Anyone who has simple partial seizures?

[girlwithadog]

So it's been a while but I'm back. I got married and went on my honeymoon, lost my job and medical insurance, got my drivers license back and well a lot of ups and one down (the insurance.... I didn't want my job anyways, horrible people) This post is longer than I planned so if you don't want to read all of this please skip past the sectioned off part below and read the last couple paragraphs

*********************************************************
If you have read my posts before you knew I was reluctant to start my medication when I got diagnosed at the end of March. I kept putting it off and putting it off. Eventually I decided I would make the decision after I talked to my neurologist and not the nurse practitioner who gave me the diagnosis. A week after the wedding I met with my neurologist with 2 pages full of questions. I put an * by the important questions regarding my seizures and the medication.

I asked him the questions and didn't get many answers. He couldn't tell me what kind of seizures or where they were coming from, he couldn't tell me much about the medication and when I gave him lists of my possible symptoms for the simple partials he said he thought I might be having, he couldn't tell me if they were or not or even if they sounded like they were seizures. He just shrugged them off.

I had a visual distortion during the EEG and I asked him if that was what confirmed the diagnosis and if that was linked to the seizures and he said he didn't know. He said from just the EEG alone he wouldn't give someone medication if they had seizure activity but since I had my unprovoked seizure in May he's certain I have epilepsy but ultimately it was up to me if I wanted to take the medication or not. I decided not to. I have strong faith and I'm relying on my faith to keep me safe while I figure out what move to take next. I may take medication eventually but I want to be more informed before I make that commitment and I want a doctor who can give me more than "Maybe, I don't know" I need answers.

But we only have two neurologists in town, the other one is worse than this one so it looks like I'll be travelling out of town to get another opinion. Either way that may not be for a while so I'm here to ask a question...

*********************************************************
For those of you who have simple partials, I know they vary from person to person but could you share what you experience during these? Could you share your pre seizure and post seizure symptoms as well?

I've had varying symptoms and around the time of my drop seizure in May I had much more severe symptoms but they all stopped when I had the Mirena taken out, the more severe episodes at least. Currently my mini episodes are

*Out of the blue panic attack sensations, nothing I'm afraid of just the general feeling of a panic attack
*Visual distortions (but I can make this happen to a degree, typically it just happens though)
*A kind of surreal feeling that lasts for only approximately 5-15 seconds
*Shortness of breath that accompanies many of the above.
*Head heaviness that comes up randomly and your eyes feel like they want to roll around in your head (not that common but does happen every once in a while)
*Warm tingling feelings in my body, typically not associated with the above symptoms although occassionally is followed by the surreal feeling

I think these may be some form of anxiety instead of seizures but for the last few months this is all I really experience. I know I should and will be bringing this up with a neuro but for the time being, has anyone experienced this in relation to a seizure?

Thank you for any input

 

[skyfire322]

First off congratulations on the wedding!

I have simple partials sometimes. I, like you, get certain symptoms such as the warm tingles. It starts off with deja vu, then warm tingles... I will go from crying my eyes out to laughing hysterically, to screaming at the top of my lungs within the span of a minute. I'll see colors that usually aren't there (yellow walls look blue, red carpet looks green, etc.). Although I never have taken it, it's like a night terror meets an acid trip.

 

[girlwithadog]

Thank you for the congrats
My husband always says he thinks my mom took acid when she was pregnant and I'm on this constant trip, even though I don't always see things and not often don't but it does happen quite a bit. It's odd actually because the one time I did try acid (I'm not a drug user but did some experimenting in my day) not too much changed from the average me, the distortions just kind of happened more than normal. I just don't know how I can make it happen since I'm assuming you can't make a seizure happen? I can't always make it happen but can at least 1/2 the time which makes me wonder just what is going on.
I hate that warm tingly feeling so much because it was one of the last things I remember before my drop seizure, got all dizzy and the far away feeling (thankfully I haven't had the far away feeling since that day) then it was hard to talk so I put my seat back and that's when the clammy feeling took over followed by the tingles that were intense and the next thing I know my husbands snapping me out of the seizure and I start vomiting. I hate that tingly feeling and I always panic and think it's a sign I'm about to have another seizure but I haven't had one where I lost consciousness since May 2012 thankfully

I'm sorry yours are so scary, that must really suck. Typically my episodes are confusion episodes or panic episodes. I couldn't imagine going through all of those emotions

 

[Nakamova]

All of the symptoms you list can be simple partials. I know it can be tough to distinguish them from anxiety in some cases, but visual distortions and the surreal feeling suggest that something neurological is going on (rather than emotional with autonomic features.). I'm sure folks will chime in, but in the meantime you may want to check out these threads:
http://www.coping-with-epilepsy.com/forums/f20/simple-partial-seizures-10930/
http://www.coping-with-epilepsy.com/forums/f23/new-simple-partial-seizures-12093/
http://www.coping-with-epilepsy.com...who-have-simple-partial-seizures-auras-15293/
http://www.coping-with-epilepsy.com...d-question-but-simple-partial-seizures-14265/
http://www.coping-with-epilepsy.com/forums/f27/simple-partial-seizures-epilepsy-4858/
http://www.coping-with-epilepsy.com/forums/f20/these-simple-partial-seizures-5955/

 

[RunningGirl85]

I have mostly simple partial with the very occasional T/C. Mine also usually start with deja vu then the warm tingling feeling, and then probably some nausea/rising stomach. Sometimes it goes further and I start feeling all fuzzy-headed, and things become sort of distorted around me. Not visually, but how I process stuff (sounds are more amplified, but I don't feel like I'm actually there)... I guess that would be the surreal feeling you were talking about.

Post-seizure (simple partial), I feel... off. I don't know how to explain it. It's like a "whoa" feeling... Or, as if I am coming out of something, like if you are suddenly aware of other things around you that you didn't notice before, and then I might take a second or two to respond to a question/get words out properly. And usually they stop there.

Oh, and I also get the panicked feeling... telling my neurologist that was a mistake, though, because now he assumes the panic is like a panic attack... even though I am only afraid of waking up on an ambulance, not actually afraid of anything else.

 

[toro]

I've got TLE and these sound like simple partial seizures, not simple anxiety attacks, although there is a very high correlation between those with epilepsy and anxiety/panic attack sufferers.(Cascino & Sirven, 2011)

Even when you just experience intense de ja vu or a word on the tip of your tongue, that's probably a seizure. After enough experience you can tell the difference between a typical de ja vu episode and a SP, but it takes some time.

A good point of reference is the ictal (I) and post-ictal (PI) phases (during and after the seizure)

Some of my symptoms:
1. Fugue-like state (I, PI)
2. Tip-of-the-tongue (I, PI)
3. De ja vu (I)
4. Jamais Vu (I)
5. Indistinct memories (I)
6. Dreams while conscious/awake (I)
7. Repetitve recollections (song refrains, verbal exchanges, etc.) x15 or so (I)
8. Triggered feelings (I)
9. Anxiety and unfamiliarity with nearby objects (I, PI)
10. Odd familiarity with memories/thoughts (I)
11. Fictitious smells (I)
12. Inability to read/talk (I, PI)
13. Migraines (PI)
14. Inability to write (PI)

There's more, but those are what come to mind. The best way to actually describe it is to put the symptoms together as they usually occur, with me it's usually

6 & 7 & 10 (I) followed by 1 & 12 (PI)

But medicine makes a huge difference, and it makes it possible for me to do my job. I would highly suggest you try different meds to see what you can make work based on what you need. Over time, the seizures get more frequent and stronger, so it's a good idea to deal with them as soon as possible.

 

[girlwithadog]

Thank you to everyone, really.
It's very hard for me to sort everything out. I've had these episodes for as long as I can remember and they only got worse before a major blackout. Up until August 2011 and May 2012 the doctors kept telling me they were dissociative symptoms and that I had a dissociative disorder and that it was all psychological. They even told me after my tonic clonic and my drop seizure that it was likely psuedo seizures because of my history of blackouts and these feelings. I almost bought it and put off seeing a neuro for almost a year. It wasn't until the end of March that I decided to check with the neuro just in case and had an EEG done where the diagnosis was confirmed.
But I'm honestly having such a hard time believing it's actually epilepsy. Although the EEG confirmed it, I just can't accept it that easily.

I've had other bouts but it just can't be. I was on the Mirena during the first and second major seizure and had it removed and since having it removed many of the bad symptoms(like inability to talk and inability to understand) had went away. I'm hoping perhaps I do have dissociation but the mirena caused the seizures.

Eck, it's just so hard to know if all of this nonsense is seizure related or dissociation relation and it's frustrating and I don't want to take those harsh medications without a real second opinion so I think I'm going to find an epitologist since I just got my license back. I'll probably try and make an appointment for July

 

[MaeDae]

I like you have been demanding evidence/proof of seizure activity. I've had two eegs and both test negative, however, dr believes something is going on, i think he thinks im crazy, but hasnt come out and said it yet, but had hinted about it. ive been prescribed, lamotigine, keppra, depakote, and am currently taking zonisamide and he added escitalopram for anxiety (bases covered). But, I've experienced things like

. strange smells.
. distortions of objects (new)
. stomach ache from hell/ with nausea
. strechy taffy pully feeling all over
. color block, rectangles red, yellow green and blue
. reved up feeling, like i was energized
. powered down or unplugged. heavy limbs
. electric shock feeling in forelimbs
. emotional rollercoaster happy to sad in 60 sec or less
. rapid pounding heart beat (sometimes audible in left ear)
. seeing ghost!
. unplugged!!!! I know i repeated this one, its the worse of them all
it feels like sudden death, it freezes me.
. unable to talk, move
. lips and nose tingle and twitching
. playing drums

the bolded ones are always 99% of the time.
I hope I was helpful
Congratulations of your marriage! : )

 

[Cint]

Over time, the seizures get more frequent and stronger, so it's a good idea to deal with them as soon as possible.

I also have TLE, and over time, my seizures increased, too. So I agree with toro, it does sound like partial seizures to me, also. The visual distortion can happen during a Partial seizure. When I've had a CP, things appear distorted, bigger than normal, and things start going in slow motion. I cannot understand what one is saying, although I do know they are speaking to me.

It's better to get them under control ASAP, before they become refractory. Maybe the Mirena did have something to do with the seizures. Or maybe they are hormonal induced, Catamenial seizures? Find an epileptologist and speak with him/her about these issues.

 

[Tiredmom]

*Out of the blue panic attack sensations, nothing I'm afraid of just the general feeling of a panic attack
*Visual distortions (but I can make this happen to a degree, typically it just happens though)
*A kind of surreal feeling that lasts for only approximately 5-15 seconds
*Shortness of breath that accompanies many of the above.
*Head heaviness that comes up randomly and your eyes feel like they want to roll around in your head (not that common but does happen every once in a while)
*Warm tingling feelings in my body, typically not associated with the above symptoms although occassionally is followed by the surreal feeling

I have been told over and over that I have anxiety disorder. I actually know what a panic attack feels like and can control it. I just posted some of your same symptoms about a week ago. I can not stop these ones.

Mine feel like this. I can't talk and feel like the seizure is coming but never does! This is new to me too. Three in one week. I hope they go away but something is changing here. I don't like it either. The visual symptoms drive me nuts. "Alice in wonderland syndrome" is a term commonly used for it.

 

[toro]

FYI, I doubt it's dissociation. First of all it is incredibly tricky to diagnose, much less frequent and for that you should see a well versed shrink (meant to imply empathic friendliness not that I look down on the profession - which I find inexorably productive/helpful).

From those I know with dissociation and what I've read, it's more of an emotional reaction/distancing. You feel conscious, but distant and changed, you'll be interactive - including verbal exchanges and dialog, you'll remember you had the conversation and maybe the topic but not what you said. Your emotional state of mind changes very rapidly and without obvious provocation. It's easier for others to identify your emotions than it is for you.

If you black out and forget, part of you will remember what happened and when you go back into that sort of personality mode, that personality may remember. You will also likely forget a lot of past memories in a general sense, especially those associated with your trauma - like PTSD.

Dissociation is different from epilepsy in the sense that your mind works fine, your brain just sort of partitions it into different sections to deal with trauma. So your partitioned selves, although they are all you, can't really access one another very well. So, ultimately you're hiding parts of you from yourself and do so repeatedly and somewhat predictively based on when the triggering topics arise.

Epilepsy on the other hand is more random and less amnesiatic and Epilepsy is more physical and unconscious. A personality isn't there to interact and you're generally aware of the experiences you have when the SPs are occurring. Dissociation leads to emotional responses and, well anxiety is frequent, it's much less of a reaction and much more of a general, cautionary feeling.

I hope that helps.

Does that make sense?