Help please - just diagnosed

[Augusto]

I am 36 and just suffered my first episode (complex partial) last Saturday night. Needless to say the friends that were there with me when it happened got scared when I started shaking, collapsed, and lost consciousness. Fortunately they called an ambulance and was off to the hospital withing minutes. Nothing like this had happened to me ever before. I am actually a healthy triathlete !! Anyway...I spend the night in observation at the emergency room, rested on Sunday, and had an EEG performed on Monday. I will get an MRI in a couple of days. I need your help. I am scared and anxious. We need to find out the results of the MRI in order to determine if it is Epilepsy or an attack trigered by something else. In the meantime I am assuming it is E. In the last couple of days I have heard anecdotes of people who get an attack and then never again; I am hoping to be one of those. Is this true / possible? have people in this forum heard about such situations? Ideally I would like to think that this was a one off (denial...?) but don´t know if such cases really exist. Well, I just wanted to touch base with others who have gone through this before. I would highly appreciate any help / advice. Rgds.

 

[RobinN]

Welcome Augusto,
I was told this was true from the "team" my daughter had out at UCLA. I was told everyone had a one seizure "pass". But then again they told me other things that didn't match up with current knowledge so...
Let's hope in your case it was due to an unusual imbalance of some sort and that you will not have to endure the terrible journey of E.

From my limited knowledge and MRI will not show whether or not you have E. It can only show malformations, and the physical structure of the brain. An EEG can show an abnormal wave pattern, but also the lack of this does not give you a free pass either.
Great news...huh?

Healthy triathlete... are you sure your body is getting the proper nutrition? There is one theory that a diet rich in gluten and casein can have an adverse effect on brain function.
I personally was affected for years with migraines (now known to be in the seizure family) due to an inadequate balance of magnesium.

So, what you need to understand is that there are many reasons that your body might react in this manner. It is the brains way of giving you a warning that something is not right. Out of balance, instability... this is why nutrition, and neurofeedback seem to be helping my daughter see a reduction in her seizures.

I hope this site gives you a lot of information to work with to help you figure out what is causing your current seizure episodes.

 

[Bernard]

Hi Augusto, welcome to the forum. :hello:

I am 36 and just suffered my first episode (complex partial) last Saturday night. Needless to say the friends that were there with me when it happened got scared when I started shaking, collapsed, and lost consciousness.

That sounds more like a tonic clonic than a complex partial seizure.

... We need to find out the results of the MRI in order to determine if it is Epilepsy or an attack trigered by something else.

An MRI will help identify any physical abnormalities in the brain (tumor, scar tissue, brain malformation, etc.) that could be focal points for seizures, but it can't "determine if you have epilepsy" or not. Epilepsy is an umbrella term that encompasses a lot of different problems that all manifest similarly (in seizures). Most people with epilepsy never get a positive answer as to what the root problem is in their case.

In the last couple of days I have heard anecdotes of people who get an attack and then never again; I am hoping to be one of those. Is this true / possible?

It's possible. It's also possible that you got 20-30 years without another seizure episode and start having them again. There are no guarantees with seizures.

I would highly appreciate any help / advice. Rgds.

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Make yourself at home here. There's lots of information and good people willing to help you in your journey.

 

[skillefer]

Hi Augusto! Welcome to CWE. We're a pretty friendly group, so feel free to ask questions... As for your question on is it possible to just have one seizure. Yes. My great uncle on my mother's side had one seizure when he was in his forties, then never again. Read the Epilepsy 101 thread that Bernard told you about. It has some good info on seizures. Epilepsy is not the end of the world. It may put certain limits on what we do, but it's not the end of the world. Many people with epilepsy get degrees, have jobs, get married, have children, and even participate in sports. We just have to be more careful about getting exhausted or overheated. Also, your doctor may tell you that you're not allowed to swim alone anymore. The thing to do is to get as much information as you can. The more you know, the less there is to really fear. So welcome to CWE Augusto.

 

[Augusto]

Thanks to all. Do you know (or could you push me towards the right sources) what the probabilities of having a 2nd seizure is after your first one? Or the likely time lapse between the first and second seizure? In an odd way I can accept taking medication if a 2nd seizure presents itself and confirms epilepsy. On the other hand I am reticent to start medication after having had "only one" seizure. This is still very recent and the waiting is stressing me out. Waiting for the MRI results, waiting for the doctors commentary, and waiting for (maybe) the next seizure... I am hoping that the 2nd seizure, the one that confirms E, will never come, but the only way to know for sure is, yes you got it, waiting... Any general thoughts on how soon to start medication? Wait for a 2nd seizure or start right away? Thanks for your concern and support.

 

[skillefer]

Yes, the waiting is hard....but you know, stress tends to trigger seizures. So stressing out about it probably not the best thing to do. Make sure you're getting adequate sleep, eating healthy, and just keep living your life until the next doctor's appt. You'll get different answers here in regards to meds. Some people here take them, and some choose to use alternative therapies like EEG Neurofeedback or vitamin supplementation. Whichever you choose to do, make sure that you investigate whichever med the doctor might suggest. Some people have very few side effects, and some people have horrible side effects. You need to wait for the MRI and talk with the neurologist before taking meds. For all you know, the seizure might have been triggered by low blood sugar levels, or other things. So in the meantime, use this time to just sit and investigate what epilepsy is, and what the different treatments are. Try planning a course of action, as well as keeping a journal of what you eat and drink and when, how much sleep you get, as well as any stressful events in your life. Try to think back to the day of your first "episode". You may find that something triggered your seizure. If you can have all this written down, it gives your doc more information to work with. Also, write down any questions you may have for him. THat way, you get to ask your doc everything you wanted to. If you have a bad memory, you may even want to have someone go to the doc appt. with you. You'll get through this Augusto. Just be patient.

 

[RobinN]

My approach is quite opposite of yours I guess, so it might be difficult to understand. I will attempt to share my thoughts.

I see this as a warning that something is amiss in your system. Since I presume you did not have an accident or a illness recently (you did not mention it), you need to take this time rather than waiting for one to happen again, but to do whatever is necessary not to let it happen again. Begin relaxation techniques if your recent pattern is to be stressed out. Analzye your nutritional choices to make sure your brain is receiving the nutritients that it needs for proper functioning. Obviously you are asking a lot of your body if you are a triathlete.

The diagnosis of E is only a label. You have to find the cause. Almost like a sliver in the foot... you have to go digging. For me it has meant turning one rock over at a time. I think I found the golden rock for my daughter, thanks to the map that Bernard supplied me with.

 

[alivenwell]

My approach is quite opposite of yours I guess, so it might be difficult to understand. I will attempt to share my thoughts.

I see this as a warning that something is amiss in your system. Since I presume you did not have an accident or a illness recently (you did not mention it), you need to take this time rather than waiting for one to happen again, but to do whatever is necessary not to let it happen again. Begin relaxation techniques if your recent pattern is to be stressed out. Analyze your nutritional choices to make sure your brain is receiving the nutrients that it needs for proper functioning. Obviously you are asking a lot of your body if you are a triathlete.

The diagnosis of E is only a label. You have to find the cause. Almost like a sliver in the foot... you have to go digging. For me it has meant turning one rock over at a time. I think I found the golden rock for my daughter, thanks to the map that Bernard supplied me with.

You have my best wishes towards finding the right answer.

It seems like you're really on top of being proactive in controlling what could be epilepsy. Keep up the great work! Try to come to a neurologist with as much information as possible. Even the smallest detail may be important.

I totally agree that stress is a huge factor with epilepsy. This is the worst part of it. The more you worry about that next blackout, the more likely it will occur. Then, that vicious cycle just starts all over again. Nasty!

I've learned that breakthrough seizures may take a while to stop. I have had a few in the past, stayed on the exact same medications, and had a few seizures until everything calmed down. Sometimes, I had a temporary increase in the meds until everything went back to a normal state. The brain is tricky!

If you are placed on medication, I personally recommend brand name only. The brand name medication has a consistent filler ('inert ingredient') along with the exact amount ('therapeutic level') of the actual 'active' drug. Your doctor will have to mark the prescription as brand name only as well if you choose to take medication.

They are finding out that people switching between brand name to generic, generic to another company's generic, or generic back to brand causes seizures. For me, it's worth the extra cost to buy brand name only.

Ironically, because of the epilepsy, I was always walking everywhere and now they're recommending that we walk at least 10,000 steps daily.

I'm hardly an athletic person like you, but I do walk my active bored border collie everyday. This past week had excessive heat outside. So, we're doing our exercises inside. Exercise is a great stress buster, as you probably already know. Just do it where there's not a lot of heat. I'm running an air conditioner right now.

Is it possible that you needed those electrolytes from those sports drinks (non-caffeinated, of course)?

It might be a good idea to monitor your sugar level, especially early in the morning before you eat anything. People with a low sugar level (below 100, I think) can pass out or go into a coma. Glucose monitors are available in drug stores. Check it every morning. Some monitors have a memory of your levels throughout an entire week (or longer).

If possible, try to write down stuff that you're eating and drinking. Like RobinN said, it could be a number of possibilities there. My weight loss group encourages us to do that one. I love chocolate and it's SO easy to eat one piece after another without a second thought.

Write down all current medications.

Knowledge is power!

 

[brain]

:hello: Augusto!

Welcome to CWE, and as Bernard posted,
click on those links and there's a lot of
info that can be found there and plus feel
free to browse around - lots of info, resources,
and much more can be found in CWE, and even
humor and laugher!

But so sorry you had to experience all of that
recently though! Hope you are feeling better!

 

[paradise survivor]

Welcome aboard! There are many stories here and mine is but one. Epilepsy came to me later in adult life, I was 37. I tried to overlook the two blackouts I had. they happened several weeks apart so I figurede something else was going on. I even told my primary care doc he gave me the wrong card, I needed a cardiologist not a neuroligist. He said sorry but he gave me the right card, and so began my journey. I have had lots of tests with lots of questions and few answers until the last round of mri's eeg's and pet scans oh and a new doc (head neuro for the university) finally they saw all the junk going on in my brain. For me, I have problems in both the right and left temporal lobes. (very unusual) I have gone the medication route and I have gone med free. I can only speek for myself but I prefer med free. That being said I have had to be VERY aware of my body signals and act accordingly. Learning the signs is tricky and takes time but for me it is a vast improvement in the quality of my life. Because of all the meds prior, I became hyper sensitive to the slightest chemical changes. I choose to deal with the events as they come rather than live 24/7 with side effects. I do this with my familys blessing and my doctors knowledge and scoldings. Seizures can vary in intensity and can increase and decrease occurrances. What I have learned most since my diagnosis is patience and forgiveness...for myself. There will be times in my life when I can not do what I want when I want. I can control how I view it. I have learned not to be sooo hard on myself and to recognize that I am not being lazy if I say no to something because I don't feel well. You are probably feeling like you can't trust you own body right now, hopefully you can learn to listen more closely to your body's signals but it takes time so the best I can tell you is hang on, buckle up and always try for a soft landing:banana: ok folks I am off the soap box sorry:soap:

 

[Augusto]

Thanks to all for your contribution. At this point I am hoping that this first seizure was related to some sort of potasium / electrolyte imbalance as relates to my intense sports activities, probably linked to a day with bad nutrition. I am hoping that this is the case but wont really know until next week (MRI and doc´s visit). Does anyone know how the potasium and / or electrolyte imbalance can affect / trigger seizures? Has anyone had experience with this particular kind of episode? Rgds, A.