I'm new here...

[LostInSpace]

I am 34 years old and have taught over the last 10 years. Two children 3 years and 11 months. I had my first EEG done 3 months ago and was diagnosed with partial seizures in the left temporal lobe. I had no idea! As a child I got into a great deal of trouble for daydreaming in class. In college, I quickly learned that I got very little from classroom lectures and took a great deal of time preparing for tests on my own. I earned my master's degree online, where I started realizing I would have to rewind the video lectures quite often because I would lose focus. I finally earned a 4.0! This was an accomplishment after receiving 2.7 at county college and 3.2 at state college.

I believe I had a seizure about five years ago... I say "believe" because my family doctor asked me if I had "urinated" and I told him "no". He told me that it was not a seizure, but a dream. I woke up one morning and started to go about my day. After being awake for a few hours, I started remembering what had happened to me that morning. I was awakened by an extremely loud buzzing sound in my head. I had no idea what it was. I looked around my bedroom to try and figure out what it was. I looked at the TV to see if it was one of those "this is a test"... There was no way it could have been with the tone of my buzzing. But I looked around to try to solve the problem. No test. I tried to locate my cell phone to see if I could find resolution there. As I reached over to pick up my phone. I could feel my body rocking. The rocking was not in a typical what I know of grand mal seizures type of shake, but more like a slow rock to my right side. My arms were locked and I kept trying to pick up my phone, but was unable to do so. I think I was in and out of consciousness during this time. Maybe this lasted a minute or two. I don't know.

As soon as I recalled what had happened I went to my family doctor. I freaked out on him. I told him that I believed I had a seizure. He asked me if I had urinated, I told him no. He said that I had a dream. My family agreed. Every time since then, when I fill out medical paperwork, when I get to the line that says "seizures?", I think to myself, "It was a dream." Does this sound like a dream?????

Over the last ten years, I complained to my family doctor that I have a poor memory. "It's stress." I have come to realize that my memory sucks. My last boyfriend and I would constantly argue because he did not believe me. My current husband believes me and tries to make things as easy on me as possible to enable me to remember. Over the last several years I realized that I was losing train of thought in mid-conversation. It takes me a few seconds, sometimes 30 to get back on track. I am aware and find it embarrassing.

After the birth of our second child, I was getting lost driving more frequently. Sometimes driving passed destinations three times in one day. I would get lost in my kitchen forgetting why I was there in the first place. When I returned to work after maternity leave, I realized I was going to destinations, and I would stop walking. I don't know why, but soon after I would think to myself, "why did I stop walking? I'm not sure. Ok, well let's get moving." I assumed I needed to have myself checked out for ADD much of the time over the last 6 years or so. Oh, and sometimes I felt like my body was going to collapse for a split second, but it never did. Could I really be having seizures???? This does not sound like what I have read about....

I went to my new family doctor and freaked out on him. He told me I have "mommy brain." I told him that I think it is something more. He gave me a neurologist. She said she didn't know if I had a seizure five years ago. I guess if a tree falls in a forest and no one is around to hear it, it does NOT make a sound. I had EEG and next day was placed on Keppra. I started at 500mg and was elevated to 2000 mg per day over the next two weeks. Now I don't ask people to repeat themselves. There is no more confusion on my "walk to the copier." My sentences are uninterrupted. I had a second EEG which showed I am still having Left Temporal Lobe seizure activity induced by hyperventilation and flashing light. I think to myself, what's the big deal??? If my EEG shows I have seizures brought on by hyperventilation and flashing lights, then I quit my gym membership and I won't look at the police car speeding past me to the dunkin' donuts. Do I have ADD??? Does this mean I have epilepsy??? Do I need a medical bracelet now??? Help me! My husband will listen and I think I talk him to death with it these days. My family, I feel is ignoring it.

My hair started falling out. I kept asking my husband about it and he told me it was "in my head." This was until two weeks ago he freaked out on me in the car when he noticed a patch of my hair missing. And I realized I started having some dizziness. Doc is now slowly decreasing my Keppra and now slowly increasing Lamictal to 200mg.

Does any of this sound like you??? I had a melanoma excision removed while in college. Since then I get the five star testing treatment on a yearly basis. I get yearly PET, CT, Xrays, and labwork done to make sure I don't have cancer. I keep thinking, "What if it has spread??"

Do these sound like seizures to you??? I am losing my mind! I haven't driven over the last 3 months. If my new EEG says I still have seizures, then why bother with medication? Can't I just avoid going to the gym and flickering lights??? Are my scalp tingles, ringing ears, sleepless nights and pulsating nerves in my face part of all this too? Because this all stopped while on Keppra as well??

Thanks for reading! I appreciate anything you can give me.

 

[CrunchyFrog]

Sounds like something at least neurological me, but there are heaps of people here who are bonafide experts and will have a better idea. My short term memory sucks, and I seem to get lost very easily even in places I should known well.

Just wanted to say you're the second person I've read that has been asked by the doctor if they urinated and then got told it wasn't a seizure because they didn't..... I've had confirmed tonic-colonics and have never urinated but, according to some idiot doctors I didn't have a seizure because I didn't urinate. I feel for you and everyone else here who seem to be struggling to find proper help from doctors who are compassionate and actually know what they are talking about. And I wish you all the best and I hope you get the help you need

 

[Fedup]

LostInSpace

First welcome to C.W.E. it does sound like you have been having seizures like Absence seizures or Partial seizures but there are a lot of different types of epilepsy. The one that most people know about is where the person rolls about foaming at the mouth ect, this is a misconception but this is the grand mal or tonic clonic, myself I have grand mal. I should say this does not happen very often and there are hundreds of types of epilepsy. Your hair falling out and more that you may have noticed could be caused by side effects, so it is always good to be aware of the side effects of all the medication you are on. I agree with CrunchyFrog and what was said about the doctor asking you did you urinate - that was stupid. Getting a doctor who knows something about epilepsy is hard, you should also keep a seizure diary, one where you can write down the time it happened what you felt like before and after the seizure and anything you can think of, it helps if there was someone there with at the time. also any change you might feel from eating different foods ect so you can try and pin point triggers. All this is helpful and more for your neurologist. Stress and lack of sleep can be two of the main triggers.

Remember always look up the side effects of every drug, its important to know these. Talking to your husband is good and the fact he is willing to listen is better so say thanks to him. Myself I do not like keppra but it suits others so it depends on the person. Just because an eeg or mri come back normal does not mean you do not have epilepsy.

 

[huskymom]

Welcome to our party! Always nice to meet someone new So sorry to hear about all of this that you have had to go through. Only you know your body, so whenever you feel something is happening, keep pushing until someone finds out what it is. Maybe you could see an Epileptologist in your area. They are specially trained in all the types of seizures. I wish you luck!

 

[Nakamova]

Hi LostInSpace, welcome to CWE!

I agree with the others -- see a specialist, not your family doctor. He's wrong when he says it's not a seizure if you don't have loss of bladder control.

If my new EEG says I still have seizures, then why bother with medication? Can't I just avoid going to the gym and flickering lights???

The triggers used during the EEG -- the flashing lights and hyperventilation -- are just indicators of a lowered seizure threshold. They suggest that you may be vulnerable to having seizures from a variety of secondary triggers, not merely that you are sensitive to those specific factors only. Triggers can be environmental or situational (like the lights and the breathing), but they can also be hormonal in nature (high estrogen/low progesterone), and/or related to nutritional or metabolic issues (food sensitivities like caffeine, gluten, aspartame, MSG, deficiencies, low blood sugar), low blood pressure, injury/infection, emotional and physiological stress, and the #1 trigger, fatigue. More importantly, untreated seizures can progress. It would be great to go med-free, but it's very important that your seizures don't increase -- you don't want the brain to get in the habit of seizing -- each subsequent seizure makes it easier for the next one to occur, and there's the potential that they will escalate. Keep a seizure/symptom/side effect diary -- it can help to get a handle on what's going on and if anything is changing due to meds or other factors.

Are my scalp tingles, ringing ears, sleepless nights and pulsating nerves in my face part of all this too? Because this all stopped while on Keppra as well??

Seems a pretty likely conclusion. Some of those things can also be medication side-effects, but since they stopped while you were on the Keppra, it's likely that they were neurological in origin. The hair loss can definitely be a Keppra side effect, so it wasn't just "in your head". I hope the Lamictal helps as well as the Keppra did, but without the side effects.

Best,
Nakamova

 

[LostInSpace]

Crunchyfrog, Thanks so much. I appreciate your reply.

 

[LostInSpace]

Thanks Fedup,

The diary would be a great idea, if only I knew when these episodes were happening. After receiving the results of my first EEG, I started to realize all the strange things that were happening to me. The feeling of my body collapsing, the head rush, getting lost on the way to my destinations. I'm unsure if any of these were in fact seizures. I haven't felt them since I began the medication, but I do have other feelings, which I believe may be attributed to the medication. Aside from this, most people are unaware that I am having seizures apparently, including myself. I'm not sure if the feelings I experience are in fact seizures.

 

[Fedup]

LostInSpace

You do not need to know when they are coming on you write down everything, when you realise you had you you try to think back before (does not matter if it was ten minuets or two hours ) and write it down and how you think you felt during it if you can, how you feel after it, tired, sore ect. Everything lost directrion, medication what you think, collapsing.

 

[momof3boys]

Welcome to CWE!

First off, I agree with the others and see this being a seizure condition. I too have left temporal lobe epilepsy and Ive never urinated on myself when Ive had a seizure before. So I dont agree that your dr is right in that area. You dont have to urinate on yourself when you have a seizure. Ive had seizures since I was an infant. Alot of complex partial seizures til the age of 18 months old, when I had my first grand mal seizure, then was placed on medications. Ive been on medications since then. Im on Keppra XR, the generic version, which I started yesterday. I was on the brand name Keppra XR for many years prior to that. But I just wanted to let you know that you are not alone. It sounds like simple partial seizures, that could be generalizing to bigger seizures if you are losing consiousness. When I have simple partial seizures, I am aware of what is going on during them, but I feel many different things and my body does alot of different things too.

They start out with a weird feeling that I know something isnt right. Then comes on the feeling of fear, and sadness... my heart begins to race... my stomach feels like I want to puke, and I get this tingling sensation in my left hand and foot that goes all the way up my body... my this time, my head turns to the right, and my body stiffens and begins to jerk. During all of this, Im hearing everyone around me, Im not just able to respond til the seizure is over. It feels like a million needles are attacking the roof of my mouth, when the tingling goes up my body to my head area. After the jerking stops, my body feels weak and tired. I have a headache and I mostly just want to sleep.

 

[KarenB]

Our little boy has temporal lobe epilepsy, and he has seizures all the time, and rarely urinates during a seizure.

Yes, sounds like you're definitely have absence and other types of seizures -- esp. of the EEG is showing activity. And if the seizure meds are helping you with focus and such.

AND if the EEG is continuing to show activity, that's all the more reason to stick with the drugs -- you can't just avoid the triggers all the time -- believe me, we try with our little guy, but it's an impossible task. But...as noted above, you have to research the side effects of the drugs (they all have their own little nasty effects) and decide which ones you can live with.

Personally, if the only side effect I had on Keppra was hair loss and a little dizziness, I'd stick with it (knowing how much more horrible some of the other drugs are). Our little guy lost his hair when on Depakote (also almost lost his liver) but that was the least of our worries. Hasn't lost it with Keppra though, but the Keppra makes him a bit crazy. Yet, Keppra is considered one of the least toxic among seizure meds.

You might want to look into other approaches to raising your seizure threshhold -- such as diet (might want to try eliminating gluten and/or simple carbohydrates), neurofeedback, using supplements such as magnesium to help with sleep and relaxing, and other vitamins and supplements are also quite helpful -- B6, selenium, etc.