> YUK.
> I had been doing very nicely for many years, coming off a lot of the
[quoted text clipped - 23 lines]
> --
> Malcolm (***understandably fed up*** after about 10 years seizure-free)
>> Malcolm (***understandably fed up*** after about 10 years seizure-free)
>**G* I don't understand this part-- would you rather *not be seizure
>free for the last 10 years? My last was June 1998, using the same
>meds. you are above.
no - just fed up with the sudden plunge back into seizures after ten
years without them.
> Many people who used to post here were not controlled and had 1-4
>seizures per month that they were having a H** of a time getting under
>control... My reply here->
it took me 20 years to get mine controlled from my daily CP blast, but
only at the expense of drugging it into submission
> You realize Dave or someone will get at you for called Seizures 'a
>disease'. Polio is a Disease? Epilepsy has multiple causes and affects
>multiple areas of the brain (not just our Complex Partial types). It is
>not contagious, nor is there a blood test or other than e.g. EEGs or
>MRIs that show the footprint of the seizures, but not a change to blood
>or lymph? systems that might be present if it were a 'disease'.
Disease (noun) 1 any abnormal condition that impairs the structure or
functioning of a living organism, that can be identified on the basis of
specific signs and symptoms and that is caused by factors other than
injury, eg. infection, genetic defects, exposure to toxic agents, or
whose cause is unknown.
(Chambers Combined Dictionary, 1995, p370)
> I thought you were in the UK? But I also thought that the equivalent
>'over there' to my Tegretol CR (Controlled Release) was called Tegretol
>Retard? Did you ask the Doctor if there is a Generic Version
>available yet and if it is one he'd **recommend for your type of TLE?
In the UK the state of our NHS means our meds come from wherever it's
cheapest ATM for the pharmacist/health service to purchase it. My
carbamazepine came from Greece, and the clobazam from France (Urbanyl),
and there's no guarantee from script to script where the next will
originate.
> Both the Frisium (Clobazam) and Tegretol are medications that should
>*not be stopped abruptly or reduced without the Dr. being involved, as
>prompt stopping of either could increase? risk of (what I call) Recoil
>Seizures caused by the prompt withdrawal.
That's why I spent so long getting virtually med free, and I was left
with just 5mg clobazam to remove...*** with the doctor involved**
> (I use only 400mg Tegretol CR each AM with 10mg Frisium, and Frisium
>at night.)
>
> I don't have an opinion whether either of those is 'a Benzo' and
>why that would matter.
Benzodiazepines are very addictive (as I found out) and rottenly
sedative.
> If it *works for you and controls or greatly
>reduces types of CP seizures you have, then I'd use whatever I need to
>get rid of those awful CP seizures I had 1993 to 1997-- little or no
>aura or warning of onset, waking up in Emerg. and feeling somehow
>guilty that I wasn't able to 'snap out of it' and achieve full control
>without using pills.
Quite. That's why I need to sort out a Carbamazepine supply before the
increased clobazam level grabs hold too hard again (you'll read lots of
conflicting info on clobazam, but try the giant www.Drugs.com database
for a detailed breakdown of long-term side effects).
> Some places in North America have either insurance companies (often
>group policies bought by an employer, groups of employees as a block,
>or reduced in price by prescriptions being made available through that
>route). I don't know if the same would apply where you are.
nah - you can only legally get it by prescription here and if I ask my
doctor to help I'll be banned from driving, just like a drunken Saturday
night driver who wipes out pedestrians on their intoxicated route home.
..s..
> While I think of it, if you hadn't seen a post I did about a year
>ago, do *not use Grapefruit Juice or any juices which contain it with
[quoted text clipped - 3 lines]
>digestion of the pill without upsetting stomach acids etc. as it's
>absorbed into your system. I hope some of that helps.
Cranberry juice has been flagged for that recently as well.
> Are you the Malcolm who is/was also the Teacher? I wondered too if
>you found that *Stress !!!! if you experience any while teaching or
>doing lesson plans, adds to your risk of auras or side effects? That
>was supposed to be another 'trigger' for TLE type of seizures in some
>people, along with lack of sleep.
I don't know of any UK teachers who aren't stressed out ATM. We even
have parents feeding their kids fish and chips through the school fence
because they disagree with the schools serving healthy food - how's that
for undermining respect? Supportive buggers, aren't they?
But that doesn't get me any closer to a reliable supply of Tegretol
(from any country). Offers please?

Signature
Malcolm
howdydave - 16 Sep 2006 18:15 GMT
> >> Malcolm (***understandably fed up*** after about 10 years seizure-free)
> >**G* I don't understand this part-- would you rather *not be seizure
[quoted text clipped - 100 lines]
> --
> Malcolm
Howdy Malcom!
There are no assurances that Tegretol will work FOR YOU.
My 2 p. would be: "You can't argue with success"
and advise to go back to what was working.
Dave
<snip>
> You realize Dave or someone will get at you for called Seizures 'a
> disease'.
<snip> G./
Howdy G!
I can't get on Malcom's case because he uses those
funny dictionaries from England with different definitions
in them! ;->
Dave
partials - 16 Sep 2006 18:37 GMT
> <snip>
>> You realize Dave or someone will get at you for called Seizures 'a
[quoted text clipped - 7 lines]
> funny dictionaries from England with different definitions
> in them! ;->
Here's one a little closer to home from a *medical* dictionary.
Main Entry: dis·ease
Function: noun
: an impairment of the normal state of the living animal or plant body or one of
its parts that interrupts or modifies the performance of the vital functions, is
typically manifested by distinguishing signs and symptoms, and is a response to
environmental factors (as malnutrition, industrial hazards, or climate), to
specific infective agents (as worms, bacteria, or viruses), to inherent defects
of the organism (as genetic anomalies), or to combinations of these factors.
http://www.nlm.nih.gov/medlineplus/mplusdictionary.html
It's hard telling why people have the wrong notions as to the meaning of the
word disease.
G. - 22 Sep 2006 22:46 GMT
> > <snip>
> >> You realize Dave or someone will get at you for called Seizures 'a
[quoted text clipped - 20 lines]
> It's hard telling why people have the wrong notions as to the meaning of the
> word disease.
I didn't use a dictionary. I usually regarded a disease as
'something you could catch' from someone else-- I guess that would be
'infectious'.. (I encountered a few people at that time who were afraid
they could catch it from me, and I had to educate them about why the
infection was no longer active, although damage it caused was present.)
I even have a pretty good idea when I was infected (**above),
although the mosquito that was carrying the encephalitis was killed, as
it infected me. (It was ~3+ weeks before I knew where I was, or was
told what tests had shown.)
Since the only part of above definition that comes close to the
source of my seizures is the word 'viruses', as encephalitis I had in
1979 preceded seizures by 12.5 years. The virus affected Right
Temporal Lobe before it was treated, but damage was done.
The seizure onsets didn't happen until a series early 1993 to 1994,
and last one I had was late 1997.
So, am I still 'diseased' ? :-< G./
partials - 23 Sep 2006 02:10 GMT
>>> <snip>
>>>> You realize Dave or someone will get at you for called Seizures 'a
[quoted text clipped - 23 lines]
> 'something you could catch' from someone else-- I guess that would be
> 'infectious'..
Right you are. That's an *infectious* disease and is one, but only one, of the
alternatives listed above in the definition of the word "disease". Brain tissue
can be damaged due to other causes than an infection also. How about severe head
trauma, heredity, chemicals, and so forth. As such, the tissue is diseased and
causes symptoms of a disease including epilepsy.
> (I encountered a few people at that time who were afraid
> they could catch it from me, and I had to educate them about why the
[quoted text clipped - 7 lines]
> 1979 preceded seizures by 12.5 years. The virus affected Right
> Temporal Lobe before it was treated, but damage was done.
Yes, that's the point! Damage was done to the tissues of the body and they don't
perform their vital functions properly. They are *diseased*.
> The seizure onsets didn't happen until a series early 1993 to 1994,
> and last one I had was late 1997.
I think we all cheer at any success story and your success in controlling your
condition makes me feel good and gives hope to others that their conditions can
also be controlled.
> So, am I still 'diseased' ? :-< G./
Yes you are - and so am I and Malcolm and Howdy Dave. At least part of us is
diseased and it's the part that malfunctions and causes our seizures.