New w/long story

[StaceyCeCe]

Hello,

I have been researching epilepsy with intensity for at least 3 weeks now. Today I finally created a profile because I would love to get some feedback from anyone willing to read my story. I apologize for the length but I tend to be very detailed and thorough. (I'm a "talker" in the real world!) All of your stories have me fairly convinced of what has been going on with me. Fortunately or unfortunately, the doctor has his suspicions but it hasn't been diagnosed yet.


First, I should mention that my younger brother has had epilepsy since he was about 6 months old. I still don't know the details as to why or how he developed it so young. My earliest childhood memories are of my brother (who is fourteen months younger than me) and his grand mal seizures. My sweet little baby brother endured so many of them in his young life. To this day, I get teary eyed at the memory of them. Because of these seizures as a baby and maybe for other reasons that I just don't know, my brother has mental retardation and pervasive developmental disorder. At least, that's what has been told to me and what I grew up understanding.


Almost four weeks ago now, a few days after my 35th birthday, I had a light-headed/dizzy moment at work. I didn't pass out, but I was definitely close to it. It happened a few times in 30 minute period that I went to the doctor but was diagnosed with dehydration. Sounds reasonable, I suppose. (Although I was in air conditioning all day and drinking plenty of water as usual) However, I continued to have a couple more "dizzy" moments over the next few days.


The following week is when the "fainting" began. I am going to just quote from my recent blog posts:


I was at work when I had what I can best describe as a "warm rush" go through me. I felt as though I were going to be sick (I just ate yogurt and a granola bar). I stood up and started walking to the bathroom. I turned a corner and started to see "spots" and the next thing I know, one of my co-workers was saying my name over and over. I was lying on the floor. I had fainted.The only time I have ever fainted was when I was 8 years old and had the German measles. The time after that, I think about ten years ago, was when I had blood drawn for a check up. This was completely random.

I went to the doctor's office that afternoon. The doctor asked a series of questions and did a quick check-up. I've had nausea, some visual disturbances, and at times felt dizzy. At that moment, it sounded as though I had vertigo. At around 5 'o clock that night, while drying off my hands in the bathroom, I had an intense deja vu moment with that "warm rush" flow through me and the next thing I know, I'm laying on the floor with my dog licking my face. I had fainted again. (With a bruise to prove it!) I really wasn't concerned since I trust the doctor. I got online and started reading whatever I could find on vertigo. Not one article or website (of the ones I read) said anything about fainting. I had a pounding headache but figured I would just wait it out until I got back to the doctor's office.

The next morning, I slept in and stayed in bed until the last possible moment. I didn't want to get up and drink coffee like I usually do. I was fearful of dehydrating myself with coffee. I was also so tired. I would have loved to have called in sick but that's not an option these days. I got in the shower and fortunately, something told my husband I shouldn't be in the bathroom by myself. I shampooed and conditioned my hair and something felt off again. My husband came into the room and asked how I was. I was in the middle of another intense moment of deja vu. It was so intense and again, I had what I can best describe as a "firework show" going on over my right eye. I vaguely remember saying "I need to sit down". My husband opened the shower curtain as I was crouching down and fell over. He caught me before my head would have hit the faucet. I came to and was completely shaken and started crying, concerned at what was happening to me.


This can't be vertigo, can it? I was shaking and felt exhausted. I just wanted to lay down and go to sleep. I begrudgingly got ready and my husband drove me to work. At work, I moved ever so slowly. I was nervous of fainting again and there are too many objects I could hurt myself with. In the meantime, my mom called the doctor's office to get an earlier appointment for me. I didn't want to wait a couple of days to get in. The fainting just didn't seem right. I continued to feel woozy all morning and took mini-breaks sitting down for a few moments at a time.

My doctor confirmed that fainting doesn't go with vertigo. He was concerned immediately and had an EKG done. Apparently my blood pressure was really low, too. The EKG came back normal, which the doc said he expected since I was feeling fine walking into the office. He had me wear a heart monitor for 24 hours to see what's going on. He suggested hospitalization for a night but ideally we need to know what's going on when I'm up and about. If I'm just lying in a hospital bed, nothing may happen. I suppose that makes sense. And, truthfully, the thought of spending a night in the hospital didn't sit well. I was fine with wearing the heart monitor.

The heart monitor was removed after 24 hours and my husband went to drop it off on his way to work. Two and a half hours later, it happened again. I was sitting on the couch, searching the internet for fainting causes when I had another intense deja vu feeling that warm rush go through me. I fell over to my left side but wasn't unconscious. I felt sick to my stomach and had a screaming headache. Also, and I forget to document this, I sometimes I have a funky metallic taste in my mouth after. It figures that the heart monitor was removed 2.5 hours prior!

The next day, while at work again, I had another episode. It was another intense deja vu and "firework display". I sat down as soon as I could and as the warm rush flowed through, I just slumped over to my right side. Again, I wasn't completely out. I was semi-conscious and again had the metallic taste and headache. I scheduled an appointment with my doctor for the following morning. He immediately set me up for a hospital stay for tests. I had an EEG, an echocardiogram, and the tilt table test.The EEG and echocardiogram came back normal but the tilt table test is what gave me the diagnosis of vasovagal syncope. I'm just fainting for no apparent reason. Okay, then. (It just didn't sit well with me because I didn't think it made sense.)


So, I was discharged from the hospital a few hours later with some medication to treat the vasovagal syncope, direction to rest for the next few days, and follow up with my doctor in a week. During the week prior to my follow-up, I had a few moments where I felt like my head was twitching or jerking (hard to explain). This may have nothing to do with the fainting but more with feeling stressed? I don't know. I ended up going to the emergency room one morning with a severe panic attack. I'm sure that has nothing to do with the fainting either but more so with the pressure I am feeling at work.

When I did get to the follow-up appointment, my doctor asked if I was taking the medication (I was) and how everything was going. Aside from the panic attack and complete exhaustion daily, I was fine. We talked about my stress with work and getting back to a normal schedule to help my tiredness. I asked him about the deja vu moments I was having. I asked if he thought that was part of a seizure to which he said he suspected that at first. But, that I didn't have the grogginess after coming out of it. He knows the family history with my brother's epileptic seizures and how my brother took awhile to come out of them. He said that was just part of my fainting. He said that the medication to treat the vasovagal would not treat a seizure. However, 2 days later it started again.

After not driving for two weeks in fear of passing out behind the wheel, I was back to taking myself to work. Fortunately, 3 days ago, after a very rough night of sleep (I was up every hour for at least 7 hours) I got out of the shower and asked my husband if he would drive me. Thank God I did. Within ten minutes of being in the car, I had the intense deja vu moment as I was looking out the window. I felt the warm rush and I started saying, "please Jesus, let this pass" over and over. My husband tried to calm me down but apparently I shushed him before I passed out. I woke up to hearing him shout out me to wake up over and over again. I was so tired and my head was screaming. It was so hard to work that day. I moved at a snail's pace and just wanted to lay down and sleep.

I called my doctor's office to leave a message for him about what happened. He called back and asked how long after I had taken my medication had the episode happened. It was about a half an hour later. He said to continue taking the meds but that he would be calling the neurologist. To make an already long story short (I told you I am a talker), a 48 hour ambulatory eeg has been scheduled. I can't have it done for another two weeks because of my work schedule.

When I got home over 8 hours later, while sitting on the couch, it happened yet again. This time, I didn't pass out completely. I just slumped over to my left. Four hours later, while laying in bed and watching some TV with my husband, it happened again! I didn't lose consciousness. I just had the deja vu and warm rush go through me. My head was throbbing as I finally fell asleep.

And that's where I am right now.

Thanks to epilepsy websites and reading community forums, I don't feel so alone with what this is. It sounds to me that I'm experiencing simple partials? Maybe? And when I'm actually losing consciousness, it's a complex partial? Does that sound right? I know I have to wait for the official diagnosis but I'm so frustrated right now. And I'm nervous that the 48 hour ambulatory eeg won't come up with anything since that seems to be the trend right now.

If you made it through this long winded story, I would love to hear your insight.

Thank you,

Stacey :e:

 

[Juli70]

My husband was recently diagnosed with epilepsy. He started having seizures 9 years ago. He would have 1-3/year. We were initially told that they were related to his blood sugar (he's a diabetic) - most likely a sudden drop. He never visited a neurologist to research it further...just always assumed it was his sugar. Then starting the beginning of this year he started having seizures more frequently. By April he was having multiple seizures a day. The symptoms were always the same: He said the room looked smoky and he would get a metallic taste in his mouth. Sometimes he would complain of blurry vision. Then he would slump down if sitting (& fall if standing). Afterwards he always complains of a terrible headache. My husband's initial EEG was negative, but he just finished the 48 hour EEG last week, & we go next week to get the results. Your symptoms sound very similar to my husband's. Of course I'm not a doctor, but based on what you've described it seems to me as if you're experiencing partial seizures. I am sorry to hear about what you are going through...I hope you get a definitive answer soon.

 

[karenb68]

My daughter doesn't always remember aura symptoms, but metallic taste just prior to a seizure is one she has mentioned (she's only had a few as far as we know). And a bad headache every time but one. We're pretty new to this in our family but it does sound like something's going on there. I'll say a prayer for you, I know you must be frightened and frustrated. Hopefully you'll get some advice soon from the neuro. My daughter has had three EEGs in four months and all "normal" so far. Her neuro talked about an ambulatory one, but school starts next Monday so if she's gonna do it we need to do it already.

 

[Cint]

Hi Stacey and welcome,

Sorry to hear of your ordeal but to me it does sound like you're having SP seizures. If you're having that metallic taste in your mouth, that is a common symptom of SP's/CP's as well as the deju vu feeling. I wish you could get to a neurologist and have that ambulatory EEG sooner, though. And they may want to do more testing.

Here is website that describes seizures:

http://www.epilepsy.com/EPILEPSY/Types_seizures

 

[StaceyCeCe]

Thank you all for reading and replying. It is frustrating but I'm trying very hard to keep the faith. I am making an appointment tomorrow morning to see the neurologist my doctor sent my eeg scans to. He is the one who apparently ordered the ambulatory.

I received a call from the office setting up my ambulatory on Thursday. Apparently my insurance denied the authorization stating it is "not a medical necessity". I figure I will just meet with the neurologist prior to the ambulatory to go over everything and see if he can do anything about the "medical necessity" for the insurance.

I have many questions as I had a few "moments" of deja vu the last couple of days. Really brief. But I catch myself staring off. Am I reading into all of this? Is that just me being tired? And why am I so tired? Is that from all of this or is just because I need to get on a better schedule? And I have these little moments of bad memory. Is that just me having too much on my mind or is it from all of this? I felt so bad yesterday when I sent a text message to a co-worker asking a question from last early last week. I had NO memory of the fact that she had called me twice the day before (Friday) and I called her back. I felt (and feel) so stupid! We already talked about it!

I think I am making myself more frustrated because I am reading up on everything and learning of many personal stories of seizures and I still don't know. But, I'm also lucky. It breaks my heart to learn that so many go years without a diagnosis. I feel like I'm a little closer as it all started about a month ago? Or maybe I'm just hopeful?

I'll tell you one thing though, I am just so GRATEFUL. I'm grateful I didn't get behind the wheel to drive to work Wednesday. I'm grateful that I have come across this forum and the one on epilepsy.com. I'm grateful that I am not alone because for a few days I felt a little nutty.

Thank you again.

Stacey

 

[dejavudu]

Oh, my. What a familiar story!

Good luck with getting to the bottom of things.

 

[huskymom]

Hi Stacey, and welcome!! Everyone here is in your corner and happy to help out with whatever you are going to need. :hello:

 

[thoughtiwascured]

Hey Stacey,

So sorry to hear about what you are going through, but hang in there! Your story matches mine to a T.. However, you and your husband must be prepared for much tougher times ahead if you end up matching my story. I started out very similar to you but mine progressed to Gran Mals and with that comes all the fun of not being to drive for 3 months following each, so hopefully the docs can find out what meds will work best for you and keep the seizures under control. My wife has been my rock and you will need support from family and friends to get by at times but whatever you do, don't feel alone. Just log on and read other stories like you are, it really does help.
Take care!

 

[p59]

Stacey,

Hi, I also have the same fuzzy head feelings I expirence these anywhere from a couple times a day to 10 or more in a week. I was diagnosed with TLE 2 years ago. At first the seizures remained the fuzzy/electrical feeling but have progressed into Tonic/Clonic and Atonic Seizures. Your best bet is wait until you get an answer from your neuro and then reshearch and learn all you can.

 

[cjole]

Heh, that's kinda weird, cuz as a kid, when I had those feelings, I just called them the "fuzzy" feeling. I had no other way to explain it to myself or anyone else. It became normal to me and I never thought much about it until 2001/2002 when I had my first grand mal. And even then, did not put much thought into the two being related. Not until just the last year or so, did I even begin to think that they may be. DUH! But it's been a long road, and I still am not sure if it will ever end.

 

[Minkels]

Hi Stacey,

Sorry to hear about your recent troubles...though it does sound like you had a simple partial seizure, especially with the strange taste you experienced and the crashing headache afterwards. I am new to epilepsy too, and though I get the tonic-clonic seizures, they always start out with the partial seizures and seem to generalize into tonic-clonics.

The first one I had was in June of this year...no family history, no brain injury, etc...I'm not a kid...LOL...I just hit 40 back in March so it came as kind of a shock. I was at work, started to feel really odd and dizzy so I sat down in a chair and felt kind of nauseated and saw the strangest wavy lines in my vision and tasted something very salty. At first I didn't know what was going on.

I'm glad to hear that you are researching epilepsy because it is scary at first and I was pretty much in denial when I had the first bout of seizures at work...I fought them when they were loading me onto the stretcher to haul me away in the ambulance (normally I am really not comabtive).

You could be having what are called "drop seizures" where you lose consciousness, but do not have the muscle contractions that are characteristic of the tonic clonic variety.

And yes, it's TOTALLY normal to feel exhausted and only want to sleep after a round of seizures (or even just one). I had two seizures the first time, and ended up sleeping for 16 hours after them and still felt tired for a couple of days after them.

I hope that your doctor's visit goes well. There are many medications out there, and while they take some adjusting to, they have helped me get my life back and I can live with the side effects better than I can with the seizures. Good luck and let us know how things work out for you.

 

[foul ball]

Hello Stacey.

I have had the same deja vu feelings that you've discribed thousands of times durning my life. They start with a strange sensation and than a very strong deju vu moment. When finished, I am somewhat confused and do get the headaches. I've had these episodes all my life, but wasn't diagnosed until I was in my 30's. My episodes (dizzy spells-as I refered to them when I was young) led to grand mal seizures. Medication has stopped almost all of the epidodes. On a strange note, the sensations feel somewhat good?

Please see a neurologist and get properly diagnosed, and treatment.

Take care of yourself
foul ball

 

[StaceyCeCe]

Hi everyone,

I guess I should update although there hasn't been anything really new. The ambulatory eeg was never approved by my insurance. I quit my job which definitely helped alleviate some stress. My new position is a much better fit in that department. I've noticed a trend in my "episodes" up until yesterday. It appears that a string of them seems to happen the week leading to my menstrual cycle (sorry for the TMI, guys). However, I had a couple yesterday which throws that off. I had spoken to my doctor about 2 weeks ago to share what I thought was the common thread. He wants me to see my neurologist in November to follow up. My new insurance doesn't kick in until December and I'm hoping I can get that ambulatory done.

I will post a separate thread about one of the episodes I had yesterday. It was really bizarre and frankly a little scary. I went to bed and woke up with a screaming headache last night. I'm grateful I'm able to work from home today as I am just exhausted. I'm assuming it's related to yesterday's episodes.

Thanks for the warm welcome!

 

[Endless]

Hi, Stacey,

Your seizures were bizarre? We must belong to the same club - temporal lobe epilepsy. Can't wait to hear about it.

 

[StaceyCeCe]

Ha.

Everything I read on temporal lobe epilepsy fits me. Especially the long ramblings! Seriously, I am a talker! So much so that at times, I annoy myself! :roflmao: