Posted by headachequeen on December 8, 2003, at 19:11:02
In reply to Re: topomax, posted by KLCH on December 8, 2003, at 15:10:11
> Hi. I am posting my 1st message. First of all, I was diagnosed with epilepsy 7 years ago while pregnant with my twins. I was put on tegretol. To deal with breakthrough seizures, my doctor periodically increased my dosage until I was eventually taking 1200 mg per day! The side effects were debilitating! I was unable to function in everyday life, let alone care for 18 month old twins. So I decided to slowly decrease my dosage until I was completely off the medication. My doctor was against this, but he was also against trying any other medication.
>
> For the last five years I lived medication free, but certainly not seizure free. I have an average of 3 seizures per month (usually just before my menstral cycle). Unfortunately, for the last 8 weeks the frequency and intensity of the seizures has increased. I think it is time to consider medication again. It is my understanding that topomax carries far fewer side effects than tegretol and could be very beneficial. Any thoughts?Oh I know there are going to be those who argue with me... and some with good reason I am sure...
but I am taking both meds...
so I sort of stand in the middle of the debate...
I was first diagnosed with epilepsy when I was expecting my second child... however my doctor at the time did not like the stigma that accompanied the ailment (interestingly enough my younger daughter has just been diagnosed with epilepsy, the same type as I, about six months after the birth of her second child... same GP who still does not like the diagnosis because of the stigma and still reacts the same way to it... she was taken to emergency and my GP happened to be in the emerg at the time and made the diagnosis and ordered the necessary tests but her GP is ignoring the results... talk about ostrisch syndrome.. we are trying to get the change of doctors arranged sigh)
My doctor at the time refused to accept the diagnosis even though he was the first to suspect it so for years it was a case of ignoring the whole thing until, following a change of doctors, the situation was recognised and I was put on Tegretol following a confirming diagnosis...
the initial dosage did not meet the seizures, so the dosage was increased... and increased...
when I mentioned migraines, at a time when the neuro was about to increase it again, he tore up the prescription and put me on Topomax on a slowly increasing dosage that I controlled following a prescribed increment...
there have been side effects to both I acknowledge...
and no one warned me of side effects to either other than that I would probably gain weight taking tegretol and that there was a weight loss potential for topomax... and the migraine control side effect for topomax too ( and it has done both... I have lost a lot of weight and had no migraines since January of this year when I began to take it...)
there have been side effects... dry mouth, dry hair and some others... some times I find it hard to be the articulate person I like to be and flatter myself that I am... however that is not limited to Topomax -- Tegretol is another villain there too...
drink lots of water with Topomax and it is not going to cause kidney stones...
take biotin in mega doses (2400 -2500 mg a day and your hair will not dry out or fall out...
take vitamin supplements and it will replenish the vitamins that Topomax eats up on you...recently the neuro made a mistake in rewriting the tegritol for me and doubled my prescription. I am at fault; I did not notice... the results were amazing and I blamed the topomax because it was convenient... the tegritol had never been cited as having side effects and had been around longer so it had to be safer, right? then I found a site with information on tegritol and I was stunned... even before I discovered the over prescription...
Under normal conditions if epilepsy can be said to be normal conditions, I take 400 mg a day of tegretol and 400 a day of topomax... for six weeks or so I was taking 800 of tegretol and I was unable to function... and blaming the topomax as I said...
I have spent the last couple of weeks weaning myself back to my 400 mg a day and experiencing symptoms again... so far no seizures as far as I know.. sounds silly I suppose, but my seizures happen when I am asleep and unless my husband happens to be awake when they occur or I happen to waken totally exhausted with the post-episodic reactions, then I cannot be sure that they happen... although some times I relive the same day for days at a time until someone tells me what day it actually is, then I know that I have had a seizure... and feel soooo stupid as a result...
however I am again experiencing the tingling in hands and feet and face that should be totally controlled and were totally controlled when the meds were working and I am really annoyed to put it mildly...
when I was on tegretol alone these often occurred as a side effect... and now they are back in full swing...The side effects of Tegretol are wonderful and amazing and at times frightening and totally annoying...
the pharmacist warned me of the weight gain potential as I said.. great... I was already overweight... just what I needed... more weight...
she also told me that I had to avoid exposure to direct sunlight as well as artificial sunlight, as Tegretol would increase skin sensitivity to the rays of the sun... wonderful ! I am a redhead and my skin is already ultra sensitive but we do what we have to and I wear long sleeves in the summer time and hope for the best...
The Tegretol made me even more clumsy than I already am and somewhat unsteady on my feet and made me somewhat dizzy when it wasn't making me drowsy lightheaded. Then there was the nausea, so my doctor prescribed something to stop the nausea and stomach pain as well as something to stop the dizziness...
Occasionally it caused diarrhea;
We can't overlook the dry mouth that came with it, so there was always a bottle of water in my jacket pocket or in my back pack... and then along came Topomax with the same dryness... more water... and Tegretol causes loss of hair I learned recently, not just the Topomax which got the blame when it is sort of a shared villain...There was a constant dry cough and shortnees of breath that came with the Tegretol and I found it actually painful to breathe at times... great for a person who is already an asthmatic, let's add to the pain of breathing.. which is more important? breathing or controlling the seizures???
Enter swollen or painful glands and a wheezing in my chest... began to sound like an old traction engine... wonderful...My vision blurred at times and other times I had double vision to deal with... then there was the difficulty in speaking or slurred speech -- for a person who prides herself on her speech patterns and articulation this was not good...
I mentioned the numbness, and tingling in my hands and face,then sometimes there would be actual pain in my hands and feet; at others my hands would not be able to do the things I thought they should.. I could not make my right hand hold a book or I would try to write my name.. a simple thing I have done all my life but the pen would not follow my commands...
and the weight gain oh the weight gain...
and the uncontrolled body movements, again the right arm would develop these tics that were all its own doing... and the
ringing and buzzing in my ears
... many of these things still occur...
some of them have lessened with the split dose of Topomax and Tegretol...
some were out of control with the 800 mg of Tegretol and I hope will diminish now that we are back at 400 of Tegretol daily...
I suppose the alternative, a return to seizures and all that means, is not a great one and certainly not one that I choose to take at this point, but I have to confess that given the choice between the side effects I have experienced so far on Topomax, I am considering asking my doctor to switch me to it exclusively or perhaps a higher dosage of Topomax and lower of Tegretol...
or maybe there is something out there that can replace the Tegretol entirely??? and work with the Topomax...
amazing isn't it? a little information about side effects and I decide that I know it all and want to prescribe my own course of treatment..
but if I could get rid of these tics and quirks and the buzzing and the tingling...
oh and I forgot to mention that at one point they looked into MS as a possibility as a cause for some of the Tegretol side effects... couldn't be good ol' Tegretol... had to be the neuro muscular something or other...
kat
poster:headachequeen
thread:5053
URL: http://www.dr-bob.org/babble/20031208/msgs/287824.html