Posted by headachequeen on June 17, 2005, at 21:23:39
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 17, 2005, at 7:36:49
> Hi Kat,
>
> >soon as I add the tegretol, which is supposed to be the main anti-seizure med, back into the equation, everything goes completely out of whack...
>
> Perhaps the Tegretol is interacting with the clobazam and/or the Topamax. Tegretol seems to lower the blood level of Topamax in some people........and might theoretically decrease its effectiveness as a result. Also, Tegretol reduces the blood level of clobazam. Theoretically, this might result in withdrawal seizures. On the other hand, Tegretol increases the blood level of norclobazam - the active metabolite of clobazam. As a result, the interaction between clobazam and Tegretol is of undetermined importance.
>
> >the latest experience being this 'progression' to the fall flat on your face unconscious routine...
>
> Gosh!
>
> >I think it makes more sense to increase the topomax and the clobozam.......
>
> I agree :-)
>
> Kind regards,
> Ed.
Ed, thank you for this information..There is so much surfacing about the wretched stuff...
aspirin interacts with it to increase the effect of it enough to put a person into overdose mode, even enough to cause statis elepticus... and that can be fatal...
certain antibiotics cause an overdose reaction when blended with tegretol... bringing on dizziness, slurred speech, loss of concentration and focus, inability to carry on conversation because the person can not make intelligent speech patterns, inability to walk properly, tonic clonic seizures in some people, fugue states....
for that matter aspirin can do these things too...come to think of it, I remember hearing in the fifties that if aspirin had been discovered then it would be a prescription pharmaceutical but then it was too late to change it... no wonder!!!
some doctors claim that certain pain killers interact badly with tegretol...
it is a scary little thing!!!
but topomax and so far the clobazam have not done any of these things to me...
as long as I stick with them, I can do the things I love to do...
my writing, my photography, training, agility!!!!LOL, some tracking (I pick the train with some degree of intelligence) and I do not go wandering out into the middle of rivers and balance on rocks with my camera to try and get the shot I want... but it is a far cry from being unable to take a snapshot a few months ago...
I am even thinking of some gentle rock scrambling later this summer if the weather is not as hot as the past week or so... back-packing and hiking and overnight camping to get the early morning woods and water photos I want...
as in, LIVING!!!
it was not a thought last fall or summer...
and I had begun to think that only simple obedience training and beginner agility training and baby tracking classes were my future...
I did a serious tracking class with one of my girls and we aced it a few weeks ago (before the fall down on my face routine started and without tegretol of course but I did come home with a really bad lung infection... all that wet swampy weather :(
but I got through it and we passed a level that we only dreamed about a few years ago and did something I didn't dare dream of doing again because I had let this doctor and this condition convince me that I was doomed to a new life-style...
and tegretol had really pulled the pins out of the old life-style...
spent eleven hours shooting a wedding a month ago
and that of course was without tegretol...It reminds me of Superman and kryptonite....
It is interesting to note that, while I was on tegretol alone, and they kept increasing the dosage, I kept on having the seizures, often three times a week, sometimes twice in the same night...
as my husband is a lab technician for a firm that runs 365 days a year and 24 hours a day with the lab people on twelve-hour shifts unless this happened when he was at home, he didn't notice and this condition was controlled enough that until a year or so before he retired he had no idea I had epilepsy at all (I was born with it!!!)
Then there was a subtle change and tegretol came into the equation, when the drastic change occurred, there was the introduction of constant tests and more tegretol and with the increase in tegretol there was still no control...
when I mentioned my migraines, the neurologist tore up the prescription he was writing to increase the dosage, and wrote one for topomax and that seemed to somehow increase the control... no more two-a-night sessions anyway and sometimes a week or more between seizures for a while...
then something upped the ante and away we went...
and everyone was still trying to decide what to do and what to prescribe...
the clobazam was added and then increased following a roughly fourteen hour episode of statis early last winter... what an abuse to the body that is...
at the same time they cut the tegretol way back and increased the topomax slightly...
then slowly increased the tegretol... and the seizures returned...In hospital they cut off the teg entirely for 24 hours, then reintroduced it at a moderate dose 400 mg and I had two seizures that night... despite the topomax and the newly introduced clobazam... so right away they started to up the clobazam...
it seemed to me that someone should have thought right then of taking away the tegretol, but instead, they cut it off for another 24 hours and started again with the same result, this time with a severe seizure...
well, seems to me that if they can't put it together, they should have asked me for advice...
actually they didn't need to; I kept offering it for free...however, at this point I am seizure-free since the morning I came to with no idea who what and where and that is the way I plan to keep it, and I am going to the appointment on Wednesday next ready to fight for my rights for a different medication and some sound answers as to what is happening...
otherwise, it is a new doctor and something that will work for me...
and someone who is available when there is an emergency, not someone who arranges to fit me in six months after my system goes into frenzy...every time I walk down town and pass the place where I had that first fall, and see that metal pillar that holds up the (we would call it 'porte-cochere', where cars are covered to let passengers disembark in snow and rain and stay dry), and remember that my head was a mere couple of centimetres from that steel and how blessed I was not to have my face smashed into the pavement or my head smashed into that pillar...
no I want something done to give me freedom to live my life and do what I do best, and to do it now while I am young enough to enjoy it...
Flirting with death because of this thing twice within six months is pushing it too close for me...So much for living a calm and tranquil approach to life and not being angry... my reiki master might not approve, but one has to take control of one's own treatment or one is simply shoved into the corner while someone else gets the answers...
In the meantime, I keep looking for information and compiling my list of questions for him and keeping my calendar for him...
easier to mark the days there were no seizures since I saw him in December :(and I appreciate any info the people here can provide... every thing is so much help...
and the support here is such a blessing...thank you, Ed you knowledge of the interactions is very helpful...
Extremely so
kat
poster:headachequeen
thread:5053
URL: http://www.dr-bob.org/babble/20050617/msgs/514609.html