So Frustrated! 2nd Seizure and no answers

[purpleme]

Hi all! I am so glad I found this place. I am in desperate need of answers...

In October 2008, I had my first seizure. I wasn't certain at the time nor were the docs that it was actually a seizure because I was exercising and lost my breath, fainted and hit the floor. I went to the ER and was told I was extremely dehydrated. Last Monday, May 11th, I was driving and felt blackness creep in. Shook it off, it was a long weekend, I had been drinking and gotten little sleep. It was finals week at school and I was stressed. Thought nothing of it, until I woke up staring up at the sign of the store I was supposed to be walking into. I had ran my truck into the pole in front of the store and flipped it over. About 8 people righted my car when I wouldn't respond. I spent the rest of the day in the er, getting xrays, cat scans and eeg (or whatever that's called). Again, I was severely dehydrated and the resulting scans found no abnormalities. I was assigned a neurologist that did not answer any of my questions about possible causes (the drinking, low electrolytes, etc) and just pushed pills at me.

I am extremely apprehensive about taking pills for various reasons ESPECIALLY when the doc doesn't give me any explanation. I guess what I hope to find out is: is it possible this was just a fluke and I need drink less beer more gatorade or???? Is this really something that I all of the sudden developed? I just turned 31 and have prior history of seizures or any head injuries. My father told me that my grandfather had seizures but from what I understand he got them after an injury from WW2.

Can anyone offer advice or anything? I am freaking out.

[skillefer]

Hi purple! Welcome to CWE. Yes, you can all of a sudden develop E. Here's the thing...everybody can have seizures. For the average person, it takes an awful lot to trigger a seizure. For some of us, it doesn't take as much. Now, many things can trigger seizures, hyperventilation, low blood sugar, etc. If a person has 2 seizures, they are labeled as having epilepsy. Now, there are some things that you can do to be proactive.

1. Get 7-7.5 hours of sleep every night. (no ifs, ands, or buts)
2. Eat 6 small, healthy meals a day (A protein with each meal, and by small I mean it fits on a salad/dessert plate.)
3. Eat/drink healthy. (No fast food, pre-cooked food, etc. cause they're loaded with chemicals that can trigger seizures.)
4. No caffeine. (no sodas, tea, coffee, mate, energy drinks, etc....caffeine is a stimulant, and that's the last thing you need)
5. Find a healthy way to deal with stress. (exercise (but avoid hyperventilating), swim, walk, yoga, tai chi, painting, prayer, meditation, it's all good....)
6. No OTC cold meds. (The decongestant and antihistamines are stimulants....)

The main things that trigger seizures are lack of sleep, too much stress, and too many stimulants. For some people, hyperventilating can trigger it too. The danger is, that once your brain has learned to respond to something by having a seizure, it'll do it again and again. It's something called kindling. If you have epilepsy and do NOT treat it, it can get worse over time. It can, in the worst cases be fatal. The thing is to find out why you had the seizure, find out if you have epilepsy, and if you do then to find a way of treating it that you are comfortable with. Pills are NOT the only way available. Check out the info in the library here. Hope this helped.
And ask as many questions as you need. That's what we're here for.

[purpleme]

thanks for your response! So is it possible to not have seizures (if I found out for sure that I am not epileptic) by just positively diverting stress and drinking enough water? I don't want to have another incident occur while driving. I am incredibily lucky that I didn't kill anyone and I only came away with a fractured vertebrea. I don't want take the meds if I don't have to but my SO and doc are pushing me to take them. I want to know alternatives and how to go about finding out if this is not epilepsy... Do I need to go back to the doc and get more eeg tests??

[epileric]

The search option at the top of the page is great for finding various topics on this site. My life would be easier if I myself would remember to use it.

[Meetz1064]

given you some excellent advice there, Purple.

Now, just because the tests showed no abnormalities at the time doesn't mean much. The EEG you had was probably not that long (20 minutes, or maybe an hour?) when in reality, in order to find anything definitive, the EEG has to be AT LEAST 24 hours.

Second, the neurologist probably put you on the meds as a preventative for the time being, to prevent the kindling of which Skilly spoke. You do need to make an appointment with a neurologist for a good, thorough appointment, with that LONG EEG I mentioned. And ask plenty of questions.

Third, I would say that those 2 events you described would indicate that you have some sort of issue going on, period, and maybe you DO have a lower seizure threshold. In other words, maybe you DO have E. If you do, your life is not over, E is simply a bump in the road and we are here to help you....there is plenty to learn and implement in your life to help yourself.

Finally, DO start a journal. Make sure you record things like those events in it. Also, what you eat (how much, when and what). Video game, computer and TV time (Yes, it can be a trigger, so write down how much, and when). Write down your sleeping patterns. Like Skilly pointed out, 7 hours is the MINIMUM. Are you getting that? Whatever else you can think of that might need to be written down, or want to write down, write it down. Oh, and if you are female.....write down your menses. There is such a thing as CATAMENIAL EPILEPSY which is tied to your hormones and the monthly cycle.

Feel free to check out the Library, ask questions........we'll be here.

Oh, and btw....welcome to CWE. Hopefully Eric or Buckeye will be around soon with some decent "virtual" coffee, as I just burned the bejeezers out of mine (fell asleep). Theirs is ALWAYS much better than mine anyways. I'm sure you're going to like it here.....Mr B, our host, has built us an AWESOME home here....

Take care,

Meetz

[epileric]

I knew I forgot something, coffee....

[purpleme]

thanks again for all your replies.... If I do have a lower than normal threshold for seizures, why now? Seriously, I have gone weeks on less than 5 hours of sleep a night before, had plenty of 2 a.m. drunken stupers, and retarded amounts of stress for years! I worked 2 jobs and went to school full time. This is not abnormal for me. The only difference is that I had the added stress of relationship issues... Grrr. I know this is not the end of the world but damn it is so frustrating. I feel like as soon as I tell people the reason I have wrecked my car they look at me like I am a *#% freak. The pills the doc gave me have side effects that include mood swings, sleepiness, and aggression. I am sooooo mad. So sad, no car, fractured back, and I have no idea if I am just going start seizing at any given moment. Lovely. Sorry..venting

[Meetz1064]

is no answer to the "why now?" question. For each E patient, when it shows up is when it shows up. Some of us have it show up as we are coming out of the birth canal, some a few hours or months later, some of us when we are even 70 years old. E just shows up when it feels like it wants to. Sorry about that.

Stress is a big trigger for seizures, and you may just have hit your limit, period. Who knows? No one will. It would be nice to be able to look inside our heads to do that, and know..........Perhaps the "extreme" stress from that relationship was what threw things out of kilter for you. Even if it wasn't extreme, as such, one way or another, your body evidently just has a lower threshold, period....so you will have to learn to deal with it.

And those looks you got/will get when you explain about the accident? Be prepared for those. E does have a bit of a stigma that goes with it. That does NOT mean you have to totally hide it. So be prepared for that. Do what you need to do to protect yourself (MedicAlert tags), etc and talk to your friends and family about it. If you lose some friends over it.......don't be surprised.

In regards to the meds problems.....yeah, there are plenty of side effects (SE's) from each and every one that you take. For example, one called Keppra is very well known to cause moodiness/emotional mood swings to a point that there is a nick name for it--- "Kepprage" There is actually a simple way to lessen that problem that many people have found over the years, and has been documented in many E forums--- Vitamin B6.

We E patients have learned lots of things about nutrition and taking care of ourselves over the years....and that information is in this forum. Take advantage of that knowledge. Be proactive in your care. Stand up for yourself, and remember that YOU PAY YOUR DOCTOR"S SALARY. Taking a positive stance like this will help you keep a positive attitude towards E, even when it is most frustrating.

[Cint]

Hi Purpleme & Welcome,

As Meetz stated, there is no answer to the why no question. I was 23 when I started having seizures. I ended up with ugly burn scars on my arm and back because of the 1st miserable seizure in the shower. I, too, had my education and was on my way in life when E hit out of the blue. NO head injury, etc.

And as everyone has stated, you'll have to be proactive and reorganize your life so you can lower your stress level.

[skillefer]

Meetz is right about the journaling and the diet...as well as the fact that you may never know the why. Many of us don't. My neurologist says I have " an ideopathic seizure disorder" in all the letters or papers he signs for me...that's the fancy doctor speak way of saying "you have seizures and we're not sure why" . As for the kepprage, try the B-6 supplements....one of the people on keppra here will probably be able to tell you about how much works for them.

The "why now" is often the most frustrating aspect...because sometimes it's just a matter of your brain meeting it's limit. Or it could be that you had a really high fever when you were an infant, and it just now kicked in. (Yes, high fevers as an infant can cause seizures later in life...) Or, it could be that you have a food sensitivity that you don't know about and your body just reached the critical mass of the chemical it's sensitive to. Or it could be you've developed a food allergy. (Trust me, it's not that uncommon. I used to be able to drink milk. Not anymore.) Or it could be that you are deficient in a vitamin or mineral...for example magnesium or zinc. All of these things can trigger seizures. It could be that you've had a different type of seizure before and never realized that you were having seizures. (That's actually not uncommon in folks that are diagnosed as adults...) Or it could be low blood sugar triggering it....There's lots of different possibilities. You said your grandpa had seizures, but not till after a head injury. Maybe he had it, didn't realize it, and then the head injury triggered it....It could be that your grandpa carried that gene...maybe he had a cousin or uncle or aunt or parent that had seizures. Back then it wasn't really talked about, and tended to be avoided because of the social stigma. Trying to track down why is good. that's why many of us use a journal. The problem is, in the meantime, you have to figure out a way to deal with the condition, because quite honestly, you might never know the why. So start making some lifestyle changes. Take a proactive approach. Keep a journal. If you can, have someone videotape exactly what happens during a seizure for you. Write down all of your questions so that you remember to ask your doc. Have a loved one go with you to your neurologist appt. (That way, if you can't answer an EMT's questions, they can...) Invest in a medic-alert style jewelry. (They have some that are actually quite nice looking...) And learn everything you can about your condition. Knowledge is power. So definitely check out the library here. And last but not least, don't try to hide this from your family or friends. Yes, you may find that you lose some friends...but if they're willing to walk away from you because of this, then they weren't really your friends.

[flinnigan]

Sometimes its been there all along and we just didn't notice it so it gets louder. If I look back at my report cards there are constant comments about me "daydreaming" or "staring out into space" now called absence seizures. It took hitting a mailbox with my little one in the car to get my attention.

[purpleme]

Oh my gosh, thank you all so much. This has been a great resource. I started taking my keppra last night finally after much debate. I took the advice that it is prevenative until further investigation. I am working on pulling all of my records from both ER visits to get the information on my electrolytes.. Then I will be following up with my neurologist.. I don't remember anything from that visit, I was in a bit of shock I think. Plus, I now I have more information and can ask more pointed questions.

Love you guys so much already! Thanks!

[skillefer]

No problemo! It's why we're here.

[RobinN]

Hi purpleme...
I would have tried to sway you away from the meds, but they were useless to my daughter. In fact they caused more seizures, and horrendous side effects. Unacceptable in my book.

The number one place to look for answers is in your intestinal tract. If it is damaged in any way, it will find ways of compensating. There are many symptoms that people deal with, and all of us are here due to seizures. However they are just a symptom. Finding the cause will improve your quality of life. There are some fascinating alternatives that you will never find out about through your MD. Some have been around quietly for many years. Being open minded, and going against the grain, sometimes is what it takes to heal.

Hope you find some answers here.

[purpleme]

RobinN -

I was VERY hesitant to take the pills because I am more apt to handle any medical issues in an alternative way (eating healthy, vitamins, natural medicine, etc). Plus they have so many scary side affects... but after much debate and persuasion I decided that would rather deal with all those things for a little while until I figure out what the cause is than to crash another vehicle and hurt myself worse or someone else. I am scared though because I have read that it can cause seizures, too...

What do you mean about the intestinal tract? What sort of issues have you uncovered regarding your daughters situation?

Thanks!

[RobinN]

hypoglycemia, intestinal distress (constipation for years), yeast flare ups, eczema, carb and sugar addictions,

If you have the patience you can read the story (linked in my signature) about what we have dealt with. More has been confirmed to me recently.

Intestinal tract is your "gut". Where your food is digested. If any of it is damaged due to nutritonal choices (standard american diet) you can create what is known as leaky gut. The food is then leaked into the blood stream and the body sees it as an unknown invasion and sends antibodies to attack it. Immune system gets out of wack, causing inflammation in odd places. Liver can't deal with all the toxins and also dumps excess into the body. The body can't cope and learns to find ways to cope.

This is a simplistic explaination. However, stress increases, the body learns to seize as a coping mechanism.

Children with gluten intolerance have been tested and their EEGs are abnormal. Does that make it Epilepsy... or gluten sensitivity? Do we find a label to place on the symptom, or do we go after the cause?

[knothing]

What you will come to realize is that seizures are not cut and dry. There is no way to predict or in some cases control. I had my first grand mal at 37, and I was relaxed just having a casual conversation with a coworker. Based on the type my neurologist said there was only a 50% chance of a second one. 6 months later I am laying on the couch and a second one occured. Then the odds were 75% of another. I started on Keppra, I also take 100mg of B-6 to help with the mood swings or Kepprage. Just a few weeks ago I had one in my sleep...but it was minor and not a grand mal.
Best advice is to take the steps that you fell are required with your doctor. Research your issues and understand there is no 100% test for epilepsy. There is always hope. And for me the worst part is that my loved ones suffer the most because I have no choice but to accept what has happened. They have a harder time accepting it.

[RobinN]

Also remember that Epilepsy is a label for an underlying cause. Treating the symptoms of seizures does not get you very far. That is all most doctors know how to do. If you do research to find the cause for your seizures, you might also become seizure free and be able to be med free as well. There is that possiblity which does bring HOPE

[knothing]

Based on this entire thread and given your description I say see more than one doctor, either a Neurologist or dr that specializes in epilepsy. See the best expert you can get your hands on. Maybe for you it will be like RobinN says " a Label for an underlying cause". For myself Epilepsy is NOT a label it is a condition that I have and it is no more different than having severe allergies. I have limits and restrictions (can only push myself so hard and caffeine is a thing of the past) which are very manageable.
Just remember this will take time to figure out and Epilepsy is one of the most underfunded as far as research goes compared to the amount of people who have this.

[RobinN]

I am going to disagree with you knothing.

Epilepsy IS a label. The seizure is only how the cause is manifesting itself. Once the label of E is applied, the doctors ignore the underlying problem, and only attempt to stop the seizures. You begin thinking that "I have Epilepsy, and only drugs can treat it." Drugs can only supress the seizures, not treat the underlying cause. If the cause is found and treated, the seizures can be reversed. Even in a brain that is abnormal from birth, seizures are a reaction to something. It is a matter of your belief system. If you believe it can't be fixed then it never will be. Epilepsy is not a disease, it is only the symptom. Many have been convinced that seizures are the problem, and not the symptom, and that only drugs and surgery can fix them.

It certainly is no different from having severe allergies, in the sense that all allergies are a problem with the immune system. That is another subject, but it too can be treated.