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Medical Forum / Diseases and Disorders / Epilepsy / August 2006

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Epilepsy

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Actor123 - 01 Aug 2006 23:53 GMT
Can anyone tell me if what I am experiencing might be epilepsy.  My GP
is stumped and the HMO neurosurgeon said it wasn't epilepsy because I
never lost consciousness
(he didn't seem too bright to me).  I've read up a lot on epilepsy, but
can't seem to find any concrete diagnostic guidelines.  There are the
categories of seizures, but just categorizing them doesn't seem to tell
you if you have epilepsy.

I have fairly constant neuromuscular overexcitability.  It basically
feels like someone is pumping a bunch of electricity through me.
Occasionally, when things get bad, I have seizures or seizure like
activity (my entire body will jerk once, other times it will be just a
body part).  These are not minor twitches either.  The entire body jerk
is quite intest an feels like my entire body got a jolt.  When I am not
having seizures, I have twitches, and my body basically constantly
feels like it is about to go into seizures.

I thought epilepsy would involve large seizures with periods of
normalcy in between.  I'm getting small seizures, but with no periods
of normalcy.  Its been several months and I'm barely able to function.
There appears to be a metabolic component but correction of various
mineral imbalances has not resolved the symptoms.  Even so, I'm not
even sure where the line is between metabolic problems an epilepsy.
Can anyone give any guidance as to what the criteria is, whether this
may be epilepsy, and whether its possible to have CONSTANT symptoms of
epilepsy?
partials - 02 Aug 2006 16:35 GMT
> Can anyone tell me if what I am experiencing might be epilepsy.  My GP
> is stumped and the HMO neurosurgeon said it wasn't epilepsy because I
> never lost consciousness
> (he didn't seem too bright to me).  

No. It wasn't a very bright comment since a common type of epilepsy called
simple partial seizures, for example, involves no loss of consciousness.

> I've read up a lot on epilepsy, but
> can't seem to find any concrete diagnostic guidelines.  There are the
[quoted text clipped - 9 lines]
> having seizures, I have twitches, and my body basically constantly
> feels like it is about to go into seizures.

From that description, it doesn't sound terribly familiar as being epilepsy,
but a few questions may help clarify. Aside from your muscular symptoms, is
there anything else strange going on? such as, do you get any strange tastes or
odors? strange feelings at almost a mental/emotional level that are difficult to
describe? What percentage of your symptoms happen at night as opposed to your
waking hours?

> I thought epilepsy would involve large seizures with periods of
> normalcy in between.  I'm getting small seizures, but with no periods
> of normalcy.  

Do some Google searches on "restless leg syndrome" (RLS) and let us know how
familiar any of those descriptions are. You could start with:
<http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm>

> Its been several months and I'm barely able to function.

That makes it sound as though this is something fairly new and recent. Is it?
Was there any incident at the time that it started such as an illness with high
fever or physical trauma such as an automobile accident or a fall?

> There appears to be a metabolic component but correction of various
> mineral imbalances has not resolved the symptoms.  Even so, I'm not
> even sure where the line is between metabolic problems an epilepsy.
> Can anyone give any guidance as to what the criteria is, whether this
> may be epilepsy, and whether its possible to have CONSTANT symptoms of
> epilepsy?

Epilepsy is a large catch-all category and it might be although it doesn't sound
familiar, but I am not a doctor. Let's see what you have to say about the above
and we'll take it from there.
Actor123 - 02 Aug 2006 18:58 GMT
> > Can anyone tell me if what I am experiencing might be epilepsy.  My GP
> > is stumped and the HMO neurosurgeon said it wasn't epilepsy because I
[quoted text clipped - 24 lines]
> describe? What percentage of your symptoms happen at night as opposed to your
> waking hours?

At times when the "neurological overload" is at its worst, I am
extremely sensitive to sensory input, especially noise.  Even a normal
level conversation feels like its grating the inside of my spinal
column.  At those times I also seem to be sensing everything much more
acutely - not even all in a "bad" way.  While lights seem brighter
(which can be bad), I am also able to take in a lot more of my
surroundings.  Also, when the muscles aren't cramping or twitching, I
actually feel extremely strong because any movement on my part is
amplified by my nervous system.  My hands and arms feels "lighter",
like they are feather-weight.

> > I thought epilepsy would involve large seizures with periods of
> > normalcy in between.  I'm getting small seizures, but with no periods
[quoted text clipped - 3 lines]
> familiar any of those descriptions are. You could start with:
> <http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm>

Its not RLS.  Its throguhout my entire body and 24 hours a day.
Symptoms do seem to be worse when I am at rest, but I think that's just
because movement tends to negate a twitch or seizure.

> > Its been several months and I'm barely able to function.
>
> That makes it sound as though this is something fairly new and recent. Is it?
> Was there any incident at the time that it started such as an illness with high
> fever or physical trauma such as an automobile accident or a fall?

I had a bout of it 8 years ago.  WHat caused it then is somewhat up in
the air.  I started taking Buspar for some mild anxiety (not all that
strong, I just felt like trying something out).  The Buspar actually
caused medically induced panic attacks over a period of weeks.  Then
when I stopped cold turkey, the neurological symptoms began in earnest.
They stayed for several months until I started taking vitamins and
minerals.  I later pinpointed recovery to magnesium.  Subsequent blood
tests during a flare up last year and especially again a few months ago
confirmed magnesium deficiency.  But we've now corrected the deficiency
(and then some) and the symptoms have not resolved.  I'm not sure
whether Magnesium was covering things up.  Since I had a deficiency,
you'd think not, but I keep reading where lots of people with various
neurological conditions, including epilepsy, have low magnesium so I'm
not sure which causes which.

> > There appears to be a metabolic component but correction of various
> > mineral imbalances has not resolved the symptoms.  Even so, I'm not
[quoted text clipped - 6 lines]
> familiar, but I am not a doctor. Let's see what you have to say about the above
> and we'll take it from there.
partials - 02 Aug 2006 21:56 GMT
>>> Can anyone tell me if what I am experiencing might be epilepsy.  My GP
>>> is stumped and the HMO neurosurgeon said it wasn't epilepsy because I
[quoted text clipped - 22 lines]
>> describe? What percentage of your symptoms happen at night as opposed to your
>> waking hours?

After reading over your additional information, I'm forced to conclude that your
condition really can't be what we call "epilepsy" and the symptoms don't fall
under any of the various forms of epilepsy. (You've probably already seen
www.epilepsy.com). That's not to say that your condition might not in the final
analysis be treated with some of the same drugs that are used to treat epilepsy
as there is considerable overlap in drug treatment. Do remember though that I am
not a doctor and could easily be overlooking something.

> At times when the "neurological overload" is at its worst, I am
> extremely sensitive to sensory input, especially noise.  Even a normal
[quoted text clipped - 3 lines]
> (which can be bad), I am also able to take in a lot more of my
> surroundings.  

Many of us with epilepsy are photo-sensitive in that flashing lights can trigger
a seizure, but that doesn't quite seem the same.

> Also, when the muscles aren't cramping or twitching, I
> actually feel extremely strong because any movement on my part is
[quoted text clipped - 11 lines]
> Symptoms do seem to be worse when I am at rest, but I think that's just
> because movement tends to negate a twitch or seizure.

I had wondered if there would be any similarity even though there were a lot of
differences.

>>> Its been several months and I'm barely able to function.
>> That makes it sound as though this is something fairly new and recent. Is it?
[quoted text clipped - 6 lines]
> caused medically induced panic attacks over a period of weeks.  Then
> when I stopped cold turkey, the neurological symptoms began in earnest.

So the experience 8 years ago was the first ever that was anything remotely like
it? Had you been treated for your anxiety with other prescription drugs in years
prior to the use of Buspar?

I'll offer the following, very definitely NOT as an attempted diagnosis, but as
simply food for thought:

Dystonia (literally, "abnormal muscle tone") is a generic term used to describe
a neurological movement disorder involving involuntary, sustained muscle
contractions. Dystonia may affect muscles throughout the body (generalised), in
certain parts of the body (segmental), or may be confined to particular muscles
or muscle groups (focal).

BuSpar® (buspirone hydrochloride)
PRECAUTIONS

Possible concerns related to buspirone's binding to dopamine receptors:  Because
buspirone can bind to central dopamine receptors, a question has been raised
about its potential to cause  acute and chronic  changes in dopamine-mediated
neurological function  (e.g., dystonia, pseudo-parkinsonism, akathisia, and
tardive  dyskinesia). Clinical experience  in controlled trials has failed to
identify any significant  neuroleptic-like activity; however, a syndrome of
restlessness, appearing shortly after initiation of treatment, has been reported
in some small fraction of buspirone-treated patients. The syndrome may be
explained in several ways. For example, buspirone may increase central
noradrenergic activity; alternatively, the effect may be attributable to
dopaminergic effects (i.e., represent akathisia). Obviously, the question cannot
be totally resolved at this point  in time. Generally, long-term sequelae of any
drug's use can be identified only after several years of marketing.

>  They stayed for several months until I started taking vitamins and
> minerals.  I later pinpointed recovery to magnesium.  Subsequent blood
[quoted text clipped - 5 lines]
> neurological conditions, including epilepsy, have low magnesium so I'm
> not sure which causes which.

Can I assume from the above that you've been tested for other mineral
deficiencies also including iron and calcium?

>>> There appears to be a metabolic component but correction of various
>>> mineral imbalances has not resolved the symptoms.  Even so, I'm not
[quoted text clipped - 5 lines]
>> familiar, but I am not a doctor. Let's see what you have to say about the above
>> and we'll take it from there.

I'll say this, even though my own GP and neurologist display remarkable and
disappointing ignorance when I relate some of my symptoms to them, and that's
that you shouldn't be stuck with doctors simply shrugging their shoulders. Your
GP should have referred you to an appropriate specialist. There are standard
tests for epilepsy, if that is to be definitely ruled out, which include an
overnight stay in the hospital while wired up to EEG equipment. CT-scans and
MRI's are performed to determine if there is any physical brain damage,
malformations, or tumours. It would be interesting to know what those would
show, but cost control at your HMO might be holding them back. Maybe you need to
push them if you haven't already done so.
Actor123 - 05 Aug 2006 00:44 GMT
> >>> Can anyone tell me if what I am experiencing might be epilepsy.  My GP
> >>> is stumped and the HMO neurosurgeon said it wasn't epilepsy because I
[quoted text clipped - 30 lines]
> as there is considerable overlap in drug treatment. Do remember though that I am
> not a doctor and could easily be overlooking something.

Well, I guess my original question still stands.  Do people with
epilepsy have "downtimes" in between the seizures when they are symptom
free, or do some symptoms remain, just in a more subdued manner.
Basically, all the descriptions of epilepsy seem to describe the
seizures themsleves, but don't tell me anything about what happens in
between seizures.  Since I know that diagnosisng neurological
conditions is often about patterns more than a simple symptom list, I'm
curious to find out the patterns of epilepsy, not just what they look
like when they are in active seizure (since arguably the seizures at
least resemble "small" epileptic seizures)

> > At times when the "neurological overload" is at its worst, I am
> > extremely sensitive to sensory input, especially noise.  Even a normal
[quoted text clipped - 25 lines]
> I had wondered if there would be any similarity even though there were a lot of
> differences.

I suppose there are some similarities, but honestly I can find
similarities in a lot of different neurological conditions as well -
epilepsy, migranes, etc.  The difference being that I always seem to be
missing a major symptom of these diseases - epilepsy without grand mal
seizures, migrane without a headache, etc.

> >>> Its been several months and I'm barely able to function.
> >> That makes it sound as though this is something fairly new and recent. Is it?
[quoted text clipped - 10 lines]
> it? Had you been treated for your anxiety with other prescription drugs in years
> prior to the use of Buspar?

Nothing before and nothing since.  My anxiety was never that severe.  I
shouldn't have gone on the Buspar at all.

> I'll offer the following, very definitely NOT as an attempted diagnosis, but as
> simply food for thought:
[quoted text clipped - 34 lines]
> Can I assume from the above that you've been tested for other mineral
> deficiencies also including iron and calcium?

Yes, I came back deficiency in magnesium and vitamin d (despite good
calcium levels).

> >>> There appears to be a metabolic component but correction of various
> >>> mineral imbalances has not resolved the symptoms.  Even so, I'm not
[quoted text clipped - 16 lines]
> show, but cost control at your HMO might be holding them back. Maybe you need to
> push them if you haven't already done so.
partials - 05 Aug 2006 03:57 GMT
<snip>

>> After reading over your additional information, I'm forced to conclude that your
>> condition really can't be what we call "epilepsy" and the symptoms don't fall
[quoted text clipped - 14 lines]
> like when they are in active seizure (since arguably the seizures at
> least resemble "small" epileptic seizures)

I can appreciate your quandry in attempting to understand your condition. Let's
hope that some other people will join in here and share their viewpoints with you.
Malcolm - 05 Aug 2006 10:21 GMT
>> Well, I guess my original question still stands.  Do people with
>> epilepsy have "downtimes" in between the seizures when they are symptom
>> free

Obviously yes, as 1 in 3 people with TLE commit suicide (current
population rate  = 1.4%, TLE rate is 25 times higher).

Signature

Malcolm

Actor123 - 06 Aug 2006 01:51 GMT
Actually, by "downtimes" I meant symptomless periods or at least
dramatically reduced symtpom times.  I'm basically experiencing some
sort of seizure activity nearly 24 hours a day, even just muscle
twitching.  Do epileptics also have symptoms 24 hours a day, or is it
marked by discrete, intense activity followed by normal?

> >> Well, I guess my original question still stands.  Do people with
> >> epilepsy have "downtimes" in between the seizures when they are symptom
> >> free
>
> Obviously yes, as 1 in 3 people with TLE commit suicide (current
> population rate  = 1.4%, TLE rate is 25 times higher).
partials - 06 Aug 2006 03:20 GMT
>>>> Well, I guess my original question still stands.  Do people with
>>>> epilepsy have "downtimes" in between the seizures when they are symptom
[quoted text clipped - 4 lines]
> Actually, by "downtimes" I meant symptomless periods or at least
> dramatically reduced symtpom times.  

Yes they do. Seizures are periodic events and not continous ongoing ones. An
exception to that is where a person goes into "status epilepticus" ("status" for
short) where the seizures are ongoing. Unless medical measures are applied
quickly in that state to end it, it can be fatal. Even that is brief and
discrete in relative terms and does not last for hours. There can be other
exceptions naturally, but nothing such as you've been describing.

> I'm basically experiencing some
> sort of seizure activity nearly 24 hours a day, even just muscle
> twitching.  Do epileptics also have symptoms 24 hours a day,

They do not. If some did, then it would be documented and you would see it among
the various descriptions.

> or is it
> marked by discrete, intense activity followed by normal?

Yes. You have that basically right.
Sofia - 07 Aug 2006 23:58 GMT
>>> Well, I guess my original question still stands.  Do people with
>>> epilepsy have "downtimes" in between the seizures when they are symptom
>>> free
>
> Obviously yes, as 1 in 3 people with TLE commit suicide (current
> population rate  = 1.4%, TLE rate is 25 times higher).

OMG! Oh Malcolm, you really shouldn't have told me that, now you've really
given me the twitches! :-)

Sofie

Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Malcolm - 08 Aug 2006 10:51 GMT
>>>> Well, I guess my original question still stands.  Do people with
>>>> epilepsy have "downtimes" in between the seizures when they are symptom
[quoted text clipped - 5 lines]
>OMG! Oh Malcolm, you really shouldn't have told me that, now you've really
>given me the twitches! :-)

I'd better keep my mouth quiet about SUDEP then.
Signature

Malcolm


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