May be going to the doctor after all :-|
Nov. 19th, 2010 04:51 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
urocyonI've got a lot to process right now. It's looking remarkably like a lot of the problems I've been running into may be coming from an inherited kind of temporal lobe epilepsy, which is still somehow scary even though a new label doesn't really change anything.
With my known sensory sensitivities and processing weirdness, I'd just assumed that the weirdo sensory and emotional episodes were coming from getting overloaded and stressed enough that my nervous system short-circuited and caused all kinds of further weirdness. Yeah, that's still a pretty good description of it. :-|
Including some "meltdown" episodes, mostly when I was younger, that actually looked like some kind of seizure to my mom at the time--but she was less concerned after she found out that other of my biodad's family members (the autistic-looking ones, surprise!) do exactly the same thing, down to very specific strange movement patterns they've usually never seen before. (Then we get splitting headaches, start slurring speech and having coordination problems, and have to go lie down...erm, yeah.) It even has a name, the "John Fit", after one ancestor who kept having them pretty much on a daily basis, all his life. Most of the rest of us seem to learn to recognize them coming on and avoid further overload. My biodad still occasionally had them when I knew him, and I have only narrowly avoided several as an adult.
I've also had other experiences that look a lot like complex partial seizures, but mostly simple partial seizure-type experiences on a daily basis. More on the distinction, and some of the phenomena: Possible Temporal Lobe Symptoms.
Actually, I'd been aware for years that a lot of people with similar neurological setups have seizure disorders, including TLE, and a lot of experiences people I know had described with that have sounded way too familiar. I didn't know that this kind of thing is also more common among people with celiac. I wondered about the possibility when I was still being considered bipolar (and yes, there is confusion there), but apparently it was just too disturbing to look into with the stress I was already under. Another rather interesting article there: Complex Partial Seizures Present Diagnostic Challenge.
It does make me more than a little angry that some experiences that may well have been coming from seizures got treated as signs of serious psychological and/or psychiatric problems with poor insight, and I got treated like crap out of frustration when the medications that "should" help just didn't. The idea that it was "just" autism aggravated me enough, but fairly straightforward seizures, FFS?! Especially when the medications I had the most bizarrely unpleasant experiences while taking (which were usually dismissed) are well-known for lowering the seizure threshold. Probably the worst couple of months I've ever had were on Wellbutrin/bupropion, and some of the things I've assumed were EPS from neuroleptics look suspiciously like clusters of complex-partial seizure activity. (Apparently being a CYP2D6 poor metabolizer, with increased-to-toxic blood levels of certain meds, could not have helped at all.) And I may well have continued to have lowered seizure threshold after stopping taking them, leading to a lot of the continuing problems; it happens.
I also felt a lot better on Klonopin/clonazepam, which is often used to treat seizure disorders, and had a lot fewer weirdo sudden panic and other emotionally overwhelming episodes. I also slept better. Interestingly, I never had withdrawal symptoms of any kind from other similar drugs (Xanax, Ativan, Valium, Librium), but got what I now believe to have been increased seizure activity when I went off the Klonopin. It was a very bizarre experience. Xanax and Ativan helped too, but not nearly as much; Klonopin is longer-acting and more specifically used for epilepsy.
Yeah, I know a lot of the anger is a way of dealing with the anxiety and other more difficult-to-manage feelings, but geez. I thought I'd just about reached my anger limit over the earlier misdiagnosis, mishandling, and shoddy treatment (which nobody deserves, regardless of diagnosis), but apparently not.
One of the things I was particularly interested to see, and which really got me thinking about the possibility, was the connection to migraine-type symptoms. An interesting paper (PDF): Differentiating Migraine From Epilepsy. From what I've been reading, I am strongly suspecting that at least most of my "migraines" are really simple partial seizures (the "aura") followed by postictal headaches, nausea, etc. It made entirely too much sense. The two things seem to be both connected and frequently confused, anyway. I had been suspecting that a lot of the really troublesome brain fog, fatigue, and depression ("negative symptoms") I've been having day-to-day might have something to do with the frequent migraines besides the medication after-effects, but, yeah, this is the kind of thing you'd expect with frequent seizures.
So might be the really annoying episodes of "sleep drunkenness", especially after I get jerked awake for no apparent reason (duh!); confusional arousals apparently also go along with TL seizures in particular. I had a lot of trouble with "night terrors" as a kid, too, and it still happens sometimes. I had no idea that the sweats might be related.
In a way, all of this is encouraging, because there may well be something to be done about the freaking headaches and brain fog, which have really been affecting my quality of life a lot. OTOH, I am still dealing with the medical PTSD, and have had some bad experiences with anticonvulsants in past. Topamax/topiramate didn't seem to help any of these symptoms, and gave me serious brain fog and language difficulties; Depakote/valproate messed up my liver function and turned me into a zombie who nonetheless managed to gain 40 lbs. in a month (neat trick when you get up to sleeping 20 hours a day!). I am scared by the idea of trying to find out if TLE is the problem--especially since it's hard to diagnose, frequently not showing up on EEGs--and get proper treatment if it is. Especially since I can't just make an appointment with a neurologist, under the NHS, and find another one if the first one is an ass.
I'm also really disappointed because I was hoping to finally get a British driving license soon. I've been driving since 1991, and it's never been a problem; nobody else in my family who has these symptoms has ever gone on to have the consciousness-losing kind of seizures, that I know of. (I'm pretty sure I'd have heard about it!) But, it's understandable that the DVLA would be really cautious about this kind of thing. And now it concerns me that maybe I've been dangerous on the road without even knowing it. :( With the 90%+ suspicion that I've been having seizures, I don't know that I can go ahead and try to get my provisional license in good conscience, officially diagnosed or no--and I was really looking forward to being able to drive in the UK.
This has given me a lot to think about. And now I've got Joy Division stuck in my head.
Source.
With my known sensory sensitivities and processing weirdness, I'd just assumed that the weirdo sensory and emotional episodes were coming from getting overloaded and stressed enough that my nervous system short-circuited and caused all kinds of further weirdness. Yeah, that's still a pretty good description of it. :-|
Including some "meltdown" episodes, mostly when I was younger, that actually looked like some kind of seizure to my mom at the time--but she was less concerned after she found out that other of my biodad's family members (the autistic-looking ones, surprise!) do exactly the same thing, down to very specific strange movement patterns they've usually never seen before. (Then we get splitting headaches, start slurring speech and having coordination problems, and have to go lie down...erm, yeah.) It even has a name, the "John Fit", after one ancestor who kept having them pretty much on a daily basis, all his life. Most of the rest of us seem to learn to recognize them coming on and avoid further overload. My biodad still occasionally had them when I knew him, and I have only narrowly avoided several as an adult.
I've also had other experiences that look a lot like complex partial seizures, but mostly simple partial seizure-type experiences on a daily basis. More on the distinction, and some of the phenomena: Possible Temporal Lobe Symptoms.
Actually, I'd been aware for years that a lot of people with similar neurological setups have seizure disorders, including TLE, and a lot of experiences people I know had described with that have sounded way too familiar. I didn't know that this kind of thing is also more common among people with celiac. I wondered about the possibility when I was still being considered bipolar (and yes, there is confusion there), but apparently it was just too disturbing to look into with the stress I was already under. Another rather interesting article there: Complex Partial Seizures Present Diagnostic Challenge.
It does make me more than a little angry that some experiences that may well have been coming from seizures got treated as signs of serious psychological and/or psychiatric problems with poor insight, and I got treated like crap out of frustration when the medications that "should" help just didn't. The idea that it was "just" autism aggravated me enough, but fairly straightforward seizures, FFS?! Especially when the medications I had the most bizarrely unpleasant experiences while taking (which were usually dismissed) are well-known for lowering the seizure threshold. Probably the worst couple of months I've ever had were on Wellbutrin/bupropion, and some of the things I've assumed were EPS from neuroleptics look suspiciously like clusters of complex-partial seizure activity. (Apparently being a CYP2D6 poor metabolizer, with increased-to-toxic blood levels of certain meds, could not have helped at all.) And I may well have continued to have lowered seizure threshold after stopping taking them, leading to a lot of the continuing problems; it happens.
I also felt a lot better on Klonopin/clonazepam, which is often used to treat seizure disorders, and had a lot fewer weirdo sudden panic and other emotionally overwhelming episodes. I also slept better. Interestingly, I never had withdrawal symptoms of any kind from other similar drugs (Xanax, Ativan, Valium, Librium), but got what I now believe to have been increased seizure activity when I went off the Klonopin. It was a very bizarre experience. Xanax and Ativan helped too, but not nearly as much; Klonopin is longer-acting and more specifically used for epilepsy.
Yeah, I know a lot of the anger is a way of dealing with the anxiety and other more difficult-to-manage feelings, but geez. I thought I'd just about reached my anger limit over the earlier misdiagnosis, mishandling, and shoddy treatment (which nobody deserves, regardless of diagnosis), but apparently not.
One of the things I was particularly interested to see, and which really got me thinking about the possibility, was the connection to migraine-type symptoms. An interesting paper (PDF): Differentiating Migraine From Epilepsy. From what I've been reading, I am strongly suspecting that at least most of my "migraines" are really simple partial seizures (the "aura") followed by postictal headaches, nausea, etc. It made entirely too much sense. The two things seem to be both connected and frequently confused, anyway. I had been suspecting that a lot of the really troublesome brain fog, fatigue, and depression ("negative symptoms") I've been having day-to-day might have something to do with the frequent migraines besides the medication after-effects, but, yeah, this is the kind of thing you'd expect with frequent seizures.
So might be the really annoying episodes of "sleep drunkenness", especially after I get jerked awake for no apparent reason (duh!); confusional arousals apparently also go along with TL seizures in particular. I had a lot of trouble with "night terrors" as a kid, too, and it still happens sometimes. I had no idea that the sweats might be related.
In a way, all of this is encouraging, because there may well be something to be done about the freaking headaches and brain fog, which have really been affecting my quality of life a lot. OTOH, I am still dealing with the medical PTSD, and have had some bad experiences with anticonvulsants in past. Topamax/topiramate didn't seem to help any of these symptoms, and gave me serious brain fog and language difficulties; Depakote/valproate messed up my liver function and turned me into a zombie who nonetheless managed to gain 40 lbs. in a month (neat trick when you get up to sleeping 20 hours a day!). I am scared by the idea of trying to find out if TLE is the problem--especially since it's hard to diagnose, frequently not showing up on EEGs--and get proper treatment if it is. Especially since I can't just make an appointment with a neurologist, under the NHS, and find another one if the first one is an ass.
I'm also really disappointed because I was hoping to finally get a British driving license soon. I've been driving since 1991, and it's never been a problem; nobody else in my family who has these symptoms has ever gone on to have the consciousness-losing kind of seizures, that I know of. (I'm pretty sure I'd have heard about it!) But, it's understandable that the DVLA would be really cautious about this kind of thing. And now it concerns me that maybe I've been dangerous on the road without even knowing it. :( With the 90%+ suspicion that I've been having seizures, I don't know that I can go ahead and try to get my provisional license in good conscience, officially diagnosed or no--and I was really looking forward to being able to drive in the UK.
This has given me a lot to think about. And now I've got Joy Division stuck in my head.
Source.
no subject
Date: 2010-11-20 02:39 am (UTC)no subject
Date: 2010-11-20 07:16 pm (UTC)when I feel less like bulldozing down the entry hall of my local clinic
*snort* I can definitely sympathize.
no subject
Date: 2010-11-23 04:23 am (UTC)Then the aforementioned assholes put me entirely on high dose neuroleptics. And my seizures went from complex-partial to additionally myoclonic and atonic. (Atonic is where all your muscles lose all tone instantly. According to my dad it's like cutting the strings of a puppet and watching it fall faster than gravity. Lots of injuries came from that.) But were those diagnosed right away? Of course not. The assholes were psychoanalytic types. So just as autism turned into schizophrenia (with onset in infancy, caused by my mother, I shit you not), epilepsy was actually anxiety or acting out of various unconscious whatsits. So I spent months and months having more and more seizures until they happened every few seconds and I had no time to wake up and stand all the way up before I fell again. They were diagnosed in a neurology ER of a children's hospital as seizures. And someone took a blood level of my Clozaril.
I still have the paper somewhere. It says, one line over the other, handwritten next to the lab results, something like:
600 = normal
900 = toxic
1800 = Amanda
(or maybe it was 900 and 1200 for the first two, I don't remember)
So, I was not only on meds that lower the seizure threshold. I was toxic on them. And in the 9ish months on them nobody had taken a level even once.
So I have had a fuckton of that same crap where they either didn't notice obvious patterns, or did notice, even did come up with the best working diagnosis but were overridden by asshats who shouldnt have been practicing medicine. It was complicated by non-epileptifirm EEGs, which are not uncommon for TLE both because of the location in the brain and because there isn't always evidence of seizures unless you're having one. The way I was eventually diagnosed (aside from when the extra types of seizures were diagnosed) was a combination of descriptions (both mine and others) of classic TLE symptoms combined with good response to medication (and best responses to ones meant for this kind of epilepsy, like neurontin, lyrica, and trileptal). So if you pursue diagnosis and have a nonepileptiform EEG, don't take that as a refutation of epilepsy because lots of people with TLE have normal EEGs between seizures and even sometimes during them. And treatment can be critical to prevent sudden death in epilepsy syndrome even if you are mild. I also recommend the book Partial Seizure Disorders by Mitzi Waltz.
no subject
Date: 2010-11-26 11:58 am (UTC)Thanks for commenting. Not too surprisingly, you were one of the people I was thinking of with this.
That sounds like a really infuriating misdiagnosis experience. I kinda figured that the epilepsy symptoms had something to do with how you got perceived in the psych system, but that is absolutely ridiculous. A serious meltdown followed by a "John Fit" was what got me into the system in the first place--I guess it looks scarier when you're adult-sized--but I guess I was lucky to mostly get simple-partial type symptoms (which I quickly stopped mentioning, but yeah, that probably had something to do with getting neuroleptics anyway). Nobody said "dissociation" to me directly, but I suspect that's one of the reasons they were so keen on the hideous abuse theory.
What you're describing here does sound very familiar, if several steps up in asshattery from what I ran into. :( Including the looking "crazier" and a lot less "functional" on neuroleptics--so obviously you need more of the same. Grrrr. The "normal, toxic, Amanda" sequence is truly impressive in a way that makes me want to throttle somebody. Actually, I didn't even know at the time that they were supposed to get blood levels--and if it's a good idea with Clozaril, that surely applies to similar ones. Depakote was the only thing that anybody bothered to check levels of. And then my GP, who was getting copies of the lab reports, was the one who pitched fits about my liver trying to shut down; the psychiatrist fired me when I refused to stay on it after that, and my mom started yelling at him. (That was the same one who decided I was sleeping 20 hours a day because I had sleep apnea that somehow had never been obvious before. Great guy.) Yeah, sometimes it feels good to have an opportunity to talk about this stuff.
So I have had a fuckton of that same crap where they either didn't notice obvious patterns, or did notice, even did come up with the best working diagnosis but were overridden by asshats who shouldnt have been practicing medicine.
That sounds like an unfortunately good summary. Ouch. The atonic seizures sound pretty scary.
It was complicated by non-epileptifirm EEGs, which are not uncommon for TLE both because of the location in the brain and because there isn't always evidence of seizures unless you're having one.
That's what I understood after doing a little reading. :( Lack of easily pointed-to test results makes me kinda nervous by now. I've only had one EEG ever, and that was done by the same idiots who didn't diagnose and treat pneumonia when I was an inpatient, so... I was actually a bit concerned about the possibility of things like strokes and sudden death in epilepsy syndrome. (Especially after one of my friends' mother had a series of strokes after she didn't tell her doctor she was having night seizures again, wanting to keep driving.)
First I think I'd better try to get my blood sugar managed better, but yeah, looking into the possible TLE sounds like a good idea. Ingvar is off work most of next month and can go with me, so I will try to get in to see the GP at least once.
It occurred to me a couple of days ago, after I ran across the NAS Patients with autism spectrum disorders: information for health professionals info sheet, that just knowing what's going on now makes a huge difference. I'm still half-expecting to get treated like crap while having no idea why I'm having trouble with medical settings, but now I hope I can work around some of the overload better and have enough backup that I don't get bulldozed and treated like I'm crazy and stupid if I stop being able to communicate as they expect. So I hope that knowing I do have some level of control over what happens will make it more possible to put myself into that situation to begin with. *crossing fingers*
Thanks for the feedback!
no subject
Date: 2010-11-26 12:11 pm (UTC)