New here!! and New to seizures!

[mgvallyaly]

Hello!! I came across these forums and they seemed like a good place to find...what I am looking for. Whatever that may be.

I can't quite say exactly when these "episodes" began. I do know that back in march of this year I went to my pdoc because I had a bad reaction to wellbutrin. It was similar to brain zaps, only it was different, if that makes sense. It was much worse. There were several doctors in there and they asked me if I had a history of seizures, and I told them no as far as I was aware. So they prescribed me meclizine and had me DC the wellbutrin.

After that, occassionally I noticed that I would have really strong chills and it didn't really matter the temperature outside. this lasted for months. I only took the meclizine long enough for the wellbutrin to leave my system btw. These chills, or cold shivers though, they even came during the heat of the summer. If there was a slight breeze in the morning, or while i was in the shade, there they were. It was not until a couple of weeks ago that I started to realize that they messed with my eyes and my vision where typical chills do not, and these also happen while I am driving...

I began taking notes and journaling. I suspected seizures. My shoulders, neck and head would tense and jerk then here came the cold shivers along with the eye rolling and the eye lid flutter. If I was in a cold vehicle, say on a road trip with my husband at night then there was a couple of times where I had 5 AND 6 back to back lasting about 3-5 seconds a piece. Afterward it was hard to stay awake, I needed to sleep.

Cold is definitely my trigger, or at least one of them.

***I also zone out, or do/did a lot of automatic driving/behavior if that is relevant to this. and my arms are starting to jerk during some of my stronger episodes. this is new.*******

Now for postictal ??? effects, i had an episode yesterday and today that left me feeling very hungover. This is new to me. A new development. Do seizures progress like that?

I ended up with a headache on the back of the right side of my head, nausea, and a deep need for sleep... that was yesterday.

today included all of that along with vomiting...

I go next week for an eeg, mri with contrast, consultation for a sleep study.

My pcp said he could think of 3 possibilities, seizures, migraines, narcolepsy

what do you guys think?

 

[mgvallyaly]

Do these even sound like seizures?

 

[acshuman]

Is This A Seizure?

mgvallyaly,
The way that a seizure may show itself for a person is almost endless! This is because of the billions of cells in a person's brain and the unlimited connections that these cells may attempt to make. Each of these connections(if irregular) can result in a different out-of-the-ordinary reaction by the body. This doesn't have to be muscular. It can take place in any of the senses that a human has(smell, sight, hearing, touching, tasting etc.). this is what makes it difficult for doctors to make a final diagnosis w/o doing a complete battery of tests to get as much information as they can get!
This all takes time and this time can be something that may make you worry about the results, but you have to keep your head up and be strong waiting for that diagnosis.
Impatience is a bad enemy of a person who is being diagnosed or a person w/E! :twocents:
! ! ! BY THE WAY, WELCOME TO CWE ! ! !

acshuman

 

[Cint]

Welcome mgvallyyaly,

A lot of what you describe could be seizure(s) or as your dr. says, it could be migraines, narcolepsy, or a multitude of other things. It could also be hypoglycemia, diabetes, or other things. So like acshuman said, it takes patience to be correctly diagnosed.

What caught my attention was you mentioning the chills and blurry vision. Both are symptoms of Type 1 Diabetes. And if left untreated, it could cause seizure-like symptoms. I have Diabetes AND E, so I do know. When first diagnosed with Diabetes, I thought I was going blind and got chills, and wanted to sleep ALL the time.

Good luck!

 

[mgvallyaly]

Thank you both for your responses!! I am trying to be patient. I'm not quite as anxious as I would normally be, but as time passes, I think I am growing a bit more so bit by bit.

I do keep track of my blood sugar and it has always been within normal range so I doubt it would be diabetes, but you never know! Something could always sneak in there. My vision wasn't necessarily blurry as much as my eyes were rolling into my head, and my eyelids were fluttering. I AM sleepy a lot though. I'm usually good until I have an "episode" and then I must have a nap. I'll either sleep for a little while or hours at a time, depending on what my children or the husband allow.

As I said though, I'll hopefully start finding something out next week! The anticipation is the toughest part. That, and just plain not knowing what is going on and wondering when it will strike next I suppose, but I've learned to just take it one day at a time.

Thank you again for your responses.

 

[ln1]

Welcome mgvallyaly,

Cint and acshuman already made good points, so I won't repeat. I will say I see similarities between some of your symptoms and mine. I've been diagnosed with epilepsy and migraines and sometimes the symptoms overlap so much that I can't tell which is occurring. So, unfortunately it could be one...the other...or a combination.

In any case, I wish you the best with your testing and getting the answers needed to help control things.

Many people on this forum are very helpful and don't make you feel like any question is silly, so feel free to drop in anytime.

 

[valeriedl]

I have many of the same things happen, some are due to seizures and others side effects of meds.

My seizures usually complex partial that last about five minutes, I completely black out during them and don't know I've had them. I have simple partial seizures too that will last a few minutes. During these ones I don't black out but things just don't seem right - the furniture in the house might look like it's in the wrong spot, I could hear people talking who aren't there and other goofy things like that. Everyone has different things happen during their seizures. People can have seizures that last much less of a time and others have ones that will last longer.

After most of my seizures I'll have a bad headache, usually only the complex partial, and I'm very tired and have to sleep. Sometimes I'm still tired the next day and have to sleep too.

Many seizure triggers are not getting enough sleep, caffeine and stress. I don't know if any of these things have been going on with you?

I'm not on the same meds as you but some of the side effects I have that are similar to yours are body jerks (it's usually in my arms and shoulders), eye fluttering (mine is my eyeballs not my eye lids) and being tired.

I don't know if you are still taking the meclizine or how long you've been off of it if you're not taking it any more but here's a link for info about the name brand is Antivert, the name brand for meclizine.

http://www.rxlist.com/antivert-side-effects-drug-center.htm

Nice to meet you!

 

[mgvallyaly]

I have noticed that everyone's experiences are so very different. It seems like..not a single one is the same as another really.

Valeriedl, I usually fall asleep early at night, at around 8 or 9 at the latest, sometimes earlier, rarely later. Then for some reason, like clockwork, I will wake up at 2:30am pretty much every morning, and fall back to sleep. Sometimes I will wake up every hour on the hour. I try to save ambien for when I really need it, I prefer not to take it every night, but I will wake up on nights I take it, so I guess my sleep is broken.

I get up about 4-6am every morning and go to drink coffee with my inlaws. How much I drink just depends on how I feel. Some mornings I feel great and I can drink about 4-5 cups of coffee, but some mornings I wake up feeling groggy and just all around blah and after 2-3 cups of coffee i start feeling nauseated.

The eye movement is eyelids AND eyeballs, it is really strange feeling. I'm sure it is even stranger looking.

I am no longer taking meclizine. I only took it long enough for the wellbutrin to leave my system so i could function again, then I no longer needed it, and that was back in March I think???

******
One thing I was curious about, back in June, I was involved in a car accident. (no one was injured) I was sent off to go camping solo (I'm bipolar, apparently my hubby thought I needed to cool it lol) Anyways, I got about 6 hours of sleep. It was fitful and restless. The next morning, I packed up and drove home which was about 2 1/2 hours away, I would stop periodically to try and stretch to wake myself up.

The last thing I remember before things got out of hand was passing a particular sign several miles back. After that, I remember jerking my head up seeing stopped cars and swerving to miss them all. I do not remember any of the miles in between there and when I saw that sign.

I guess my question is, could this be related? did I just strictly sleep while driving those miles? I know I do a LOT of automatic driving and never realize it until i am snapping out of it. And I know there are a lot of grey areas in this stuff.

 

[ln1]

It could be related. Something similar happened to me where I woke up feeling "off". I was tired and kind of felt like it was going to be a bad day, allergy-wise. I went about my day and as I was driving home, I remember driving at a particular point on the street. The next thing I knew, I had hit a curb and my tire had blown out. I have no recollection of what happened between driving on that particular point on the street and hitting the curb. After describing things to my neuro, she concluded I had a seizure.

 

[Cint]

I have noticed that everyone's experiences are so very different. It seems like..not a single one is the same as another really.

:agree: No two are the same. That is why docs have a difficult time diagnosing.

******

One thing I was curious about, back in June, I was involved in a car accident. (no one was injured) I was sent off to go camping solo (I'm bipolar, apparently my hubby thought I needed to cool it lol) Anyways, I got about 6 hours of sleep. It was fitful and restless. The next morning, I packed up and drove home which was about 2 1/2 hours away, I would stop periodically to try and stretch to wake myself up.

One thing to keep in mind is that mood disorders and E often go hand in hand. Some of the meds used to treat bipolar are the same meds used to treat E.

The last thing I remember before things got out of hand was passing a particular sign several miles back. After that, I remember jerking my head up seeing stopped cars and swerving to miss them all. I do not remember any of the miles in between there and when I saw that sign.

I guess my question is, could this be related? did I just strictly sleep while driving those miles? I know I do a LOT of automatic driving and never realize it until i am snapping out of it. And I know there are a lot of grey areas in this stuff.

This could be related, especially if this is TLE. Memory is often disrupted, even forgotten, while having a Complex Partial seizure. And then there is the movements called 'automatisms', where folks perform needless actions they don't remember.

Here is more info:
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures

These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person's eyes are open and they may make movements that seem to have a purpose, in reality "nobody's home." If the symptoms are subtle, other people may think the person is just daydreaming.

Some people can have seizures of this kind without realizing anything has happened. The seizure can wipe out memories of events just before or after it.

Some of these seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure.

Then the person loses awareness and stares blankly.

Most people move their mouth, pick at the air or their clothing, or perform other purposeless actions. These movements are called "automatisms" (aw-TOM-ah-TIZ-ums).

And for more info on Moods and E:
http://www.epilepsy.com/learn/impact/moods-and-behavior
http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced/anxiety-disorders