Hello all, and it's a pleasure to meet you. I apologize for the length this post may achieve, but I will break it into chunks that can be skipped if you so choose. Thank you, if you don't read, for just letting me post.

I am terrified. I've been putting off this doctor's appointment for about four years now, and have finally made it for next Monday at noon. To put my fears into perspective, I'm a single divorced mother of a beautiful seven year old. I'm a veteran of the Navy. I hold a job that pays me well above minimum wage and I'm currently going to school with the goal to become a doctor. My daughter has a sensory disorder that makes school very difficult, and I am often called to the school to handle the issues. We live pay check to pay check. My father just had open heart surgery after a massive heart attack, and my mother has been diagnosed (finally!) with bipolar and is coping with her new medication.

On Monday, my house of cards may crumble. If you want, you can skip this part and go down to the symptoms I've been experiencing, but I needed somewhere to get this off my chest.

If I am told I have seizures, I know my car will be taken from me. I live no where near any type of public transportation. I cannot afford to move closer, and my current house is smack in the middle of the three locations I currently frequent. I have no support that will take me from one place to the next to the next. I'm an incredibly busy woman, and losing my car will make me completely homeless, jobless, and withdrawn from my future career. I fear losing my child because I will have no house or income.

But I also fear leaving her without a mother. If I let this go and suddenly come down with horrific grand mal seizures and one of them kills me, will it have been worth it?


So now that my fears have been laid out, I ask for someone to take a look at my symptoms who experiences seizures. If you can, give advice. I understand no one is a doctor (that's why I made the appointment ), but I'd like to go in with a more clearing understanding of seizures. What I read is kind of confusing; I feel it would be best to get the info straight from the horse's mouth, so to speak.

I don't understand the auras. If my experiences sound similar, please let me know. About four years ago, I experienced an intense (what I originally thought) breakdown for no apparent reason. I was losing time, becoming extremely depressed, hearing voices occasionally, experiencing dissociation, feeling intense fear and panic for no reason, and seeing things. The seeing things included: little shadow 'bugs' (for lack of a better word) going up and down my field of vision, larger shadows moving at my peripheral, and at one point watching my little Christmas tree bend, sway, grow bigger and smaller, and then return to normal. All of this terrified me as all of this was happening at the same time. I thought I was going insane, so I immediately sought out a psychiatrist and therapist.

They immediately latched onto my mother's bipolar history and claimed I was bipolar. I was placed on Depakote first, and it worked, but I was still having intense visual issues and depression. They added Seroquel. It didn't matter how much Seroquel they added, it didn't do anything except make me gain fifty pounds in three months and bring on horrible tics.

I sought out a different psychiatrist and therapist (the therapist was awful; he was very condescending and actually would make me feel like a horrible person!). I was then diagnosed with Dissociative Identity Disorder, due to the time loss. I was weaned off the medication. The therapist was great, and I started to feel much better after about a month, but I could tell DID wasn't my issue either. Unfortunately, I had to move before we could find a better diagnosis, and I haven't had a therapist/psychiatrist since.

A coworker of mine suffers from temporal lobe seizures and, due to my own personal interest, I asked her about them. I always thought seizures were like the movies; nothing but twitches or drooling. I don't mean that in a rude way, I was just ignorantly unaware of the true condition. She started to tell me her auras, and I almost fell over; my issues sounded very much like hers!

I have issues with memory that are progressively getting worse. Time has become very odd to me. I can still tell when time has passed and about how much, but if I'm asked to recall when an incident happened it would feel as if it happened years ago, when in reality it was yesterday or two days ago. I never know what day it is; I have to constantly remind myself.

I used to be pretty articulate, but now I can barely find words! I'll be trying to ask my daughter if she could fetch me a water from the fridge, but I'll forget the word 'fridge'. I then, as frustration and embarassment builds, try to describe the fridge as "the thing that holds food!". Sometimes she understands, sometimes I'll eventually get the word out, or sometimes I get up and do it myself. This happens very frequently, and it's becoming disturbing.

I 'smell' cold. Have you ever gone from a warm house into freezing cold weather and taken a deep breath through your nose? That's the smell I'm talking about. My nose gets tingly and I 'smell' cold. I don't really get other olfactory issues, just the cold.

I still dissociate, but sometimes the world will come roaring back to life. Colors will seem brighter, I'll suddenly feel very connected and aware, and I'll become very happy as you can imagine. And then, it'll slowly slip away again, back to the hum drum and my thoughts. I didn't think much of those episodes until my coworker told me she experiences those too.

Chest pain. This might be a separate issue (I'm going to a cardiologist too to make sure). I'll be sitting down doing homework and suddenly it'll feel as if my heart is fluttering. I feel panicky, tingles rush from my cheeks to the rest of my body, and I'll even feel as if I've been kicked from the inside near the breast bone. I'll just keep breathing, though sometimes I cough, to keep from panicking. And then I just feel my heart pounding for a while until that calms.

I'm always exhausted too. I can't figure out why, as I sleep well.

I get these head tingles. I had a friend once jokingly tell me a spirit was touching my scalp. It's like goosebumps, but without the bumps. In fact, I'm experiencing it now. I used to get full body tingles while trying to sleep, but those would lead to incredibly vivid and terrifying sleep paralysis. I suffer from those very often, though lately they've petered off.

Crying spells drive me nuts. I'll be listening to a song, and suddenly feel the need to cry. I'll be swallowing the lump for about a minute and then the sensation is gone. I'm not depressed when these episodes come along nor am I even listening to sad music; they just happen. It's not always music that brings these on either, though they are more frequent when music is playing.

I'm sure there is more, but I have to head out to work. If you've read this far, I thank you. I understand I posted a lot, but I hope you can understand my trepidation. If you can, I'd like to read your own stories; your auras, your actual seizures, how you feel during them, etc. I'll update this post when I get home with what I believe are the seizures I've experienced.

Thank you again for your time, and thank you for having me here. I hope you all are having a wonderful day!

Hi LinaeveStar,

Welcome to the forum! I have had epilepsy for 43 yrs. and had 2 brain surgeries to help reduce my sz. (seizures). What you are describing to me sounds like 2 different things which could be a possible panic attack or anxiety disorder and when you see the bugs and smell the cold that is a simple partial sz also known as a aura sz.
If I may ask do you feel tired after you have had these possible sz. or confused for a few seconds like you don't remember what happened a little while ago it's like amnesia if you have any of those signs and get headaches after this it is epilepsy.
Don't let the epilepsy stop you I have family along with myself that have had grand mal (tonic clonic sz.) I have had temporal lobe epilepsy and I also have complex partial sz. where both sides of the brain are being fired up triggering sz.
What you need to do is have your family Dr. refer you to see an Epileptologist (Dr. specializing in epilepsy) and be sure you go to a Epilepsy Center these places are at large hospitals or University hospitals. An Epileptologist can go into detail and find out what's going on with you even if its not epilepsy. Lack of sleep, and stress are the 2 main things that can trigger sz. Also sometimes a person can be audio or photosensitive meaning certain colors or sounds will trigger sz. and I wonder if this what may be happening with you when you listen to music. There's always been depression when it comes to epilepsy do to the meds a person is taking or the area of the brain that's triggering sz. Be sure to deal with a neuro psychiatrist they no much more about what's going on in a persons brain and can find out what the problem is before any psychiatrist can.
Cut back on starch foods and carbs along with caffeine and stay away from anything with NutraSweet in it like diet soda, it has been proven that all of this can trigger sz.
The problem with your sleeping and your heart can also cause sz. you should get a sleep study done and have a Dr. check your heart out to make sure you are getting enough blood flow to the brain.
If you live in the U.S. call the Epilepsy Foundation of America at 1-800-332-1000 and let them know what's going on and they can help you out even with the finances and transportation they will be able to get info to you to help out.
In the mean time try taking vitamin B12 1000 mcg. once a day the B12 helps calm the nerves down and it has reduced my sz. greatly.
I wish you the best of luck and May God Bless You,

Sue

Thank you for your time!

I do get strange bouts of tiredness, sometimes extreme sometimes not. I've never tried to pinpoint if they coincide with any other symptoms because I've never thought of seizures being anything more than a loss of complete consciousness and twitching.

I do have headaches quit a bit, some stronger than others, but again I never tried to pinpoint a reason internally. I've always figured they arose from stress or not enough caffeine.

I'm reading that deja vu and jaimas vu are part of seizures? I get intense feelings of dejavu during the day at least once a week. I've woken up at night to extreme jaimas vu; I won't recognize my room and wonder why I'm not at a distant past bedroom, I'll become incredibly terrified, I won't recognize who my husband is next to me, and then the understanding comes. The feeling of fear doesn't leave, but I'll slowly remember who I am again and where I am, and by that time I'm exhausted and pass out again. That was another reason my old therapist thought I was DID.

I did have a provoked seizure once, though the feelings were the same as when I used to 'pass out' as a kid. My mother's friend was helping me move and I asked her for some Tylenol because my back, which is bad, was hurting. When I went to get water, she grabbed them from her bag. I didn't look at them, just trusted her and took them. Unfortunately, she gave me two of her prescription tramadol. They can cause seizures.

It started with feeling very very sick. I ran to the bathroom. My head felt heavy, and the nausea grew to the point I was trying to make myself sick, just to make it stop. Then I started to feel weak and my vision started to black out. I got this sensation that I was dying, that I was doomed to death, and tried to run out of the bathroom. I went down. My husband picked me up and tried to bring me to the bed, but I was already convulsing. He threw me on the bed because I was so stiff. I didn't lose any awareness at all, and that made my fear worse. I remember repeating "I'm not supposed to be awake!" Over and over again.Then it faded. I forced myself to stay awake because I was so afraid to go to sleep, but I eventually went to bed.

I didn't go to the hospital because I didn't want to look like one of the local drug heads or get my mom's friend into trouble for an accident.

That's one of the reasons I assumed all seizures were mainly physical. I didn't think a headache was a sign (unless it was debilitating), or dejavu/jamaisvu, or weird stomach issues, or tingling, or my space outs, etc.

What are your space outs like, if anyone experiences those?

Hi LinaeveStar,

It sounds to me like you may be having deja vu or jamis vu sz. as you mentioned or it could be possible complex partial sz. which I have have had for many yrs.
When I have a complex partial sz. I will start seeing colors of the rainbow flashing back and forth in my eyes then I start to get a nervous feeling in my stomach during this time I am conscious and aware of what's going on, then the next thing that happens is I blank out and I sometimes will smack my lips and wander around not realizing what I am doing but if I am making dinner I will continue cooking and everything is fine I just don't remember. Then I come out of the sz. and I am confused and it takes me a couple of seconds to realize where I am and what has happened. Once in awhile I will get a headache but since I had surgery to reduce my sz. I seldom get headaches and I don't feel tired after the sz.
What you need to start doing is get a calendar and write down what time these possible sz. are happening along with a description of the sz. also write down when you start and stop your monthly cycle because hormones changing each month often will trigger sz. for women. If you have these possible sz. also take note what the weather is like because often a low pressure in the weather can trigger a sz. for many people do to the fact that the air is heavy and that in turn messes up the hormones which trigger sz. As I mentioned to you before have your family Dr. refer you to an Epileptologist and you will find out for sure what's going on and the cause of it.
The main things that can cause epilepsy are the following: sleep disorder, stress, lack of sleep, heart problems, lack of oxygen, difficulties at birth, a bad blow to the head, family genes, a bad scare, bright light and sounds, drug and alcohol abuse. If any of this has happened to you or you can relate to any of this, this may be triggering sz. for you. I wish you the best of luck and May God Bless You!

Sue

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene