Hi all!
I am new to the community, but have been a lurker for several years now. After experiencing another of what I will refer to as an "episode" yesterday, I wanted to poke my head in and see what the forum thinks...I am going to apologize in advance because my first post is going to be James Michener in length.
I am a 40 year old woman and will begin by saying that I have suffered from ocd and anxiety since I was in my teen years. Before that, I know that I experienced some weird psychological things due to being heavily medicated for severe asthma as a child and teenager - on into my 20s (on steroids for many years).
I experienced my first panic attack in 1996 after going cold turkey off of prozac, I had a few that followed that one up in 2000 and then things really amplified around 2004 due to an absuive relationship with an addict. I was able to get things back under control from 2008 until 2013 or so. I had still struggled with generalized anxiety, but did not have anything particularly strange happen until after I had an ovary removed in late 2012, I then suffered a mild head injury (hard enough hit to make a dent in scalp) and had a few other mild (klutzy hits) from time to time as well.
Medically - I was diagnosed in 2003 with hyperthyroidism, I suffered from that until I went gluten free in 2013, which returned my levels to normal within a year. I have been to a cardiologist and cleared (ekg, stress test, ultrasound) with vaso vagal tendencies (I have never passed out), pvcs and pacs and bouts of sinus arrhthymias (which I am told is actually a sign of a healthy heart). I visited a neurologist in late 2015 due to the frightening physical and physiological symptoms I had started to experience in increasing regularity. She was concerned about some type of dyemilenating disease (like MS) so I had some nerve testing done which just revealed early-stage carpal tunnel, and had an ambulatory eeg and sleep study which only revealed migraines (I don't really experience headaches, so wondering if I have the silent ones) and some sort of REM sleep disorder (but no further information on this). I also had an MRI of my c-spine and brain which were both unremarkable (aside from the migraines). In October of 2016 I visited a rheumatologist and was diagnosed with mild fibromyalgia. I have pretty much had every test known to mankind but am still struggling with these episodes and am worried that it could be something neurological that was not captured during the eeg or sleep study.
I have been feeling like I am peri-menopausal for several years now and a lot of my symptoms fit the bill. The anxiety has really ratcheted up and I started to experience (what I now fear is a form of seizure) back in 2014. I know that catemenial seizures can be driven by hormones, and as a lot of these episodes seem to occur either days before my period or around ovulation, I am wondering if that is what they are...
Okay, so - to tell you a bit about these episodes, there are MANY different ways these things present - that is what is frustrating and why I don't know what they might be related (or not related to). I will list a few examples of things I have experienced over the last few years, and would LOVE and so appreciate any input or feedback from you guys. Doctors can be so dismissive and I just want to make sure there is not something potentially dangerous going on that I need to be following up on more with second and third opinions.
1. A feeling of a strange "rising up" or just "not-right" feeling in my stomach followed by a white-ing out like I am about to pass out - have only experienced this 2 or 3 times in the past 10 years - called an ambulance one time and vitals, including ecg were all normal.
2. A sudden overwhleming terrifying feeling of doom and gloom accompanied by a feeling of deja vu and feeling of "this is it-i am about to die". Sometimes this can be accompanied by hearing voices - nothing tangible. Another time I felt like I saw a grid, sort of like the qbert blocks and that same "this is it i am about to die" scary deja vus feeling. I experienced one of these yesterday. It lasted only about 15 seconds (or so it felt like). I was scrolling through my newsfeed on FB and was looking at a picture, all of the sudden I had that weird scary deja vus and felt like I had seen the image before and I was about to die, I kept scrolling and the next few posts had that same icky feeling. (just a side-note, since i was able to continue scrolling and reading - i wasn't frozen or unable to move) Afterwards my tummy felt icky and there was some pressure/tension in my head as well as a feeling of fogginess. This mostly resolved within 30 minutes once I got up and got my mind off of it.
3. A sudden sensation of not being able to breathe. Like the air has been sucked out of me. I have asthma and it is not the same feeling. Although when this happens it does seem like I have a little more shortness of breath that accompanies it. It is also normally accompanied by a sensation that my heart is slowing down and then speeding up, skipping beats, etc. I have called an ambulance twice when this has happened and both times vitals and ekg were normal. The last instance actually happened when I made a positional change which made me worry that it was structural (But I have since had an endoscopy, ultrasound and xray *unrelated* that ruled that out).
4. Probably the scariest of them all (although they are all SUPER terrifying) is the nocturnal ones. For a while I was experiencing this almost nightly. Seems like they are definitely related to stress and hormones though, as they increase in frequency and intensity related to those things. Some of the things I have experienced are : waking with a start feeling like I can't breathe, waking and seeing apparitions - things like spiders, lights, things moving in vision that take a bit to fade away, waking up with that same "this is it i am about to die feeling", waking up completely disoriented almost like my perception has been completely lost, i don't know where i am, everything seems and looks weird and jumbled and have horrible physical sensations (with almost all of these), but it normally fades within seconds of waking up, waking up in full on panic attacks and just last night I bolted up in bed and yelled - but with almost all of these, I go right back to sleep and am totally fine by morning, with the exception of fatigue and fogginess if I have slept particularly fitfully.
With ALL of these instances though, I will say that for the most part I am always able to remember exactly what happened and have never lost consciousness and don't have any tics or movements or lost time associated with anything.
I also after saying all of this feel like a total, crazy hot mess. Hahaha.
I know this is a CRAP load of information, but I wanted to include it all. I would love to know what those of you with epilsepy make of these episodes and if you think it would be worth getting a second opinion. I want to be able to just chalk everything up to hormones and crazy anxiety, but the deja vu episodes - since things seem to sync up with what I've read about simple partials/tle, I just want to be on the safe side.
Thank you in advance! Especially if you stuck with me this long through this insane post. <3
I am new to the community, but have been a lurker for several years now. After experiencing another of what I will refer to as an "episode" yesterday, I wanted to poke my head in and see what the forum thinks...I am going to apologize in advance because my first post is going to be James Michener in length.
I am a 40 year old woman and will begin by saying that I have suffered from ocd and anxiety since I was in my teen years. Before that, I know that I experienced some weird psychological things due to being heavily medicated for severe asthma as a child and teenager - on into my 20s (on steroids for many years).
I experienced my first panic attack in 1996 after going cold turkey off of prozac, I had a few that followed that one up in 2000 and then things really amplified around 2004 due to an absuive relationship with an addict. I was able to get things back under control from 2008 until 2013 or so. I had still struggled with generalized anxiety, but did not have anything particularly strange happen until after I had an ovary removed in late 2012, I then suffered a mild head injury (hard enough hit to make a dent in scalp) and had a few other mild (klutzy hits) from time to time as well.
Medically - I was diagnosed in 2003 with hyperthyroidism, I suffered from that until I went gluten free in 2013, which returned my levels to normal within a year. I have been to a cardiologist and cleared (ekg, stress test, ultrasound) with vaso vagal tendencies (I have never passed out), pvcs and pacs and bouts of sinus arrhthymias (which I am told is actually a sign of a healthy heart). I visited a neurologist in late 2015 due to the frightening physical and physiological symptoms I had started to experience in increasing regularity. She was concerned about some type of dyemilenating disease (like MS) so I had some nerve testing done which just revealed early-stage carpal tunnel, and had an ambulatory eeg and sleep study which only revealed migraines (I don't really experience headaches, so wondering if I have the silent ones) and some sort of REM sleep disorder (but no further information on this). I also had an MRI of my c-spine and brain which were both unremarkable (aside from the migraines). In October of 2016 I visited a rheumatologist and was diagnosed with mild fibromyalgia. I have pretty much had every test known to mankind but am still struggling with these episodes and am worried that it could be something neurological that was not captured during the eeg or sleep study.
I have been feeling like I am peri-menopausal for several years now and a lot of my symptoms fit the bill. The anxiety has really ratcheted up and I started to experience (what I now fear is a form of seizure) back in 2014. I know that catemenial seizures can be driven by hormones, and as a lot of these episodes seem to occur either days before my period or around ovulation, I am wondering if that is what they are...
Okay, so - to tell you a bit about these episodes, there are MANY different ways these things present - that is what is frustrating and why I don't know what they might be related (or not related to). I will list a few examples of things I have experienced over the last few years, and would LOVE and so appreciate any input or feedback from you guys. Doctors can be so dismissive and I just want to make sure there is not something potentially dangerous going on that I need to be following up on more with second and third opinions.
1. A feeling of a strange "rising up" or just "not-right" feeling in my stomach followed by a white-ing out like I am about to pass out - have only experienced this 2 or 3 times in the past 10 years - called an ambulance one time and vitals, including ecg were all normal.
2. A sudden overwhleming terrifying feeling of doom and gloom accompanied by a feeling of deja vu and feeling of "this is it-i am about to die". Sometimes this can be accompanied by hearing voices - nothing tangible. Another time I felt like I saw a grid, sort of like the qbert blocks and that same "this is it i am about to die" scary deja vus feeling. I experienced one of these yesterday. It lasted only about 15 seconds (or so it felt like). I was scrolling through my newsfeed on FB and was looking at a picture, all of the sudden I had that weird scary deja vus and felt like I had seen the image before and I was about to die, I kept scrolling and the next few posts had that same icky feeling. (just a side-note, since i was able to continue scrolling and reading - i wasn't frozen or unable to move) Afterwards my tummy felt icky and there was some pressure/tension in my head as well as a feeling of fogginess. This mostly resolved within 30 minutes once I got up and got my mind off of it.
3. A sudden sensation of not being able to breathe. Like the air has been sucked out of me. I have asthma and it is not the same feeling. Although when this happens it does seem like I have a little more shortness of breath that accompanies it. It is also normally accompanied by a sensation that my heart is slowing down and then speeding up, skipping beats, etc. I have called an ambulance twice when this has happened and both times vitals and ekg were normal. The last instance actually happened when I made a positional change which made me worry that it was structural (But I have since had an endoscopy, ultrasound and xray *unrelated* that ruled that out).
4. Probably the scariest of them all (although they are all SUPER terrifying) is the nocturnal ones. For a while I was experiencing this almost nightly. Seems like they are definitely related to stress and hormones though, as they increase in frequency and intensity related to those things. Some of the things I have experienced are : waking with a start feeling like I can't breathe, waking and seeing apparitions - things like spiders, lights, things moving in vision that take a bit to fade away, waking up with that same "this is it i am about to die feeling", waking up completely disoriented almost like my perception has been completely lost, i don't know where i am, everything seems and looks weird and jumbled and have horrible physical sensations (with almost all of these), but it normally fades within seconds of waking up, waking up in full on panic attacks and just last night I bolted up in bed and yelled - but with almost all of these, I go right back to sleep and am totally fine by morning, with the exception of fatigue and fogginess if I have slept particularly fitfully.
With ALL of these instances though, I will say that for the most part I am always able to remember exactly what happened and have never lost consciousness and don't have any tics or movements or lost time associated with anything.
I also after saying all of this feel like a total, crazy hot mess. Hahaha.
I know this is a CRAP load of information, but I wanted to include it all. I would love to know what those of you with epilsepy make of these episodes and if you think it would be worth getting a second opinion. I want to be able to just chalk everything up to hormones and crazy anxiety, but the deja vu episodes - since things seem to sync up with what I've read about simple partials/tle, I just want to be on the safe side.
Thank you in advance! Especially if you stuck with me this long through this insane post. <3
