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Dr. Bob is Robert Hsiung, MD,
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Posted by Sooshi on February 24, 2004, at 21:08:46
In reply to Re: Topamax Experiences? » sherry gomez, posted by Herspirit on February 24, 2004, at 20:35:30
Hi Herspirit,
I am definately experiencing the same thing, and I take Topamax, 200mg. If I don't drink enough water, which is most of the time, my eyes get too dehydrated, and they feel very dry and blurry. I've seen my optometrist about this and she confirmed it. She gave me some artificial tears to put in them for when they get very irritated, but said the best thing to do it to KEEP YOURSELF HYDRATED. You do not need to stop taking your Topamax, you just need to drink water, water, water if you are taking Topamax!
Hope this helps some,
Sooshi
Posted by Herspirit on February 24, 2004, at 21:41:55
In reply to Re: Topamax Experiences? » Herspirit, posted by Sooshi on February 24, 2004, at 21:08:46
I must admit, I haven't been drinking enough water. I drink, but generally beverages with caffeine in them, coffee and diet iced tea. I'm going to have to make a concerted effort to drink water and like you said, LOTS OF IT! Plus, my kidneys need it too! When you say, lots of it, about how much do you drink in a day, ounces wise?
My optometrist also had me using artificial tears but I would have to be using the constantly for them to do me any good. My eyes only feel good in the shower. The minute I step out, it's back to the blurry, dry feeling.
> Hi Herspirit,
>
> I am definately experiencing the same thing, and I take Topamax, 200mg. If I don't drink enough water, which is most of the time, my eyes get too dehydrated, and they feel very dry and blurry. I've seen my optometrist about this and she confirmed it. She gave me some artificial tears to put in them for when they get very irritated, but said the best thing to do it to KEEP YOURSELF HYDRATED. You do not need to stop taking your Topamax, you just need to drink water, water, water if you are taking Topamax!
>
> Hope this helps some,
> Sooshi
Posted by headachequeen on February 25, 2004, at 9:52:57
In reply to Re: Topamax Experiences? » Sooshi, posted by Herspirit on February 24, 2004, at 21:41:55
>
> My optometrist also had me using artificial tears but I would have to be using the constantly for them to do me any good. My eyes only feel good in the shower. The minute I step out, it's back to the blurry, dry feeling.As Sooshi said, drink lots of water.. the kidneys are at risk from these AEDs ... but if you were told that you need to have plugs put in your tear ducts are you sure it is strictly a reaction to Topomax?
Don't stop drinking the water now... that is vital to counteract other side effects.... at least eight large glasses a day and that is probably not enough and don't be side-tracked by this theory that coffee and salad dressing and whatever substitutes for water... they do not help the kidneys, they actually dehydrate one...
but if your eyes are that dry then you need to see an eye specialist, an opthalmologist... and have this person tell you what you need.. if you are being treated for glaucoma, see your opthalmologist about this dry eye condition...
I have had dry eye for a long time and blocked tear ducts as well...
we always made jokes about it ... people are always described as growing to look like their dogs, instead I took on their ailments, developing dry eye and blocked tear ducts, ailments common to the breed, then they discovered that my eye lid has to have certain corrections, another condition common to the breed I choose, in order to relieve the extreme pressure on my eye (I often think my eye is going to pop out and fly across the room, other times it looks as if it is bulging out a la frog)...
recently a surgeon inserted temporary plugs...what a difference... because of the redhead thing, he would not insert permanent ones but cauterised the tear ducts and it is heaven...
in a couple of weeks he will do the next phase and start on the eye lid reconstruction and then push the eye itself back into place...
in the meantime my eyes feel so different because they are no longer dry and burning ... I do not want to scratch or tear them out...
they irrigate themselves and the topomax had nothing to do with it...
It CAN cause dryness but not to that extreme and it is worth checking in case we are blaming it for something it is not doing...
meanwhile the extra fluids will help overcome the topomax involvement...
as for the feeling that there is a shadowy screen over your eyes... has the opthalmologist checked for cataract???
there is a spidery cobweb effect that accompanies cataract...
and topomax neither hurries it along nor makes it worse...
kat
oh and I ought to add that there is an article in today's paper on the use of topiramates in the treatment of migraines and the great success in the use of topomax ... and my neurologist, as the head of the headache whatsis is quoted, describing it as being a great tool in fighting headaches...
it works for some but not all; some have to give up because of side-effects like tingling and nausea...
some find it cuts the headaches down to one or two a month...
and while it is expensive it is a blessing for those whose lives it changes...
kat
Posted by sickofmyfatclothes on February 25, 2004, at 11:56:48
In reply to Re: topomax » helenag, posted by headachequeen on February 24, 2004, at 14:54:01
> > Topamax has been an excellent mood stabilizer for me. I have been at 300mg since December and because OF the appetite suppression, I am going to have to ask my doctor to decrease my dose. Not that I mind losing the weight, which I continue to do so at 2-3 pounds a week, but because I think it is getting unhealthy to eat once a day. I have literally no appetite all day till the end of the day. Just what nutrition my body is missing is bothering me. At christmas time, I was in a size 10. I am now in a size 6. Yes, yes, as a woman it is so nice to be thin thin...but this is NOT healthy.
> > Anyone who would go on this drug for weight loss only is taking a foolish chance. I may be one of the few people for whom this side effect took by storm, but I stress, SIDE EFFECT. I have also dealt with dry mouth, cognitive problems, and tingling hands and feet.
> >
> >
>
> Isn't it interesting that so many of us find that Topomax leads to one meal a day... and so many of us also find that it leads to an end to cravings of junk food...
> good grief health food fanatics are us...
> but I really think that the statement you made
> > Anyone who would go on this drug for weight loss only is taking a foolish chance. <
> must be repeated again and again...
> I keep hearing of and reading of people who keep taking drugs to try to achieve something from the non-intentional things they are meant to do...
> as it were the accidental things they do...
> and that really frightens me for them...
> yes, I am happy that I managed to lose the weight that other drugs and depression allowed me to gain... but I would not want to be able to take this drug simply to lose weight...
> that to my way of thinking is dangerous... as you term it, a foolish chance and you cannot say it too often or too loudly...
> kat who is now a size ten was once a size four and would like to be a size eight I admit... but will settle for the ten.
>As someone who would be overjoyed at being a size 10, let alone even a 16, I must take exception. When I mean fat clothes, I mean size 26. I DO NOT overeat. I have a metabolism of minus zero. I am a very pretty woman and take care of my appearance, but I CANNOT lose more than a pound or 2 unless I live on an apple and nothing else a day. I walk about a mile aprox. 3 times a week. I am not sedentary.I have 6 dogs and 6 cats. I am busy. I cannot afford, nor would I have gastric bypass surgery. A dear friend died last fall from complications from that surgery. I am slowly building my dosage, as prescribed, with no side effects as yet. Do you still deny that this is a worthwhile try at boosting my metabolism, as the literature has tended to show, given my circumstances? How many meds were discovered for other worthwhile purposes while using for other problems. If I were having adverse side effects, I would stop immediately. NO weight loss is worth that. But I'm not. So is it wrong to try?
Posted by PoohBear on February 25, 2004, at 12:20:41
In reply to Re: topomax, posted by sickofmyfatclothes on February 25, 2004, at 11:56:48
I think that Kat has spoken very well for herself, but if I can put in a word on her behalf, I will at this point...
I have been taking Topamax for the last two months as a mood stabilizer and as a sleep aid. Please note that both of these symptoms are not the primary purpose for which Topamax was formulated, as it is primarily an anti-seizure medication. Somewhere along the way people noticed that it helped with migrains, made people sleepy and decreased appetite. Along with these it has a number of very significant adverse side effects. I'm dealing with the cognitive side effects right now as I'm struggling to type this note...
My pDoc put me on this to offset the difficulty I have in getting a good night of sleep, itself a side effect of Effexor. She also thought it might help counteract the weight gain I've got from Remeron. It really has only helped with moods, so we're going off it and back to Seroquel.
You have my utmost sympathy. I have battled my weight for the last three years, finally losing successfully with Weight Watchers. I am very near my goal now, but am having problems with interference from antidepressents.
Many medications are used for purposes other than for what they were intended. If you decide to get a doctor to prescribe Topamax to help you lose weight, you must do it realizing several things:
1. It will decrease your appetite, but not your ability to eat, so if you eat "by the clock", you will still do so.
2. To get any weight loss benefits you will need to take rather large doses, in excess of 100mg per day, perhaps 200-300mg or more. Do you want the cognitive and other side effects that come with that much of this particular medication?
3. You say you can't afford surgery. Okay. Topamax is NOT available as a generic. Do you have REALLY GOOD INSURANCE? It's VERY expensive, especially at the doseages you'll be looking at and for the length of time you'll need to take it.
4. In the long run, and I mean the LONG run, surgery will be far, FAR less expensive, both monitarily and to your brain chemistry and for side effects. You can bypass your stomach, but Topamax could 'potentially' DESTROY your kidneys. You can live without your stomach, you CAN'T live without your kidneys.
Look at all the alternatives, go into it with your eyes wide open.
All the Best,
Tony
Posted by Sooshi on February 25, 2004, at 15:48:31
In reply to Re: Topamax Experiences? » Sooshi, posted by Herspirit on February 24, 2004, at 21:41:55
Oh, I meant I saw my Opthamologist, not an optomotrist...I don't wear glasses!
I drink a minimum of 6-8 8oz glasses of water a day. I keep a big jug with me all day, and when it's empty, I know I've at least had that much. I try to go beyond that, but rarely make it. I would be in the bathroom every 10 minutes if I did. Weak bladder and all.... All I know is, if I get to drinking below this amount, the blurriness gets really bad and the irritation/dryness is beyond bothersome.
Give the super-water drinking a try, and if that doesn't relieve it, you really ought to have those tear duct thingies checked into!!
Posted by headachequeen on February 25, 2004, at 16:40:31
In reply to Re: topomax, posted by sickofmyfatclothes on February 25, 2004, at 11:56:48
> As someone who would be overjoyed at being a size 10, let alone even a 16, I must take exception. When I mean fat clothes, I mean size 26. I DO NOT overeat. I have a metabolism of minus zero. I am a very pretty woman and take care of my appearance, but I CANNOT lose more than a pound or 2 unless I live on an apple and nothing else a day. I walk about a mile aprox. 3 times a week. I am not sedentary.I have 6 dogs and 6 cats. I am busy. I cannot afford, nor would I have gastric bypass surgery. A dear friend died last fall from complications from that surgery. I am slowly building my dosage, as prescribed, with no side effects as yet. Do you still deny that this is a worthwhile try at boosting my metabolism, as the literature has tended to show, given my circumstances? How many meds were discovered for other worthwhile purposes while using for other problems. If I were having adverse side effects, I would stop immediately. NO weight loss is worth that. But I'm not. So is it wrong to try?
>
I am not sure to begin with if this med boosts metabolism. I would check that aspect if I were you before starting to take a medication that has other side effects... intense tingling, so-called, in the extremities, nausea, kidney involvement, hair damage and even fall-out, eye involvement, and I forget the rest...
I am a very active person... I walk a couple of miles every day, often more than that. Yesterday, for instance, I walked a couple of miles before nine in the morning because it is February and I simply have to walk because I do not want to go back onto those wretched anti-depressants and become a zombie again...
I have worked with my dogs for years doing obedience and agility, and that means a lot of running -- weave poles, tunnels, dog walks, teeter totters, and the like and believe me, that takes a lot of moving around... running and the like...
then I do tracking with the dogs as well...
up hill and down dale...
so I am anything but sedentary but losing weight has not been a factor in my life until recently...
some of it came with the topomax that was prescribed by my neurologist and I think some of it may have come when I tossed out the antidepressants while some may even be a side effect of my new-found sense of self direction, I am not sure but would like to think so...
my metabolism has not changed...
I am still the same person...
my thyroid has been thoroughly screened because the opthalmologist thought that it might be causing some of the eye problems...
the metabolism is still the same one I had two years ago, before I began the topomax experience... the appetite has changed...
the food interests have changed...
I wish I could say like others here that Topomax is helping me sleep...
I still find it almost impossible to sleep at night... although when it is time to stagger out of bed in the morning, I am ready to do my best sleeping... ironic isn't it...
Topomax has not helped me sort out that part of living...
I don't know if it has done anything about stabilising my mood... but there is still time...
it has done a good job of stabilising the epileptic part of my life and eliminating the migraines HALLELUIA on both counts...
and the appetite suppressant part has helped me move from the larger sizes to the sizes closer to the me I used to be; I think and hope this means a return to greater energy to do the things I want to do and need to do...
it is far easier I think for a person my present size to run around the agility course or to follow a dog on a track up a rocky hill and down again, or to climb through a river to get a photograph she desperately wants, or thinks she wants, than it was a few sizes ago... and probably safer too...
as for the cost of gastric bypass... it costs me over 400 dollars a month for the Topomax ... over 4800 a year... and that will increase if the dosage must be increased...
this is not an inexpensive medication...
one needs a good medical plan as has been mentioned...no one is suggesting that anyone needs to be unhappy or suffer overweight ... we are suggesting that there needs to be caution exercised in the approach to embracing a drug as powerful as this as a panacea to all one's problems...
it must be monitored... at least the person using it must be monitored...
I see a doctor monthly; there are regular blood tests; other tests are performed to be sure that the meds are not causing problems that make the cure worse than the disease and the disease is bad enough, believe me...
The neurologist kept regular and frequent checks for the first 18 months and then follows up yearly... more often if there is a need...
and he is checking on the medication and its effects as much as on me and the progress of the disease...
the disease is basically controlled now...
it is the medication that he wants to keep under control at this stage...
that is the message that we are trying to send...
kat
Posted by Herspirit on February 25, 2004, at 19:13:44
In reply to Re: Topamax Experiences? » Herspirit, posted by Sooshi on February 25, 2004, at 15:48:31
> Oh, I meant I saw my Opthamologist, not an optomotrist...I don't wear glasses!
>
> I drink a minimum of 6-8 8oz glasses of water a day. I keep a big jug with me all day, and when it's empty, I know I've at least had that much. I try to go beyond that, but rarely make it. I would be in the bathroom every 10 minutes if I did. Weak bladder and all.... All I know is, if I get to drinking below this amount, the blurriness gets really bad and the irritation/dryness is beyond bothersome.
>
> Give the super-water drinking a try, and if that doesn't relieve it, you really ought to have those tear duct thingies checked into!!
>
>
I see my Opthamologist on March 22 so we'll see what he has to say and what he sees. So far today I have drunk (I think that's the way to say it) 6 8oz. glasses of water and I think I'll at least make it through another. I took a 20oz. bottle and a 16oz. bottle to work with me this morning. I thought it would be difficult for me to drink water but it really isn't. I did miss drinking coffee tonight though. I thought I shouldn't have any though as that would counteract the effects of the water. I'll keep the caffeine for during the day and just make sure I double-up on the water.
Posted by lucy lu on February 25, 2004, at 23:43:41
In reply to Re: Does topamax cause cognitive deficits?, posted by LBcats on December 7, 2003, at 11:01:49
I have spoken to my doc about the speech problems and he said they are a side effect.I stutter or repeater multiple times the last word I said, rather than slur my words. They are related to what helps prevent seizures as how I understood him to explain it to me. It is very annoying to me because when talking to people I will use wrong words all the the time when it is obvious that it is not the word I wanted to use. I will say hammer for screwdriver, rod for reel, lock for key . The tingling/cramping seems to come if I am not drinking enough water. Other beverages are not a substitute. But these nuisences are well worth how well I feel on Topamax for mood stablization compared to probably 12 other meds including a rash from one that almost resulted in a hospitalization.
Posted by headachequeen on February 25, 2004, at 23:58:26
In reply to Re: Topamax Experiences? » Sooshi, posted by Herspirit on February 25, 2004, at 19:13:44
> >
> >
> I see my Opthamologist on March 22 so we'll see what he has to say and what he sees. So far today I have drunk (I think that's the way to say it) 6 8oz. glasses of water and I think I'll at least make it through another. I took a 20oz. bottle and a 16oz. bottle to work with me this morning. I thought it would be difficult for me to drink water but it really isn't. I did miss drinking coffee tonight though. I thought I shouldn't have any though as that would counteract the effects of the water. I'll keep the caffeine for during the day and just make sure I double-up on the water.
>Oh, dear... if one drinks the water, does it really hurt to have the coffee as well???
I hate the thought of giving up my coffee...
want my cake and eat it to syndrome...
kat
Posted by PoohBear on February 26, 2004, at 9:52:45
In reply to Re: topomax » Herspirit, posted by headachequeen on February 25, 2004, at 23:58:26
Kat:
I spoke with my Weight Watchers lecturer about the water vs coffee issue, because WW is big on water as well. She said that for those people that are used to drinking A LOT of coffee each day, it doesn't have as much of a diuretic effect as for someone who rarely drinks it. By the way, this rule goes for any caffinated beverage, i.e., tea, Coke, etc, not just coffee.
Lots of water is supposed to help your system metabolize the fat better and take off the pounds.
I have heard that you should drink half your body weight in ounces of water each day. For me that would be 100 ounces or just a little over 3 quarts. That's a stretch, but I do try to get in about 5 12 oz. glasses of water plus 16-32 oz. of coffee each day. That would top out at 92 oz., not bad...
Does that help?
Tony
> Oh, dear... if one drinks the water, does it really hurt to have the coffee as well???
> I hate the thought of giving up my coffee...
> want my cake and eat it to syndrome...
> kat
Posted by Herspirit on February 26, 2004, at 10:11:57
In reply to Re: topomax » headachequeen, posted by PoohBear on February 26, 2004, at 9:52:45
> Kat:
>
> I spoke with my Weight Watchers lecturer about the water vs coffee issue, because WW is big on water as well. She said that for those people that are used to drinking A LOT of coffee each day, it doesn't have as much of a diuretic effect as for someone who rarely drinks it. By the way, this rule goes for any caffinated beverage, i.e., tea, Coke, etc, not just coffee.
>
> Lots of water is supposed to help your system metabolize the fat better and take off the pounds.
>
> I have heard that you should drink half your body weight in ounces of water each day. For me that would be 100 ounces or just a little over 3 quarts. That's a stretch, but I do try to get in about 5 12 oz. glasses of water plus 16-32 oz. of coffee each day. That would top out at 92 oz., not bad...
>
> Does that help?
>
> Tony
>
>
> > Oh, dear... if one drinks the water, does it really hurt to have the coffee as well???
> > I hate the thought of giving up my coffee...
> > want my cake and eat it to syndrome...
> > kat
>
>
Thanks, PoohBear!
That helps me, tremendously. I was afraid I was really going to have to cut down on the coffee. I did end up drinking 72oz. of water yesterday, which is great for me because I wasn't drinking any before that.Do you have any problem with your eyes?
I'm wondering how long it will take before I will notice (if at all) a change in my eyes after drinking all this water. I might need to drink more than I am drinking. I don't know.
Posted by PoohBear on February 26, 2004, at 14:59:57
In reply to Re: topomax » PoohBear, posted by Herspirit on February 26, 2004, at 10:11:57
Herspirit:
I ahven't had any trouble with my eyes and Topamax except some periods of dryness, but that's fairly normal for me, so I didn't pay any attention to it...
Here's a link I just found on MSN regarding water intake:
http://www.gerd.msn.com/GERDUp2004-2Water.asp
Hopefully it will be helpful to all concerned.
Take care and stay hydrated!
Tony
(AKA, PoohBear)
> Thanks, PoohBear!
> That helps me, tremendously. I was afraid I was really going to have to cut down on the coffee. I did end up drinking 72oz. of water yesterday, which is great for me because I wasn't drinking any before that.
>
> Do you have any problem with your eyes?
>
> I'm wondering how long it will take before I will notice (if at all) a change in my eyes after drinking all this water. I might need to drink more than I am drinking. I don't know.
Posted by jessie77 on February 26, 2004, at 15:47:56
In reply to Re: topomax » Herspirit, posted by PoohBear on February 26, 2004, at 14:59:57
Hi,
this may sound weird, to be complaining about NO side effects, but ive been on topamax for about 5 weeks, one week on 200mg. i feel no different. (i am taking it for my mood as well as seizures). i feel some tingling in my feet, but thats it. my mood feels exactly the same. my doctor also precribed it hoping i would lose the weight from depakote and paxil, and i feel no change in appetite AT ALL. should I ask my doctor to take me up to 300 mg, or do i need to be more patient?thanks in advance for any advice.
jessie
Posted by headachequeen on February 26, 2004, at 18:08:13
In reply to Re: topomax » headachequeen, posted by PoohBear on February 26, 2004, at 9:52:45
> Kat:
>
> I spoke with my Weight Watchers lecturer about the water vs coffee issue, because WW is big on water as well. She said that for those people that are used to drinking A LOT of coffee each day, it doesn't have as much of a diuretic effect as for someone who rarely drinks it. By the way, this rule goes for any caffinated beverage, i.e., tea, Coke, etc, not just coffee.
>
> Lots of water is supposed to help your system metabolize the fat better and take off the pounds.
>
> I have heard that you should drink half your body weight in ounces of water each day. For me that would be 100 ounces or just a little over 3 quarts. That's a stretch, but I do try to get in about 5 12 oz. glasses of water plus 16-32 oz. of coffee each day. That would top out at 92 oz., not bad...
>
> Does that help?
>
> Tony
Tony, it helps greatly... finally I have the info I have been trying to find... thank you!!!
and I have a solid idea as to how much water I need to drink...
there are a couple of these pill bottles that tell me to drink lots of water with these medications... no one bothers to define the amount... and that leaves one drowning in a sea of non-information...
I guess if I were to drink between 70 and 75 ounces a day then I would be doing all right...
perhaps a little extra to be sure that I am taking enough for the other meds... sigh... and an extra sigh or two for good measure...
I still think that we need to be given more information when first we are given these meds...
why do the pharmacists think they have those chairs near the dispensing counters???
and when I read the dispensing fees listed on the containers, I think that at least some of that fee could go toward teaching me how to protect myself... one of the meds I have been taking for years (as in 20) suddenly appears with a sticker warning me not to eat grapefruit or drink grapefruit juice when taking this medication... NOW they tell me????
kat
Posted by headachequeen on February 26, 2004, at 18:16:20
In reply to Re: topomax » Herspirit, posted by PoohBear on February 26, 2004, at 14:59:57
Interesting to note that there are definite ways to know if one is drinking enough, according to that web-site, the urine will be clear or pale yellow if one has had enough of the proper fluids to drink...
certainly a helpful indicator and I would guess that there would be no strong odour either ????
The author goes on to say that the signs of severe dehydration include "lethargy, headaches, dry lips, decreased urination, a burning sensation in the stomach, an abnormally fast heart rate, inability to concentrate and fatigue "
some of these are side-effects of topomax and dear old tegretol... wonder if they are simply related to not drinking enough water?????
the author also points out that severe dehydration can be life-threatening...
now that is something to cheer one's soul...
let us all make a point of having that bottle of water close at hand, sports fans...
kat
Posted by cyndie on March 3, 2004, at 13:07:32
In reply to Topamax Experiences?, posted by Kingfish on January 4, 2001, at 7:29:48
New question:
Is anyone have people tell you your voice sounds different? I can't get anyone to elaborate, but even my friends on the phone are saying, "is this Cyndie?" !!!!!!
Posted by headachequeen on March 3, 2004, at 13:35:14
In reply to Re: Topamax Experiences?, posted by cyndie on March 3, 2004, at 13:07:32
> New question:
> Is anyone have people tell you your voice sounds different? I can't get anyone to elaborate, but even my friends on the phone are saying, "is this Cyndie?" !!!!!!
I don't know about voice changes from Topomax but I do know that when I was tested for myasthenia gravis the neurologist doing the testing asked if my voice had changed recently... my speaking voice is in a lower range than was the case a few years ago... and I told her that the change occurred over a period of time and this was the voice I had been using for about six years perhaps longer...
she nodded rather wisely and said, that is a symptom you know...
but did not say of what... and I am still waiting to fino out of what!!!!
I have been using Topomax for only a year so that is not the culprit and my voice has changed no more in that time... so I cannot help you but if anyone has any answers for me I am consumed with curiosity as to what the symptom points to.....
curious enough to allow the participle to dangle....
kat
Posted by bristol on March 4, 2004, at 1:00:17
In reply to Re: Topamax Experiences?, posted by cyndie on March 3, 2004, at 13:07:32
Cyndie:
I was slurring my words and even using the wrong words ie..instead of buying some lumber, i'd say limber. I'd call my new dog by my old dog's name. I'd say my jeans were too loose when I meant too tight. I was backwards - confused - couldn't find the right words anymore and slurred speech...I ended up becoming numb in my hands and feet - they were ice cold and blue and I was hardly breathing when two friends who had called me asked the very same question - they wondered if I was the person - the person that they knew on the other end of the phone. They came over and found me and I had overdosed on other druges and not even known it b/c i was so confused on topomax. This is my experience. I know we are all different -but I was definitely spacey..
New question:
> Is anyone have people tell you your voice sounds different? I can't get anyone to elaborate, but even my friends on the phone are saying, "is this Cyndie?" !!!!!!
Posted by cyndie on March 4, 2004, at 15:28:44
In reply to Re: Topamax Experiences?, posted by bristol on March 4, 2004, at 1:00:17
> Cyndie:
>
> I was slurring my words and even using the wrong words ie..instead of buying some lumber, i'd say limber. I'd call my new dog by my old dog's name. I'd say my jeans were too loose when I meant too tight. I was backwards - confused - couldn't find the right words anymore and slurred speech...I ended up becoming numb in my hands and feet - they were ice cold and blue and I was hardly breathing when two friends who had called me asked the very same question - they wondered if I was the person - the person that they knew on the other end of the phone. They came over and found me and I had overdosed on other druges and not even known it b/c i was so confused on topomax. This is my experience. I know we are all different -but I was definitely spacey..
>
> New question:
> > Is anyone have people tell you your voice sounds different? I can't get anyone to elaborate, but even my friends on the phone are saying, "is this Cyndie?" !!!!!!
>
>
Great...more to worry about...but thanks for answering! I too am slurring, and am constantly being asked to speak up...I am accusing the world of needing hearing aids! and it's just me! does this ever level off? I am at 50 mg am and 50 mg pm taking it for BPII and hopefully a little weight loss in the bargain!
Posted by headachequeen on March 4, 2004, at 15:40:21
In reply to Re: Topamax Experiences?, posted by cyndie on March 4, 2004, at 15:28:44
> Great...more to worry about...but thanks for answering! I too am slurring, and am constantly being asked to speak up...I am accusing the world of needing hearing aids! and it's just me! does this ever level off? I am at 50 mg am and 50 mg pm taking it for BPII and hopefully a little weight loss in the bargain!
>
I seem to remember reading here on several occasions that these side-effects wear off as the dosages increase.
I am taking 600 mg a day at the present time and have no problem with slurring of speech or the cognitive skills at this point...
however I do notice a problem with hearing when there is a need to filter out background noise...
now, do I blame this on Topomax, Tegretol, or the loss of hearing that came with the mild stroke I had about ten years ago..
the only residual effects of the stroke, brought on by stress and overwork they tell me, were a decrease in hearing and fatigue... used to be able to manage an eighteen-hour day and suddenly found myself tired after an eight-hour day and needing a few catnaps to get through those eight hours...
how life changes when we don't plan for it...
sometimes I don't know what to blame for which problem...
Topomax would be such an easy rug under which to sweep it all <g>
kat
Posted by cyndie on March 5, 2004, at 10:29:54
In reply to Re: topomax and voice changes, posted by headachequeen on March 4, 2004, at 15:40:21
>
> > Great...more to worry about...but thanks for answering! I too am slurring, and am constantly being asked to speak up...I am accusing the world of needing hearing aids! and it's just me! does this ever level off? I am at 50 mg am and 50 mg pm taking it for BPII and hopefully a little weight loss in the bargain!
> >
> I seem to remember reading here on several occasions that these side-effects wear off as the dosages increase.
> I am taking 600 mg a day at the present time and have no problem with slurring of speech or the cognitive skills at this point...
> however I do notice a problem with hearing when there is a need to filter out background noise...
> now, do I blame this on Topomax, Tegretol, or the loss of hearing that came with the mild stroke I had about ten years ago..
> the only residual effects of the stroke, brought on by stress and overwork they tell me, were a decrease in hearing and fatigue... used to be able to manage an eighteen-hour day and suddenly found myself tired after an eight-hour day and needing a few catnaps to get through those eight hours...
> how life changes when we don't plan for it...
> sometimes I don't know what to blame for which problem...
> Topomax would be such an easy rug under which to sweep it all <g>
> kat
>Hi Kat, again, thanks for answering...very sorry about your stroke...nothing seems slight when it is our health, correct? could I please impose and ask your age when that happened???? and may I say wow! did I read this right: 600 mgs a day?!?!? I can't imagine it. BTW, I also take 20 mg of Lexapro. I believe it has contributed to weight gain, so it sort of fights the possible weight loss possibility of Tmax...and so it goes...
Posted by headachequeen on March 5, 2004, at 18:08:33
In reply to Re: topomax and voice changes, posted by cyndie on March 5, 2004, at 10:29:54
> >
> > > Great...more to worry about...but thanks for answering! I too am slurring, and am constantly being asked to speak up...I am accusing the world of needing hearing aids! and it's just me! does this ever level off? I am at 50 mg am and 50 mg pm taking it for BPII and hopefully a little weight loss in the bargain!
> > >
> > I seem to remember reading here on several occasions that these side-effects wear off as the dosages increase.
> > I am taking 600 mg a day at the present time and have no problem with slurring of speech or the cognitive skills at this point...
> > however I do notice a problem with hearing when there is a need to filter out background noise...
> > now, do I blame this on Topomax, Tegretol, or the loss of hearing that came with the mild stroke I had about ten years ago..
> > the only residual effects of the stroke, brought on by stress and overwork they tell me, were a decrease in hearing and fatigue... used to be able to manage an eighteen-hour day and suddenly found myself tired after an eight-hour day and needing a few catnaps to get through those eight hours...
> > how life changes when we don't plan for it...
> > sometimes I don't know what to blame for which problem...
> > Topomax would be such an easy rug under which to sweep it all <g>
> > kat
> >
>
> Hi Kat, again, thanks for answering...very sorry about your stroke...nothing seems slight when it is our health, correct? could I please impose and ask your age when that happened???? and may I say wow! did I read this right: 600 mgs a day?!?!? I can't imagine it. BTW, I also take 20 mg of Lexapro. I believe it has contributed to weight gain, so it sort of fights the possible weight loss possibility of Tmax...and so it goes...
>the dosage had been decreased from 800 mg a day to 400 but had to be upped again unless I wanted to take more Tegretol and that was not a consideration as far as I was concerned!!!!!
As for the stroke, the first, I have had two apparently, occurred when I was 42 --- I was working full time in radio (doing news and open-line talk show) and teaching French and music as well as creative writing at a private school, then in my spare time teaching French and English to students in ninth and tenth grades who could not be in the regular classroom because of emotional problems. There were not many of them thank heaven, only a couple, but the whole thing was simply too much for my system apparently and it let me know by creating this minor stroke... it was interesting in some ways, in others not at all interesting... a few days in hospital and a long recovery time, although I was back at work in a couple of weeks but tired so easily...
and took a long time to recover as I said earlier... as in MONTHS and MONTHS
I still have minimal feeling in the right hand and foot... can stick sharp pin in my right hand and barely feel it in comparison with the left... can stick the same sharp pin in the left side of my face and feel it very clearly and barely feel it in the right side of my face...
another residual effect...
it is never dull being me...
and now here I am with cabin fever... anxious to get out and clamber in the hills and the rocks to take photos and to do all the things I love to do... the surgeon has finally set a date to do the next procedure on my eye... 31 March... I guess that qualifies as before Christmas... I forgot to ask WHICH Christmas...
the stitches come out in early April and then in short order I can use my master eye to use the cameras again... I think... oh joy oh laughter unforseen ...
in this area cabin fever usually refers to winter, but I have a double dose LOL
kat
Posted by rockette on March 6, 2004, at 14:22:33
In reply to Re: topomax...Hair loss!, posted by redscarlet on January 16, 2004, at 18:14:06
I have been using Topamax for about a year and a half. About 3 months ago I noticed a tremendous amount of hair loss. It is continuing!! Help! Any suggestions? I have used a special cream from my hair dresser and am trying 2000mcg of Biotin. (for about a month now---no improvement noted.) Should I quit the Topamax and risks the migraines again???? I don't want to be bald!
Posted by Sooshi on March 6, 2004, at 16:58:45
In reply to HAIR LOSS--HELP needed, posted by rockette on March 6, 2004, at 14:22:33
Oh rockette,
This same thing happened to me with Depakote, and nothing I did stopped the hair loss, except for stopping the drug. And I mean I did everything, including Zinc, Selenium, Biotin, Nioxin and other expensive shampoos, scalp massages, special creams, etc.......even adjusting dosage of Depakote. I just didn't want to give up because Depakote was the best med I had ever taken.The first thing you should do is tell your doctor, but most likely, if you don't want to lose your hair, you will need to switch meds.
Maybe, though, someone on this board has successfully been able to save their hair while staying on their med??? Anyone????
Good luck rockette!!
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