Hello!

[dmnckvrs]

Hi guys. I was hoping I can find a bit of comfort, if I'm just over analyzing things, about the "events" I've had over the past few months.

At the end of August, I was in the shower and out of the blue I just felt strange. I could liken it to deja vu, like I've been in this situation before, or I've had this feeling before, followed by a sickening feeling of nausea, like I was disgusted, for seemingly no reason and then, out. The only thing I remember is coming to, in my head and in pain, but still not aware I was on the floor. Then I did realize and by then a family member was banging on the bathroom door. Come to find out it was for a minute or two. Off to the ER I went. EKG was fine. Followed up with a cardiologist, didn't pass out on a Tilt Table test, even with isoproterenol. He prescribed me Fludrocortisone to try for a month. I can't lie..I didn't take it. I didn't like the idea of a hormone.. but I'm not a doctor, and thinking back, I probably should have.

Jump to end of September, sitting in class, and I suddenly got that same feeling, followed by nausea, felt the world slipping away, and then I just remember coming to..still sitting upright in my chair, pen on the floor.. looking around just completely perplexed, PRAYING I didn't just make a scene in my "unconscious state". No one said anything to me, nor did I ever tell anyone about this.

Now it's November, and I was recently sitting in my kitchen chair reading, and again.. that same strange feeling.. but this time I was determined to get to the floor before it happened. Well, before I was able to get all the way down, I just remember coming to in my head again. This time however, someone witnessed my unconscious state, and they said I was unresponsive, with my eyes open.. no movement except some eye rolling and I was making grumbling noises. I don't remember him helping me up or talking to me after.

I have 3 weeks until my appointment with my doctor to get a referral to the cardiologist and/or neurologist and.. I guess I just need someone to tell me that seizures do not occur this way and for me to just relax and it's probably just cases of 'fainting', even though that's not exactly good either.

Thanks

 

[CathyAnn31]

Hi dm

I can kinda relate to all of that. I have no advice but I am very interested to hear what folks have to say. Welcome to the group.

 

[dmnckvrs]

Hi dm

I can kinda relate to all of that. I have no advice but I am very interested to hear what folks have to say. Welcome to the group.

Thank you CathyAnn. It's just all very strange and it's starting to become a detriment to my life. I didn't even think 'seizure' until a pharmacist I work with said there were some similarities, and to consider seeing a neurologist, even just to rule it out.

 

[scaredycat]

Hi dmnckvrs,

I can't really offer you any advice either, except get it checked, which you're already doing. Your experiences sound awful and I hope you don't have any more. I hope also the doctors can find answers for you.

 

[Nakamova]

Hi dmnckvrs, welcome to CWE!

What you've experienced could be simple partial seizures (more info here: http://www.epilepsy.com/epilepsy/seizure_simplepartial) followed by a generalized seizure with loss of consciousness. Simple partials can take the form of feelings of nausea, or disgust, or fear, or deja vu -- or any of a number of sensory or autonomic disturbances.

It could also be orthostatic intolerance (OI) -- what your cardiologist suspected and prescribed the Fludrocortisone for -- so it's important to figure out exactly what's going on and treat appropriately. (If you are experiencing OI it can help to drink water steadily throughout the day.)

If you haven't already, you should write down everything you can remember about the circumstances of your episodes. I hope the symptoms don't recur, but if they do, make a note of the time of day, whether you were hungry, thirsty or fatigued, sitting or standing, etc. The details might provide clues to your doctors about what any primary or secondary triggers are.


Best,
Nakamova

 

[jyearta]

Hi and Welcome,

I can't add anything more than what Nakamova has said, just wanted you to know you are not alone.

Keep us posted.

 

[dmnckvrs]

Thanks for the replies, I appreciate it. I know it's not good to scour the Internet for self-diagnosis/asking others and I've been really good..until yesterday, lol.

I'll definitely try to write all of these things down before I go and see any specialists. As a matter of fact, the more I think about it, the more instances I'm remembering of having the 'feelings', but they never translated to me going unconscious..at least I don't think they did. One specifically was at work where I had the 'feelings', to the point where I was drifting away, but then I snapped out of it and went about my usual business, albeit alarmed. I guess for a while I've been minimizing these events, hoping they would just stop on their own and there wasn't any sort of chronic issue.

Thanks again.

 

[Cint]

This all sounds very familiar to what I first experienced over 30 years ago. My 1st seizures started sort of like this, with these sort of deju vu feelings. I had gone to a dr. and he said I was hypoglycemic so prescribed a medication. The seizures only progressed (I didn't realize they were seizures at the time) to CP and then I had my first TC seizure on my way out of the shower. I was found in the bath with hot water running over my back and arm while seizing. I ended up with 2nd and 3rd degree burns. Spent two months in the hospital, undergoing numerous tests and surgeries. The bathroom and kitchen are the two most dangerous places in the home for folks with E. So please, beware of this and tell your dr. what you are experiencing. It does sound like seizures to me. I sure wished mine would go away too, but after 30+ years, looks like they are here to stay.

 

[jemsister]

It sounds like it could be seizures to me. I'm glad you are investigating. I have simple and complex partials. With the simples, I don't lose consciousness, but with the complexes I do. My complexes always begin with a simple, so I always think of them as a "worse" seizure, although simple partials can be just as bad (and for me, if I have a bad day with seizure clusters, it's always simples with no complexes). My simples present in a different way though. I do not get the deja-vu feeling, but it is a common seizure symptom.

 

[dmnckvrs]

This all sounds very familiar to what I first experienced over 30 years ago. My 1st seizures started sort of like this, with these sort of deju vu feelings. I had gone to a dr. and he said I was hypoglycemic so prescribed a medication. The seizures only progressed (I didn't realize they were seizures at the time) to CP and then I had my first TC seizure on my way out of the shower. I was found in the bath with hot water running over my back and arm while seizing. I ended up with 2nd and 3rd degree burns. Spent two months in the hospital, undergoing numerous tests and surgeries. The bathroom and kitchen are the two most dangerous places in the home for folks with E. So please, beware of this and tell your dr. what you are experiencing. It does sound like seizures to me. I sure wished mine would go away too, but after 30+ years, looks like they are here to stay.

Sorry to hear about your situation I guess I could say I've been sort of lucky with respect to where it has happened and how little damage I've done to my body so far, although I sprained my knee very bad the first time in the shower. It still occasionally bothers me.

I'm not sure if these things have been happening progressively for me. I can recall getting deja vu , but never the knotty, butterfly feeling. I assumed everyone gets deja vu and to not correlate it? I always found the experience enjoyable. My mother's friend who's a nurse also came over about 5 minutes after it happened last time and she told me I looked "post-ictal". I honestly feel bad for the friend who found me, they said I looked dead and it sort of traumatized them because I wasn't coming to for a few minutes. They were about to call 911 when I started to come out of it.

 

[qtowngirl]

Welcome DM,
I'm pretty much with Cint here; sounds like seizures to me and are very similar to what I've experienced over 18 years. And yes try to be extra careful in the kitchen and shower, they can be dangerous (odd some reason for me other than in bed these seem to be the two places I have them most). No fun in the shower ughhh.
And nope not everyone gets deja vu. It is very common but not guaranteed. Seizures (especially simple partials) are so different from person to person it's astounding. Good to hear you're going to see a neuro. Explain as much detail as you can and keep us posted (you came to the best place )

 

[dmnckvrs]

I appreciate all the input, even if its not what I want to hear I guess I should try to relax until I definitively found out what it is. At this point, I'll be happy just to have an answer as to what's been going on, regardless of the outcome.

 

[dmnckvrs]

OK, so the stress of waiting 3 weeks to see my PCP for referrals was just too much. I managed to score an appointment with another doctor in the same practice and went to them yesterday. She was appalled that they didn't give me a CT scan at the hospital neither of the two times I went to the ER with fainting/hitting my head, or that I wasn't referred to a neurologist after seeing the cardiologist/negative tilt table test/normal EKGs.

Another thing she explained to me was that the cardiologist I did see, was actually a "specialized" specialist, in electrophysiology..so while he is a cardiologist, she said that he really only focuses on the electrical signaling of my heart. The echocardiogram I had done was basically normal, but she said that the cardiologist who interpreted the results left a few notes, something out of character for him if he thinks it was a completely normal echocardiogram. All I see in the Impressioms section was "mild trabeculations of the right ventricle" and in light of patients symptoms, further testing should be done. My PCP never told me this

So, next week is gonna be a busy week for me. She's making me go to a different cardiologist and a neurologist. I have to wear a holter monitor as well as get a CT scan before I see them. Hoping to get to the bottom of this soon. I'm using this thread as a sort of "diary" of these events, so sorry if I'm writing essays

 

[Amoobaa]

Hey I'm new here too and waiting for things to unfold.. i haven't got much more to add than the others have already said, but i just wanted to say i hope you're ok and i hope you start getting some answers.. it's kinda unsettling having to do all this waiting.. i hope things become clearer and more settled. keep us posted

Amoobaa
:banana:

 

[dmnckvrs]

So at work today, I was on the verge of passing out on 3 separate instances. The nausea was overwhelming and my vision became all distorted. The third time, I was literally a second away from just vomiting. My thinking ability, or so I don't think , never diminished during them, the world just became a swirly plume of white and black. I noticed it was hard to visually focus a bit, and lights seemed brighter, after the fact. I don't know if it was my nerves or what. I have a headache now. Blah!

 

[jemsister]

Yuck! That does not sound fun. =( I hope your new doctors find the right answers for you.

 

[dmnckvrs]

Yuck! That does not sound fun. =( I hope your new doctors find the right answers for you.

Thanks. I'm really just at a loss. Everyone I've spoken to says seizures and other forms of syncope have such overlapping similarities that it's hard to tell without proper testing. The wait for these appointments is aggravating. I just need answers. I've stopped driving because I found the decision to do so reckless for me and others on the road.. until I get to the bottom of this. Commuting has been a real hassle the past couple days, but at least my mind is at ease.

 

[Amoobaa]

yup, i can relate to the no driving decision (although it would be illegal for me to drive!) but i know what you mean- it puts your mind at ease, knowing that you are not putting your life or other people's at risk... but i hope you don't have to wait too long for the proper testing. waiting is so frustrating, i agree. I'm still waiting for my op date and it's starting to feel never ending! keep us all posted re: news and appointment/ test outcomes! good luck

 

[dmnckvrs]

@Amooba, I definitely feel better about it. I feel like i was playing Russian roulette. I hope your surgery goes well.

Just adding more possible things to tell the neurologist so I don't forget.

Before my first fainting episode in the summer, there were multiple instances in the preceding weeks leading up to it that I had extreme déjà vu. The most disturbing instances I recall being reading new newspaper articles and Facebook statuses and knowing what was going to be said before I even read the status or comments. I recall being freaked out by it and even investigating how recent the posts were made to see if there was a way I had in fact read them, but I had the feeling I read them weeks ago, yet they were posted at that moment, or a few minutes earlier. I don't know if this has anything to do with what's going on, but I figured I'd write it down.

 

[Amoobaa]

Heya, just saw this and thought i'd say- i'm all for writing things down i've just finished adding several things to my 'list of things to tell neuro'. it makes me feel way better to know i'm keeping a record.. because otherwise i forget!! And like you say, although we don't know whats relevant etc, it's good to keep a note of it in case!