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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by IsoM on December 7, 2001, at 20:52:01
After reading so many posts with such desperate problems, I feel like this question doesn't belong here. Sorry.
But I was wondering if anyone has tried Dr. Bob's questionnaire page on "Indicators Suggestive of Subsyndromal Epilepsy"? http://www.dr-bob.org/tips/isse.html
I'd love to hear from you & your results. I was blown away with the questions. I thought I was pretty unique in feeling, sensing, hearing, seeing these things as asking others many times, I've never found anyone else who's had this except my Mom & one son.
Posted by dreamer on December 7, 2001, at 23:01:43
In reply to Dr.Bob's Subsyndromal Epilepsy Questionnaire, posted by IsoM on December 7, 2001, at 20:52:01
> After reading so many posts with such desperate problems, I feel like this question doesn't belong here. Sorry.
>
> But I was wondering if anyone has tried Dr. Bob's questionnaire page on "Indicators Suggestive of Subsyndromal Epilepsy"? http://www.dr-bob.org/tips/isse.html
>
> I'd love to hear from you & your results. I was blown away with the questions. I thought I was pretty unique in feeling, sensing, hearing, seeing these things as asking others many times, I've never found anyone else who's had this except my Mom & one son.Hello,
Seems high hey!
Most online tests I do I get high score -WoW- what a messy brain.
I've gone past caring but is interesting.d
Posted by Katey on December 7, 2001, at 23:04:28
In reply to Dr.Bob's Subsyndromal Epilepsy Questionnaire, posted by IsoM on December 7, 2001, at 20:52:01
that was kind of creepy....my highest number was an 89 (memory, experiental, or time distortions) my lowest was 17 (motor abnormalities) there were a lot more high numbers (above 50) than low ones.
Posted by IsoM on December 8, 2001, at 3:19:20
In reply to Re: Dr.Bob's Subsyndromal Epilepsy Questionnaire, posted by Katey on December 7, 2001, at 23:04:28
So dreamer & Katey, did either of you ever get the epilepsy part checked out by a doctor like Dr. Bob recommends? Are any of the meds you're taking also used in epilepsy?
It honestly never occured to me before that anyone else ever shared the way I sensed the world - I'd asked so many before & they had no idea what I was asking. I've come to live with most of the sensations (some are fairly neat if they don't scare you) but some I hate & would love to see gone.
It was so strange when my youngest son was only 2 1/2 years old & one night when he had trouble sleeping 'cause of a bad cold, he said the coloured lights circling around frightened him - it was so weird hearing him describe what I often saw. I knew he could never make it up as I'd never mentioned it to him.
If you take any meds that are also for epilepsy, do they alleviate some of the sensations? I'd like to know more about subsyndromal epilepsy but when I did a search on Google, only Dr. Bob's site came up.
Please excuse all my questions, but this is such a revelation for me that others 'see', 'hear', & 'feel' these things too. I think if I bring this up to my doctor without more info, he'll think I'm a hypocondriac.
Posted by judy1 on December 8, 2001, at 4:19:12
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up?, posted by IsoM on December 8, 2001, at 3:19:20
I also scored very high and have had seizures in the past as a result of head trauma. I saw an epileptologist last week and heard him dictating (part of which said atrophy of the hippocampus- see thread on other board). I haven't received my report from him, but he wants me to check in the hospital for a week so he can not only have continuous EEG monitoring but video. We also want to rule out my dissociative spells being seizures. Take care- judy
Posted by IsoM on December 8, 2001, at 4:33:08
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up?, posted by judy1 on December 8, 2001, at 4:19:12
Posted by Katey on December 8, 2001, at 8:37:40
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up?, posted by IsoM on December 8, 2001, at 3:19:20
i think most of my meds have warnings that they could cause seizures. ive never been checked for epilepsy or anything being actually physically wrong with my brain, beyond a couple blood tests. its kinda nice knowing that im not so completely insane with this one.
Posted by Dr. Bob on December 8, 2001, at 16:22:22
In reply to Dr.Bob's Subsyndromal Epilepsy Questionnaire, posted by IsoM on December 7, 2001, at 20:52:01
> I was wondering if anyone has tried Dr. Bob's questionnaire page on "Indicators Suggestive of Subsyndromal Epilepsy"? http://www.dr-bob.org/tips/isse.html
It's not really *my* questionnaire, you know. Frank Feiner came up with it, I just made it into a web page...
Bob
Posted by dreamer on December 8, 2001, at 19:05:44
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up?, posted by IsoM on December 8, 2001, at 3:19:20
> So dreamer & Katey, did either of you ever get the epilepsy part checked out by a doctor like Dr. Bob recommends? Are any of the meds you're taking also used in epilepsy?
>
> It honestly never occured to me before that anyone else ever shared the way I sensed the world - I'd asked so many before & they had no idea what I was asking. I've come to live with most of the sensations (some are fairly neat if they don't scare you) but some I hate & would love to see gone.
>
> It was so strange when my youngest son was only 2 1/2 years old & one night when he had trouble sleeping 'cause of a bad cold, he said the coloured lights circling around frightened him - it was so weird hearing him describe what I often saw. I knew he could never make it up as I'd never mentioned it to him.
>
> If you take any meds that are also for epilepsy, do they alleviate some of the sensations? I'd like to know more about subsyndromal epilepsy but when I did a search on Google, only Dr. Bob's site came up.
>
> Please excuse all my questions, but this is such a revelation for me that others 'see', 'hear', & 'feel' these things too. I think if I bring this up to my doctor without more info, he'll think I'm a hypocondriac.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello.....
Can't find any info on web.
Some drugs used for epilepsy are now being used here in uk for bipolar such as depakote .I think some weird but pleasant symptoms I xperience is due to the effexor I take (the only med at the moment) without it it's bigtime scarey.
Why would you want to treat the sensations if you kinda~sorta enjoy them?
What are the unpleasant ones do you get migrainesdreamer astronaunt
Posted by IsoM on December 8, 2001, at 22:39:19
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up?, posted by dreamer on December 8, 2001, at 19:05:44
The lights & coloured patterns can be very interesting. As they're much more noticable in the dark, at night when I have trouble falling asleep, I just watch the colours & patterns till I fall asleep. Same with the voices - I've learned to basically ignore the mental voices (they're not like sound but like all the sounds I've heard recently played back as bits of thoughts & sometimes I can even recognise different voices) but at night when I'm tired, they're more noticable so I'll listem to the snatches of conversations till I fall asleep.
Neither the 'sounds' or lights & patterns disturb me. I've realised long ago that they were just random neural firings in my brain but the moving spots & blurs can make it difficult to read in the evenings. I've had my eyes checked by an opthamologist & there's no organic eye disorders. Also the tactile feelings (I'm super-sensitive to touch) are irritating. I hate the feel of clothes & many fabrics are definitely out. All tags need to be removed from my clothes. Always being unpleasantly aware of clothes touching your skin is bothersome, hardly life-threatening but I dislike it.
In the questionnaire it asks if "I bump into or drop things. I'm accident-prone or absent-minded. I lose track of my place in tasks." I'm covered in bruises to prove how much of a klutz I am. I can even run over my own feet with a grocery cart. I frequently bang into the doorway, not quite making it through, trip over things, make an absolute mess when I cook, etc; I dislike my clumsiness. I suppose it's almost comical to watch me. Even in typing this up, I'm continously going back & editing, not because I spell incorrectly, but from my fingers hitting the wrong keys or in the wrong order - AND I've used a computer for years & can type 'well'.
Anyway, it's those sort of things that bother me & I'd love to see go. I do enjoy the perspective I have on life. I love the intensity of life that I feel & would rather have all the nuisances if it meant I'd have to lose my intensity too.
I use to have migraines frequently - either visual auras, or smells & intense feelings of irritation, but now they've faded & I'll occasionally get a visual aura but rarely will a full-blown headache with nausea develop. Why the question about migraines?
I'm taking Dr. Bob's suggestion & will e-mail the maker of the questionnaire for more info.
> Hello.....
> Can't find any info on web.
> Some drugs used for epilepsy are now being used here in uk for bipolar such as depakote .
>
> I think some weird but pleasant symptoms I xperience is due to the effexor I take (the only med at the moment) without it it's bigtime scarey.
>
> Why would you want to treat the sensations if you kinda~sorta enjoy them?
> What are the unpleasant ones do you get migraines
>
> dreamer astronaunt
Posted by dreamer on December 8, 2001, at 23:20:42
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up? » dreamer, posted by IsoM on December 8, 2001, at 22:39:19
> The lights & coloured patterns can be very interesting. As they're much more noticable in the dark, at night when I have trouble falling asleep, I just watch the colours & patterns till I fall asleep. Same with the voices - I've learned to basically ignore the mental voices (they're not like sound but like all the sounds I've heard recently played back as bits of thoughts & sometimes I can even recognise different voices) but at night when I'm tired, they're more noticable so I'll listem to the snatches of conversations till I fall asleep.
>
> Neither the 'sounds' or lights & patterns disturb me. I've realised long ago that they were just random neural firings in my brain but the moving spots & blurs can make it difficult to read in the evenings. I've had my eyes checked by an opthamologist & there's no organic eye disorders. Also the tactile feelings (I'm super-sensitive to touch) are irritating. I hate the feel of clothes & many fabrics are definitely out. All tags need to be removed from my clothes. Always being unpleasantly aware of clothes touching your skin is bothersome, hardly life-threatening but I dislike it.
>
> In the questionnaire it asks if "I bump into or drop things. I'm accident-prone or absent-minded. I lose track of my place in tasks." I'm covered in bruises to prove how much of a klutz I am. I can even run over my own feet with a grocery cart. I frequently bang into the doorway, not quite making it through, trip over things, make an absolute mess when I cook, etc; I dislike my clumsiness. I suppose it's almost comical to watch me. Even in typing this up, I'm continously going back & editing, not because I spell incorrectly, but from my fingers hitting the wrong keys or in the wrong order - AND I've used a computer for years & can type 'well'.
>
> Anyway, it's those sort of things that bother me & I'd love to see go. I do enjoy the perspective I have on life. I love the intensity of life that I feel & would rather have all the nuisances if it meant I'd have to lose my intensity too.
>
> I use to have migraines frequently - either visual auras, or smells & intense feelings of irritation, but now they've faded & I'll occasionally get a visual aura but rarely will a full-blown headache with nausea develop.Why the question about migraines?--
I was just trying to see a connection between epilepsy , migraines and bipolar because depakote is used to treat these.....all live in same part of brain I have no idea???????? too complicated.I also get all of above symptoms except the clumsiness but pens and brushes just seem to jump out of my hand , literally it's annoying!
I also cut out clothes tags.
Another thing I noticed in the questionaire is the tongue itch (before seizure i guess) I get this before my mood switches usually before extreme irritation.....this is the time I usually take a sedative to normalise myself. To discuss this with doc , well no point he'll just smile.
There are so many other weird things that happen
too , I am actually too complex for a proper diagnosis......hey that makes me crazy~special/:^)dreamer
Posted by IsoM on December 8, 2001, at 23:37:59
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up?, posted by dreamer on December 8, 2001, at 23:20:42
It's nice to know we're too complex to categorise. I always hated all those diagnostic categories - sometimes labeling someone is hindersome not helpful.
Yeah, I know what you mean about 'all sorts of other weird little things'. I learned to keep my mouth shut about such things as others looked strangely at me. I wasn't being branded by them, they just had no clue what I was talking about.
And yes, my tongue frequently itches! And the insides of my ear & not just the ear canal - deep inside where I can't touch it. I have to wildly try to scratch my tongue against my teeth. Something I found others didn't have either.
Cutting out clothes tags when you're clumsy can be a problem. I frequently ended up cutting a hole into the garment by mistake. Now I just hand them to my son to do.
I've been checking the internet for a while tonight & have found some stuff about all this under temporal lobe epilepsy. I was looking at the list of drugs they talked about & a couple of them were the drugs a neurologist had offered to put me on years ago for migraines. I declined then & would still do so. Yes, I'd love to have some of the symptoms gone alright, but since I've been feeling happy & stable on my current meds, I'm afraid to introduce anything else that's not absolutely necessary. Who knows how everything would react? Instead, I'll simply educate myself more about TLE & see if things change in the future. It sounds like you're just sitting tight with what you have too, am I correct? Oh well, far better this than some other things, hey?
> Why the question about migraines?--
> I was just trying to see a connection between epilepsy , migraines and bipolar because depakote is used to treat these.....all live in same part of brain I have no idea???????? too complicated.
>
> I also get all of above symptoms except the clumsiness but pens and brushes just seem to jump out of my hand , literally it's annoying!
> I also cut out clothes tags.
> Another thing I noticed in the questionaire is the tongue itch (before seizure i guess) I get this before my mood switches usually before extreme irritation.....this is the time I usually take a sedative to normalise myself. To discuss this with doc , well no point he'll just smile.
> There are so many other weird things that happen
> too , I am actually too complex for a proper diagnosis......hey that makes me crazy~special/:^)
>
> dreamer
Posted by dreamer on December 9, 2001, at 18:56:34
In reply to Re: Sub. Epilepsy Questionnaire - Follow-up? » dreamer, posted by IsoM on December 8, 2001, at 23:37:59
> It's nice to know we're too complex to categorise. I always hated all those diagnostic categories - sometimes labeling someone is hindersome not helpful.
>
> Yeah, I know what you mean about 'all sorts of other weird little things'. I learned to keep my mouth shut about such things as others looked strangely at me. I wasn't being branded by them, they just had no clue what I was talking about.
>
> And yes, my tongue frequently itches! And the insides of my ear & not just the ear canal - deep inside where I can't touch it. I have to wildly try to scratch my tongue against my teeth. Something I found others didn't have either.
>
> Cutting out clothes tags when you're clumsy can be a problem. I frequently ended up cutting a hole into the garment by mistake. Now I just hand them to my son to do.
>
> I've been checking the internet for a while tonight & have found some stuff about all this under temporal lobe epilepsy. I was looking at the list of drugs they talked about & a couple of them were the drugs a neurologist had offered to put me on years ago for migraines. I declined then & would still do so. Yes, I'd love to have some of the symptoms gone alright, but since I've been feeling happy & stable on my current meds, I'm afraid to introduce anything else that's not absolutely necessary. Who knows how everything would react? Instead, I'll simply educate myself more about TLE & see if things change in the future.
It sounds like you're just sitting tight with what you have too, am I correct? Oh well, far better this than some other things, hey?Sitting , often pacing .Socially it is difficult I'm beginning to stutter and have to pop a benzo just to use the phone.
Let me know how things go , I see my doc next week it seems kinda futile and he's not too well mentally either.dreamerx
Posted by judy1 on December 14, 2001, at 18:51:02
In reply to Thanks Judy - Keep Us Posted As To Results Please (nm) » judy1, posted by IsoM on December 8, 2001, at 4:33:08
Hi,
I received the results of my exam, as I had overheard I do have a smaller than normal left hippocampus. The dr. wants me in the hospiatl for a week of video EEG, since I am almost due and terrified of hospitals that's impossible. He questions if I have complex partial seizure, epileptic status or a fugue state. My diagnosis now is bipolar, panic, and DD-NOS. Maybe they are all related somehow. Any comments would be appreciated. Thanks- judy
Posted by IsoM on December 14, 2001, at 19:13:16
In reply to Re: Thanks Judy - Keep Us Posted As To Results Please » IsoM, posted by judy1 on December 14, 2001, at 18:51:02
Hi Judy, I'm a Judy too but it's too common & for posting in forums & other places, it's easier to use IsoM initially as no one knows my gender that way.
You asked if they're all somehow connected. Personally, I do.It's like if you have the wrong sized screwdriver bit, it not only stops you from undoing the screws on your cupboard but could make it impossible to undo the screws on many other household items.
Same with our brain's chemistry. That's why when we take a medication, it has so many possible side-effects. Most times the medication can't be so carefully engineered to only affect as certain thing in our CNS but impacts on all sorts of other systems too. I've noticed a tie-in with many of the same problems. If someone has one thing not working right, you can be sure there's a few more related things not up to par too.
Whatever the doctor wants to test you for could probably wait till after your delivery & recovery. Ask him if it's absolutely crucial. I bet it's not. You've lived with it already for a long time.
Are you planning on nursing? I've read so much about the benefits of nursing & how it can stave off post-partum depression in most women. If you nurse your baby, you'll make lots of a hormone called the "cuddle" hormone, oxytocin. Boy, did that do wonders for making me calm & mellow. I nursed my babies for as long as possible, not just for their sakes, but to keep me mellow.
For me, I got lucky, sort of. Generally the meds that fix oe problem have benefited other problems too. Not all have been that lucky. It's affected other problems in some alright, but only to make it worse.
****************************************************************************************************
> Hi,
> I received the results of my exam, as I had overheard I do have a smaller than normal left hippocampus. The dr. wants me in the hospiatl for a week of video EEG, since I am almost due and terrified of hospitals that's impossible. He questions if I have complex partial seizure, epileptic status or a fugue state. My diagnosis now is bipolar, panic, and DD-NOS. Maybe they are all related somehow. Any comments would be appreciated. Thanks- judy
Posted by judy1 on December 15, 2001, at 9:58:44
In reply to Re: Thanks Judy - Keep Us Posted As To Results Please, posted by IsoM on December 14, 2001, at 19:13:16
Thank you for your response, you made a lot of sense (of course, with such a great name:-)
I want to nurse, but I had psychotic depression with my son, and I don't see them- the powers to be- allowing me to be off meds. I really wish I could, I nursed my son until I landed up in the hospital and I felt the ame way you did. Take care, judy
This is the end of the thread.
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