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Dr. Bob is Robert Hsiung, MD,
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Posted by headachequeen on July 13, 2004, at 13:23:39
In reply to Re: Topamax, posted by bridgey1128 on July 13, 2004, at 11:15:41
> Since I just upped my dosage to the 150mg of Topomax I have noticed the sharp tingling in my right hand. It's the definite needly feeling. It goes away fairly quickly. It normally comes on in the middle of the night.I was thinking that it was because I had slept on it badly because it feels like when you lose circulation and it comes back. That prickly feeling. But then I realized that I hadn't had my hand bent. But it only seems to be my right hand for some reason. My face has the tingles but they are only tingles and not pricklys like in my hand. I thought maybe I shouldn't go up on my meds while I was on vacation but then I had a night terror the first night I was there and I decided...I had better go up! As soon as I upped...no more night terrors. I am worried about the confusion though. I seem to be getting words mixed up more and it worries me. It could also be that I have spent a week with 17 youth and children and it's the "week before" so I am holding out. I am also seeing "floaters" in front of my eyes. Little black dots etc. Is this bad? I have had a headache on the right side of my head behind my right eye but that could also be due to the weather. We have had nothing but thunderstorms and then sun and I am sensitive to the berametric pressure. I wasn't having headaches at the beach and we had nothing but sun down there so who knows but I was having the little floater thingys. I dunno..maybe it's worth being a little crazy than dealing with all these stupid side effects!!!
The side effects do wear off...at least the tingly ones ... from Topomax that is... and it seems even the dread Tegretol can lose that effect eventually even if it does take three or four years sigh...
the floaters come with cataract but I have not heard of them with topomax... anyone with any input here??? one needs to know as I have cataract that is not ready to be dealt with and am told that I am too young to have it anyway... not my fault; I did not do the diagnosis...
and it will be four years or so before it can be removed... so are the floaters part of that problem or are they relevant to the topomax??? or are they some new twentieth century phenomenon???
I know not funny...
but if we do not laugh now and then we will lose our minds...
topomax is one of the best at dealing with headache problems so I think I would ask an opthamologist about the eye-related headache...
just the opinion of one who has had more eye problems than she cares to remember and is enjoying the clarity of vision that follows the surgery and the lack of threat to her vision that goes with it...
and how fast did you go up to 150???
remember we discovered that we have to move up slowly, and some have to move slower than others... a redhead thing <g> perhaps...
and how do you sleep? is that hand under your head or under your pillow or with your head on it and it under the pillow which could contribute to the tingles??? that could contribure
I have always found that the tingly stuff happens in both hands....
but always like to learn more
As was posted yesterday sometimes we have to accept some of the bad to enjoy the good of these things...
and here we do it together...
kat
kat
Posted by bridgey1128 on July 13, 2004, at 18:39:52
In reply to Re: Topamax » bridgey1128, posted by headachequeen on July 13, 2004, at 13:23:39
well oddly enough, the tingling in my hand, the really prickly feeling I felt was when I was lying on my back and my hand was resting on my chest. It wasn't under my head at all. I normally sleep with my hand under my pillow because I sleep on my side. If I had moved at all I would have remembered because unfortunately whenever I move during the night I remember it. Every..single...time.I guess that's why I sleep so hard the rest of the night. When I DO sleep hard I don't move at all. I actually felt it was ok to move up to the 150mg after 2 weeks. I wasn't going to because I was going on vacation but honestly when I woke up in the middle of the night on the first night with a horible night terror because something was coming right at my face and made me sit bolt upright in bed with a scream at the back of my throat...I caught it before it came out...I decided I should probably go on up. I hadn't had the tinglies with the 125mg so I assumed after the 2 weeks that it was ok to go up. If I had had any side effects with the 125 I wouldn't have gone up. I think my body was ready. Anyway, the floaters are worrying me along with this right eye headache. I guess I should go to the Dr or the eye Dr and see if he sees anything. ARRGH. Anyway...
Posted by headachequeen on July 14, 2004, at 12:32:02
In reply to Re: Topamax, posted by bridgey1128 on July 13, 2004, at 18:39:52
> well oddly enough, the tingling in my hand, the really prickly feeling I felt was when I was lying on my back and my hand was resting on my chest. It wasn't under my head at all. I normally sleep with my hand under my pillow because I sleep on my side. If I had moved at all I would have remembered because unfortunately whenever I move during the night I remember it. Every..single...time.I guess that's why I sleep so hard the rest of the night. When I DO sleep hard I don't move at all. I actually felt it was ok to move up to the 150mg after 2 weeks. I wasn't going to because I was going on vacation but honestly when I woke up in the middle of the night on the first night with a horible night terror because something was coming right at my face and made me sit bolt upright in bed with a scream at the back of my throat...I caught it before it came out...I decided I should probably go on up. I hadn't had the tinglies with the 125mg so I assumed after the 2 weeks that it was ok to go up. If I had had any side effects with the 125 I wouldn't have gone up. I think my body was ready. Anyway, the floaters are worrying me along with this right eye headache. I guess I should go to the Dr or the eye Dr and see if he sees anything. ARRGH. Anyway...
Bridgey, ma chere amie, I would guess that you need a little longer between increments...
but the floaters worry me...
I have never heard anyone mention them in regard to Topomax...
anyone is free to jump in with their anecdotes about floaters here....
but they are linked to cataracts...
as for the headache related to just the right eye...
I would see an opthamologist... not just the optometrist but a doctor who specialises in eye ailments... this may be a topomax adjustment thing but it may not be and why fool around with your vision?
tingles come and go... hair loss can be dealt with by taking supplements and using the shampoos and conditioners that are designed for it such as the Joico one my hairstylist recommends... oops she is no longer a stylist but a designer... have to get the terminology correct... sigh...
but vision, especially when it is not a side effect but a problem of its own, is not to be taken lightly...
all these years that I thought my vision problems were a side effect of epilepsy and expected the right dosage of tegritol and topomax to make them go away, only to discover that they were nothing at all related, but were problems of their own and were going to make me lose my sight if I did not get help and get it quickly...
good grief, says my inner self, what else can go wrong????
It is not worth wondering about... asking a doctor is simply practical
in the meantime, try cutting the increase by half... what if you cut back from a 25mg increment to half that??? or as close as that can be managed??? see if that makes it change...
the terrors have to be banished and this seems to help in that respect, so deal with them and work up to the larger dosage and see if that deals with the tingling and look into the floaters...
An optometrist will tell you if the floaters are related to serious eye problems and refer you to an opthalmologist... that is how I was helped...
asked my doctor who said it was not his field to see an optometrist who sent me to the next level who sent me to the really high-powered surgical specialist...and eight or nine, I have lost track, surgical procedures later, I have no more problems other than the cataracts that I am too young to have and that are not ready to be dealt with... hence the floaters that occur every so often and the spider-web-effects on occasion...
but no more seeing things in sepia tones and no more pressure on my eyes and no more feeling as if someone is trying to drive a spike from the top of my skull through my right eye -- what a relief that is...
kat
Posted by bridgey1128 on July 14, 2004, at 12:59:08
In reply to Re: Topamax » bridgey1128, posted by headachequeen on July 14, 2004, at 12:32:02
well I am also wondering if the headaches are also due to this is the week before my period which is also common..the headaches also come with weather changes which we have had so I have no idea. The floaters have gone away from what I can tell so that is good and so has the sharp tingling. It's time for an eye appointment anyway so I will tell him about it when I go. The only way the night terrors go away is staying at this dosage. If I go back down they will return. I went up for about two days and went back down because I chickened out thinking I didn't want to risk the losing the eyesight possibility when I was on vacation but then the night terrors set in and I was like....OH CRAP...I had better go up..I can't handle this nonsense...so as soon as I went up they went away. Now the headache is in the middle of my forehead so I am thinking that it's weather related..ugh.....it's hard wondering if it's just general freakiness or side effects...ah the life of a redhead..oh and I just cut off 11 inches a week and a half ago for locks of love :) best thing I ever did..well cutting my hair wise I recommend anyone doing it!
Posted by headachequeen on July 14, 2004, at 15:09:38
In reply to Re: Topamax, posted by bridgey1128 on July 14, 2004, at 12:59:08
> well I am also wondering if the headaches are also due to this is the week before my period which is also common..the headaches also come with weather changes which we have had so I have no idea. The floaters have gone away from what I can tell so that is good and so has the sharp tingling. It's time for an eye appointment anyway so I will tell him about it when I go. The only way the night terrors go away is staying at this dosage. If I go back down they will return. I went up for about two days and went back down because I chickened out thinking I didn't want to risk the losing the eyesight possibility when I was on vacation but then the night terrors set in and I was like....OH CRAP...I had better go up..I can't handle this nonsense...so as soon as I went up they went away. Now the headache is in the middle of my forehead so I am thinking that it's weather related..ugh.....it's hard wondering if it's just general freakiness or side effects...ah the life of a redhead..oh and I just cut off 11 inches a week and a half ago for locks of love :) best thing I ever did..well cutting my hair wise I recommend anyone doing it!
Bridgey, the headaches could be weather-related... migraines are triggered by changes in barometric pressure and can be triggered by changes in weather... and I think that cluster headaches have similar causes...
Since I began taking Topomax I have not had a headache so I have begun to forget all the information that they piled upon me about headaches... and can't say I miss it :)Do check on the eye stuff though when you have the chance...
I was wearing my hair in a chin-length bob and that was a change for me, then one day decided I wanted a radical change of style and had it cut really short and sort of spikey...
and I am enjoying the change totally...
now I am trying to decide what to do with it next...enjoy the change of style...
I remember when I had almost eight pounds of hair cut off... my hair is so thick and it was soooo long...
no wonder I had headaches and neck problems then LOLand if the terrors are gone with the increased dosage then let's deal with the side effects...
we know we can do it... somehow.. together
kat
Posted by summer2002 on July 14, 2004, at 15:26:16
In reply to Re: Topamax » bridgey1128, posted by headachequeen on July 14, 2004, at 15:09:38
OK - I am suppose to be running out the door to pick up daughter but just read all your postings. I am on 400 mgs on lamictal and was on 50mgs of topamax (I had been as high as 200mgs). I stopped the topamax for a couple reasons:
One - I had white floaters or something else in my right side vision. Went to good eye doc and she couldn't find anything wrong. They are still there but not so bad. Maybe I'm just crazy.
Two - on doses above 100 mgs my cognitive functions dropped dramatically - when I wrote I would double up words. No tingling hands.
Three - this is why I stopped. I couldn't take a deep breath. I would inhale but couldn't breath deep enough. I found myself constantly yawning but still couldn't catch my breath. Lung xay ok. Went to heart doc and everything ok. Going to lung doc but of course the symptons have gone away since I stopped the topamax. It could be stress but I have never had these problems before. Has anyone had similar problem?
I wish I could stay on higher dose of topamax - at 200 mgs I dropped a lot of weight.
Have to run...
Posted by Momof4 on July 15, 2004, at 13:47:32
In reply to Re: Topamax, posted by summer2002 on July 14, 2004, at 15:26:16
OK - I am suppose to be running out the door to pick up daughter but just read all your postings. I am on 400 mgs on lamictal and was on 50mgs of topamax (I had been as high as 200mgs). I stopped the topamax for a couple reasons:
> One - I had white floaters or something else in my right side vision. Went to good eye doc and she couldn't find anything wrong. They are still there but not so bad. Maybe I'm just crazy.
> Two - on doses above 100 mgs my cognitive functions dropped dramatically - when I wrote I would double up words. No tingling hands.
> Three - this is why I stopped. I couldn't take a deep breath. I would inhale but couldn't breath deep enough. I found myself constantly yawning but still couldn't catch my breath. Lung xay ok. Went to heart doc and everything ok. Going to lung doc but of course the symptons have gone away since I stopped the topamax. It could be stress but I have never had these problems before. Has anyone had similar problem?
> I wish I could stay on higher dose of topamax - at 200 mgs I dropped a lot of weight.
Have to run...Wow, I read the post as they steadily flow in and see that the side effects are enough to drive some people to just stop taking the medicine. I consider it every day, as I watch my hair go down the shower drain. I have given myself a time frame from today. 4-6 months weighing out the pros and the cons (of course if I don't show any baldness prior to that). From there I will make a long term decision. I have noticed that my night eating has decreased to maybe one time a week, the "tingles" have also subsided for the most part. As for the weight loss, nothing! As a matter of fact between the other medications I am taking and my schedule my eating habits have declined to that grab and go style but my stomach is always saying "Feed me". I wonder if the timing of the medication has any play in the effects. I take my medicine between 7-8 pm, I never feel any different after taking it but maybe I should try to take it a bit earlier. I can say one thing, my moods are up and down like the sun. Seems like if I don't make the extra effort to be somewhat happy today, I won't pull out of it for days. Perhaps 100mg isn't doing the job and my next appt with my dr. isn't after Labor Day due to my schedule. Oh well. Wishing everyone the best of the best.
Posted by headachequeen on July 15, 2004, at 14:28:05
In reply to Re: Topamax, posted by Momof4 on July 15, 2004, at 13:47:32
>
> Wow, I read the post as they steadily flow in and see that the side effects are enough to drive some people to just stop taking the medicine. I consider it every day, as I watch my hair go down the shower drain. I have given myself a time frame from today. 4-6 months weighing out the pros and the cons (of course if I don't show any baldness prior to that). From there I will make a long term decision. I have noticed that my night eating has decreased to maybe one time a week, the "tingles" have also subsided for the most part. As for the weight loss, nothing! As a matter of fact between the other medications I am taking and my schedule my eating habits have declined to that grab and go style but my stomach is always saying "Feed me". I wonder if the timing of the medication has any play in the effects. I take my medicine between 7-8 pm, I never feel any different after taking it but maybe I should try to take it a bit earlier. I can say one thing, my moods are up and down like the sun. Seems like if I don't make the extra effort to be somewhat happy today, I won't pull out of it for days. Perhaps 100mg isn't doing the job and my next appt with my dr. isn't after Labor Day due to my schedule. Oh well. Wishing everyone the best of the best.
>
>Oh, dear, I am trying to put my memory to work here and it is a difficult thing to do...
nothing to do with cognitive skills, more a mood thing...
it seems to me and now I wish I had kept the information sheet the neurologist had given me when he first prescribed topomax but once I got onto the schedult I threw out all that stuff, after all I had it all down pat, right????
Still, I take the topomax at bedtime and once I started taking it in the mornings too, it was as soon as I got up...
and that was the prescribed schedule as near as I can remember...
I do remember that when I started I had the idea I should start it mornings and I was sooooo sick... then I went back and re-read the info...
and there it was: start at night...
so I switched the timing and had no more nausea from it...
all I had to do was follow the directions...
and odd as it may seem, I could differentiate between the constant discomfort and nausea of the tegritol side effect and this sudden nausea that came with the mis-timed topomax...So, try taking the topomax later in the evening... as in at bedtime... I take mine around eleven when I am getting ready to go to bed and read for a few hours...
sleep is often an elusive thing for me... stress and fear of seizures combine to keep me awake until early morning (if I sleep during the morning I won't have nocturnal seizures, right??? yeah, I know...)As for schedule and eating... well, I don't think anyone can have as weird or wild a schedule as mine as I try to fit training and work and writing and time for a husband and all the community involvement that goes with work (goldfish bowl stuff) and practising and and and into my life and still try to have a life myself... I have found it easier not to eat actually I don't really eat breakfast other than coffee; lunch is somewhere around three in the afternoon (today it was a banana and a muffin, yesterday it was a salad with chicken and cheese in it... depends upon the mood and the hunger degree) dinner can be anywhere between seven and morning and may be a serious meal or a scrambled egg...
very often since the topomax I find that I am not even hungry... but when I find that I feel rather weak and dizzy then it is time to eat something...
lately I am on a no-lose time again... and that is not all bad really... but the food patterns are still not great really...
have to set a proper schedule... just as I think that you should too...
your body is hoarding fat cells to make sure it doesn't have a famine coming and that does not help...
most people find that topomax affects the appetite and they find a change in their eating patterns... for me it is a trend away from the junk food of my radio days and depression days and a trend away from eating for the sake of eating... that in itself is a great bonus.
No more finding myself with sandwich in hand thinking that I don't want it, don't like it but eating it anyway...
Some of the other meds may have a weight attraction composite too... perhaps there is an alternative to those meds????kat
Posted by headachequeen on July 15, 2004, at 14:32:32
In reply to Re: Topamax, posted by summer2002 on July 14, 2004, at 15:26:16
>>I am on 400 mgs on lamictal and was on 50mgs of topamax (I had been as high as 200mgs). I stopped the topamax for a couple reasons:
>
> One - I had white floaters or something else in my right side vision. Went to good eye doc and she couldn't find anything wrong. They are still there but not so bad. Maybe I'm just crazy.
>
If there is no reason for these floaters and no damage to the eye, then they may go away on their own... indeed should go away on their own... what did the eye doctor say about them???? and their shelf life????> Two - on doses above 100 mgs my cognitive functions dropped dramatically - when I wrote I would double up words. No tingling hands.
how fast did you increase the dosage??? cognitive skills are impaired by topomax but usually we hear from people so affected, for short term only... I know that I for example found it a problem for a bit but after I quit panicking, it went away and things returned to normal... and that is important for me... believe me!!!!!!!
>
> Three - this is why I stopped. I couldn't take a deep breath. I would inhale but couldn't breath deep enough. I found myself constantly yawning but still couldn't catch my breath. Lung xay ok. Went to heart doc and everything ok. Going to lung doc but of course the symptons have gone away since I stopped the topamax. It could be stress but I have never had these problems before. Has anyone had similar problem?
>Someone else here mentioned that it does affect asthmatics on occasion... but I cannot remember who said it or what the effect was...
where are our super memories??????
we need you.....
> I wish I could stay on higher dose of topamax - at 200 mgs I dropped a lot of weight.again the answer may be to increase at low increments over slow time period.....
kat
Posted by bridgey1128 on July 16, 2004, at 19:05:51
In reply to Re: Topamax » Momof4, posted by headachequeen on July 15, 2004, at 14:28:05
I have found that as I have gone up all of a sudden my FACE has broken out! EGADS! I didn't even have acne this bad when I was a teenager! This is horrid. I am coping best I can and it's just on my chin. no where else really except a tad on my forehead. Since I have gone up to the 150mg I have noticed finally my appetite dropping. It's like, when I DO eat I am hungry but I could go all day and not eat if I didn't happen to think about it. If my stomach grumbles I think..oh yeah I had better eat. I take mine split up. 100mg at night and 50mg in the morning. I have never had nausea with mine at any point. The tingling has gone away but every now and then I see a floaty. The headaches have gone away with the weather so I am assuming that was what it was. I have noticed my anxiety has come back though. Is it because it's the week before you know what? I geuss we shall see. I have been really paranoid this week. It's driving me bonkers. I have some Ativan that I take when I feel that knot in my stomach. Otherwise I feel downright nauseous from that. I can't take it long before it stops working, so I just take it whenever I feel it coming on. I have had some serious anxiety attacks before and they are NOT FUN! I get really moody and I start literally wringing my hands. I had never heard of the losing the hair side effect. I have always shed like a sheepdog so that wouldn't mean much to me. Of course, I have always had plenty to lose though. Anyway, I've rambled enough :) ta ta
Shell
Posted by andie1970 on July 18, 2004, at 15:32:58
In reply to Re: Topamax, posted by bridgey1128 on July 16, 2004, at 19:05:51
I'm so glad to find this string of posts. I started topamax about ten days ago, on 25 mg, then on 50 mg after about 5 days. I felt so great after the first few days, no appetite, and no desire for alcohol! no side effects. what a wonder drug, no head aches. Then the nurse told me to start one in the morning and one at night, and i did, and that's when the terrible heartburn started. I am burping like crazy, icky bile kind of burps which make me feel nauseous. So it's not just that nasty taste in the mouth, but the constant burning. So I began taking them both at night, and taking zantac. It seems to be a little better, but I still am burping, not a bad, but bad enough where it's burning, and feel still nauseated and am wondering if anyone else went through this? Am crossing fingers either it goes away OR can you take something with it at the same time? Can I take zantac at the same time, or calcium magnesium supplement at the same time? I'm wondering if anyone has found anything that would work and I know ginger ale and seltzer used to work for my stomach, but I read that those are horrible with this medication. I've been reading Zonegran has many less side effects, but I'm willing to wait a little longer with this before changing. if anyone has any suggestions, I'm all ears! (all heartburn too!) Thanks!
Posted by heathermom on July 18, 2004, at 16:01:34
In reply to Re: Topamax » luddy, posted by headachequeen on July 13, 2004, at 8:26:13
hello all. i posted here several months ago inquiring about topomax's side effects. i check back regularly, and i have practically every side effect that you all have. i am currently taking 300mg. /day for bi polar disorder. it has worked wonderfully, and the side effects have pretty much subsided. my binge eating has all but gone away. i have not lost any weight, but my weight is steady and under control. (yea!!) i wasn't overweight to begin with, so this is a victory. the tingly feelings are few and far between, and the stupids have faded. one thing i am curious about that i haven't heard anyone mention......
i used to crave junk like the dickens. chips, cake, ice cream, crackers. if it was processed, i wanted it. now, all i want is freah food. fresh fruit, veggies, oh God, i would kill for avacado, or whole milk yogurt!! i go to the whole foods market...i would never go there before. my kids get a candy bar, and i get a banana. and i WANT this! anyone else experiencing this kind of stuff? it's crazy, i tell ya. i just don't know what to think. i go out to eat, and i am voluntarily NOT eating the deep fried stuff, and I DO NOT want to eat at mcdonalds....and that used to be my favorite place. it makes me sick to think of that place now. i would rather stay home and prepare a nice bean burrito.
there, anybody get what i mean???
ok. i hope that made sense. best luck to all of you. i know i kind of left the subject. i'm sorry. happy trails! heather.
Posted by headachequeen on July 18, 2004, at 16:27:44
In reply to Topamax and BAD heartburn, posted by andie1970 on July 18, 2004, at 15:32:58
> I'm so glad to find this string of posts. I started topamax about ten days ago, on 25 mg, then on 50 mg after about 5 days. I felt so great after the first few days, no appetite, and no desire for alcohol! no side effects. what a wonder drug, no head aches. Then the nurse told me to start one in the morning and one at night, and i did, and that's when the terrible heartburn started. I am burping like crazy, icky bile kind of burps which make me feel nauseous. So it's not just that nasty taste in the mouth, but the constant burning. So I began taking them both at night, and taking zantac. It seems to be a little better, but I still am burping, not a bad, but bad enough where it's burning, and feel still nauseated and am wondering if anyone else went through this? Am crossing fingers either it goes away OR can you take something with it at the same time? Can I take zantac at the same time, or calcium magnesium supplement at the same time? I'm wondering if anyone has found anything that would work and I know ginger ale and seltzer used to work for my stomach, but I read that those are horrible with this medication. I've been reading Zonegran has many less side effects, but I'm willing to wait a little longer with this before changing. if anyone has any suggestions, I'm all ears! (all heartburn too!) Thanks!
Oh, dear... this is the thing that several of us... are you there, Bridgey me dear buddy and fellow sufferer <g>????... have been crusading against for quite some time....
such a sudden change in dosage is the worst thing that can happen...
I repeat, WORST thing that can happen and if that is not sufficient warning, then let me say that it is the WORST thing you can do to yourself as you begin the relationship with Topomax, at least, if you want it to be successful...The only successful way to have this stuff work for you and not to have unpleasant if not downright UGLY side-effects, is to maintain at least two week intervals between increases in the dosage... AT LEAST two week intervals...
and most neurologists recommend that one reach the planned maximum for one time of day before starting the other time of day...
oh dear for a writer an English teacher (retired I hasten to insist) that is a terrible explanation...
allow me to rephrase that so it makes better sense...
if there is a planned limit, say 200 mg twice a day, then one is normally told to start in the evening and to reach the goal in the evening before starting the morning dosages...and NORMALLY, the neuro would tell one to proceed at one's own pace.. the two-week increment is to be followed only if one is comfortable...
if one feels that it is too soon to increase the dosage, then one is usually advised to wait a few days, even a week or two, before going on to the next level...I know from bitter and nauseating experience, not to mention ghastly effects such as heartburn that you mention, that starting the morning dosage too soon can be really unpleasant...
take the increases at your own pace, not that set by a nurse...
a nurse for pete's sake????? when did nurses get the right to prescribe meds?????life gets stranger by the moment....
kat
Posted by headachequeen on July 18, 2004, at 16:33:29
In reply to Re: Topamax, posted by heathermom on July 18, 2004, at 16:01:34
> hello all. i posted here several months ago inquiring about topomax's side effects. i check back regularly, and i have practically every side effect that you all have. i am currently taking 300mg. /day for bi polar disorder. it has worked wonderfully, and the side effects have pretty much subsided. my binge eating has all but gone away. i have not lost any weight, but my weight is steady and under control. (yea!!) i wasn't overweight to begin with, so this is a victory. the tingly feelings are few and far between, and the stupids have faded. one thing i am curious about that i haven't heard anyone mention......
> i used to crave junk like the dickens. chips, cake, ice cream, crackers. if it was processed, i wanted it. now, all i want is freah food. fresh fruit, veggies, oh God, i would kill for avacado, or whole milk yogurt!! i go to the whole foods market...i would never go there before. my kids get a candy bar, and i get a banana. and i WANT this! anyone else experiencing this kind of stuff? it's crazy, i tell ya. i just don't know what to think. i go out to eat, and i am voluntarily NOT eating the deep fried stuff, and I DO NOT want to eat at mcdonalds....and that used to be my favorite place. it makes me sick to think of that place now. i would rather stay home and prepare a nice bean burrito.
> there, anybody get what i mean???
> ok. i hope that made sense. best luck to all of you. i know i kind of left the subject. i'm sorry. happy trails! heather.
Heather, personally, I think this IS the subject...
You have persevered with Topomax and found that you got past the side effect stage and into the effect stage...
It is doing the appetite curbing thing...
in that it is curbing your desires or cravings for junk food...
strange isn't it???? I keep wondering about that part of it and which some scientific type person would explain it to me...
why do I no longer crave potato chips and dip???
why do chocolate bars, chocolate cookies, chocolate anythings no longer call my name when I walk past them in stores???
why do I prefer salads with lemon juice instead of those really rich, thick dressings??? for that matter why would I rather have a salad than head for the dessert menu???
I have a lot of questions about this med that I really would like to have answered LOL
I enjoy the fact that it works on the headaches and tempers the effect of the other anti-seizure med, making it work better but I also enjoy eating healthier because I am healthier in other ways... and I am no longer so horridly overweight...but now I would like to know how it works....
and I am so glad it is working for you too and that you hung in there...
glad you are here too...
kat
Posted by bridgey1128 on July 18, 2004, at 18:06:56
In reply to Re: Topamax and BAD heartburn » andie1970, posted by headachequeen on July 18, 2004, at 16:27:44
Andie...I learned the HARD way about going up too soon on the meds and mine was from 25mg to 50mg. Mine wasn't heart burn but I lost my sight!! Now that was a scary side effect. That morning I was fine but the further in the day the less I could see until that night it was like big blobs in front of me. Since it was the weekend I called the Dr on call, who was NOT my Dr, and his advice? STOP THE MEDICATION..YEAH RIGHT! Oh that's the EASY way out. I was not a quitter so I came on here and luckily Kat told me to simply back off for a week or so and it would go back to normal! Well..it worked and when the other side effects wore off I went up. My Dr himself tried to say that he didn't think it had anything to do with the Topomax...WHAT??Yeah right...generally my eyesight just goes in and out like that. Riiiiight. The point is....you will have some SERIOUS side effects if you go up any sooner than 2 or 3 weeks. If the Dr or nurse..I agree with kat I don't think a nurse has any business prescribing medication...tells you otherwise....DON'T LISTEN!!! Listen to your body...go...up....s...l...o...w..l...y or listen to other people who have been there if you haven't had many side effects, because BELIEVE YOU ME! You don't want them! This can be a great medication but it can have some pretty bad side effects if you go up too soon. So good luck! We're all ears :) and good support..oh yeah and pretty good advice..hehe
Posted by headachequeen on July 19, 2004, at 10:36:53
In reply to Re: Topamax and BAD heartburn, posted by bridgey1128 on July 18, 2004, at 18:06:56
> Andie...I learned the HARD way about going up too soon on the meds and mine was from 25mg to 50mg. Mine wasn't heart burn but I lost my sight!! Now that was a scary side effect. That morning I was fine but the further in the day the less I could see until that night it was like big blobs in front of me. Since it was the weekend I called the Dr on call, who was NOT my Dr, and his advice? STOP THE MEDICATION..YEAH RIGHT! Oh that's the EASY way out. I was not a quitter so I came on here and luckily Kat told me to simply back off for a week or so and it would go back to normal! Well..it worked and when the other side effects wore off I went up. My Dr himself tried to say that he didn't think it had anything to do with the Topomax...WHAT??Yeah right...generally my eyesight just goes in and out like that. Riiiiight. The point is....you will have some SERIOUS side effects if you go up any sooner than 2 or 3 weeks. If the Dr or nurse..I agree with kat I don't think a nurse has any business prescribing medication...tells you otherwise....DON'T LISTEN!!! Listen to your body...go...up....s...l...o...w..l...y or listen to other people who have been there if you haven't had many side effects, because BELIEVE YOU ME! You don't want them! This can be a great medication but it can have some pretty bad side effects if you go up too soon. So good luck! We're all ears :) and good support..oh yeah and pretty good advice..hehe
Andie, it is vital to take it slowly as Bridgie says... going up too fast can simply make things impossible... and uncomfortable to put it mildly...
or disastrous ...
increase the dosage no sooner than every two weeks and do not jump around with the times unless you have reached the maximum half doses...
for instance if you are going to be taking 100 mg twice a day and have reached 100 mg in the evening then go to morning for 1m mg... do not bounce from evening to morning and back again...as for nurses suggesting when to take meds...
I have the greatest respect for nurses and the work they do, but they are not supposed to prescribe meds especially this sort of stuff...and I would be very careful, Andie....
kat
Posted by andie1970 on July 26, 2004, at 20:01:50
In reply to Re: Topamax and BAD heartburn » bridgey1128, posted by headachequeen on July 19, 2004, at 10:36:53
Hey there, and thank you so much for your posts! I just wanted to reply that THANKFULLY my heartburn is no longer. YAY! It went away almost a week ago and I feel fine and ready to move on, am only taking 50 mg at night at this point. Hardly any tinglies in the hands and feet anymore either. A little scared at the next 25, but it's been 2 weeks this time since I moved 25 mg, not like the last time moving 25 mg in one week, so maybe it will go better. Again, should I go all at night? All 75? Trust me, it will again be the nurse. The doctor is only in once a week :) Thanks again!!!!!! I love this site, wow.
Posted by headachequeen on July 27, 2004, at 9:41:08
In reply to Re: Topamax and BAD heartburn, posted by andie1970 on July 26, 2004, at 20:01:50
> Hey there, and thank you so much for your posts! I just wanted to reply that THANKFULLY my heartburn is no longer. YAY! It went away almost a week ago and I feel fine and ready to move on, am only taking 50 mg at night at this point. Hardly any tinglies in the hands and feet anymore either. A little scared at the next 25, but it's been 2 weeks this time since I moved 25 mg, not like the last time moving 25 mg in one week, so maybe it will go better. Again, should I go all at night? All 75? Trust me, it will again be the nurse. The doctor is only in once a week :) Thanks again!!!!!! I love this site, wow.
stick to increasing it at night... as my grandfather would have said, learn from the mistakes of others; you don't have time to make them all yourself...when you have reached the half dose total so to speak then go to morning...
as in if the evening total is 200 mg a night, and morning is 200 mg then start morning when you reach the 200 mg at nights...
and do not start the next 25 mg until YOU feel comfortable at this dose... no matter what the nurse says...
just smile and say mmhhmmm as the old Scottish song says and go home and do what your system tells you...and I agree about this site...
it is great...
must get my neuro to join it; he could learn much here...kat...
Posted by bridgey1128 on August 21, 2004, at 9:42:21
In reply to Re: Topamax » bridgey1128, posted by headachequeen on July 13, 2004, at 13:23:39
I have had some seriously bad headaches the past 2 weeks. I am going to the Dr Monday. It started with the floater, which the eye Dr did not see. He also did not dilate my pupil to see if anything else was wrong. I was sort of ticked at him so I did not insist he did so that was probably my fault. I have had sensitivity to light and the headache is only on the right side of my head. Even my teeth hurt. It's like an invisible line or something though. The left side has not hurt unless it was a general weather headache and then Advil would take away the pain on THAT side. Advil, Tylenol and even my Bextra hasn't helped. My back muscles are like rocks. I have gotten my husband to try and massage it but it literally hurts his hands! He says it's like massaging a rock. Anyway, any suggestions or "been there done that" situations? Kat? I know you always have some words of wisdom! HELP!
Posted by headachequeen on August 21, 2004, at 15:10:43
In reply to Re: Topamax, posted by bridgey1128 on August 21, 2004, at 9:42:21
> I have had some seriously bad headaches the past 2 weeks. I am going to the Dr Monday. It started with the floater, which the eye Dr did not see. He also did not dilate my pupil to see if anything else was wrong. I was sort of ticked at him so I did not insist he did so that was probably my fault. I have had sensitivity to light and the headache is only on the right side of my head. Even my teeth hurt. It's like an invisible line or something though. The left side has not hurt unless it was a general weather headache and then Advil would take away the pain on THAT side. Advil, Tylenol and even my Bextra hasn't helped. My back muscles are like rocks. I have gotten my husband to try and massage it but it literally hurts his hands! He says it's like massaging a rock. Anyway, any suggestions or "been there done that" situations? Kat? I know you always have some words of wisdom! HELP!
Oh, Bridgey! this sounds really unpleasant -- to put it mildly...
Topomax is one of the favourite meds to deal with headache problems... and I have never read or heard of it causing headaches... so this would be a new twist if it were...You certainly should have insisted the eye doctor properly check, but you don't need me to tell you that...
is there anything else changed in your life style? diet? exercise levels? other meds? I have been reading a lot lately about meds that interact unfavourably with other meds...
At the moment I am not taking Topomax or Tegretol... have a series of tests coming up on Monday and they told me to quit taking the meds until after the test...
which means then that I have to start over at square one with Topomax...
not sure if I will bother with the wretched Tegretol ...
so I shall be monitoring the results as I start over very carefully...
one thing that has been happening since I quit using the Topomax is a return to headaches... so far nothing totally debilitating, but the nagging ones that will not quit...
perhaps there is enough Topomax stored in my system to calm the headaches??? I know that when dealing with allergens they claim it takes up to three months to get the residual effects out of the system... maybe this is similar???Another thought is to take great care as to what foods you eat if headaches are a problem as certain foods can trigger headache... as can the barometric pressure changes... as if we can control them!!!!
and I have been meaning to mention but kept forgetting that for those who are worried about weight gain, eating an ounce or two of nuts... cashews, pecans, or almonds are the ones that I have seen most often recommended... before a meal helps to curb the appetite...
another suggestion was to have a little olive oil.. a tablespoon or so.. with herbs for flavour, and use it as a dip or spread for a bit of wholewheat bread (white turns to sugar in a flash) and have it as an appetiser, or in this case <g>, anti-appetiser....
it does help...but I am afraid that I cannot help you at all, Bridgey...
have never had the floater problems with the Topomax so cannot draw on any experience or advice that I might have been given...at the moment, I am waiting to see what happens Monday -- another of those sleep-deprived eegs, this time the telemetry version and they told me it would take about six hours... whoopee-di-do-do-DO! No coffee or other stimulants for the next 48 hours... and no sleep from the time I awaken tomorrow until I get to the hospital Monday morning for the test...
then they want me to sleep during it (should not be a problem LOL) and preferably to have a seizure or two during it...
now, if I could schedule the seizures, I would simply not have them...
The suggestion is that I bring a lunch and a book to read in case I cannot sleep (I have seizures only when asleep)Lately the seizures are escalating their attack; the last three or four have begun to be more aggressive... my legs are now moving involuntarily during these episodes...
Such fun....
Bridgey, I am going to ask some of the people I know who are on Topomax about the floaters and headaches... perhaps there will be some answers...
I hope so and I hope even more that this stops for you and soon...kat
Posted by karlak13 on August 21, 2004, at 20:42:49
In reply to Re: Topamax, posted by bridgey1128 on August 21, 2004, at 9:42:21
I took up to 600mg of topamax for migraine and cluster headaches and it didn't help me at all. The only side effect I had from the medicine is that it made me forget everything. I became very stupid. It has that effect on lots of people and is a common side effect. I haven't heard of people getting floaters from them. Why don't you call your pharmacy and ask the pharmacst if that could be a side effect of the medicine or look at the insert if you got one. I hope you feel better soon.
Posted by bridgey1128 on August 21, 2004, at 20:55:38
In reply to Re: Topamax, posted by karlak13 on August 21, 2004, at 20:42:49
Thanks. I have looked up info on the internet and have found that people have gotten floaters from them. I have found that my Pharmacists really don't know a whole lot about it to be honest because it's such a new drug. When I told them what it did to my eyes, made me lose my sight when I went up too soon, they were surprised. My Dr actually denied that the Topamax was to blame and my eye Dr tried to blame it on my contact wear. DUR! I have never had a problem with contacts!!! and I have never randomly lost my vision in both eyes. I just hope this isn't indictative of something much worse. My vision hasn't been blurred, just that floater. But my eyes have been a little more sensitive and it has come and gone. SOmetimes they will be horribly sensitive and then others not so much. I have been really REALLY tired all of a sudden, and it's the END of my period. Usually this happens the week before and the beginning of my period. I slept for 13 1/2 hours last night and woke up feeling like I had been hit by a train. The depression part is just horrid although I don't really feel depressed right now, just tired, worn down and irritable. Anyway, thanks for listening and trying to help.
Posted by headachequeen on August 22, 2004, at 12:54:14
In reply to Re: Topamax, posted by bridgey1128 on August 21, 2004, at 20:55:38
> Thanks... although I don't really feel depressed right now, just tired, worn down and irritable. Anyway, thanks for listening and trying to help.
Bridgey, it is so difficult to get from day to day with so little help out there...
your comments about the pharmacists' lack of knowledge about Topomax reminded me of the total dearth of information I was given when I started taking it... my pharmacist who always lauds the help and information provided to customers... told me nothing about it..
I stumbled upon this dialogue by accident and learned a lot about it and learned still more from my sister-in-law (she suffers a spasm/seaizure problem related to a broken back and Topomax was prescribed to help deal with those seizures as well as the extreme headaches she gets as a result... the spine is supposedly healed, although she has metal rods and pins and binder twine with a bit of chewing gum holding everything together... the pain is so intense on an ongoing basis that she has been prescribed morphine...)but the help that I have found here has been much more useful ... and I have at times shared information from people who have lived it, so to speak, with the pharmacist...
someone has to educate them! <g> so it is up to us... we are after all the ones who need to use this med...as for the doctor and eye doctor trying to find other reasons for the floater and the loss of vision... that is beyond frustrating...
right now my neurologist is trying to find other reasons for the break-through seizures instead of changing the tegretol to another med and I am sure there must be more than one primary anti-seizure med...
it cannot be the fault of the tegretol... he seems to think that this particular med is sacrosanct.
When I mention the side effects from it that plague me, he keeps telling me that they are typical of Topomax ....
except I had the side effects BEFORE I was given the Topomax and they lessened to some degree after I started using it as well...
for that matter, the break-through seizures lessened in frequency and in degree after the Topomax ....
so why not accept the fact that the Tegretol does not work for me???and why are things not simpler???? :( I want it all and I want it gift-wrapped...
kat
Posted by stressed on September 27, 2004, at 12:38:15
In reply to Re:topamax weight loss???, posted by dfwHomer on September 1, 2001, at 14:47:31
When will the Topamax kick in for binge eating? My daughter is taking 50mg per day this week, then 75mg next week and 100mg the next week. I think her doc. is keeping her there. We are hoping she can lose the 30 lbs she gained with SSRI's and the eating(of course) Thanks so much
Posted by bridgey1128 on September 27, 2004, at 14:30:44
In reply to Re:topamax weight loss???, posted by stressed on September 27, 2004, at 12:38:15
WHOAH!!! She had better not do that!!! You have to go up SLOWLY!!! She is in DANGEROUS territory and her Dr must not know very much about Topamax if he is speeding her like a freight train gone mad. She will have more problems than weight gain if she ups it that quickly. Usually you need to go up NO MORE than a 25mg increment every 2 to 3 weeks. She is getting into some seriously dangerous medical problems with her eyes if she doesn't watch it. I literally lost my eyesight going up from 25mg to 50mg after only 2 weeks...I would REALLY reconsider. THat Dr sounds rather reckless and thoughtless. Also, weightloss is very individual. I am takling 150mg and still no weight loss so do not depend on this to be a weight loss drug. Some people start losing weight right away and some never do. PLEASE tell your daughter to NOT LISTEN to her Dr and listen to her body. When the other side effects wear off like the tingling, nausea (some people have) or other things THEN and ONLY then will she know it's safe to go up. DON'T let her risk her eyesight or other kidney or liver problems because she is eager to lose weight that might not come off with this drug. It's not worth the bad side effects from going up too soon too much. BEEN THERE DONE THAT AND NOT GOING TO DO IT AGAIN! I have been on 150mg for quite some time for my bipolar and it seems to be holding steady. The fuzziness is slowly wearing off but that has taken months. Like I said, since this is such a fairly new drug Dr's REALLY don't like to admit they don't know much about it. So tellyour daughter to listen to her body and NOT the Dr!
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