[PurpleFlyingMonkeys]

I posted this on a seizure forum but wanted to bring it here to PC since I've been a long time member (on occasion MIA) and trust everyone here more than other sites I do not know.

Really I'm just having a hard day. Some days my faith gets me through the day, other days I wonder, if it really is what I'm destined to have, if it is a part of me and always has been and always will be for some reason or another. I just need to talk about it I guess, with people who understand, no one I currently know understands what it's like... The uncertainty and the dependence, and it's hard for them to understand why I feel the way I do. Here is the post from the other site (copied and pasted)

"So I'm new here and new to this. Let me start out by saying I have not been diagnosed with epilepsy just yet. And please bear with me while I go over an extensive history here...

I grew up in a dysfunctional family. Quite a bit of abuse in my childhood. And some bad abuse as well. I've also always had blackouts so long as I can remember. So needless to say, the doctors attributed my blackouts to a dissociative disorder. A couple psychiatrists throughout my life have said they believed that my blackouts could have been seizure related but they were not neurologists nor did they know anything about it, and I never followed up with a neurologist. I always assumed seizures were the grand mal type and that's it.

So fast forward to 2009, I was at work on my first day. I had been standing for quite a bit when everything started seeming far away and going black. The next thing I know I can hear muffled voices. I eventually came to and it took a good 5 minutes or so before I could hear or understand what anyone was saying. I was vomiting uncontrollably and had a horrible headache. I ended up vomiting all overmyself so I went home to change. I was so incredibly tired so I took a nap at home before I went to the hospital a few hours later. At the hospital we called my work to find out what happened. They said I just collapsed. The doctors said I fainted. Then comes the summer of 2011. I was with my fiance and my friends when I got up to use the restroom. When I went back into the living room to sit down and when I went to sit down everything went black.

The next thing I know I'm on the floor with muffled voices all around. I can't hear or see at first and eventually the hearing and vision came back. I started vomiting instantly and got really tired. Everyone was freaking out. My fiance was hysterical crying. Apparently when I went to sit down I flopped down. It was dark and my fiance didn't see at first but he knows I have an issue with my stomach and he noticed my shirt was pulled up near my bra. He tried to get my attention to see why I wasn't pulling my shirt down and I didn't respond. They ran and turned the lights on and I was all twisted and my eyes in the back of my head. After a minute I started shaking uncontrollably and fell off the couch shaking. He said after the shaking I collapsed and went limp. After a minute of being limp I started shaking again and my body started twisting. I went limp again before I finally came out of it.

For the following few days I kept having mini episodes. Everything seemed like it went far away and I'd lose consciousness for 20-60 seconds. My fiance said I would roll my eyes into the back of my head or my eyes would dart around and I wouldn't respond.

Then everything calmed and stopped. Everything seemed to go back to normal until May of 2012. I had gotten up for work and my fiance was driving me to work in the morning. We were still on our road when everything started seeming far away. In an effort to not blackout I tried to talk and could barely get out "Pretty stars" (it was early in the morning). My whole body started tingling really bad and I got this bad pressure in my head. Next thing I know I'm far down the road and my fiance is yelling my name, all muffled again of course. Apparently I collapsed into his lap and didn't move or respond. He was driving holding me up so he could find a place to pull over. I came out with ears ringing, pain in my neck and vomiting out the car window while we drove to the hospital.

They said that was a seizure. They said the one at the friends and the ones following the friends were seizures. But at the time I did not have medical. It was $300 to see a neurologist and all the neurologist said was "come back if it happens again". I'm on no medication. But thankfully I haven't had another episode since May 2012. Now I have insurance but they don't want to cover "past medical conditions" so I have no idea where to go from here. It doesn't seem like they happen all the time, just every once in a while. I don't get them regularly but when I look back on my past blackouts there are so many similarities.

Like almost 5 years ago. I was sitting on the couch watching TV when I blacked out. The next thing I know I'm in the bathroom vomiting. I don't know how I got there but I had a horrible headache. I have flash memories of that day but it lasted hours. I kept coming to in different places vomiting and with a horrible headache. I was all groggy and out of it coming to as well. I went to the hospital. I don't know what happened there as I only have flashes. They didn't run any tests or anything, an ambulance picked me up and put an oxygen mask on me and I had a vomit bag because I kept vomiting. But I don't know what happened at all at the hospital or even before the hospital. But going into these blackouts and coming out of them always seem the same as the seizures I had. So I may have been having seizures all along like my psychiatrists long ago said they believed.

So now I'm just waiting. To see if it happens again, if or when. I cant drive for at least two more years because of the last one in May. I can't work full time any more because of the fear of having one at work has severely effected my anxiety going anywhere. I'm along a lot and it's just very unsettling. Another instance, about a year ago I was starting to cook lunch. I came to sit on the couch while it heated up and everything got far away again and the next thing I know everything seemed muffled. I could barely hear my dog barking in the background and eventually was able to hear the smoke detectors going off. The house was full of smoke. I don't know how long I was out but the food was black. My dog passed away since that time but he was always really good at telling when episodes were about to start or when it was happening. He's bark every time and growl at me. I miss that dog, it became a comfort to know I had an alert system.

So here I am, waiting and wondering if it will ever happen again, without medication, without doctors, just waiting.

Sorry for writing so much and not really saying anything but I don't know anyone who has had an experience with seizures, I have known some people in the past before I knew about the seizures but have since lost contact so I have no one to talk to about this, and how afraid I am, no one who knows at least what it's like to go through this. Thank you for taking the time to read and listen."

I have been diagnosed with epilepsy. I suffer from partial complex seizures (petite mal). I know that, during seizures, people with full complex seizures (gran mal) will foam at the mouth. I am not familiar with seizures where people vomit.

If you have not been diagnosed or treated for epilepsy previously then your insurance should cover it. DO NOT HESITATE. MAKE AN APPOINTMENT FOR TESTING IMMEDIATELY.

Seizures can be induced by several things or nothing at all. You should never drink alcohol as it can lead to seizures. A diet high in protein and fats helps. You should lessen your consumption of simple sugars like candy, white pasta, etc. Blinking lights or looking into lights - including the sun - can also cause seizures. Coming off an alcoholic drinking binge can cause seizures. You should always get a good nights sleep.

There are medications that can lessen your seizure risk. I take Depakote. By seeing an MD, you can have these meds prescribed. Please call an MD immediately and keep us informed.

[shezbut]

(((PFM)))

I do recall talking with you before about these incidents ~ at the time, the doc's were still questioning whether or not they were sz's.

You do need to be medically treated, whether you sz's are coming once a month or twice per year. Trust me, as a woman who suffered long untreated epilepsy, it can easily lead to permanent brain damage. I am not trying to scare you, I'm just telling you my experience to motivate you to get some help before you suffer irreparable damage.

You don't need to be actively seizing to get an EEG done and be put onto preventative medications. Trust me, it's awfully rare, that our first med and dosage does the trick for us. So, get the ball rolling now. Don't sit around and wait for your next seizure to come before going into the doctor for help.

Before you go into see the neuro, write down all of the facts. Dates and full descriptions of sz activity, auras, after-effects, etc. Be clear with what you've tried.

I wish you the very best!!

[PurpleFlyingMonkeys]

I should make an appointment, I've tried but it's a pain in the neck working with these in network doctors. I'll also have to pay a big chunk of money for the EEG.

My boss also gave me a form at work Tuesday saying she needed it filled out as soon as possible. Our insurance changed and I had to pick my new plan. She gave it to me Tuesday but the form said it had to be returned by Feb 28th, if my insurance has been cancelled I'm gonna go ape crazy on them.

Anyways, when I went to the neurologist from the first seizure he literally said he didn't want to break the bank with a CT scan and to go back if I had another seizure. I was seeing my regular doctor at the time, a therapist and a pdoc and they all said they didn't think I would have another. Then I had another. And again they all said they didn't think I would have another. My primary care doc said he thought it was migraines causing my blackouts and the seizures and kept trying to give me lithium for some reason, and lithium made me crazy. Bad. My pdoc kept trying to give me antidepressants and I told her from the get go that anti depressants have always made me depressed. She also kept giving me a medication that says can worsen seizures.

So I stopped seeing them. I also stopped seeing my t because I felt like he was more concerned over the possibility of DID than the seizures. He thought the seizures were DID related and for a while there I thought they might have been too. He had me almost convinced that my only issue was DID. He never let it go either. I'd try to discuss things that were really upsetting me that day and he'd say "We can't always have small talk here, eventually we're going to have to get into the DID stuff" and would make me feel really pressured by saying things like "I'm not trying to pressure you but if we don't get through to your parts soon we're going to have to start moving into the schizophrenia or psychotic field" so I stopped seeing him.

The neuro just got too expensive. My first appointment to see him was only $150 but every appointment after that was $300 down. He was also a lousy doctor and all the doctors I've met have low opinions of the neuro I saw. There are 2 other neuros in town, but I'll need a referral from my primary doc (which I haven't established yet) to get me in to a neuro.

My insurance change sucks too, the prices were raised but the quality went down. My co pays and deductibles are almost double what they were on some areas.

I'm also kind of afraid of the EEG. I've been waiting 2 years already to get my license back and still have another two years to go. If I have an EEG and it induces a seizure, will they suspend my license from that seizure?

A thing that really worries me is an article I read online. Someone who has one seizure is not very likely to have another but if they have two seizures they are like 75% more likely to continue having them. I've had two confirmed seizures and a lot from my past that seem to follow the same routine as the two confirmed seizures.

I'm sorry I just don't want this. I want to go back to the day where I thought I was just dissociating when things were too much. I want to go back to thinking it's mental and not physically something wrong. It's scary and I feel like my own body is attacking me. It's a whole other way of feeling victimized. At least in most cases when I am being attacked now, I can run away from the attacker, but with the seizures, I can't run away from it, I'm being attacked from the inside is pretty much how I feel.

And it doesn't help that my uncle was telling me that my cousin had seizures as a child and it almost killed her. Doesn't help at all. I also have a fear of medication, especially new medication. To go on medication for this really scares me.

Since they gave me ativan immediately after my last seizure and the hospital told me that it helped to stop seizures, they gave me a perscription for it too. I still have them and carry them with me in case it were to happen again I could take it. I wonder if I could take it before hand too and if that would reduce the actual seizure? I only feel slightly comfortable with taking that and only because I've been on it before.

I do need to talk to a doctor about this though. I've been self medicating (even though I was given the ativan and don't even take them) once or twice a day I use a small ammount of medical marijuanna to help with this. I was a user before because I liked it but stopped after the second seizure and just started again last week. But I don't use regularly and not like I did. My intent is not to ever get high, especially since getting high peaks my anxiety, I use to protect myself from seizures, and I use a minimal ammount. But I don't want to keep doing that because it's illegal. I think it should be legallized but I have a clean record, I don't want anything to taint that. But until I get some answers for the seizures I am using the medical kind (which btw is super expensive oh my goodness!) for this.

But I will call my doctor today to make an appointment and hopefully get the ball rolling. I'll need to sit down and write out a long list of all my blackouts and try to remember what happened leading up to them and after them, since the more I think about them the more similar they seem to the seizures I had.

The longest I went without an episode was two years, the first two years my fiance and I were dating. So hopefully I can go at least another 6 months, enough time to get this sorted with the doctor.

But my fiance is convinced I had these seizures because I was on the Mirena. I thought so to for a while, until I started examining my history in blackouts. He's still convinced and thinks that the more thought I put into the seizures, the more likely it will happen again. He thinks I should just forget about it and move on with my life. Boy do I wish I could! But the uncertainty of it has really gotten to me.

Well I'm off to make an appointment with my primary doctor. Wish me luck, I haven't met her before so we'll see how she is :/

[avlady]

Good Luck!!! I was diagnosed with seizures after an accident I was in, i would get petit mal seizures. I got them for years, had to go to day treatment as I chose to be watched for results of meds. Then in 2007 I had 3 grand mal seizures, at the hospital, as i was also in for a med change. Finally the docs got me on Depacote and I've been fine for up until now. One of the nurses told me i was pronounced dead 3 times each time after each seizure. I don't remember the seizures, but when we were going out for a smoke at ciggarrette time everyone was looking at me and i said what is everybody looking at me for? The people said You don't remember? They had to tell me what happened to me. they told me i was shaking and my eyes were rolling in my head and i was foaming at the mouth. Then I ended up in the ER room and didn't remember that too. I've been on anti seizure meds for 3 years now and havn't had one since. PLEASE GO AND GET CHECKED FOR SEIZURES, don't worry about your licence, you could kill someone on the road next time it happens.

[PurpleFlyingMonkeys]

I made an appointment for the neurologist for Thursday, only problem with that is that I can't drive and my fiance works on Thursdays. I don't have many family members here so I don't know how I will get there, no bus or anything. We have cabs but that's gonna be pretty costly and I'm down to working two days a week, just so I can pay for my insurance. I'll find a way thought. I also have an appointment on the second with a new primary care doctor and to have a pap smear done. Haven't had one of those in a few years, like 3 years I think, maybe 4.

I'm nervous about this whole ordeal. I don't want to be told I have seizures or be diagnosed with epilepsy. I don't want to be on medication that could make them worse.

I just want it to go away and go back to thinking I don't have them. I never would have thought I'd have any seizures, I've seen someone have seizures and my heart broke for them, I cried for them, I never thought I'd be on the other end of it.

My fingers are still crossed that the seizures I had were freak incidences or maybe they were stress induced seizures which are not as dangerous and can be healed with therapy. A pdoc I saw years ago said he thought I'd gotten seizures from an accident when I was a child. I hit my head but no one ever took me to the doctor. I started getting migraines after that. I didn't see the doc because my injury was minimal since my brother had his eye lid split open in the accident.

My blackouts started that same year as I recall. So the pdoc believed it was the accident, however the trauma from my childhood peaked that year as well so some believe it's a DD.

I just want to be normal, I know those with epilepsy are normal and can lead normal or close to normal lives, but with my generalized anxiety disorder, it seems impossible to ever feel normal again if I continue to have seizures.

[PurpleFlyingMonkeys]

My appointment is tomorrow, I'm really nervous.

It'd be nice if all this just went away and I was fine. I don't like this.

[shezbut]

I hope that your appointment goes well for you tomarrow.

That your questions get answered ~ you get listened to, asked key Q's that shed light onto your case more clearly, and tests are done for proper diagnosis and treatment to finally begin for you. You have been waiting and worrying for SO long ~ you really do deserve to have this issue resolved as much as possible!

I'll be thinking about you. Let us know how the appointment goes, okay?

[PurpleFlyingMonkeys]

I just got back. I'm a mixture of feelings right now.

I've been diagnosed as DID and DDNOS by many doctors but there have been occassional psychiatrists that said they believed they were seizures, I never believed it, I figured if they were seizures I would have known.

So the bad news is that the neuro said he really believes they were seizures (and not psuedoseizures like my t thought) and that he thinks I may have epilepsy. So he's ordered an EEG for me for next Thursday. Even if it shows nothing he said he still wont rule out epilepsy just yet.

There are other tests if the EEG doesn't show that he wants to do but we're taking it one step at a time. I'm happy to finally get a EEG, I haven't been able to get one because I didn't have insurance and it would have been a couple thousand. But with my insurance it's only going to be $35 they said. Phew to that!

The good news (besides finally being able to get the EEG)... At the hospital they told me my license would be suspended for 3 years following my last seizure. So I wasn't going to be able to get my license back until May 2015! But the neuro said that's false, it's only one year!!! May will mark one year! I haven't had my license in two years already, it sucked thinking about another 2 years! But he did say he wouldn't feel comfortable with me driving even at the year mark until we figure out what is causing the seizures and get me on medication if I need it.

So even if I have to wait another 6 months, it sure as heck beats waiting 2 years! But I'm not comfortable with driving either. Not just yet at least. Like him, not until I find out what has been causing the seizures.

25 years old and may be diagnosed with epilepsy! That's so not right! It's just not fair. But what in life is fair?

I may be driving soon though, I'll try to focus on the positive!