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Author Topic: Seizures
Shanna
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So today I went and saw a doctor about the reoccurring fainting that I've been dealing with for the last nine months.

I described all my symptoms from how I can sometimes anticipate when I'm going to faint to how I crash out and sleep for hours after. I talked about how I remain semi-conscious and how cutting back on sugar, eating smaller meals more often, or drinking more water hasn't made any kind of difference. After a very long conversation, she looked at me very calmly and said "I think you're having seizures."

I'm trying not to panic but its not going so well. She took some blood because she needed to check my kidney and liver functions before ordering the MRI and EEG. If those results come back fine, I'll be getting a call to go ahead and make those appointments and contact the neurologist she referred me to. Thank goodness for my parents agreeing to help me financially because I can't even think about how much this is going to cost me. I'm still financially drained from my last hospitalization (still getting billed almost a year later.)

There's no seizure history in my family but the more she started talking to me, the more it made sense. She kept filling in all the gaps. She guessed that I was having headaches, she had a name for why I crash out and sleep for hours after having an episode, and so on. Just an hour ago, I had another incident (probably because I'm stressed out) and I could feel in my gut that she was probably right. I don't have any family in the state so my mom has already started emailing me a list of questions for the doctor. She's worried its caused by diet or my environment. She's half-way convinced herself that my apartment is full of mold or lead or something horrible.

Does anyone here have seizures or know someone who does? Any stories on what it was like being diagnosed and how its affected their life? I know there are a bunch of different kinds of seizures so all situations are unique, but I just need information and reassurance. Knowledge makes me less likely to panic as I wait for my blood work to come back.

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BlackBlade
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My sister had headaches, as well as had trouble keeping food down. Eventually after a biopsy was done they realized her kidneys weren't functioning anymore, and had actually stopped growing a long time ago. The rest of her had continued growing into a women and the kidneys had collapsed under the strain.

The doctor wanted to keep her off dialysis because apparently theres less risk for kidney rejection if one is never on it. A few days later during a hospital visit she had a seizure in the shower and couldn't hit the button to alert the nurse. She eventually was able to get up and walked out of the bathroom and told my mother what had happened. The doctor had her take some other meds and adjust her diet, and sent her home. A day or two later she had another major seizure while she was with my mother and had to be rushed to the hospital where she was in the ICU. She nearly died. They put her on dialysis and while that sucked, the seizures at least stopped because all the poisons in her blood were getting filtered out to an extent.

I don't know anybody who has had to learn to adjust to epilepsy or any other sort of sustained seizures, but fortunately there are lots of medications you can take and things you can do to minimize their effect.

I'm sure it's scary, I imagine it feels a lot like your body is a ticking bomb that could go off at any moment. Don't feel that way. Just take things a day at at time, and work out a plan for adjusting to what may be a minimally invasive thing if properly managed.

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AchillesHeel
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I dont have anything enlightening to say, but I am happy that you have been diagnosed and hope you have a healthy future within the constraints and treatment of your condition.
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Shanna
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No diagnosis yet but its nice to have a direction.

The MRI facility called me so I have an appointment on Wednesday. At the very least, this will hopefully rule out MS (my father, my father's brother, and HIS daughter all have MS).

I'm nervous whether I should say anything to my boss. I've had episodes at work and until now, everyone has thought it was related to low blood sugar. So their reaction has always been to shove candy or juice into me. But I can imagine now how that may not be safe if I am having seizures. I don't know if I should say anything to my boss now or wait until I have an official diagnosis (not sure how quickly we'll be able to schedule the EEG and get me in to see the neurologist.)

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Bella Bee
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quote:
But I can imagine now how that may not be safe if I am having seizures. I don't know if I should say anything to my boss now or wait until I have an official diagnosis (not sure how quickly we'll be able to schedule the EEG and get me in to see the neurologist.)
Well, I'm no expert, but I'd probably tell them if it were me - just in case anything odd happened and they needed to call an ambulance or something. But if you tell them, make sure - really, make sure - that they don't start overreacting or doing stupid things like putting spoons in your mouth.

I used to (sometimes still do) pass out a lot (I don't know why - I just have unpredictable blood pressure changes), and people can do ridiculous things while you're out of it.

Hope everything works out for you and they can tell you what's wrong and how to fix it.

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Samprimary
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Heh. I hope everything goes okay for you, and that it isn't too stressful. These things tend to be a bit of a mindscrew. But just keep reminding yourself that it's better to know what's up!
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DDDaysh
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I have a "seizure like condition" that has never been satisfactorily diagnosed. I've heard different things from different neurologists and been on a ton of medications that never really stopped anything. Heck, the best suggestion that one neurologist had for me was to drink alcohol!

I basically have two separate types of things that can happen to me, but they seem to be related since their frequency waxes and wanes together.

The first type are basically spasms, alot like when people "get a chill". It's like a jolt of electricity runs down my spine and my arms and legs basically fling out and jerk or spasm. I can usually feel one of these "building", it's like a pressure sensation in the back of my neck. If I have time to react and can tense all of my muscles really tight I can usually stop them from flinging too wildly, so it doesn't usually make me fall down if I'm walking, and it's never caused an accident while I was driving or anything. The main problem with these (aside from getting funny looks when I randomly jerk) is that, sometimes, they'll happen in rapid succession, every second or so for several minutes at a time. Once it happened for over an hour! It can make it very hard to breathe and speaking is almost impossible. The longer it goes on, the harder it is to control at all, and the more violent the jerks become.

The second type of episode is really less problematic, but is somewhat scarier. It will usually happen either when I'm close to falling asleep or when I'm trying to wake up. Somehow my brain does something funny to where I'm not actually in control of most of my body, but I CAN react. It's pretty strange. I can even talk, but it's like when I talk or answer in my sleep. The part of my brain that is answering doesn't really respond to my will... it's just crazy.

As I said before, I've been on tons of different medications at one time or another, and nothing really worked. However, since they tend to be stress induced, things do improve when my anxiety is under control, so for a while Paxil was my best friend! I have periods where everything is fine (like now, it's probably been several weeks since I've had any kind of episode), and periods where I feel like my brain is betraying me. In the end though, life goes on and you get used to almost anything. Since these have been happening to me since I was in 1st or 2nd grade, they don't really bother me much unless they're really severe.

I also have a coworker who has epilepsy. She didn't start having seizures until she was in college and didn't realize what was happening at first because they only happened when she was alone (so she always though she'd just passed out). It wasn't until she got her first "real job" (as an auditor with a Big 4 accounting firm) that she had her first seizure in front of other people. She had to try several medications, but they finally found one that worked, and she hasn't had a seizure since I've known her. The worst thing for her was the fact that she couldn't drive until they'd found a medication that worked.

As for what to tell your job, I think you ought to tell them that your doctor is running some tests and think it might be something neurological, but you're not sure yet. Just say that they're pretty sure it's not your blood sugar and that you'll let them know what you find out. That way you stay away from the scary "seizure" word until you actually have information about your specific condition.

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DarkKnight
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I met someone who suffered from seizures and had a service dog with her that was trained to alert her before she would have one.
This could be a lot of things and you should get several opinions

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Tinros
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I had almost those exact symptoms a few years back, and the neurologists couldn't find a single thing wrong. Diagnosis? Severe anxiety. Apparently, panic attacks can take the form of fainting, exhaustion, and severe headaches.
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scholarette
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My sister occasionally has seizures. Her dr wasn't sure why, even though she was so considerate as to do it in the office for him (ok, that wasn't planned). The dr said she faints before she seizes so if she just avoids fainting, she would be fine. while that sounds useless, she has been better at preventing them since then.
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Shanna
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I feel my episodes before they happpen so we were leaning towards blood pressure as the issue because if I sit down, I can breathe through my discomfort.

As for my warning signs, sometimes I'll suddenly realize that I've been staring at my hand and I've forgotten what I was doing. Then I just get this sense of "something's wrong." Other times, someone will ask me a question and part of my brain will know the answer but I can't verbalize it. The tome period from noticing to dropping is anywhere from two seconds to twenty seconds. During my last drop, my friends just remember me saying " Someone help me" and them I was down.

When I'm down, I remain conscious, though a few times I've had to resist the urge to blackout. And I can't move. I feel my limbs, I just can't command them to move. Once, I collapsed in an aisle at the bookstore where I work and because I couldn't speak or move I just had to stare at the ceiling until a customer noticed me on the floor. I was just barely able to nod when he asked if he should get someone to help me. The best way I can describe it is I feel like the guy in Princess Bride when he loses all of his strength.

The worst part is that I hyperventilate when I drop. I know to expect it now so I can resist the urge which helps eliminate that need to surrender to the blackout.

What I'm paying attention to now are the little episodes where I don't drop. If it were a blood pressure issue, it still manages to happen when I'm sitting. Yesterday I was just sitting on my couch when I felt like I was drowning and I even remember calling out for help even though I live alone. I just felt so scared. And today I was sitting around on my lunch break when, in the middle of saying something, I heard all of this Incredibly loud buzzing in my ears and I couldn't say my next word even though my brain was screaming it. It was really quick but it felt like an eternity.

Im calling tomorrow to see if my blood results are back yet so I can call the neurologist. I told my boss and a few close coworkers. They took it well and are going to help keep an eye on me.

I think being sick is stressing me out. I have a history of anxiety but haven't had a panic attack is almost two years. Love my job, love my friends, have a great family. Not much that would stress me to the point of being jelly on the ground.

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CT
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quote:
Originally posted by Tinros:
I had almost those exact symptoms a few years back, and the neurologists couldn't find a single thing wrong. Diagnosis? Severe anxiety. Apparently, panic attacks can take the form of fainting, exhaustion, and severe headaches.

The most common cause of a constellation of symptoms like this turns out to be anxiety, or at least something that isn't caused by heart, muscle, or brain problems but is made worse by stress. Usually there isn't a medication or treatment found to work, other than things which lessen stress and anxiety. It is absolutely amazing what the body and mind can present as signs and symptoms when there isn't something physically treatable underlying the issue. That is reassuring in one way, but it isn't very helpful when you are having to live through it.

That being said, the most important thing is to go through the full gamut of tests, since it can be happening because of a heart, muscle, or brain problem, and it may well be treatable in some way. Because there is only so many ways the body and mind can react, there is naturally overlap between these physical causes and one another, as well as between physical and non-physical causes. You can't assume anything either way until the tests are done -- the symptoms themselves don't provide the answer or even much of an indication of what you will find when you look.

At least a full round of tests can and does rule out all the scary problems. If there are seizures or a heart problem, it will be found. Muscle problems can usually be ruled out without a special test (just physical exam), but the brain and heart stuff needs extra throroughness. And if physical problems are found, they are almost universally treatable in some way.

If physical problems are not found, one is left in the peculiar position of being both glad and not-glad -- glad that there isn't a major problem, but not-glad because one is left without real answers (and yet often there are a lot of people still asking you questions, because it is and was a frightfully scary time). It can be embarrassing, although it shouldn't be. It can be hard to accept at that point, in part because you had to invest so much time and intense energy in trying to figure out a physically treatable cause, and you were counting on getting those answers, somehow, somewhere. But it may be easier to deal with if you know going in that despite how bizarre, intense, or frightening the symptoms may be, the range of possible causes goes all the way from scary to nothing that is physically treatable. And it can be good to keep that in mind as you choose what and what not to share with other people at any given time.

Regardless of what you find out, Shanna, I'm very glad you have a physician involved who is taking you seriously and doing everything necessary to find out what can be done to help. I can't imagine how complicated and difficult this makes your life, and I hope you feel as safe as possible while all this gets sorted out, wherever your diagnostic path takes you.

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