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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 759 to 783 of 1085. Go back in thread:
Posted by jhlsgirl on December 18, 2003, at 7:44:37
In reply to Re: headachequeen, posted by Beck on December 17, 2003, at 22:28:44
> Ok, so two questions,
> 1. Since I only take 1/2 of 25 mg. then after 2 weeks take 25 mg. and increases by 1/2 25 mg. every two weeks, will I most likley not lose weight until I'm at a high dose?(Which I dont plan to take moere than 100mg.)
> 2.Do the cognitive effects occur t higher doses?I second those questions please!
Posted by jhlsgirl on December 18, 2003, at 14:12:58
In reply to Re: Topamax Experiences?, posted by chik on November 14, 2003, at 21:03:25
ahhh today i have a nagging headache and im sleepy and i just dont feel good!! topamax heaven right??
Posted by jtevers on December 18, 2003, at 15:49:32
In reply to Re: atkins, topamax ... stones and wt. loss?, posted by LBcats on December 17, 2003, at 20:53:17
LB and to whom it concerns:
i have recently added topa to my regimen and am at only 50 mg. now...i am experiencing little to no side effects including the weight loss, but haven't expected to.
can you confirm that the weight loss may begin at 100-200mg.? and is this when i may also expect to experience "stupification?"
i wonder whether the weight loss is dose-related or continues once begun whether the dose is increased or not? is it necessary to continually increase the dose in order to see greater and greater weight loss results?
LB, i understand you personally loss 20 lbs. while taking 300mg., is this the point at which, for you, the other side effects became unbearable? do you believe if you continued at 300mg. you would have continued to lose or that it would have been necessary for you to increase your dose to see future weight loss. and, i'm sorry, i forget whether you had been introduced to topa. as a mood stabilizer or a solution to weight loss or both?
i have gained 60lbs over 3 years while being treated with an antipsychotic and a mood stabilizer for bipolar...i would love to lose at least 40 lbs on topa. treatment as this weight has not responded to exercise or diet...i understand this may mean a pretty high dose of topa. IF there is a dose-related response to its weight loss effect??? ... can anyone relate ... have any horror or success stories, i would love to hear from you.
thanx ... jtevers
Posted by headachequeen on December 18, 2003, at 15:54:02
In reply to Re: headachequeen, posted by Beck on December 17, 2003, at 22:28:44
> Ok, so two questions,
> 1. Since I only take 1/2 of 25 mg. then after 2 weeks take 25 mg. and increases by 1/2 25 mg. every two weeks, will I most likley not lose weight until I'm at a high dose?(Which I dont plan to take moere than 100mg.)
> 2.Do the cognitive effects occur t higher doses?I can only speak to my own experience with the Topomax of course, but I followed a slow titration, starting with 25 mg in the evening and working up to 200 mg as I said, then adding 25 mg in the morning and working up to 200 mg in the morning...
officially I am on 200 mornings and evenings now... but I am thinking of changing to 300 mornings and 200 evenings (slowly of course) and dumping one hundred of the tegretol...
thinking about it...
no one seems to want to take responsibility for the change and no one seems to want to be in the office until some time in january and I am TIRED of the Tegretol side effects but I know, that is another board.... sigh...
at any rate, at this point, I have NO cognitive or speech impairment from the Topomax...
there is no longer that slowness or search for words or thoughts... and no longer the slurred speech either... and that used to really bother me...the weight loss started as soon as I started the Topomax.. I know, people here are tired of hearing that I lost three pounds the first week on Topomax, but it happened and it blew me away...
I forgot that the idea was to stabilise the seisure activity (stabilise it? to stop it !!!!) and to hope the side effect would be to stop the migraines and it did that too...at the present time I am comfortable with the Topomax...
Yes, I drink loads of water... but then I have been on Tegretol for ages and been warned that I have to drink water by the gallon with it too... then along came Topomax and the same warning... then along came the Prednizone and antibiotic because of a major asthma attack and more water...
and I had to wonder, did the drink plenty of water warning mean more water or would the same plenty of water suffice??? so I drank an extra two glasses a day in case... have to keep all these medications happy...the past two days or so I have been doing some serious reading about hypomania and wondering why the psychiatrist could not have taken five minutes to explain himself as well as people here did and as well as the internet has done...
and why is it that he gets paid so much better than the psychologists??? and why does OHIP recognise psychiatry but not psychology??? enquiring minds want to know...
It gave me something to think about and kept me from hiding in the darkened room for a while, so that was a positive thing...
and while I was doing all this wondering I wondered if it might not help to change from Tegretol and its incredible side effects to the extra Topomax to which my body seems to adjust comfortably and hope that it would help my mind adjust to the depression that I am told I do not have...
oh a lot of wondering going on here...
I keep looking at the prescriptions for effexor and zyprexor which I have not taken to have filled as yet... and which I do not want to have filled if I can help it...
I was lucky once and came off them cold turkey; I was too naive and stupid to realise it was not supposed to happen that way... I may not be that lucky a second time...
so I would prefer not to start...
kat
Posted by headachequeen on December 18, 2003, at 15:59:15
In reply to Re: topa. wt. loss dose resp. ..help. » LBcats, posted by jtevers on December 18, 2003, at 15:49:32
> i have recently added topa to my regimen and am at only 50 mg. now...i am experiencing little to no side effects including the weight loss, but haven't expected to.
This is the dosage at which I experienced the side effects... it must be a redhead thing LOL
I mean we always seem to do things in reverse and most intensely...
at 400 mg I seem to have stopped the weight loss; have stayed at the same weight for about a month and seem to see no more loss in sight...
and the side effects don't seem to be any real problem any longer although I confess that I am drinking a lot of water to make sure that there are no kidney stone problems rearing their heads...
and I am still angry that neither the neurologist nor the pharmacist warned me of any side effects..(oh the neuro told me about the weight loss and the migraine side effects) but I had to learn of the side effects here and from my sister-in-law...
and it was my pharmacist who told me that zyprexa would cause weight gain... the doctors never warned me at all... of course they might have realised I would have refused to take it????
kat
Posted by mags on December 18, 2003, at 17:56:46
In reply to Re: topa. wt. loss dose resp. ..help. » LBcats, posted by jtevers on December 18, 2003, at 15:49:32
I have read somewhere, it was a medical report, (sorry can't tell you were it was)that most, by the time they get to 200 mg, lose approx 20 % of their weight. As far as stupification I understand if you titrate slowly this should not be a problem. I went slow and it has not been a problem for me. I have also lost 30 pounds BUT I have also been on the Atkins diet. I am now at 75 mg planning to get to 200 mg.
Maggie
Posted by Beck on December 18, 2003, at 22:04:13
In reply to Re: topa. wt. loss dose resp. ..help., posted by mags on December 18, 2003, at 17:56:46
> I have read somewhere, it was a medical report, (sorry can't tell you were it was)that most, by the time they get to 200 mg, lose approx 20 % of their weight. As far as stupification I understand if you titrate slowly this should not be a problem. I went slow and it has not been a problem for me. I have also lost 30 pounds BUT I have also been on the Atkins diet. I am now at 75 mg planning to get to 200 mg.
>
> MaggieBut it inno way makes you gain weight right?Because I gained a couple since starting Topamax, which is fine, but if I'm gonna gain more because of it I quit. I can't afford to lose weight, I can afford to gain, but if I gain more than 5 pounds I get so incredibley depressed most antidepressents wont help. I really wish this medicine didnt effect weight eitherway.
Posted by Sooshi on December 18, 2003, at 23:12:02
In reply to Re: headachequeen, posted by Beck on December 17, 2003, at 22:28:44
>Ok, so two questions,
1. Since I only take 1/2 of 25 mg. then after 2 weeks take 25 mg. and increases by 1/2 25 mg. every two weeks, will I most likley not lose weight until I'm at a high dose?(Which I dont plan to take moere than 100mg.)
2.Do the cognitive effects occur t higher doses?<Ok, maybe I can help answer these questions.
1. I'm not sure it matters what dosage you are on to begin experiencing weight loss with Topamax, because everybody metabolizes medications so differently...BUT, having said that, it does seem that, on average, around 100-200mg is where most seem to start experiencing some weight loss. I myself began losing at around 75-100mg. I rapidly lost 7lbs the first two weeks after passing the 75mg mark, and an additional 7lbs since reaching 200mgs. I just simply lost my appetite and desire for food, and felt more satiated a lot quicker when eating, and this didn't begin until around 75mg. Might be more or less for others. However, I have reached a plateau, and haven't lost any more weight in the last week or so, but haven't gained any either.
2. The cognitive effects didn't start for me until my dosage got, again, around 100mgs. The biggest problem I had was recalling the simplest of names, tasks, etc. I would also just stop in the middle of a sentence and completely forget what point I was trying to make...and this would happen frequently, not just occasionally. I have now been on 200mgs for over 2 weeks, and these cognitive problems are starting to clear up, and are not bothering me as much.
Well, I hope this has helped a little. Just my 2cents.
Posted by beck on December 18, 2003, at 23:26:36
In reply to Re: Two Questions » Beck, posted by Sooshi on December 18, 2003, at 23:12:02
> >Ok, so two questions,
> 1. Since I only take 1/2 of 25 mg. then after 2 weeks take 25 mg. and increases by 1/2 25 mg. every two weeks, will I most likley not lose weight until I'm at a high dose?(Which I dont plan to take moere than 100mg.)
> 2.Do the cognitive effects occur t higher doses?<
>
>
>
> Ok, maybe I can help answer these questions.
>
> 1. I'm not sure it matters what dosage you are on to begin experiencing weight loss with Topamax, because everybody metabolizes medications so differently...BUT, having said that, it does seem that, on average, around 100-200mg is where most seem to start experiencing some weight loss. I myself began losing at around 75-100mg. I rapidly lost 7lbs the first two weeks after passing the 75mg mark, and an additional 7lbs since reaching 200mgs. I just simply lost my appetite and desire for food, and felt more satiated a lot quicker when eating, and this didn't begin until around 75mg. Might be more or less for others. However, I have reached a plateau, and haven't lost any more weight in the last week or so, but haven't gained any either.
>
> 2. The cognitive effects didn't start for me until my dosage got, again, around 100mgs. The biggest problem I had was recalling the simplest of names, tasks, etc. I would also just stop in the middle of a sentence and completely forget what point I was trying to make...and this would happen frequently, not just occasionally. I have now been on 200mgs for over 2 weeks, and these cognitive problems are starting to clear up, and are not bothering me as much.
>
> Well, I hope this has helped a little. Just my 2cents.It does, thanks!
Posted by mags on December 19, 2003, at 12:20:11
In reply to Re: topa. wt. loss dose resp. ..help., posted by Beck on December 18, 2003, at 22:04:13
Beck, I haven't read or heard anywhere that anyone gains on this med.
Maggie
Posted by headachequeen on December 19, 2003, at 13:09:54
In reply to Re: topa. wt. loss dose resp. ..help., posted by mags on December 19, 2003, at 12:20:11
> Beck, I haven't read or heard anywhere that anyone gains on this med.
>
> Maggienor have I, in fact, when my neurologist suggested Topomax as an antiseizure med because it had the side effect of dealing with migraines he mentioned that it was known to cause weight loss....
kat
Posted by Karen_kay on December 19, 2003, at 16:39:23
In reply to Re: Two Questions » Beck, posted by Sooshi on December 18, 2003, at 23:12:02
I had similar experiences. Except my weight loss didn't start until I hit the 200 mg mark. And the cognitive problems for me lasted about 2 months. I even had problems confusing the letter "I" with the letter "E". My Pdoc continued to deny that Topamax had anything to do with it. I continued to explain that "I didn't fall down and hit my head, so the only logical explanation to me is Topamax". I've been on 300 mgs,and I began Topamax late in the summer, early fall, and I have lost over 20 lbs. And it has been continuous. But, it could just be because I'm no longer on Lithium and no longer depressed. The side effects have diminished almost completely! I still get heartburn occassionally, but that is about it. No more cognition problems. I'm not sure if you'll lose weight at 100 mgs, everyone is different. But, your chance of side effects is lower at a lower dosage.
Posted by jtevers on December 22, 2003, at 20:22:31
In reply to headachequeen » jtevers, posted by headachequeen on December 18, 2003, at 15:59:15
> at 400 mg I seem to have stopped the weight loss; have stayed at the same weight for about a month and seem to see no more loss in sight...
headachequeen,
i wondered, because it seems to be different for all, at what dose your weight loss began?
and whether you are (and forgive me if i am being redundant) still taking the offending med., i believe it's zyprexa you are on?
i wondered whether you consider increasing the dose of topamax to see whether your weight loss would increase, or are you content? is it bearable (the side effects of the topamax)?
how much weight have you lost by the time you reached 400 mg.?
thank you for your help.
jtevers
Posted by jtevers on December 22, 2003, at 20:38:18
In reply to Re: topa. wt. loss dose resp. ..help., posted by mags on December 18, 2003, at 17:56:46
> I have read somewhere, it was a medical report, (sorry can't tell you were it was)that most, by the time they get to 200 mg, lose approx 20 % of their weight. As far as stupification I understand if you titrate slowly this should not be a problem. I went slow and it has not been a problem for me. I have also lost 30 pounds BUT I have also been on the Atkins diet. I am now at 75 mg planning to get to 200 mg.
>
> MaggieMaggie,
forgive me maggie and all i don't mean to be a script hound and realize i am currently posting to several people on the same thread ... i know no other way of keeping it public and private, general and concise...
maggie, you and i seem to be in the same boat and can learn a thing or two from our predecessors. i too have just reached 75mg. and while i haven't even lost my appetite, let alone a pound or two, i recently experienced "brain freeze" that went away slowly but hasn't returned... the phone rang and i could not figure out what to do next ... i had to work myself through the motions ... i could laugh about it now.
i, too had lost 30 lbs early this summer on atkins and remain on the diet to this day... i, unlike you, have quite a way to go.
Posted by jtevers on December 22, 2003, at 20:49:39
In reply to Re: Two Questions..Beck, posted by Karen_kay on December 19, 2003, at 16:39:23
karen_kay,
am i correct in assuming, since you stated you started topamax in the late summer that you had cognitive problems despite having titrated slowly?
i mean to say,did you run into these harrowing side effects regularly even though you stepped-up the topamax slowly and over many months?can i also assume you will maintain your present dose of 300 mg. and that it is bearable? any interest in increasing the dose to lose any more weight?
Posted by Karen_kay on December 22, 2003, at 22:19:05
In reply to Re: topamax and cognitive effects » Karen_kay, posted by jtevers on December 22, 2003, at 20:49:39
Hiya! I just typed out a detailed account and my computer froze up and I lost it all :( Crap! I will try to be as concise this time around!!!
> am i correct in assuming, since you stated you started topamax in the late summer that you had cognitive problems despite having titrated slowly?<<<OK, I tirated at a normal rate of speed I believe. But, I got the the 200 mg mark and that is where I began losing weight. But, it was only a little bit. And I had slight side effects when I first began taking Topamax. Such as tingeling and numbing in the neck and feet. And I still find my feet falling asleep to this day quite often. And I had heartburn on a daily basis (which I still get on a weekly/biweekly basis). But, I found that after a month at the 200 level mark I still didn't see an improvement in my moods (I'm dx with Bipolar I Disorder), so my Pdoc upped my dose to 300 mgs. At the 200 mark, I had some cognition problems. I would drive past the street to my house on a fairly regular basis and not realize it until I was about a block away. And new concepts I learned in class just weren't sticking. Previously, I could learn at a rapid pace. I could take a test with little to no studying and walk away with at least a B. At the 200 mg mark, even while studying 3 hours for a test, I was lucky to earn a C. Talk about frustration. And this is a 200 level college course. Anyhoo...... (Just trying to show you how it affected me)
I went up to the 300 mg level and I noticed that while taking notes in class I frequently confused the letter "e" with the letter "i". To the point that I had to sit and think for a good 30 seconds which letter was correct. And I couldn't spell anything correct. And it would frustrate me, so I would try to figure out the correct spelling. Also, I was taking a foreign language. IMAGINE! So, my problems were with the alphabet :) But, they were severe for quite a while.
> i mean to say,did you run into these harrowing side effects regularly even though you stepped-up the topamax slowly and over many months?
<<<I didn't tirate up over several months. It's jsut that my original dose of 200 mgs didn't work out well enough, so I had to have it raised to 300 mgs. Sorry if my previous post/s were misleading. And the cognitive side effects lasted for about 2 months. They were rough at the 200 mark, but became almost intolerable at the 300 level. But, I stuck it out. And it is SO worth it now. My mental comprehension is back.
> can i also assume you will maintain your present dose of 300 mg. and that it is bearable? any interest in increasing the dose to lose any more weight?<<<It is more than bearable! I will maintain my dose of 300 unless my moods become unstable and my Pdoc sees the need to raise my dosage once again. The heartburn still returns, as does the numbing, but I can deal with that. The cognitive effects do go away! I promise, you just have to stick with it!
As for going up to lose weight.... I'm pretty happy with my weight where it is. I'm not all that sure that Topamax is the reason I've lost the weight, but I'm not sure it isn't either. I think that being off of Lithium has something to do with losing some of the weight. I would be happy losing 5 or 10 pounds, but my main goal with Topamax is to keep my mood stable. The fact that it doesn't cause you to gain weight is a main reason I suggested it to my doctor. I was tired of him suggesting all sorts of drugs that kept packing on the pounds. I was depressed enough, I didn't need my weight to be an added factor.I read some of your previous posts. I'm sorry that you too are experiencing some of the cognitive problems with Topamax. But, if you stick it out, they will go away. It just takes some time.
Posted by headachequeen on December 22, 2003, at 22:28:08
In reply to Re: topamax weight loss » headachequeen, posted by jtevers on December 22, 2003, at 20:22:31
> > at 400 mg I seem to have stopped the weight loss; have stayed at the same weight for about a month and seem to see no more loss in sight...
>
> headachequeen,
>
> i wondered, because it seems to be different for all, at what dose your weight loss began?
>
> and whether you are (and forgive me if i am being redundant) still taking the offending med., i believe it's zyprexa you are on?
>
> i wondered whether you consider increasing the dose of topamax to see whether your weight loss would increase, or are you content? is it bearable (the side effects of the topamax)?
>
> how much weight have you lost by the time you reached 400 mg.?
>
> thank you for your help.
>
> jtevers
>Since I started on Topomax I have lost between 63 and 65 pounds...
I began to lose weight in the first week... that was at the 25 mg dosage...
and that was an incredible boost to the morale I must add.. and I needed it believe me...
I am not on zyprexa and I am trying me darnedest to stay off the wretched stuff, that and effexor, although my psychologist has suggested it might be a good idea to talk to my doctor about going back on both (low doses of course) to try and achieve some sort of balance or control over this rampage of emotions that is according to the psychiatrist not depression...
he also suggested that if I cannot sleep then I should see about going back on the immovane...I certainly would consider an increase in the Topomax... and am hoping to be able to have the neuro and my own doctor to agree to an increase in replacement for some of the Tegretol.. the side effects of the Tegretol, to my mind anyway, are much harder to live with and deal with, so I would like to take less of it and replace it with the Topomax...
maybe it is that old redhead thing, but I am not having that hard a time with the Topomax at all...
I am drinking gallons of water... and taking the vitamins and the biotin... and enjoying being migraine-free...
so, that is definitely a plus...I have also noticed of late that the size ten slacks and jeans and skirts are too loose in the waist... so maybe there is something still happening...
and I am still happily resistant to sweets and chocolate... used to believe that was a separate food group... don't even have any in the house for Christmas... guests will not be offered any this year...
Come to think of it, there is no candy... not even a candy cane on the tree...
If I don't want it, no one else gets it LOLI have learned so much here about dealing with side effects and potential side effects that an increase in the Topomax does not intimidate me...
and I have learned so much elsewhere about Tegretol that the dosage I am on now terrifies me...
so an increase in Topomax does not bother me...
I still have a much decreased appetite from before but just don't seem to be losing the weight as I did earlier... and I want it all and I want it now ....
greedy little brat, aren't I?kat
Posted by Karen_kay on December 23, 2003, at 1:44:59
In reply to Re: topamax and cognitive effects » jtevers, posted by Karen_kay on December 22, 2003, at 22:19:05
I guess I have noticed a decrease in my appetite since starting Topamax. But again, I'm not sure if it is because I am not on Lithium or solely from Topamax alone. It is hard to tell. But, typically I eat one meal a day, and it isn't until between 6-8 pm. Usually I can't tolerate food before noon anyway (even when I was on Lithium), but I don't snack or overeat anymore. I did notice that when I started (esp. 300) I couldn't finish restaraunt portions. Not even half of them. And, I'm almost never hungry. The only way I know to eat is when my stomach begins growling. That's not always pleasant, but I'll take that any day compared to being overweight!
I'm not purposely trying to be vague :) I just don't have a very good memory! But, feel free to ask any questions and I'll try my hardest to answer with the best of my ability. Oh, and my poor memory has NOTHING to do with Topamax. It has everything to do with other factors... PROMISE :)
Posted by Beck on December 23, 2003, at 17:03:15
In reply to One more thing..., posted by Karen_kay on December 23, 2003, at 1:44:59
Alright, I experienced a side effect yesterday, can anyone PLEASE tell me it wont get worse:
I set up a meeting with one professor but when it came time for it I went tto a different professors office, he ofcourse wasnt there so his secretary called him at home and he came to meet me. So I felt embaressed that I mixed up the two professors,stressed that I was late for my real appointment, and mad because the Topamax made me do it. How do I know it was because of Topamax? Well, In the 19 years I've been in school, this is the first time I ever missed an appointment by lack of remembeering.
I read about people having cognitive problems, but didnt think it'd haoppen to me because I take a low dose, but it did, what I wanna know is will it just get more and more as I take larger doseage?
Posted by Karen_kay on December 24, 2003, at 9:08:21
In reply to Re: One more thing..., posted by Beck on December 23, 2003, at 17:03:15
What dose are you on? In my experience I would say that it may get worse as your dose goes up. I'm sorry :( But, IT DOES go away! I had similar experiences. I'd miss the road I live on- on a daily basis and drive right past it. My problems started at 200 and got worse at 300 mgs. But, they went away after about a month. It helps to keep a planner. And, I mean I had to write EVERYTHING down. But, it helps! Hang in there! Karen
Posted by headachequeen on December 26, 2003, at 21:51:10
In reply to Re: One more thing... » Beck, posted by Karen_kay on December 24, 2003, at 9:08:21
Bridgey... I cannot find the post with the aim info on it... can you resend it to me..
my aim id is Tegreinekat... and thanks....many times
Posted by dragonfly25 on December 27, 2003, at 23:42:46
In reply to Re: effects of topamax, posted by Nycole on July 16, 2003, at 16:22:05
i started losing my appetite at 25-50mg can't remember, but i just started to forget to eat- not good. i noticed the stupidness at 50mg and i started feel really empty headed at 75mg- so i am back to 50....but after reading the posts i think i am going off the drug!
> Hi everyone! In a lot of the past posts, people talk about the cognitive side effects, such as the "stupids", memory loss, blurry vision, etc, etc. Well, I have been on the Topamax for a month now and luckily I haven't had any of those side effects yet. BUT, I have not had any of the weight loss effects either, which, besdies my terrible depression is a huge reason I am on Topamax in the first place. I really want to increase my dosage to 200 mg. so that I can have the weight loss, but I don't want the cognitive effects. So, can anyone tell me what dose they were on when they started having the cognitive side effects and what dosage they were on when they had the weight loss effects? Thanks!!
> Nycole
Posted by headachequeen on December 28, 2003, at 9:36:52
In reply to Re: effects of topamax, posted by dragonfly25 on December 27, 2003, at 23:42:46
> i started losing my appetite at 25-50mg can't remember, but i just started to forget to eat- not good. i noticed the stupidness at 50mg and i started feel really empty headed at 75mg- so i am back to 50....but after reading the posts i think i am going off the drug!
I think you are reading only the negative and fearful posts...
I too had some of the negative side effects, but learned to counter them and have had a good experience with topomax...the side effects of the topomax can either be overcome... drink lots of water, take vitamins and supplements, and so on...
or they will pass...often the side effects occur because you are increasing the doses too quickly... and your body has not had time to adjust... the schedule I was given was a suggestion, I was told to follow it loosely, but that if I was not ready to move to the next dose to wait a week or two... to listen to my body... and that is important
interesting sidebar to all this...
I have been toying with the idea of increasing the dosage of the topomax and decreasing the dosage of tegretol whose side effects I am unable to counteraffect... and whose side effects do not go away after time... I have been on Tegretol for over two years now and still have the side effects that accompany it and they are most dis-comforting (arrgghhh never thought I would use a non-word like that)
This Christmas, a time that is always an extreme positive in our home, was NOT, and we know will not be a positive experience next year, either, no matter how hard we try to overcome it. We downplayed the extreme changes and the stress as much as we could; at one point I had decided to cancel the celebrations entirely. Christmas night, despite the anti-seizure meds, I had a seizure around three o'clock, serious enough that I had to go to emergency.
Here we have a team of doctors supplied to the emerg by a service although a few of the local doctors, my own included spend a day of their own time in the e r - but not during the holidays it would seem...
the er doctor who saw me asked what anti-seizure medication I was on and when I said tegretol rolled his eyes before I could say topomax and asked who my neuro was and if he had come into the twentieth century let alone the twenty-first... I said he had put me on topomax as well and explained why...
he said that was a step forward...
and explained that he had started work toward specialising in neurology until he discovered the sheer addiction of emergency work... and that in his experience topomax had far more to offer..
he agreed that there were side effects and we discussed them and the way to deal with them...sounded like discussions here <g>
but then we discussed the side effects of tegretol and his opinion of it is that it is not effective enough ...
and he suggested that I increase the topomax...
he wrote me a prescription for increased topomax...
increasing it by 25 mg a day for two weeks (sound familiar? <S>) then upping it to 50 until I reach 200 on top of the 200 I already take in the evening... decreasing the tegretol each week by that amount...
by that time I shall still be taking tegretol but only 200 mg... and if that is working then I am to discuss dropping it entirely with my own doctor... or he says to come back and see him...
I have greater confidence in this programme than in the tegritol believe me...
kat
Posted by dragonfly25 on December 28, 2003, at 16:22:34
In reply to bridgey, posted by headachequeen on December 28, 2003, at 9:36:52
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 dragonfly
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
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