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Medical Forum / Diseases and Disorders / Epilepsy / July 2005

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Tegretol alternatives for ADD and social anxiety symptoms

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bill.harned@gmail.com - 08 Jul 2005 00:23 GMT
Hi I have been taking Tegretol for 5 years now.  I have had a handful
of grand mal seizures and did not have my first one until 5 years ago,
when I was 19.

I have petit mal seizures often.  I often have trouble hearing what
people are saying to me.  It's like I'm not tuned in to speech or
something.  Do you think this is epilepsy or more dyslexia or anxiety
or perhaps ADD?  Thanks for any help.
G.Ross - 12 Jul 2005 03:29 GMT
> Hi I have been taking Tegretol for 5 years now.  I have had a handful
> of grand mal seizures and did not have my first one until 5 years ago,
> when I was 19.
>
> I have petit mal seizures often.  I often have trouble hearing what
**************************************************
> people are saying to me.  It's like I'm not tuned in to speech or
> something.  Do you think this is epilepsy or more dyslexia or anxiety
> or perhaps ADD?  Thanks for any help.

  Were you having those symptoms before you were using Tegretol?   I
haven't seen that as being either a side effect, mentioned here, over last
~7 years, or by any of us who use it for Temporal Lobe (Complex Partial)
seizures.  (I've used it since 1994.)
   There are people 'around here'  who have Grand Mal seizures, but none
have responded to the original message you put up.   It would appear none of
them have that symptom either.

   Did you have those symptoms going back the full 5 years you've been
using the Tegretol?  I had thought that any side effects that a Med. might
cause would show up in first 2-6 months of use?   So if the hearing symptoms
happened the same way, the problems would have shown up when you were first
using the Tegretol?
   (Some things can interfere with Tegretol, listed under its write-up
under http://efa.org   medications directory, or other sites.  Some of the
sorts of things that interfere with Tegretol include Alcohol, Grapefruit
Juice,  some upset stomach remedies.   You could also ask the treating
Doctor if you see them fairly often if they've heard of that being a side
effect.   As I said earlier, I didn't reply sooner since it wasn't a symptom
I had seen from info. I got from my Pharmacy, or on this group.).    G./
Jim Garland - 15 Jul 2005 19:35 GMT
Hi
I have been taking tegritol for over 15years and I too often have what I
refer to as my tegritol FOG!!
 My symptoms are more severe if I am run down or tired...or Stressed!!!
I often have trouble focusing and jump quickly from one thing to the other
and forget like crazy...plus slurred speech and tired as hell.>
So yes all of the symptoms that you mentioned are what at least this
tegritol user gets..and I never had these prior to being diagnosed and
medicated!
Cheers and remember
you have epilepsy ....epilepsy doesn't have you!!!!!!!!!!!!!

> Hi I have been taking Tegretol for 5 years now.  I have had a handful
> of grand mal seizures and did not have my first one until 5 years ago,
[quoted text clipped - 4 lines]
> something.  Do you think this is epilepsy or more dyslexia or anxiety
> or perhaps ADD?  Thanks for any help.
gomper - 16 Jul 2005 10:12 GMT
> Hi
>  I have been taking tegritol for over 15years and I too often have what I
[quoted text clipped - 5 lines]
> tegritol user gets..and I never had these prior to being diagnosed and
> medicated!

Hi. I also used to have those
symptoms, starting about the time I was switched to Tegretol (Retard,
that is). Still, after switching again, this time to Orfiril Retard
(can't remember the American name) seven years ago, the symptoms
wouldn't go away. Guess this means one of two things: 1) Orfiril leads
to the same symptoms or 2) it wasn't due to the medical treatment at
all. (Or if you wish, 3: Tegretol made these changes in me, and they
will never go away again.)

cheers,
ole k
G.Ross - 16 Jul 2005 15:43 GMT
>> Hi
>>  I have been taking tegritol for over 15years and I too often have what I
>> refer to as my tegritol FOG!!
*** Hi, the history file for this thread has dropped off my server.  Did
they give you a 'name' for the 'Seizure Type' when they first prescribed the
Tegretol (usually XR, CR, or Retard) ?   Usually that's prescribed for
Complex Partial (formerly Temporal Lobe) based seizures. Some symptoms (like
the 'fog')  can be part of the seizure *type, *or can come during periods
where dose level is temporarily higher in the blood?  That's why the CR
versions are often used now, since they can use a lower dose, taken at a
consistent rate, each day.   That keeps blood level stable if they can
manage that.
  (Some things interfere with Tegretol.  The Pharmacy should have included
those, or there's a Med. Glossary under the U.S. Ep. Foundation site
http://efa.org  .  You either type in the Name, or scroll to the med., click
Find or Search, to get a one page printable page. *Grapefruit Juice has an
acid in it that interferes with Tegretol levels that's not in other juices
usually.  And Alcohol can interfere with some people's blood levels, by
flushing the med. faster than expected under normal use.  I found I got the
'fog'  sensations during periods when I was above my Therapeutic level,
until we found one that worked. A 'drunken' sensation can come from the same
cause. )  /

>>   My symptoms are more severe if I am run down or tired...or Stressed!!!
*** Being over-tired or under stress can lower our seizure threshold (for CP
Seizures at least) and allow a szr. to happen more easily.   During some of
those times, it's the fatigue that makes the szrs. easier to happen and not
necessarily *just  whatever the Medication is that we're using.  /

>>  I often have trouble focusing and jump quickly from one thing to the
>> other and forget like crazy...plus slurred speech and tired as hell.>
*** Slurred speech used to mean the Blood Level is temporarily too High.
That's why the CR or XR is often used to try balance the levels.
**Forgetting things may be a product of damage or seizures happening in one
of the *Temporal Lobes of the Brain.   (That's the short-term memory buffer
where new learning goes first before it gets stored into longer term memory.
So the *forgetting part can be a part of the original cause of the szrs. and
not always due to the Med.)  /

>>  So yes all of the symptoms that you mentioned are what at least this
>> tegritol user gets..and I never had these prior to being **diagnosed and
>> medicated!
** See para. above -- *could they be from the *cause, I listed, and not
necessarily the Med.? /

> Hi. I also used to have those
> symptoms, starting about the time I was switched to Tegretol (Retard, that
[quoted text clipped - 4 lines]
> wish, 3: Tegretol made these changes in me, and they will never go away
> again.)
*** Not being a Dr., just someone using Tegretol CR for Complex Partial
seizures,  I'd vote for *2 in your list.   *Neither of your meds. (in my
opinion)  is Causing the symptoms, but may be reducing the number of
seizures you are having?   I've never seen any writeups 'here' since 1998
where Tegretol 'caused'  the problems.    But what if you had the Symptoms
FIRST and *neither Tegretol nor your Orfiril is *yet giving you 100%
control?   Could it be that too?
   Are you getting More control (so *less seizures per month?)  than you
had Before you were using those?  My seizures (especially what I called the
'surprise ones'  that would come on with No Aura or warning like I had when
first Diagnosed 1993-5)  went down from 8-10 per month to 2-3, to one each
2-3 months,  to less frequent.
   With the CR version and a second med.  I was told to 'hope for'  2-3
seizures or *less a month.  Last 2 I had were Dec. 1997,  June 1998.   As I
got near the 'target' dose for my type of szr. and metabolism,  I also had
less and less Auras (I hated Worse! since they often meant a szr. was on the
way),  and haven't had any that I can remember for several years now.
(Auras are a dizzy swirling feeling, sometimes with a Deja Vu or Jamais Vu
feeling, where you can feel strangely out of balance but not collapse during
them.)
   I have periods when no one is around me to witness anything, like an
Absence seizure happened (where I'd stay *awake but not *conscious of what I
was doing = Petit Mal type).   I had a few times where I've found 'strange
writing'  that I knew was mine, though harder to *read than my normal
'doctor's script' --> that I suspect were Simple Partials or Absences during
that last 5 years.  Those have decreased from ~5-6 a year to very few (0-2
per year), in case you get any of those.

   I get the odd 'mood swing'  when the weather is changing (air pressure
dropping as storms move in),  but those are less extreme too.
   (I mostly wanted to repeat the Grapefruit thing, plus Alcohol, using
*Tegretol since those had not been included in my Druggist's Warnings at the
time (they are now since I took them printouts I had found 'here' or on
internet searches I did then.   I *don't know anything about things that
might interfere with Orfiril Retard--  if it's *not listed on the efa.org
site mentioned above, see if there's a 'Pharmacist's name'  printed on the
Prescription Bottle to try.  Tegretol, for example, is Carbamazepine in a
Pharmacy Directory if it's not found using 'Tegretol'.  OR ask your Pharmacy
if they have a Printout or Website they can give you for your particular
pills.   )
  I hope that might be of use.  (*Note spelling of Tegretol if you want to
search that name.) G./

> cheers,
> ole k
Jim Garland - 18 Jul 2005 15:38 GMT
Thanks GRoss
I wasn't looking for an explanation or an interpretation of my symptoms or
nor was I looking for your input on grapefruit and the negative conter
effect that it has on a lot of anti siezure meds..
  I was simply trying to help a person that wrote on this website and was
searching" obviously:" for someone that may understand what he /she is
feeling like....

 FYI>..
I am on CR and understand very well the counter effects or stress and lack
of sleep etc..etc..on lowering one's threshold of haivng a siezure...
 Please in the future if you respond to me or anyone else can you simply
add a footnote that this is your suggested information and opinion...
ok   ; )
Most of us aren't looking for someone to diagnose us or make assumptions of
what can effect these terribly harsh drugs that we all have to take....We
are simply" or at least in my case"....trying to touch base with someone
that has a similar problem that we have and maybe ,,....just maybe can
relate to how we feel and what we go through on a daily basis...

Cheers and as always..
Chin up.

>>> Hi
>>>  I have been taking tegritol for over 15years and I too often have what
[quoted text clipped - 95 lines]
>> cheers,
>> ole k
G.Ross - 18 Jul 2005 18:45 GMT
 This is a Public Usenet Group that's read by 3-500 people who don't post
here.   When I reply to some messages,  I will consciously try to Generalize
them for others who may not want to Post to a Public Forum, but only *read
the group and may not be aware (eg. of the Grapefruit / Tegretol thing, I've
had 4-6 messages off-group about, over last *8 months) resulting from an
innocuous comment (mine), on that,  like the one you're commenting on below.

  If you knew about the symptoms when Tegretol was above therapeutic levels
(drunken feeling) or below therapeutic dose levels (auras or breakthrough
seizures),  you didn't **appear to?, with your listing of the "This might be
what I think is happening to me: 1, 2,  3 "-->   *2 of which were assuming
side effects or conditions that *don't happen with Tegretol use.

  I posted below (uncut by either of us until *now) to try to help whoever
had the *original questions and thread wrt. anxiety (emotions)  and CP
seizures, and included the Ep. Foundation site in case they needed Tegretol
Info. link/how to **Spell it correctly,  so searches don't come up blank.

Your post or the Original one (expired now)  had Misspelled it, within Body
of the message.
I've added a few other comments and cut some of the *9KB post below, and
marked mine (for me) with **s.    Since I can't tell (at 5th generation now)
if *you started this thread with above subject line or not, I've assumed
since you answered 'for the group' about 'how to post' that you did.

** In future, please save giving me instructions how to use a Public Forum
(see **s below).   If you don't want to read my replies, Please-- click
Next, and let the message expire. If I had intended the Reply to be for you
Only, I'd have emailed it to you. /  G./

> Thanks GRoss
> I wasn't looking for an explanation or an interpretation of my symptoms or
> nor was I looking for your input on grapefruit and the negative conter
***************************
> effect that it has on a lot of anti siezure meds..
>   I was simply trying to help a person that wrote on this website and was
> searching" obviously:" for someone that may understand what he /she is
*******************
> feeling like....
>
>  FYI>..
> I am on CR and understand very well the counter effects or stress and lack
> of sleep etc..etc..on lowering one's threshold of haivng a siezure...
>  Please in the future if you respond to me or anyone else can you simply
***************************************************************

G-  I assumed since you, or the thread starter, didn't know how to **Spell
"Tegretol" ?  (see below)  that you'd only used it Briefly before **going to
another Med. or hadn't used it at all.  Or if that was someone's Olde post
(that I mentioned at start of my reply it Could be),  I included the correct
spelling so they could search Usenet and get some hits, they wouldn't get
looking for 'tegritol'. /

> add a footnote that this is your suggested information and opinion...
> ok   ; )
**** G. *** Anyone who is Using Usenet would know that wouldn't they?  Or
did you not?

> Most of us aren't looking for someone to diagnose us or make assumptions
> of what can effect these ***terribly harsh drugs***  that we all have to
> take....

**G* My "Terribly harsh drugs" control my seizures 100% since 1997 (8
years).  You missed the post where at first diagnosis in 1993, I was told to
'hope for 2-3 CP Seizures per *month'.
Your use of phrases like that <*Terribly harsh drugs> above*,  suggested a
misunderstanding how a med. should be used correctly or a Bias that might
only be appropriate for a **small percent who are unable to **use that Med.
  Mine was a dissenting vote to show  'others', who might be newly
diagnosed, that there is variation in how successful a Med. might be **for
them**.  Each of us will react differently to a med.  /

We
> are simply" or at least in my case"....trying to touch base with someone
> that has a similar problem that we have and maybe ,,....just maybe can
> relate to how we feel and what we go through on a daily basis...
> Cheers and as always..
> Chin up.

**G* Many people newly diagnosed have not yet seen symptoms of the various
types of seizures, and feelings they might produce.   The Deja Vu sensation
is an Illusion produced by Right T.Lobe seizure focus.  I don't read minds.
If they describe sensations (auras)  that  they may not realize come from a
Seizure Type  [as opposed to the "terribly harsh drugs" you call them],  I
might give them some www addresses they hadn't seen already.

  Maybe, just Maybe I can relate to how they feel.  I've been in Court, the
cage of a Police Car, a Bus I didn't need, struck by a car, and Emerg about
6 times, from 1993 to 1998.
 While assuming you know how some of the *others here might want their
information delivered,  you seemed to assume that *I wanted to spend almost
an hour editing and inserting these 'explanations' **for you.  Lucky it's
hot and muggy out, cuz that's an hour plus *I'll never get back.

 Perhaps it's time this Thread expired.   At least I won't be reading it
again.    Older stuff below I had already added **s between 1130 and now (1+
PM).  I marked my inserts with **s so *I can edit them easier.  Some people
don't like that. Some people don't like Chocolate and Strawberries. /G

** G ** PERSON BELOW has had their Email or ID cut out by whoever edited
this  They are the ones who spelled Tegretol incorrectly, had used it for 15
years and had experienced the Brain Fog that some dose levels can bring on.
/
>>>> Hi
>>>>  I have been taking tegritol for over 15years and I too often have what
[quoted text clipped - 29 lines]
>>>>  I often have trouble focusing and jump quickly from one thing to the
>>>> other and forget like crazy...plus slurred speech and tired as hell.>

>> **G* Slurred speech used to mean the Blood Level is temporarily too High.
>> That's why the CR or XR is often used to try balance the levels.
[quoted text clipped - 18 lines]
>>> all. (Or if you wish, 3: Tegretol made these changes in me, and they
>>> will never go away again.)

>> *** Not being a Dr., just someone using Tegretol CR for Complex Partial

***G. ** I WROTE line ABOVE,  and QUALIFIES IT AS MY OPINION.   I would have
thought that was clear.  G./

>> seizures,  I'd vote for *2 in your list.   *Neither of your meds. (in my
>> opinion)  is Causing the symptoms, but may be reducing the number of
[quoted text clipped - 9 lines]
>>   I hope that might be of use.  (*Note spelling of Tegretol if you want
>> to search that name.) G./

>>> cheers,
>>> ole k

G./  CAUTION   Ici my suggested opinion.  It's why I used my OWN EMAIL
Addr.+ wrote my OWN MESSAGE myself,  so that it wouldn't be confused with
Mr. Bean or Albert Einstein's Posts here. (This will be the only time you
see this para. on this group, as it's silly.)  /    :-<
Mike - 17 Jul 2005 04:57 GMT
I've experienced similar symptoms since being on Tegretol.  One time my
doctor suggested trying to go off of the Tegretol (I had been a long time
seizure free).  I reduced my meds over 3 months down to none and as I
reduced the meds more and more of the symptoms you mention went away.  Once
off of them completely I felt like the old me (pre-seizures).  Unfortunately
I suffered another granmal a week or so later and went back on the drugs.
Since then I've had a temporal lobectomy and been seizure free for 4 years
or so and at some point I'll try going off the meds again but for now I'll
put up with the symptoms (I don't want to give up my motorcycle or driving
while I try to quit the meds)
Mike

> Hi
>  I have been taking tegritol for over 15years and I too often have what I
[quoted text clipped - 16 lines]
> > something.  Do you think this is epilepsy or more dyslexia or anxiety
> > or perhaps ADD?  Thanks for any help.
G.Ross - 19 Jul 2005 01:45 GMT
>> Hi I have been taking Tegretol for 5 years now.  I have had a handful
>> of grand mal seizures and did not have my first one until 5 years ago,
[quoted text clipped - 4 lines]
>> something.  Do you think this is epilepsy or more dyslexia or anxiety
>> or perhaps ADD?  Thanks for any help.

Did you say if you've had tests to see if you have seizures?  Those might
include EEGs and possibly an MRI if the Dr. has some idea where the seizures
might start from.  (The MRI looks for damage inside without needing surgery
to check for marks or blood clots, etc internal to the skull or brain.)
  The EEG involves sounds and flashing lights, while they have you wired up
to about 12 electrodes, and they try to trigger electrical activity they can
measure and see if it's 'unusual'  compared to normal brain waves.   A
seizure (large or small) has to actually be triggered for this one to
measure a location where there might be damage,  while the MRI (above)
doesn't need a szr. to see if there's damage inside.
  Both are usually used to determine type of szr. and therefore type of
pills which might work to control a particular type of szr. if that was
what's happening.   /G.
 
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