Posted by headachequeen on December 28, 2003, at 17:41:52
In reply to Re: bridgey » headachequeen, posted by dragonfly25 on December 28, 2003, at 16:22:34
> hi kat
> i am sorry to hear about your christmas, glad u are ok
> i always forget to take vitamins and i am not great about drinking water either, but i was not told about any of this by my doctor. i don't think he knows much about the drug. is this really important? do you know if it has an effect on the cognitive problems?
> i take a low dose so i thought it was weird to have side effects.
> and you are right about the negative posts, i hadn't read one positive one yet. but i do have a friend who takes it and she has no complaints.
> thx dragonflyThanks... much appreciated and I plan to get on with my life no matter how long it takes and how much pushing and prodding it takes... and bridgey is there to help I know <s> as is the help from others here and elsewhere...
The only side effect I was told about when I was first prescribed the Topomax for seizures was that a side effect was its ability to deal with migraines... and that was not really mentioned as a side effect... just that instead of increasing my Tegretol as he tore up the scrip (HALLELUJAH!!!) he asked why I had not mentioned the migraines and wrote out the prescription for Topomax... as he handed it to me he warned me that I might not want it as it was known to cause weight loss... well I did think about that for a second or three maybe five...
no longer, I swear....
the pharmacist who is always so quick to sit one down and go over each new med with great and careful instructions and warnings, simply handed me the first container with a photocopy of their schedule (I had mine thank you very much) and the comment that they had never been called upon to issue this drug before... well would that not cause one to do some checking??????????
I had no woarning from anyone....
come to think of it, no one warned me about Tegretol either until after the side effects began to happen...
they were so used to dishing out the stuff that they accept it... when my hands began to tingle and go numb, the neuro said that was normal with tegretol... when my feet started tingling up as far as my knees that was to be expected... when my hair began to fall out, so??? what did I expect? I was taking Tegretol and on it went...
this was normal. If this was normal then why did no one warn me... and why was I not told how to prepare my system to fight it????
In searching for help with it I found this site... and found help for Topomax side effects I had not yet encountered but I was prepared...
and some of the side effects that I had not encountered yet, I was able to use the means of defending against to defend against Tegretol ... oh a little late maybe.. I don't knowbut no one told me a thing in advance about the vitamin destruction.... until Murphia here told us about it... so onto vitamins and supplements I went...
and the water thing... well I was already drinking gallons of the stuff for some other med and I figure the same water works for Topomax????
as for dry eyes? I was born with dry eyes and blocked tear ducts, nothing that Topomax can do there...
with the introduction of Topomax I did notice a decrease in seizures, VASTLY changed from before Topomax and to me that makes it all worth while...YES there was a time of cognitive disarray... and it was upsetting ... but how much was Topomax and how much was Tegretol? I am able to say that with the increased dosage of Topomax... there is still no cognitive problem...
I have also come to associate the tingling with an oncoming seizure... when I am unable to sleep for a night or two as on Christmas Eve and the night before and there is a strong tingling in hands and feet then I know that there is a seizure coming on, just as before Topomax...
I hope that when I get entirely rid of Tegretol and that is my plan when I see my doctor early next month, to have the okay to work my way up to dump the tegretol entirely...It is vital to drink at least eight glasses of water a day... ten if you can do it... and to take the supplements.. biotin and vitamin e with a zinc chaser for your hair, toss in some evening primrose oil or borage oil, CLA is a good supplement too -- exceptionally good for the female side of the equation... the Vitamin B complex is a great one... and Vitamin C is one I cannot recommend enough.... never can I recommend it enough...
these are things that you can do for yourself to help you keep on top of your own life...
then follow the increases in slow increments.. don't go charging up the ladder every few days...
at least a couple of weeks should be the increment break between changes... give your system a chance to adjust... most doctors will give you a schedule and it will say something like two weeks or as you feel comfortable, in other words, you don't have to increase the dosage in two week intervals, but can wait for three if you feel better that way...
There is no hurry...
water, vitamins, and a little exercise, and time...
and try not to be swayed by the negativity...
thank heaven I found the site after I had reached the 400 mg a day... I might have chickened out too... LOL and I might be having seizures seven or eight times a month still... and that is not my aim in life, believe me...
on Tegretol alone I was having seizures, sometimes two a night, as often as that, and was so relieved to reach the the day when I could tell my neuro that I had not had a seizure in three months... the after Topomax time...
Christmas was such a let down, to have that seizure and now to know it could happen again...
when my hands are cold in the out of doors, I am unable to tell if it is Tegretol, cold, or a seizure warning....
and I can't say I like it very much...I do not know why you are on Topomax...
I can only suggest that you give it a chance, and try the alternatives to the side effects that can be found here...
don't panic and don't listen to the negativity...
it really can work...
and it really can be a great help
and the side effects can be beaten...
not like some drugs...
kat
poster:headachequeen
thread:50878
URL: http://www.dr-bob.org/babble/20031225/msgs/294104.html