood & it still bothers me. But having had a grand mal when I was a year old, long before the trauma in my life, there is still epiletic activity.

I've had 3 of the 24 hr EEG's & they have all shown seizures, but when they try the short 30-45 min EEG, nothing shows up.

I have been on several of the ep meds in combo with bi-polar meds. But since I'm no longer on the bi-polar meds, being I can't take them, maybe the ep meds will work differently. I learned some time ago that my CFIDS makes me medicine resistant so-to-speak.

My sister-in-law, who died 18 months ago, always said she was having seizures, but other family members said she was faking it, seeking attention. Then when she had a seizure that caused a major heart attack & killed her, they all felt guilty. She was only 26 years old, married only 2 years. I notice that a lot of my symptoms are like hers, but thankfully nobody thinks I'm faking it.

I lost my driving rights too & am supposed to wear the medic tag, but I haven't gotten the tag yet. In the past, I have stopped driving on my own, because I would have hallucinations - seeing cars that weren't there or vice versa. One time I lost consciousness while driving, almost going off the road. If I had, I'm sure it would have killed me, my son, & my nephew. I have a friend who has epilepsy & has been unable to drive for at least 15 years. A few months ago, she was able to drive again, being seizure-free for six months. I hope I get to drive again, but I'm not going to worry about it.

Anyway, thanks for your support & thanks to everyone else. I'm sure I will be posting here a lot.

Shelia

 

[sbncmo]

Hi Everyone,

I've enjoyed this sight. In looking at all the research material, it would appear that I have myoclonic, simple partial & complex partial seizures. I probably have others as well - a questions about that in a sec. I now know that I had grand-mal and absence seizures for several years as a young child. I wish my mother had informed me of this earlier. Maybe my current neuro wouldn't have blown me off the way he has.

Anyway, I have a couple of questions. I don't know if anyone can answer them, but here goes:

1. Why would my seizures become so active suddenly? Is it because I was on ep meds for 12 years & quit taking them?

2. There are times when I will suddenly feel so extremely tired, I feel like I will throw up or pass out. I know Keppra causes fatigue, but this has been going on much, much longer than I have been on Keppra. I don't recall any auras or any type of seizure before the fatigue, but could this extreme fatigue be a seizure or the result of a seizure?

I would appreciate anyone's input on this. Thanks!

 

[Nakamova]

Hi sbncmo --

It's hard to know what brought on the renewed seizures, but in general if you have a lower seizure threshold then you're more vulnerable stressors of all kinds than someone without a seizure history. It's also the case that once you do start seizing, your brain can get in the habit of seizing -- the little trail that the abnormal neuron firings travel on can become a bike path, then a road, then a superhighway...

Was there any particular stressor that you can think of that occurred around the time of the new seizures? Fatigue is probably the number one thing, but it could also be something like an infection, something in your diet, low blood sugar, -- anything that could be an physical, physiological, or emotional stressor. In addition, things like hormonal changes can also lower the seizure threshold.

Some seizures actually show up as fatigue, or as stomach distress or vomiting, so it may be that those symptoms are seizures as you suspect. Another possibility might be that you are having seizures that you are unaware of, and the symptoms are post-ictal. If you keep a seizure diary, include the odd things like the fatigue and vomiting to see if you can find a pattern. Do they happen at a certain time of day? After certain activities? After a bad night's sleep?

 

[sbncmo]

Hi Nakamova,

I really can't think of anything that was going on 18 months ago when the myoclonic seizures started. (See - I'm doing a lot of research, I'm learning what types of seizures I'm having.) I can see the logic in your statement that once a person starts seizing, the brain can get in a habit of seizing. In some of the research I'd done, I'd seen how some people are extremely fatigued & may even fall asleep after a seizure, which is why I was wondering if my spells of extreme fatigue are the results of complex partial since I am totally unaware of what I was doing shortly before then.

I can't find any kind of pattern. Seizures can hit when I sit down to read, work on the computer, fix dinner, travel in the car, during conversations, any time. I had the aura yesterday morning when I was seeing one of my doctors, told him I was going to have a seizure & within a couple of minutes I did. I think he must have called my neuro after I left because the neuro called & changed his mind about having me wait to start the Topamax until I am off the Keppra & now has me taking both, though he is still taking me off the Keppra.

Then this evening, my husband & I sat down to read together & I said "Why did the lights just dim?" He said they didn't. It happened again a couple seconds later. A few minutes later I had the myoclonic again. So, I don't know what triggers them.

Anyway, I appreciate the suggestions. I had started my research on WebMD & someone on the epilepsy forum, Candi, suggested I come to this site. I've really enjoyed being here. I appreciate anyone else's thoughts on all this.

Shelia

 

[Nakamova]

Any chance you are photosensitive? Some folks here are triggered by things like fluorescent lights (which are everywhere), flashing lights, bright or dappled sunlight, computer monitors, patterns, etc. Others are motion sensitive, and even certain sounds or music can be a trigger. Right now the heat seems to be bothering some folks too.

I found that standing up or sitting down quickly, or putting my hands over my head were triggers (probably related to circulation), as well as low blood sugar and a sensitivity to aspartame. It took me a while to figure those out.

 

[sbncmo]

As a matter of fact I am photosensitive. We had put those new curly energy-efficient flourescent light bulbs in our light fixtures & I started feeling weird when we turned the lights on, so we changed them out & I felt better. The same with flashing/scrolling marquees like Sonic's or banks or other businesses have - I can't look at them. Or even driving down tree covered roads on a sunny day - sometimes that triggers "odd" sensations & I just have to keep my eyes closed. Sometimes I get the auras when we are in road construction zones with all the orange & white cones. And certain music just plain gives me headaches & makes me angry. And I don't use any fake sweeteners or food things.

As far as heat, I avoid going outside as much as possible because some of my meds say to avoid sun exposure. Despite that, I'm hot all the time. About 4 year ago, my old neuro put me on a med that caused me to gain 60 pounds in 2 weeks. I've never been able to lose it & I've been hot ever since. I haven't worn a winter coat since then. I also have a bad back injury which has always limited my exercising & the extra weight makes it worse. One of the first seizure meds he put me on was Neurontin. It isn't supposed to make you gain weight, but I slowly gained 60 pounds on it over a year or two. He took me off of it & I lost it all in a month. I wish I could have with the last one. I can't remember which one it was.

I do have a lot of health issues to deal with. Apparently I've had epilepsy since I was a year old - having had grand-mal & absence seizures for several years back then. Growing up I developed circulation problems (one doctor wanted to amputate my feet, but my personal doctor refused thankfully), I was later diagnosed with FMS, MPS, CFIDS, Hypoglycemia, Rapid-cycle Bi-polar, PTSD, asthma, arthritis & high cholesterol (familial related, can't be controlled by diet) and the increased weight caused higher blood pressure. I was horribly abused as a child by numerous people which is what caused the PTSD & I know that PTSD can cause some forms of seiures, but again, since I was having seizures from the time I was a year old, long before the abuse started, there is no doubt that epilepsy is still a definite even now. I think back now to events in high school & college and realize that I must have been having seizures at those times as well.

There seem to be so many things that can trigger seizures. I keep trying to watch for some pattern, but I haven't found anything yet. They happen at anytime of the day or night, sometimes a single seizure, sometimes multiple seizures. Sometimes I have the warning symptoms, sometimes nothing. Sometimes I am perfectly normal after the seizure, other times I have speaking or comprehending - but then again, that could be another form of seizure still happening. There is just so much to learn about this still.

Anyway, thanks for your help & suggestions. I'm always open to anyone's thoughts.

Shelia

 

[Nakamova]

There are special polarized glasses that you can get to help with the photosensitivity. Worth considering.

Sorry to hear about your other health issues and the childhood abuse. My heart goes out to you.

 

[sbncmo]

This is just a general update. I've been dealing with a lot of anger this week. I don't know what to do about it. First let me tell everyone about the week.

I started seeing my psychologist again Monday, hoping he would be able to help me with the anger stemming from the medication & the frustration of dealing with the neuro. He listened & sympathized. Then I had a seizure right in front of him. After I left his office, I decided to call the neuro, to see if he really wanted me to take the Topamax since I'd had problems with it before. He called me back & told me to start taking it that day along with the Keppra - yet last week he had been adament not to take Topamax and Keppra together. My husband & I suspect my psychologist called the neuro & told him to start taking me seriously, that he'd witnessed a seizure & I needed to be treated with respect. But the medication has continued to leave me dealing with anger.

Then I was talking with my mom, telling her that epilepsy is now called seizure disorder & she said she prefers seizure disorder, stating she also has been diagnosed with it & knew I have had it all my life. So I was angry with her for not telling me. I told my husband she has her head up her butt. But then my husband was a little upset with me, feeling I was being disrespectful. Of course I apologized. But why didn't she tell me?

On Weds., a telemarketer called & I have told these people repeatedly not to call me, but they still to, & I just blew up at her. I was yelling at her so bad. I never used any bad language, just yelling at her to not call me, that I was tired of telling them to stop calling me, to leave me alone, that I don't want their service, etc. and she finally hung up on me.

I don't want to be that way with people. What do I do? How long do I try to tolerate these medicines before I say enough is enough? It's still another 3 weeks before I see the neuro. Do I try to get my valium increased in the meantime to try to calm me down? Any suggestions?

Shelia