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Medical Forum / Diseases and Disorders / Epilepsy / June 2009

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Change in symptoms

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Jerith - 09 Jun 2009 16:45 GMT
This is a general question to anyone whom may check this group.

So I was diagnosed that I have partial complex seizures. Lamotringine
(Lamictal) is doing the trick quite well now for the past 1.5 years. Took
them 6 months to nail down the exact dosage after I flipped from Dilantin.
This is all after them realizing what I had, but only after they tried me on
Ativan and Paxil, thinking I had depression. The Paxil triggered a full
seizure and then they clued in. I just didn't have the vocabulary to explain
my symptoms. So, there goes my drivers license for 1 year. Which was not
that bad. Got me out of a ton of work at home, and my job.

But anyways, I've been a pot supporter until I was 27, then a pot smoker
finally. Having that distinction gave weight to my pro stance on the issue.
So, my symptoms didn't show up until I was about 33, which is commonly when
most cases of complex partial seizures show up in men. Who knows when I got
that bang to the head or whatever.

We found that I had to start out with a dosage higher than the norm. Until
we worked our way up to my dosage, I was only having seizures at work, and
only ever once at home. Because, I would smoke some pot a little bit after I
got home, before dinner. We kept at the high dosage but I was afraid about
the possible effects it would have on my liver, as is noted as a side
effect. We lowered my dosage and still kept seizure free. Until I was unable
to get my regular supply of pot. I began getting some hints of possible
seizures. An aura if you will, but with no follow up of a seizure. It seems
as if the marijuana supplements the medication. I like this because its like
a sure-fire way to make sure of no seizures for a good 12 to 14 hours, way
after I lose my high (3-4 hours).

Of course I don't smoke before work as that would impair my reactions and
fine motor skills needed for the occasional heavy equipment I operate. I
also take my medication twice daily so its always at a even level. But the
fact remains that at work, I'd have a seizure. But never at home. For more
than one year.

So who else has similar experiences like this? I know I'm not alone as
medical marijuana gives positive effects for the poor people who have the
grand mals. I totally sympathise with them, but know that doesn't come near
enough to whose who live with it.

I'm absolutely terrified of telling my doctor of my usage because of the
possible fallout afterwards. So thats why I'm soliciting some information
from anyone on here. Some real personal experiences would help me find out
how to help me cope but not abuse it.

Thank you for any responses.

Jerith
G. - 11 Jun 2009 04:12 GMT
>     This is a general question to anyone whom may check this group.
>
[quoted text clipped - 44 lines]
>
> Jerith

Hi.  I don't have experience w.r. to m.j. and complex partial control,
but was first put on Dilantin for 1+ years. When it didn't work my
Neuro changed me to 2 other medications (over about 3 years) until we
got a 'mix' that worked (Tegretol and Frisium in my case).
   My Doctor told me at the time that we're often started on Dilantin
as it's Older, longer studied so most of the potential side effects
and efficacy have been studied since about 1940? when it was first
used. So if it *had worked for you it's cheaper to use and better
studied so they could watch for side effects, etc.
  At one point (for about a year) he also prescribed Ativan
sublingual  -- a 'quick fix'  med that dissolves under the tongue that
helped when I got the Aura suggesting a stronger szr. might be about
to start.   It worked well for that, until I got a 'mix' that worked
to control my Complex Partial seizures.   Was that the type of Ativan
you meant?

    We had a Neurologist who used to post from time to time and might
have a Medical 'suggestion'  (not to be necessarily construed as
Direct medical advice wrt. using the other stuff with what you
take).   Several of the 'regulars' haven't posted for some time here,
so replies might be erratic to none.
   I had about 5 websites (subject something like 'Websites of use to
newer people')  if you want to search it out on this group's history.
Or if you can't *find it, repost here, and I'll see if I have an olde
copy still I can cut and paste into these threads.   **None of the
links I had had information about m.j., but had stuff like a
Medications Glossary (similar to what you should have from your
Pharmacy), First Aid for Seizures (on land or in water-- swimming),
and some other sites that were active in late 1990s.  (I haven't
checked those for quite a while so some might not even still be
active.)
    This is an International Group that once had 20-30 active members
in about 12 timezones, so was a good way to exchange information with
others around the world.    It started to become a Spambot Heaven in
early 2001-3 time period, so many regulars either *left, or just
stopped posting, or moved off to other groups or sites.   (I don't
have the addresses of those since when I was newly diagnosed (late
1990s  :-o  )  this was an excellent place to start.
   You could check in here from time to time over next week or so to
see if others are still reading the group and have experiences or
replies to share.   I'll look through my older bookmarks later
tomorrow to see if I still have any links that might be of some use.
   The U.S. Ep. Foundation main site used to be http://efa.org  and I
think had a Search function you could try enter search fields on to
see if there's anything *current that's of use to you.  *Or there's
Google if you can decide what search items might work to bring up old
posts on 'all groups'  that might not be in the history here.  (In
case you haven't used Google, you refine a Search using '&' without
spaces to bring in less than several thousand hits (!!!)  like
'seizures&marijuana&sideeffects'  or just the first 2.  Google will
try find items of *most use to you and sort them the way it thinks
works best from most likely to least likely. I found that often the
first *5 or so are all that are accurate, and after that the
likelihood of useful information on searches drops off rapidly.
    There are likely other search engines around too, but most of the
early stuff I needed I found with above type search and *this group.
Too bad that Trolls and 'varmints'  from 'away' corrupted the original
intent of the group, as it was *really helpful and had lots of people
and information available when it was most active.       G./
Jerith - 12 Jun 2009 17:07 GMT
Thanks for your response.

I totally forgot that I had tried Tegretol before the short stint I had with
Dilantin. The Tegretol affected my behaviour and attitude too much. My neuro
knew that Dilantin had been around for ages but thought Lamictal would be a
good one as it had been introduced for about 8 years and the short time side
effects had been minimal. The tegretol. About a year after I started, during
a bi-annual checkup he told me that the long term effect studies had mostly
been completed and things looked good for the future.

Luckily I have good 100% prescription coverage with my works medical plan.
The first few hundred dollars of initial investment was worth it as the
return just pays for the next 3 month supply.

The Ativan dosage I tried was the normal drink with water type taken daily.
After I returned all my left over supply to the pharmacy I learned that
Ativan has a black market. Stupid teenagers or other abusers (in my opinion)
take some for that dizzy effect you get if you take a little too much. Like,
5 bucks a pill? That reminds me of the chloroform parties that took place
earlier this century.. well.. last century, for that same effect.

Thanks for your insight and pointers to those websites.

Take care,

Jerith

On Jun 9, 11:45 am, "Jerith" <jeri...@hotmail.com> wrote:
> This is a general question to anyone whom may check this group.
>
[quoted text clipped - 54 lines]
>
> Jerith

Hi.  I don't have experience w.r. to m.j. and complex partial control,
but was first put on Dilantin for 1+ years. When it didn't work my
Neuro changed me to 2 other medications (over about 3 years) until we
got a 'mix' that worked (Tegretol and Frisium in my case).
   My Doctor told me at the time that we're often started on Dilantin
as it's Older, longer studied so most of the potential side effects
and efficacy have been studied since about 1940? when it was first
used. So if it *had worked for you it's cheaper to use and better
studied so they could watch for side effects, etc.
  At one point (for about a year) he also prescribed Ativan
sublingual  -- a 'quick fix'  med that dissolves under the tongue that
helped when I got the Aura suggesting a stronger szr. might be about
to start.   It worked well for that, until I got a 'mix' that worked
to control my Complex Partial seizures.   Was that the type of Ativan
you meant?

    We had a Neurologist who used to post from time to time and might
have a Medical 'suggestion'  (not to be necessarily construed as
Direct medical advice wrt. using the other stuff with what you
take).   Several of the 'regulars' haven't posted for some time here,
so replies might be erratic to none.
   I had about 5 websites (subject something like 'Websites of use to
newer people')  if you want to search it out on this group's history.
Or if you can't *find it, repost here, and I'll see if I have an olde
copy still I can cut and paste into these threads.   **None of the
links I had had information about m.j., but had stuff like a
Medications Glossary (similar to what you should have from your
Pharmacy), First Aid for Seizures (on land or in water-- swimming),
and some other sites that were active in late 1990s.  (I haven't
checked those for quite a while so some might not even still be
active.)
    This is an International Group that once had 20-30 active members
in about 12 timezones, so was a good way to exchange information with
others around the world.    It started to become a Spambot Heaven in
early 2001-3 time period, so many regulars either *left, or just
stopped posting, or moved off to other groups or sites.   (I don't
have the addresses of those since when I was newly diagnosed (late
1990s  :-o  )  this was an excellent place to start.
   You could check in here from time to time over next week or so to
see if others are still reading the group and have experiences or
replies to share.   I'll look through my older bookmarks later
tomorrow to see if I still have any links that might be of some use.
   The U.S. Ep. Foundation main site used to be http://efa.org  and I
think had a Search function you could try enter search fields on to
see if there's anything *current that's of use to you.  *Or there's
Google if you can decide what search items might work to bring up old
posts on 'all groups'  that might not be in the history here.  (In
case you haven't used Google, you refine a Search using '&' without
spaces to bring in less than several thousand hits (!!!)  like
'seizures&marijuana&sideeffects'  or just the first 2.  Google will
try find items of *most use to you and sort them the way it thinks
works best from most likely to least likely. I found that often the
first *5 or so are all that are accurate, and after that the
likelihood of useful information on searches drops off rapidly.
    There are likely other search engines around too, but most of the
early stuff I needed I found with above type search and *this group.
Too bad that Trolls and 'varmints'  from 'away' corrupted the original
intent of the group, as it was *really helpful and had lots of people
and information available when it was most active.       G./
 
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