In this thread, I'm going to list some of the symptoms I've experienced over the years. I'd really appreciate it if people reading could take a look at what I'm going to list and compare and contrast symptoms with what they or others they know have experienced, and say what diagnoses they've had. I'm also particularly interested in reading about the subjective experiences of people with temporal lobe epilepsy or who get a lot of nocturnal seizures, and seeing how they compare to my own. In some respects the medical descriptions, based as they are on objective observation of patients rather than personal experience, are not very helpful to me. They have often left me feeling very unclear about whether the thing that is being described in the literature is the same as what I'm experiencing, and I do have a lot of questions I would like to find an anwser for.
Right, on with the symptoms (warning, this may be rather a long and self-indulgent list!).
Many symptoms I get only occur when I'm asleep already.
When I'm awake, the most notable and frequently occuring symptom is a sort of fuzzy, warm, light-headed, amost dreamlike "floaty" feeling that is quite difficult to describe (so I'm hoping that some people here are going to be familiar with the thing I'm talking about, or I could go on for paragraphs and not really communicate anything!). Often it causes me to have some difficulty concentrating on anything for very long *though it doesn't really seem to affect clarity of thought, it simply makes the process of thinking for very long about anything in particular that much more difficult, and trying to do so often exacerbates the feeling*. This feeling is usually in association with later or earlier sleep- related symptoms, though sometimes I don't get anything further, and sometimes I get symptoms when asleep without having this feeling first. Sometimes I get a "butterflies" feeling of impending excitement in my stomach, or what can best be described as a numbness of the roof of my mouth; more rarely a slightly unreal taste, which seems slightly metallic (I can get a sense of it, but it doesn't seem like an actual taste, more like the memory of one, if that makes sense?).
Often the feeling described above causes me to feel lethargic and tired, though I do think I tend to get it more when feeling relaxed already, or close to what passes for my "normal" sleep time (haha, normal sleep? I'm not sure I know what that is!). Sometimes, though this is fortunately fairly uncommon, it's developed further into an overwhelming sense of exhaustion and a kind of heaviness and coldness in my limbs, and I've felt the need to lie down, often when I shouldn't *according to normal considerations of whether I've rested enough* feel tired. If it gets to this stage, I nearly always have some kind of sleep symptoms, as I'll go on to describe. If this happens, far from the need for a long sleep which I apparently had, I will typically revive shortly after symptoms have diminished *they may occur more than once when this happens, over a period of time* and feel much better and more alert, though slightly jittery, and will probably have problems sleeping normally later.
When I'm asleep (or close to sleep, it can be difficult to determine sometimes at what point it triggers) I get a further set of symptoms:
Physical: the most common occurence (happening virtually every time) is a rapid increase in heart rate and a rise in temperature which often wakes me up, especially if I have it in the absence of other symptoms. I've looked at my hands after this happens (when I've woken up, with heart palpitations and rise in temperature continuing) and often noticed a kind of fine tremor in my hands which persists for quite a while. I can often be woken up multiple times during the night by this, or be (sometimes rather dimly) aware of it occuring, while I remain asleep. It can happen multiple times then.
It's not uncommon for me to get some kind of arm movement; I think this is the most common physical symptom other than the raised heart rate and temperature, as just described. It seems most often to affect just one arm, the left more than the right, and usually involves some degree of rigidity, and either a "fluttering" movement or clenching and unclenching of the hand for a while. I have often had at least some awareness of this happening, and had it confirmed by others that it is (when there was someone else there to observe; I'm currently single!). I don't know whether or how much it happens without me being aware, obviously. The longest I've known it to (when there was someone else to observe, obviously I'm not in the best position to judge myself when it's happening) is between 30 seconds and a minute; sometimes it may continue for just a few seconds. I'm not aware of having had any violent arm movement when sleeping, though I have sometimes had odd jerking arm movements which don't seem to be under conscious control just at the point of waking up; never when I was fully conscious and alert that I recall.
I've also at times had upper body jerking (mostly the area of the torso, it seems) and head movement, either head bobbing from side to side, or opening and shutting of the jaw. I'm not aware of ever getting lower body movment at all. The torso jerking, though I think less frequent than the other things, is something I tend to be aware of, and can feel quite scary compared to the others.
Usually if I'm woken up by any of this, I do so with a kind of involuntary groan (though sometimes I feel like it might be a groan of frustration at this happening again ). Occasionaly other vocalisations can happen, usually immediately before waking. On a couple of memorable occasions something was apparently very humorous, and I woke up with uncontrollable laughter at absolutely nothing. Once the strange surge of weirdness (it felt like a numb, flooding feeling in my head) that had provoked it had passed, I didn't feel so amused any more.
Psychological/subjective symptoms
This is where it gets really interesting, and I'm particularly in need of feedback from others on what their experiences have been, the official literature being not so good at describing these things. I don't think I get any of these symptoms when wide awake, so it was difficult for a long time (and occasionally still is) to distinguish them from something more like unusually vivid and peculiar dreams, though the sheer strangeness of the experiences has tended to be pretty telling in itself.
Usually, concurrent with the raise in heartrate and temperature, I get strange feelings. Sometimes it's something which seems more physical in nature, a kind of white-hot, burning, elemental surge which is centred in my chest *or sometimes head* and radiates outwards through the rest of my body. It's a feeling, but doesn't have specific emotional content. It varies in intensity, from just a kind of strange, spreading warmth which is often enough to trigger other physical symptoms, to something that feels like it's taking over my whole body. Sometimes I'm not very aware of it happening, but just wake up with the aforementioned palpitations and raised temperature, feeling strange, though most commonly I will experience it to some extent.
At other times, I will be aware of this more "basic" feeling to some extent, but will also be hit by strange, overwhelming emotions. These can be fear, which can be very scary indeed (especially in conjunction with the physical symptoms, it has felt at times like my body was going to disintegrate utterly and I was actually going to die there and then). It can also be something altogether strange and indefinable (which I don't want to think about too much right now in case it triggers something!) or at least partially pleasurable. A few times it's been overwhelmingly pleasant, and seems similar (as far as I can make out) to what I've seen described as "ecstatic" seizures, but even on these occasions it can be scary beyond the subjective pleasantness of the sensations themselves due to their strange, overwhelming nature, and the feeling that my body might not be able to take it.
The first few experiences I had were all of this "ecstatic" kind or something close to it, and to begin with occured rather infrequently, maybe once every few months. After the very first time I experienced it, I knew something strange was up: "Because that, whatever it was, just doesn't happen!" but due to the fact that it was actually pleasant, and I'd managed to convince myself that maybe I'd imagined it somehow or could come up with alternative explanations, it took me a long time to look into the matter further.
Overwhelming and strange feelings are often associated with the more serious experiences; if it happens it will often happen repeatedly over the course of a night or session of sleep and leave me feeling exhausted and lethargic when I do wake up and try to do things.
As well as these feelings, I've also had strange, vivid dreams. Dreams that are not associated with other symptoms such as the palpitations or weird emotional sensations I tend to disregard as just dreams, however peculiar they are; but it's rather common for them to occur together. Oddly, when I get the feelings, they frequently have no connection with the actual content of the dreams, which though vivid may have no connection at all with the emotion they seem to be associated with. It seems to me more like they are simply occuring concurrently due to similar triggers, than that I'm getting a weird dream which is causing feelings (ie a nightmare).
Often I've had a strange feeling of detachment while this is going on (these are often lucid experiences) - I see a disjointed series of bright, colourful images, often of people doing things which make no sense, and seem surrounded by an oppressive, almost "heavy" weight of sound *buzzing, incoherent voices, or snatches of unheard music* then get hit by, say, a flood of fear, which does not relate to these in any kind of way and causes the familiar unpleasant palpitations and bodily movments... and my conscious mind is observing the whole bewildering process with a sense of ennui and thinking "here we go again, this gets boring...". I'm hoping that at least someone else will have had experiences of this kind, or I fear I may not be making much sense here!
I've also had, perhaps more frequently, extremely vivid dreamlike experiences, associated with other symptoms such as the palpitations, which have been more coherent. Often it seems like I'm experiencing the physical presence or sight, or interact with, strange beings which I can only describe as demonic *even though I don't believe in such things!* or had strange religious experiences or epiphanies (which I won't go into here), floated out of my own body, or had something happen like bugs crawling over me which I was struggling to throw off. Physical sensations (especially) and imagery seem very vivid and believable during these experiences, and I rather often have some kind of bodily movment such as tremors or jerking associated with them, I think, as well as the familiar palpitations and flood of heat. The experience as a whole can be very incongruous; I've experienced before now the sense that bugs were climbing on me during my sleep, thought I'd woken up to throw them off when actually I'm still sound asleep *with someone there awake, watching me making odd twitching movements and wondering what on earth I'm doing* and actually felt somewhat pleasant sensations while this is taking place.
On the whole, I get very irregular sleep patterns, and have great difficulty in in establishing a healthy rythym, which tends to cause me to be more tired and lacking in energy in the daytime than I'd ideally like, even when otherwise free of problems. Sometimes this is due to being woken up by the seizures (if that's indeed what they are!) sometimes by being exhausted by them and needing more sleep, sometimes it's just not possible to sleep soundly or go to sleep in the first place; it can be hard to tell whether I'm getting sleep issues because of the symptoms themselves, or because they've got me into such erratic sleeping habits. I used to be scared and apprehensive about going to sleep at all for fear of what might happen, which probably didn't help. These days, I know from experience that I'm probably not going to die of whatever it is (maybe have ceased to worry so much if that should happen one day too?), can laugh at the weirdness and craziness of all this when it's not happening (sometimes I even do at the time!) but this doesn't help to actually stop it.
Any of this sound familiar to people? Do you have any suggestions or advice? If so, I'd appreciate hearing what you have to say!
Right, on with the symptoms (warning, this may be rather a long and self-indulgent list!).
Many symptoms I get only occur when I'm asleep already.
When I'm awake, the most notable and frequently occuring symptom is a sort of fuzzy, warm, light-headed, amost dreamlike "floaty" feeling that is quite difficult to describe (so I'm hoping that some people here are going to be familiar with the thing I'm talking about, or I could go on for paragraphs and not really communicate anything!). Often it causes me to have some difficulty concentrating on anything for very long *though it doesn't really seem to affect clarity of thought, it simply makes the process of thinking for very long about anything in particular that much more difficult, and trying to do so often exacerbates the feeling*. This feeling is usually in association with later or earlier sleep- related symptoms, though sometimes I don't get anything further, and sometimes I get symptoms when asleep without having this feeling first. Sometimes I get a "butterflies" feeling of impending excitement in my stomach, or what can best be described as a numbness of the roof of my mouth; more rarely a slightly unreal taste, which seems slightly metallic (I can get a sense of it, but it doesn't seem like an actual taste, more like the memory of one, if that makes sense?).
Often the feeling described above causes me to feel lethargic and tired, though I do think I tend to get it more when feeling relaxed already, or close to what passes for my "normal" sleep time (haha, normal sleep? I'm not sure I know what that is!). Sometimes, though this is fortunately fairly uncommon, it's developed further into an overwhelming sense of exhaustion and a kind of heaviness and coldness in my limbs, and I've felt the need to lie down, often when I shouldn't *according to normal considerations of whether I've rested enough* feel tired. If it gets to this stage, I nearly always have some kind of sleep symptoms, as I'll go on to describe. If this happens, far from the need for a long sleep which I apparently had, I will typically revive shortly after symptoms have diminished *they may occur more than once when this happens, over a period of time* and feel much better and more alert, though slightly jittery, and will probably have problems sleeping normally later.
When I'm asleep (or close to sleep, it can be difficult to determine sometimes at what point it triggers) I get a further set of symptoms:
Physical: the most common occurence (happening virtually every time) is a rapid increase in heart rate and a rise in temperature which often wakes me up, especially if I have it in the absence of other symptoms. I've looked at my hands after this happens (when I've woken up, with heart palpitations and rise in temperature continuing) and often noticed a kind of fine tremor in my hands which persists for quite a while. I can often be woken up multiple times during the night by this, or be (sometimes rather dimly) aware of it occuring, while I remain asleep. It can happen multiple times then.
It's not uncommon for me to get some kind of arm movement; I think this is the most common physical symptom other than the raised heart rate and temperature, as just described. It seems most often to affect just one arm, the left more than the right, and usually involves some degree of rigidity, and either a "fluttering" movement or clenching and unclenching of the hand for a while. I have often had at least some awareness of this happening, and had it confirmed by others that it is (when there was someone else there to observe; I'm currently single!). I don't know whether or how much it happens without me being aware, obviously. The longest I've known it to (when there was someone else to observe, obviously I'm not in the best position to judge myself when it's happening) is between 30 seconds and a minute; sometimes it may continue for just a few seconds. I'm not aware of having had any violent arm movement when sleeping, though I have sometimes had odd jerking arm movements which don't seem to be under conscious control just at the point of waking up; never when I was fully conscious and alert that I recall.
I've also at times had upper body jerking (mostly the area of the torso, it seems) and head movement, either head bobbing from side to side, or opening and shutting of the jaw. I'm not aware of ever getting lower body movment at all. The torso jerking, though I think less frequent than the other things, is something I tend to be aware of, and can feel quite scary compared to the others.
Usually if I'm woken up by any of this, I do so with a kind of involuntary groan (though sometimes I feel like it might be a groan of frustration at this happening again
). Occasionaly other vocalisations can happen, usually immediately before waking. On a couple of memorable occasions something was apparently very humorous, and I woke up with uncontrollable laughter at absolutely nothing. Once the strange surge of weirdness (it felt like a numb, flooding feeling in my head) that had provoked it had passed, I didn't feel so amused any more. Psychological/subjective symptoms
This is where it gets really interesting, and I'm particularly in need of feedback from others on what their experiences have been, the official literature being not so good at describing these things. I don't think I get any of these symptoms when wide awake, so it was difficult for a long time (and occasionally still is) to distinguish them from something more like unusually vivid and peculiar dreams, though the sheer strangeness of the experiences has tended to be pretty telling in itself.
Usually, concurrent with the raise in heartrate and temperature, I get strange feelings. Sometimes it's something which seems more physical in nature, a kind of white-hot, burning, elemental surge which is centred in my chest *or sometimes head* and radiates outwards through the rest of my body. It's a feeling, but doesn't have specific emotional content. It varies in intensity, from just a kind of strange, spreading warmth which is often enough to trigger other physical symptoms, to something that feels like it's taking over my whole body. Sometimes I'm not very aware of it happening, but just wake up with the aforementioned palpitations and raised temperature, feeling strange, though most commonly I will experience it to some extent.
At other times, I will be aware of this more "basic" feeling to some extent, but will also be hit by strange, overwhelming emotions. These can be fear, which can be very scary indeed (especially in conjunction with the physical symptoms, it has felt at times like my body was going to disintegrate utterly and I was actually going to die there and then). It can also be something altogether strange and indefinable (which I don't want to think about too much right now in case it triggers something!) or at least partially pleasurable. A few times it's been overwhelmingly pleasant, and seems similar (as far as I can make out) to what I've seen described as "ecstatic" seizures, but even on these occasions it can be scary beyond the subjective pleasantness of the sensations themselves due to their strange, overwhelming nature, and the feeling that my body might not be able to take it.
The first few experiences I had were all of this "ecstatic" kind or something close to it, and to begin with occured rather infrequently, maybe once every few months. After the very first time I experienced it, I knew something strange was up: "Because that, whatever it was, just doesn't happen!" but due to the fact that it was actually pleasant, and I'd managed to convince myself that maybe I'd imagined it somehow or could come up with alternative explanations, it took me a long time to look into the matter further.
Overwhelming and strange feelings are often associated with the more serious experiences; if it happens it will often happen repeatedly over the course of a night or session of sleep and leave me feeling exhausted and lethargic when I do wake up and try to do things.
As well as these feelings, I've also had strange, vivid dreams. Dreams that are not associated with other symptoms such as the palpitations or weird emotional sensations I tend to disregard as just dreams, however peculiar they are; but it's rather common for them to occur together. Oddly, when I get the feelings, they frequently have no connection with the actual content of the dreams, which though vivid may have no connection at all with the emotion they seem to be associated with. It seems to me more like they are simply occuring concurrently due to similar triggers, than that I'm getting a weird dream which is causing feelings (ie a nightmare).
Often I've had a strange feeling of detachment while this is going on (these are often lucid experiences) - I see a disjointed series of bright, colourful images, often of people doing things which make no sense, and seem surrounded by an oppressive, almost "heavy" weight of sound *buzzing, incoherent voices, or snatches of unheard music* then get hit by, say, a flood of fear, which does not relate to these in any kind of way and causes the familiar unpleasant palpitations and bodily movments... and my conscious mind is observing the whole bewildering process with a sense of ennui and thinking "here we go again, this gets boring...". I'm hoping that at least someone else will have had experiences of this kind, or I fear I may not be making much sense here!
I've also had, perhaps more frequently, extremely vivid dreamlike experiences, associated with other symptoms such as the palpitations, which have been more coherent. Often it seems like I'm experiencing the physical presence or sight, or interact with, strange beings which I can only describe as demonic *even though I don't believe in such things!* or had strange religious experiences or epiphanies (which I won't go into here), floated out of my own body, or had something happen like bugs crawling over me which I was struggling to throw off. Physical sensations (especially) and imagery seem very vivid and believable during these experiences, and I rather often have some kind of bodily movment such as tremors or jerking associated with them, I think, as well as the familiar palpitations and flood of heat. The experience as a whole can be very incongruous; I've experienced before now the sense that bugs were climbing on me during my sleep, thought I'd woken up to throw them off when actually I'm still sound asleep *with someone there awake, watching me making odd twitching movements and wondering what on earth I'm doing* and actually felt somewhat pleasant sensations while this is taking place.
On the whole, I get very irregular sleep patterns, and have great difficulty in in establishing a healthy rythym, which tends to cause me to be more tired and lacking in energy in the daytime than I'd ideally like, even when otherwise free of problems. Sometimes this is due to being woken up by the seizures (if that's indeed what they are!) sometimes by being exhausted by them and needing more sleep, sometimes it's just not possible to sleep soundly or go to sleep in the first place; it can be hard to tell whether I'm getting sleep issues because of the symptoms themselves, or because they've got me into such erratic sleeping habits. I used to be scared and apprehensive about going to sleep at all for fear of what might happen, which probably didn't help. These days, I know from experience that I'm probably not going to die of whatever it is (maybe have ceased to worry so much if that should happen one day too?), can laugh at the weirdness and craziness of all this when it's not happening (sometimes I even do at the time!) but this doesn't help to actually stop it.
Any of this sound familiar to people? Do you have any suggestions or advice? If so, I'd appreciate hearing what you have to say!
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Fortunately that kind, which I would classify as probably the scariest kind when they get bad *well, what is more scary than fear itself?* seems to have become pretty uncommon for me lately (I'll probably have one myself tonight now I've said that though!). Do you mind if I ask whether they tried making psychiatric diagnoses on the basis of you reporting the fear symptoms? It seems like an easy (and therefore typical) line of mistaken thinking for the medical profession to want to go on...