In her book on the subject of PNES, Dr. Lorna Myers wrote that she prefers to call these type of "seizures" "events" and I think that makes since. A seizure is when there is increased abnormal electrical activity in the brain but during PNES, the brain activity appears normal. In fact, according to Myers, PNES is the brain learning to dissociate (remove itself) to the point where it shuts off parts of itself for protection. Technically, this is more like a reduction in brain activity (at least in certain parts) and so, calling them "seizures" seems incorrect by definition. Sure they look like seizures but, at their core, they are not. Because of this, I will call what happens to me during this phenomena an "event" and I have long called episodes of aura (migraine) what I have long called them--"episodes".
Apparently events in PNES can run the gamut. For some, their bodies may appear to be having a grand mal, right down to the body wide convulsions and twitching. For others, it can be an altered state of consciousness. What does that mean? An altered state of consciousness.is basically defined is a varied state of awareness. It could be limited awareness, trance, or even an abrupt loss of consciousness. As someone with a history of dissociative states, I'm quite familiar with this as I have experienced at various points in my life both dissociative fugue (a temporary amnesia as to who you are that includes traveling--not fun!) and the loss of consciousness entirely in response to extreme emotional stress. Without going into details, it'd take a whole lot to put me into that latter state and it's a lot like an emotional driven narcolepsy. Ironically enough, I had defeated this particularly noxious form of dissociation several years ago. It could have very well been another form of PNES and what I'm experiencing now is just that tendency for PNES to crop up in a different way. This past history, I think, is pretty key in my diagnosis of PNES, especially given my current state of depersonalization.
Technical terms and descriptions put aside, what does happen to me during these events? Well, for one thing, unlike that emotional narcolepsy, I don't have a single emotional trigger that I'm consciously aware of going on at the time. There is no apparent emotional distress. I'm not thinking about anything bad at all, at least not consciously. In fact, most of the times that these have occurred with me, I'm having some level of fun, seemingly relaxed and enjoying myself. During one such event, I was enjoying an evening walk and admiring my neighbor's yards. During another, I was blasting music with the top down on my convertible on a beautiful sunny day--how awesome is that? These events, unlike the emotional narcolepsy and at least for me, are not associated with any negativity at all that I'm even aware of. I'm literally having a good time until bam, an event happens and that's frustrating. In a way, that fact almost makes me question the PNES diagnosis until I recall that, even when I'm enjoying myself, I'm still pretty depersonalized. Just because I'm consciously "happy" doesn't mean that there is something boiling over on the back burner of my subconscious mind.
For me, the PNES is still mild. I either have a mild shift in awareness or major. I'm still aware but I become confused. In a way, it's like driving down a highway and suddenly realizing that you don't know how you got to where you are but much deeper. I might not recognize where I'm at even if it's a few blocks from home. I may perform an automatism (breaking for a stop sign, walking a cross a street) but have no recollection of doing so. In a way, it's rather like a very brief fugue that lasts mere seconds. I forget everything and find myself in a place that I don't recognize, unsure of how I got there, and maybe even unsure of who I am. It's a disruption in the timeline of events, identity, and knowing one's own personal geographical realm and it's very, very scary. During one of my events, the pleasant evening walk, my sense of time grew so disjointed that I briefly thought that I was walking in my late grandfather's neighborhood instead of my own even though I hadn't done that in 30 years. .It's extremely distressing so imagine going from happy and relaxed to utterly distraught and confused in about 30 seconds.
The other one is actually a much more significant shift in awareness. There's an odd moment where it almost feels as if something has shifted inside my head and then, there's nothing. Based on my mother's description of one such event during my VEEG, I was talking animatedly, smiling and telling her how to play a card game called Munchkin. I was clearly having a good time when all of a sudden, I stopped and my eyes quickly rolled up and to the left before gravitating to a "neutral" position as if I was looking at the foot of the bed. By her description, her "daughter was completely and utterly gone" and she could see it in my eyes. My body was completely immobile and so rigid that she said it was terrifying because it didn't even look like I was breathing. That scared her the most about the whole thing as she had looking for signs of breathing--chest or abdomen rising, movement of the lip--and there was just nothing. By her reckoning, I was completely paralyzed and completely "gone" mentally.
Based on the VEEG, this event lasted for 20 seconds and I have zero recollection of that part of the event. In my experience, I felt a shift in my head and felt puzzled at what had just caused it. I heard my mom ask me what was wrong but I couldn't express myself. It was at that point where my eyes apparently rolled to the left and 20 seconds later, I was dimly aware, feeling very distant, that my mother was shouting to hit the button for the alarm. I couldn't speak and felt almost drugged as my son also started shouting at me to hit the alarm button. Even though I can recall what they were saying as if through a really thick fog, my ability for speech was so impaired at the time that I had zero comprehension as to what they were actually saying. I couldn't speak and I couldn't understand them. It wasn't until a full minute later that I was talking slowly to the nursing staff who came rushing in after my son hit the button, answering their questions correctly about where I was, who I was, what day it was and more.
If you look at this event and then, look up "complex partial seizure", you can see that the two are extremely similar. During the VEEG, however, my EEG was normal. Even more tellingly is that, although the one documented during the VEEG was while I was off depakote, the ones that had led to my being brought to the EEG Monitoring Unit were occurring while I was on 1500 mgs of depakote to control persistent visual aura. My blood depakote level was absolutely in the range of therapeutic during those pre-EMU events as it was at around 60-70 (therapeutic level is 50-100). My brain was sucking up all that depakote to control the visual auras but, at the same time, complex partial seizures should have also been stopped. That's why, even though my events are extremely similar to complex partials, they are "most likely" PNES or, alternatively, a new expression of my already pre-existing dissociative disorder.
It's quite scary knowing that, at any time, whether I'm having a good time or not, I could "freeze and leave". I really want to emphasize that emotionally and mentally, I'm not aware of anything going on other than that sense of shifting in my head. A month ago, I was playing a video game with my best friend and things were going great in it. I was defending my side of the base, completely in control of it, confidently taking down space zombies (Fortnite lol) before they ever got near me, and then, based on my awareness, I went from that to suddenly having maybe a dozen completely surrounding me and smacking me, my character was near death and my character barely made it out alive. I went from being happily focused to completely confused as to what the heck just happened and I honestly don't know what is driving me to do that. Whatever is going on, I'm utterly blind to it. It's deeply subconscious and that's scary. If I could say, "oh I was thinking about this past trauma", that would be infinitely more comforting but I really have no idea what goes through my subconscious mind to cause me to dissociate to such an extreme that I don't even look like I'm breathing.
That is scary and I'm really hoping that we can figure out some way to stop it. I'm still on the depakote for the aura migraines and the very small chance that they are complex partials but, if it's PNES, these events, if allowed to remain unchecked and unresolved, can just get longer and worse. I'm really lucky that mine only last for a couple minutes at best. For some with PNES, the paralysis or convulsions can last for hours. If my small events are terrifying and debilitating to me, I cannot even imagine how much it must be for others who have it worse. My heart truly goes out to them.
Thursday, October 5, 2017
Wednesday, October 4, 2017
The Road to Diagnosis
Before I was diagnosed, I had been struggling with persistent visual aura for 5 years. The question of whether or not the auras I experienced were migraine or seizure (or even migralepsy, which was both) was present from the beginning of my treatment as one of my symptoms was occasionally "spacing out". Since visual aura can often accompany epilepsy, it made sense in a way but the real question was why? I had taken a tumble down the stairs, striking the back of my head hard against one of the steps among other injuries but a MRI showed no brain injury and my cervical x-ray? Well that was a bit of a mess of inflammation because I also have Lupus/RA. Nothing surprising and really nothing that would seemingly point to a sudden insurgence of aura and possible complex partial seizure episodes. After a normal MRI and a normal EEG, I was placed on 750 mgs of depakote, which relieved the aura a good deal (but not all of it) and we continued trying to figure out what was at the root of the rest for the next three years.
I was sent to a neurophthalmologist (hopefully I spelled it right) and was diagnosed with Adies in both pupils. While that explained some of the blurred vision and episodic enlarged pupils, it still didn't explain everything. Not the aura and not those odd little space out spells of dim awareness. Those spells weren't the primary concern yet as they weren't very noxious and I often just wrote them off as being tired (common with my ailments).
My team of doctors all knew that I had a history of severe trauma. I'd been diagnosed with severe PTSD in 1994 as well as likely childhood PTSD and dissociative disorder. I suffered from psychogenic amnesia (memory loss), depersonalization, and even an event of dissociative fugue. These were facts of my existence for a long time but I'd felt like they were all coming under control as I was slowly peeling back the amnesia and relieving some of the worst aspects of my dissociative disorder that had put me in harm's way. Even though my visual disturbances were significant enough to impede my life from driving to read a book though, I was pretty chipper. I'd have my moments of fear where things weren't going to get better but I would kick in that well trained optimism and shake it off just as quick as it started.
All was going pretty good, all things considered, until I was traumatized yet again last summer. I felt myself shut down emotionally and to describe it, it's felt like I was walking around as a floating mind that was wholly disconnected from my body. My startle reflex was so bad that I could drop something myself right in front of me and would still practically jump out of my skin. Part of me kept telling myself, "hey, you won this time" as I technically did but the fact remained that I was in the full throes of PTSD no matter how much I praised myself for being a glorified bad ass. I was smart and knew I needed to get help right away after the assault so that's what I did. I went straight to a therapist and straight to my doctor. I was started on Remeron and therapy.
I gave up on the therapy as it started digging beyond the recent assault and into more older traumas that I knew were still unresolved. I started having nightmares--not about the recent assault but the past--and decided that perhaps digging up so many mothballs from my noggin wasn't a good idea. Psychotherapy was just not working with me because there was simply too much. Instead, I opted to try to work on it myself by being mindful of my thoughts and fears and making sure that they stayed rational. The thing was, I still was pretty much dead inside--neither happy or unhappy--and really the only things that broke through that dense fog of nothingness were my children.
And no great surprise, all that background stress started making my health worse. My remission with my Lupus and RA ended, starting to produce all sorts of health issues and inflammation. My auras worsened, resulting in my depakote being bumped up to 1500 mgs to still be in the therapeutic level by new neurologist (my prior one retired--I think he was frustrated with me! lol) It just hasn't been good and worse yet, those little space out spells? They got a whole lot worse.
in the last few months, they grew so bad as to sometimes "come to" being where I'm supposed to be but being so confused as that I didn't know where I was and more. Twice, that happened in my own neighborhood. I was having problems with basic functioning and speech. Sometimes, words just didn't want to come out and I'd get so frustrated or repeat the same things over and over again, completely unaware of what I was doing. There were short periods of time that I know that I was gone but don't remember where I consciously went. I'd freeze, staring blankly. When I described it all to my neurologist, he grew alarmed and the most bizarre thing about it? I was doing this while on 1500 mgs of depakote daily, which is in the range for treating seizures. Something was very, very wrong.
My neurologist asked me a series of questions both a head trauma history as well as psychological history. When the subject of stress and depression came up, I explained to him that I had already considered that but the stupid problem was that I really had no idea how I was feeling. I still felt nothing. He ordered a MRI with contrast this time and also a stay at the hospital for the video EEG in the EEG monitoring unit. We talked and we were ready for either way--either it was an effect of stress or something was physiologically wrong.
The MRI once again (thankfully!) came back normal. That was a fantastic day because, let's be honest, when you do have a health history of autoimmune disease and icky drugs for it, the specters of lesions, vasculitis or tumors can be pretty real. Next was the stay in the EMU and even though I was loathe to hit that noisy alarm button, they still managed to catch a whole slew of problems of two basic types: the first being aura and migraine (I had aura and migraine throughout the entirety of my stay) and the second being speech "glitches" and a big moment where I froze in mid-sentence for 20 seconds and then, the inability to speak with altered consciousness for a minute after. In short, we nailed all the types of events that I'd been having problems with and all throughout these, my EEG was normal.
It was those episodes of freezing/staring and speech difficulty with a normal EEG and a history that led to my diagnosis of PNES. The aura, on the other hand, well that is a physiological problem that just made the correct diagnosis of PNES more difficult. It's aura migraine that really never ends but the two things (the aura and the "seizures") aren't related after all.
My neurologist and I have a good relationship and so, lucky for him, I was already aware that there was the distinct possibility that those awful episodes were stress related. After all, the depakote dose that I was on wasn't stopping it. I still have to take depakote and will have to for the rest of my life as well as treatment for the problem that's causing that persistent aura migraine (we maybe figured that out, too!). But it's a relief to know that there aren't seizures going on as well. It really is. I was actually pretty bouncy walking out of his office because, at the end of the day, finding out WHY something is happening and having a plan of attack is the most important thing.
My neurologist even gave me a book titled, "Psychogenic Non-Epileptic Seizures: A Guide" by Lorna Myres, Ph.D to read, which I gave him a look for because I do have double vision for reading so I read very, very slow. (Thankfully, it's large print!) I won't lie that it's not a scary book. It is. It took me several hours but I managed to get through 48 pages. I cried a bit, felt anxious and fearful about whether I'm going to get better or worse, and more. Despite that, it's a good book and the brutal honesty is very important.
If you've been diagnosed with PNES, do NOT take the diagnosis lightly.
As Dr. Myers said, ignoring the problem will not make it go away and can (and probably will) worsen it. There was a story of a patient who got so bad that all she could do was stare for 6 hours--SIX HOURS--a day. That's terrifying. I don't want that to be me or you. Don't let the diagnosis make you uncomfortable either. You don't have control over this at all. Your subconscious mind has pretty much determined that you've been through enough and is going to take over the wheel sometimes. That's not your fault. You didn't do anything to get there. It's just what is happening to you and it's so very important to accept that you have it. You're not weak either. Most people consider me to be one of the strongest people that they know because I am a hardcore survivor.
I read in the books that patients are often difficult about the diagnosis, not wanting to believe it but please be honest with yourself. If you're dissociative, have a history of childhood trauma, PTSD, or even adult trauma plus all the testing that you've already undergone, then your neurologist is probably right and ignoring it isn't going to help you. Seizure meds aren't going to help you. Sticking to things that won't work will make you worse. This has to be tackled with appropriate therapies so please listen to them.
As for me, I almost feel sorry for whatever team gets built up for me. I'm pretty detached and that's not going to make things easy. However, I have two beautiful kids that mean the world to me and for them, I'm going to fight. For myself, too, because honesty, I really don't want to be drooling and staring at a wall for 6 hours a day. Seriously, that wouldn't be a good life and I want a good life no matter what it takes.
Hang in there.
I was sent to a neurophthalmologist (hopefully I spelled it right) and was diagnosed with Adies in both pupils. While that explained some of the blurred vision and episodic enlarged pupils, it still didn't explain everything. Not the aura and not those odd little space out spells of dim awareness. Those spells weren't the primary concern yet as they weren't very noxious and I often just wrote them off as being tired (common with my ailments).
My team of doctors all knew that I had a history of severe trauma. I'd been diagnosed with severe PTSD in 1994 as well as likely childhood PTSD and dissociative disorder. I suffered from psychogenic amnesia (memory loss), depersonalization, and even an event of dissociative fugue. These were facts of my existence for a long time but I'd felt like they were all coming under control as I was slowly peeling back the amnesia and relieving some of the worst aspects of my dissociative disorder that had put me in harm's way. Even though my visual disturbances were significant enough to impede my life from driving to read a book though, I was pretty chipper. I'd have my moments of fear where things weren't going to get better but I would kick in that well trained optimism and shake it off just as quick as it started.
All was going pretty good, all things considered, until I was traumatized yet again last summer. I felt myself shut down emotionally and to describe it, it's felt like I was walking around as a floating mind that was wholly disconnected from my body. My startle reflex was so bad that I could drop something myself right in front of me and would still practically jump out of my skin. Part of me kept telling myself, "hey, you won this time" as I technically did but the fact remained that I was in the full throes of PTSD no matter how much I praised myself for being a glorified bad ass. I was smart and knew I needed to get help right away after the assault so that's what I did. I went straight to a therapist and straight to my doctor. I was started on Remeron and therapy.
I gave up on the therapy as it started digging beyond the recent assault and into more older traumas that I knew were still unresolved. I started having nightmares--not about the recent assault but the past--and decided that perhaps digging up so many mothballs from my noggin wasn't a good idea. Psychotherapy was just not working with me because there was simply too much. Instead, I opted to try to work on it myself by being mindful of my thoughts and fears and making sure that they stayed rational. The thing was, I still was pretty much dead inside--neither happy or unhappy--and really the only things that broke through that dense fog of nothingness were my children.
And no great surprise, all that background stress started making my health worse. My remission with my Lupus and RA ended, starting to produce all sorts of health issues and inflammation. My auras worsened, resulting in my depakote being bumped up to 1500 mgs to still be in the therapeutic level by new neurologist (my prior one retired--I think he was frustrated with me! lol) It just hasn't been good and worse yet, those little space out spells? They got a whole lot worse.
in the last few months, they grew so bad as to sometimes "come to" being where I'm supposed to be but being so confused as that I didn't know where I was and more. Twice, that happened in my own neighborhood. I was having problems with basic functioning and speech. Sometimes, words just didn't want to come out and I'd get so frustrated or repeat the same things over and over again, completely unaware of what I was doing. There were short periods of time that I know that I was gone but don't remember where I consciously went. I'd freeze, staring blankly. When I described it all to my neurologist, he grew alarmed and the most bizarre thing about it? I was doing this while on 1500 mgs of depakote daily, which is in the range for treating seizures. Something was very, very wrong.
My neurologist asked me a series of questions both a head trauma history as well as psychological history. When the subject of stress and depression came up, I explained to him that I had already considered that but the stupid problem was that I really had no idea how I was feeling. I still felt nothing. He ordered a MRI with contrast this time and also a stay at the hospital for the video EEG in the EEG monitoring unit. We talked and we were ready for either way--either it was an effect of stress or something was physiologically wrong.
The MRI once again (thankfully!) came back normal. That was a fantastic day because, let's be honest, when you do have a health history of autoimmune disease and icky drugs for it, the specters of lesions, vasculitis or tumors can be pretty real. Next was the stay in the EMU and even though I was loathe to hit that noisy alarm button, they still managed to catch a whole slew of problems of two basic types: the first being aura and migraine (I had aura and migraine throughout the entirety of my stay) and the second being speech "glitches" and a big moment where I froze in mid-sentence for 20 seconds and then, the inability to speak with altered consciousness for a minute after. In short, we nailed all the types of events that I'd been having problems with and all throughout these, my EEG was normal.
It was those episodes of freezing/staring and speech difficulty with a normal EEG and a history that led to my diagnosis of PNES. The aura, on the other hand, well that is a physiological problem that just made the correct diagnosis of PNES more difficult. It's aura migraine that really never ends but the two things (the aura and the "seizures") aren't related after all.
My neurologist and I have a good relationship and so, lucky for him, I was already aware that there was the distinct possibility that those awful episodes were stress related. After all, the depakote dose that I was on wasn't stopping it. I still have to take depakote and will have to for the rest of my life as well as treatment for the problem that's causing that persistent aura migraine (we maybe figured that out, too!). But it's a relief to know that there aren't seizures going on as well. It really is. I was actually pretty bouncy walking out of his office because, at the end of the day, finding out WHY something is happening and having a plan of attack is the most important thing.
My neurologist even gave me a book titled, "Psychogenic Non-Epileptic Seizures: A Guide" by Lorna Myres, Ph.D to read, which I gave him a look for because I do have double vision for reading so I read very, very slow. (Thankfully, it's large print!) I won't lie that it's not a scary book. It is. It took me several hours but I managed to get through 48 pages. I cried a bit, felt anxious and fearful about whether I'm going to get better or worse, and more. Despite that, it's a good book and the brutal honesty is very important.
If you've been diagnosed with PNES, do NOT take the diagnosis lightly.
As Dr. Myers said, ignoring the problem will not make it go away and can (and probably will) worsen it. There was a story of a patient who got so bad that all she could do was stare for 6 hours--SIX HOURS--a day. That's terrifying. I don't want that to be me or you. Don't let the diagnosis make you uncomfortable either. You don't have control over this at all. Your subconscious mind has pretty much determined that you've been through enough and is going to take over the wheel sometimes. That's not your fault. You didn't do anything to get there. It's just what is happening to you and it's so very important to accept that you have it. You're not weak either. Most people consider me to be one of the strongest people that they know because I am a hardcore survivor.
I read in the books that patients are often difficult about the diagnosis, not wanting to believe it but please be honest with yourself. If you're dissociative, have a history of childhood trauma, PTSD, or even adult trauma plus all the testing that you've already undergone, then your neurologist is probably right and ignoring it isn't going to help you. Seizure meds aren't going to help you. Sticking to things that won't work will make you worse. This has to be tackled with appropriate therapies so please listen to them.
As for me, I almost feel sorry for whatever team gets built up for me. I'm pretty detached and that's not going to make things easy. However, I have two beautiful kids that mean the world to me and for them, I'm going to fight. For myself, too, because honesty, I really don't want to be drooling and staring at a wall for 6 hours a day. Seriously, that wouldn't be a good life and I want a good life no matter what it takes.
Hang in there.
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